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The Sociology of Health,
Illness, and Health Care

A Critical Approach

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The Sociology of Health,
Illness, and Health Care

A Critical Approach

E I G H T H E D I T I O N

ROSE WEITZ
Arizona State University

Australia ● Brazil ● Mexico ● Singapore ● United Kingdom ● United States

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Printed in the United States of America
Print Number: 01 Print Year: 2019

The Sociology of Health, Illness,
and Health Care: A Critical
Approach, Eighth Edition
Rose Weitz

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In memory of my mother, Lilly Weitz, with love

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vi

Brief Contents

PA RT I Social Factors and Illness 1
Chapter 1 The Sociology of Health, Illness, and Health Care 3

Chapter 2 The Social Sources of Modern Illness 18

Chapter 3 The Social Distribution of Illness in the
United States 46

Chapter 4 Illness and Death in the Less Developed Nations 69

PA RT II The Meaning and Experience of Illness 93
Chapter 5 The Social Meanings of Illness 95

Chapter 6 The Experience of Disability, Chronic Pain, and
Chronic Illness 116

Chapter 7 The Sociology of Mental Illness 139

PA RT III Health Care Systems, Settings, and Technologies 169
Chapter 8 Health Care in the United States 170

Chapter 9 Health Care Around the Globe 195

Chapter 10 Health Care Settings and Technologies 221

PA RT IV Health Care, Health Research, and Bioethics 247
Chapter 11 The Profession of Medicine 248

Chapter 12 Other Mainstream and Alternative Health Care
Providers 276

Chapter 13 Issues in Bioethics 303

GLOSSARY 325

REFERENCES 340

INDEX 381

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vii

Contents

PREFACE xvi

ABOUT THE AUTHOR xxvi

PA RT I Social Factors and Illness 1

Chapter 1 The Sociology of Health, Illness, and Health
Care 3

The Sociology of Health, Illness, and Health Care: An Overview 5

The Sociological Perspective 6

A Critical Approach 8

A Brief History of Disease 10

The European Background 10

Disease in the New World 11

The Epidemiological Transition 11

Understanding Research Sources 13

Evaluating Research Sources 13

Evaluating Research Data 14

Summary 15

Review Questions 16

Critical Thinking Questions 17

Chapter 2 The Social Sources of Modern Illness 18

An Introduction to Epidemiology 20

The Modern Disease Profile 22

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viii C O N T E N T S

The New Rise in Infectious Disease 22

Today’s Top Killers 23

The Social Sources of Premature Deaths 24

Diet, Exercise, and Obesity 25

Tobacco 27

Medical Errors 28

Alcohol 29

Bacteria and Viruses 30

Toxic Agents and Risk Societies 31

Firearms 32

Motor Vehicles 32

Sexual Behavior 33

Illicit Drug Use 34

The Health Belief Model, Health Lifestyles, and Health
“Projects” 37

The Health Belief Model 37

Health Lifestyles 37

Health Projects 40

Social Stress and Social Networks 40

Social Stress 40

Gender, Race, Class, and Social Stress 42

Social Networks 42

Implications 43

Summary 43

Review Questions 44

Critical Thinking Questions 45

Chapter 3 The Social Distribution of Illness in the
United States 46

Social Class 48

Overview 48

The Sources of Class Differences in Health 49

Race and Ethnicity 52

African Americans 53

Hispanic Americans 56

Native Americans 57

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ixC O N T E N T S

Asian Americans 57

Case Study: Environmental Racism 59

Age 59

Overview 59

Sex and Gender 60

Overview 60

Case Study: Intimate Partner Violence and Health 62

Transgender Health Issues 63

Intersex Health Issues 64

Social Capital 65

Implications 66

Summary 66

Review Questions 67

Critical Thinking Questions 68

Chapter 4 Illness and Death in the
Less Developed Nations 69

Setting the Stage: Key Concepts 71

Understanding Development Patterns 71

Understanding Globalization 73

Understanding Global Health 73

Explaining Death and Disease in Less Developed Nations 74

Chronic Disease 74

Poverty, Malnutrition, and Disease 75

Infectious and Parasitic Diseases 77

Neglected Tropical Diseases 81

Infant Mortality 82

Maternal Mortality 83

Respiratory Diseases 86

War 87

Disasters 87

Structural Violence 88

Implications 89

Summary 90

Review Questions 91

Critical Thinking Questions 91

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x C O N T E N T S

PA RT II The Meaning and Experience of Illness 93

Chapter 5 The Social Meanings of Illness 95

Explaining Illness Across History 97

Models of Illness 98

The Medical and Sociological Models of Illness 98

Medicine as Social Control 102

Creating Illness: Medicalization 103

Genetic Research and Social Control 108

Social Control and the Sick Role 110

Implications 113

Summary 113

Review Questions 115

Critical Thinking Questions 115

Chapter 6 The Experience of Disability, Chronic Pain,
and Chronic Illness 116

Understanding Disability 118

Defining Disability 118

People with Disabilities as a Minority Group 119

The Social Distribution of Disability 120

Understanding Chronic Pain 122

Living with Chronic Pain 122

Gender, Ethnicity, Class, and Chronic Pain 123

Living with Disability and Chronic Illness 123

Responding to Initial Symptoms 123

Managing Health Care and Treatment Regimens 126

Managing Social Relationships and Social Standing 131

Implications 135

Summary 136

Review Questions 137

Critical Thinking Questions 138

Chapter 7 The Sociology of Mental Illness 139

The Epidemiology of Mental Illness 141

The Extent of Mental Illness 141

Social Stress and Mental Illness 142

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xiC O N T E N T S

Ethnicity, Gender, Social Class, and Rates of Mental Illness 142

Social Capital and Mental Illness 144

Defining Mental Illness 145

The Medical Model of Mental Illness 145

The Sociological Model of Mental Illness 146

The Problem of Diagnosis 148

The Politics of Diagnosis 149

A History of Treatment 150

Before the Scientific Era 150

The Rise and Decline of Moral Treatment 151

Freud and Psychoanalysis 153

The Antipsychiatry Critique 154

Deinstitutionalization 155

The Rise of Managed Care 157

The Remedicalization of Mental Illness 158

Mental Health and the Affordable Care Act 160

Recent Challenges to Medical Diagnoses and Treatment 160

The Experience of Mental Illness 161

Becoming a Mental Patient 161

Mental Illness and Identity 164

Implications 164

Summary 165

Review Questions 166

Critical Thinking Questions 167

PA RT III Health Care Systems, Settings, and Technologies 169

Chapter 8 Health Care in the United States 170

A History of U.S. Health Insurance 172

The Birth of U.S. Health Insurance 172

The Government Steps In 173

The Rise of Commercial Insurance 174

The Rise (and Partial Fall) of Managed Care 174

The Attempt at “Health Care Security” 175

The 2010 Patient Protection and Affordable Care Act 176

Passing the Affordable Care Act 176

Understanding the Affordable Care Act 176

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xii C O N T E N T S

The ACA Under Attack 177

The Impact of the ACA 178

The Continuing Crisis in Health Care Costs 178

The Myths of Health Care Costs 178

Understanding Health Care Costs 180

Health Care Costs and the ACA 183

Health Care Costs and “Big Pharma” 183

The Continuing Crisis in Health
Care Access 188

Uninsured Americans 188

Underinsured Americans 189

The Consequences of Underinsurance and Lack of Insurance 189

The Prospects for State-Level Reform 190

Implications 191

Summary 192

Review Questions 193

Critical Thinking Questions 194

Chapter 9 Health Care Around the Globe 195

Evaluating Health Care Systems 197

Universal Coverage 197

Portability 198

Geographic Accessibility 199

Comprehensive Benefits 200

Affordability 200

Financial Efficiency 201

Consumer Choice 201

Health Care in Other Countries 201

Germany: Social Insurance for Health Care 203

Canada: National Health Insurance 205

Great Britain: National Health Service 207

China: Promises and Perils 210

Mexico: Moving toward Equitable Health Care 213

Democratic Republic of Congo: When Health Care Collapses 216

Implications 217

Summary 218

Review Questions 219

Critical Thinking Questions 220

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xiiiC O N T E N T S

Chapter 10 Health Care Settings and Technologies 221

The Hospital 223

The Premodern Hospital 223

Beginnings of the Modern Hospital 224

The Rise of the Modern Hospital 225

Hospitals Today 225

The Hospital–Patient Experience 226

The Shift Away from Hospitals 227

Nursing Homes 227

Gender, Age, Ethnicity, Class, and Nursing Home Usage 227

Financing Nursing Home Care 228

Working in Nursing Homes 229

Life in Nursing Homes 229

Hospices 231

Origins of Hospice 231

Modern Hospices 231

Use of Hospice 233

Outcomes of Hospice Care 234

Home Care 234

The Nature of Family Caregiving 235

Easing the Burdens of Caregiving 236

Health Care Technologies 237

The Nature of Technology 237

The Social Construction of Technology 239

The Technological Imperative 240

Technology and the Changing Nature of Health Care 241

Implications 242

Summary 243

Review Questions 245

Critical Thinking Questions 245

PA RT IV Health Care, Health Research, and Bioethics 247

Chapter 11 The Profession of Medicine 248

American Medicine in the Nineteenth Century 250

The Rise of Medical Dominance 253

The Flexner Report and Its Aftermath 253

Doctors and Professional Dominance 254

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xiv C O N T E N T S

The Threats to Medical Dominance 255

The Rise of Corporatization 255

The Rise of Government Control 256

The Decline in Public Support 258

The Decline of the American Medical Association and Countervailing
Powers 258

The Continued Strength of Medical Dominance 259

Medical Education and Medical Values 261

The Structure of Medical Education 261

Ethnicity, Sex, Class, and Medical Education 262

Learning Medical Values 263

The Consequences of Medical Values 267

Patient–Doctor Relationships 268

Power and Paternalism 269

Ethnicity, Class, Gender, and Paternalism 269

Paternalism as Process 270

Shifting Patient Roles and the Decline of Paternalism 271

Reforming Medical Training 271

Implications 272

Summary 273

Review Questions 274

Critical Thinking Questions 275

Chapter 12 Other Mainstream and Alternative Health
Care Providers 276

Mainstream Health Care Providers 278

Nursing: The Struggle for Professional Status 278

Osteopathy: A Parallel Profession 284

Dentistry: Maintaining Independence 288

Alternative Health Care Providers 289

Chiropractors: From Marginal to Limited Practitioners 290

Direct-Entry Midwives: Limited but Still Marginal 292

Curanderos 296

Acupuncturists 298

Implications 299

Summary 300

Review Questions 301

Critical Thinking Questions 302

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xvC O N T E N T S

Chapter 13 Issues in Bioethics 303

History of Bioethics 305

The Nazi Doctors and the Nuremberg Code 306

The Rise of Bioethics 308

Contemporary Issues in Bioethics 311

Reproductive Technology 311

Enhancing Human Traits 312

Resource Allocation and the Right to Refuse to Treat 313

CRISPR Technologies 314

Athletes and Concussions 314

Institutionalizing Bioethics 316

Hospital Ethics Committees 316

Institutional Review Boards 316

Professional Ethics Committees 317

Community Advisory Boards 317

The Impact of Bioethics 317

The Impact on Research 318

The Impact on Medical Education 320

The Impact on Clinical Practice 321

Implications 322

Summary 323

Review Questions 324

Critical Thinking Questions 324

GLOSSARY 325

REFERENCES 340

INDEX 381

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xvi

Preface

The sociology of health, illness, and health care has changed dramatically over the
past few decades. The field was started primarily by sociologists who worked closely
with doctors, taking doctors’ assumptions about health and health care for granted
and primarily asking questions that doctors deemed important. By the 1970s, how-
ever, the field had begun shifting toward a decidedly different set of questions. Some
of these new questions challenged doctors’ assumptions, whereas others focused on
issues that lay outside most doctors’ areas of interest or expertise such as how poverty
affects health or how individuals develop meaningful lives despite chronic illness.

I entered graduate school during this shift, drawn by the opportunity to study
how health and illness are socially created and defined and how gender, ethnicity,
social class, and power affect both the health care system and individual experi-
ences of health and illness. As a result, over the years I have researched such topics
as how medical values affect doctors’ use of genetic testing, how midwives and
doctors have battled for control over childbirth, and how social ideas about AIDS
affect the lives of those who live with this disease.

Although I had no trouble incorporating this new vision of the sociology of
health, illness, and health care into my research, I consistently found myself frus-
trated by the lack of a textbook that would help me incorporate it into my teach-
ing. Instead, most textbooks still seemed to reflect older ideas about the field and
to take for granted medical definitions of the situation. Most basically, the books
assumed that doctors define illness according to objective biological criteria, so
they failed to question whether political and social forces underlie the process of
defining illnesses. Similarly, most textbooks ignored existing power relationships
rather than investigating the sources, nature, and health consequences of those
relationships. For example, the textbooks gave relatively little attention to how
doctors gained control over health care or how the power of the more developed
nations has affected health in less developed nations. As a result, these textbooks
used sociology primarily to answer questions posed by those working in the health

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xviiP R E FA C E

care field, such as what social factors lead to heart disease and why patients might
ignore their doctors’ orders. Consequently, these textbooks often seemed to offer
a surprisingly unsociological perspective with their coverage of some topics differ-
ing little from coverage of those topics in health education textbooks.

Because the textbooks available when I first began working on this book
often avoided critical questions about health, illness, and health care, they seemed
unlikely to encourage students to engage with the materials and to question either
the presented materials or their own assumptions such as the belief that the United
States has the world’s best health care system, that medical advances explain the
modern rise in life expectancy, or that all Americans receive the same quality of
health care regardless of their ethnicity, gender, or social class. Instead, the text-
books primarily gave students already-processed information to memorize.

My purpose in writing this textbook was to fill these gaps by presenting a
critical approach to the sociology of health, illness, and health care. This did not
mean presenting research findings in a biased fashion or presenting only research
that supported my preexisting assumptions, but it did mean using critical skills to
interpret the available research and to pull it together into a coherent “story” in
each chapter. In addition, I hoped to tell these stories in a manner that would en-
gage students—whether in sociology classes, medical schools, or nursing schools—
and encourage them to learn actively and think independently. These remain the
primary goals of this eighth edition. Both of these goals led me to decide against
trying to please all sides or cover all topics because I believe such a strategy leads
to a grab-bag approach that makes textbooks hard to follow and to an intellectual
homogenization that makes them seem lifeless.

THE CRITICAL APPROACH

The critical approach, as I have defined it, means using the “sociological imag-
ination” to question taken-for-granted aspects of social life. For example, most
of the available textbooks in the sociology of health, illness, and health care still
view patients who do not comply with prescribed medical regimens essentially
through doctors’ eyes, starting from the assumption that patients should comply.
More broadly, previous textbooks have highlighted the concept of a sick role—a
concept that embodies medical and social assumptions regarding “proper” illnesses
and “proper” patients and downplays all aspects of individuals’ lives other than the
time they spend as patients.

In contrast, I emphasize recent research that questions such assumptions. For
example, I discuss patient compliance by examining how patients view medi-
cal regimens and compliance, why doctors sometimes have promoted medical
treatments (such as hormone therapy for menopausal women) that later proved
dangerous and how doctors’ tendency to cut short patients’ questions can foster
patient noncompliance. Similarly, this textbook explains the concept of a sick role
but pays more attention to the broader experience of illness—a topic that has gen-
erated far more sociological research than the sick role has over the past 20 years.

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xviii P R E FA C E

CHAPTER ORGANIZATION

This textbook demonstrates the breadth of topics included in the sociology of
health, illness, and health care. Part I discusses the role that social factors play in
fostering illness and in determining which social groups experience which ill-
nesses. Chapter 1 offers an introduction to the field, the sociological approach, and
the history of disease. Chapter 2 describes the major causes of preventable deaths
in the United States, demonstrating how social as well as biological factors affect
health and illness. Building on this basis, Chapter 3 describes how age, sex, gender,
social class, race, and ethnicity affect the likelihood, nature, and consequences of
illness in the United States. Finally, Chapter 4 explores the nature and sources of
illness in the poorer countries of Asia, Africa, and Latin America.

Part II analyzes the meaning and experience of illness and disability in the
United States. Chapter 5 explores the social meanings of illness and social ex-
planations for illness as well as the social consequences of defining behaviors and
conditions as illnesses. With this as a basis, Chapter 6 first explores the meaning of
disability and then offers a sociological overview of the experience of living with
chronic pain, chronic illness, or disability, including the experience of seeking care
from both medical doctors and alternative health care providers. Finally, Chapter 7
provides a parallel assessment of mental illness.

Part III moves the analysis to the macro level. Chapter 8 describes the U.S.
health care system, the battles surrounding the 2010 Patient Protection and
Affordable Care Act, and the continuing crises in health care costs and accessibil-
ity. Chapter 9 offers some basic measures for evaluating health care systems and
then uses these measures to evaluate the systems found in Canada, Great Britain,
Germany, the People’s Republic of China, Mexico, and the Democratic Republic
of Congo. Finally, Chapter 10 examines four common health care settings—
hospitals, hospices, nursing homes, and family homes—and provides a social
analysis of the technologies used in those settings.

Part IV shifts the focus from the health care system to health care providers.
Chapter 11 analyzes the nature and source of doctors’ professional status as well
as the threats to that status. The chapter also describes the process of becoming a
doctor, the values embedded in medical culture, and the impact of those values on
doctor–patient relationships. Chapter 12 describes the history and social position
of various health care occupations, including dentistry, nursing, osteopathy, and
acupuncture. Finally, Chapter 13 presents a sociological overview of bioethics.

COVERAGE

Although I have tried in this book to present a coherent critical view, I have not
sacrificed coverage of topics that professors have come to expect. Consequently,
this book covers essentially all the topics that have become standard over the years,
including doctor–patient relationships, the nature of the U.S. health care system,

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xixP R E FA C E

and the social distribution of illness. In addition, I include several topics that until
recently received relatively little coverage in other textbooks in the field, includ-
ing bioethics, mental illness, the medical value system, the experience of illness
and disability, and the social sources of illness in both more and less developed
nations. As a result, this text includes more materials than most teachers can cover
effectively in a semester. To assist those who choose to skip some chapters, each
important term is printed in bold the first time it appears in each chapter, alerting
students that they can find a definition in the book’s Glossary. (Each term is both
printed in bold and defined the first time it appears in the book.)

In addition, reflecting my belief that sociology neither can nor should exist in
isolation but must be informed by and in turn inform other related fields, several
chapters begin with historical overviews. For example, the chapter on health care
institutions discusses the political and social forces that led to the development of
the modern hospital, and the chapter on medicine as a profession discusses how
and why the status of medicine grew so dramatically after 1850. These discussions
provide a context to help students better understand the current situation.

CHANGES IN THE EIGHTH EDITION

Throughout the textbook, I have worked to update statistics as well as reviews of
topical issues and theoretical issues. Two-thirds of references in this new edition are
from the last 10 years, and fewer than 10% are from books or articles written be-
fore 1990—a level of timeliness that significantly surpasses that of most textbooks.
The reader can thus safely assume that, wherever possible, the statistics, policy
summaries, and legal information are the latest available.

New and Updated Chapter Topics

Chapter 2
■ E-cigarettes
■ Distracted driving and rise in automobile fatalities and distracted driving
■ The opioid epidemic
■ Updated discussion of premature causes of death

Chapter 3
■ Climate change, poverty, and ill health
■ Transgender health
■ Mass incarceration and health

Chapter 4
■ Neglected tropical disease
■ Zika virus

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xx P R E FA C E

Chapter 7
■ Recent challenges to psychiatric diagnosis
■ Mental health and the Affordable Care Act

Chapter 8
■ The impact of the ACA
■ The ACA under attack

Chapter 9
■ Updated statistics and descriptions of health care in five nations

Chapter 10
■ Technology, terrorism and public health
■ Updated statistics on hospice care, hospitals, nursing homes, and home care

Chapter 11
■ “Boutique medicine”

Chapter 12
■ Updated statistics on each health care occupation

Chapter 13
■ CRISPR technologies

New or Revised Tables and Figures
■ Map 2.1 Overdose Deaths Per 100,000 Persons, United States
■ Table 2.1 Main Causes of Deaths, 1900 and 2016
■ Table 2.2 Underlying Causes of Premature Death in the United States, 2010
■ Figure 3.1 Life Expectancy by Race and Ethnicity and Sex
■ Table 3.1 Infant Mortality Rates in Different Nations and U.S. Ethnic Groups
■ Table 3.2 Top Causes of Death by Ethnicity
■ Table 4.1 Life Expectancy and Infant Mortality by Development Level
■ Table 4.2 Leading Causes of Death around the World
■ Table 6.1 Percentage of Americans with Basic Activity Limitations
■ Table 7.1 Sex, Ethnicity, and Social Class Groups with the Highest Lifetime

Risks of Specific Mental Illnesses
■ Figure 7.1 Antidepressant Use in the Past 30 Days, United States
■ Figure 8.1 Health Expenses and Inpatient Days in Acute Care Hospitals in

30 Nations
■ Figure 8.2 Health Expenses and Number of Doctor Visits in 30 Nations
■ Figure 8.3 Health Expenses and Life Expectancy in 30 Nations
■ Table 9.1 Characteristics of Health Care Systems in Seven Countries
■ Figure 11.1 Median Salaries by Percentage Women in Specialty

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xxiP R E FA C E

PEDAGOGICAL FEATURES FOR STUDENTS

Learning Objectives

Each chapter opens with a list of learning objectives matched to the chapter’s main
sections. These objectives help students focus their studying by alerting them to
the chapter’s main themes. The objectives also can help students demonstrate their
ability to apply what they have learned and can help both students and faculty
assess students’ understanding.

Chapter Openings

Unfortunately, many students take courses only to fill a requirement. As a result, the
first problem professors face is interesting students in the topic. For this reason, the
main text of each chapter begins with a vignette taken from a sociological or literary
source that is chosen to spark students’ interest by demonstrating that the topic has
real consequences for real people—that, for example, stigma is not simply an abstract
concept but something that can cost ill persons their friends, jobs, and social standing.

Chapter “Road Maps”

To help orient students to the chapters, each chapter’s introductory section ends
with a brief overview of what is to come.

Contemporary Issues

To further raise student interest and add to their knowledge, most chapters include
a boxed discussion of a relevant topic taken from recent news reports. Topics in-
clude the debate over full-body computed tomography scans and the decline of
primary care. These boxes should spark student interest while helping them make
connections between textbook topics and the world around them.

Ethical Debates

To teach students that ethical dilemmas pervade health care, most chapters include
a discussion of a relevant ethical debate. The debates are complex enough that stu-
dents must use critical thinking skills to assess them; teachers can use these debates
for classroom discussions, group exercises, or written assignments.

Key Concepts

To help students understand particularly important and complex topics, such
as the difference between the sociological and medical models of illness or the
strengths and weaknesses of the sick role model, I have included Key Concepts
tables or boxes in several chapters.

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xxii P R E FA C E

Implications Essays

Each chapter ends with a brief essay that discusses the implications of the chapter
and points the reader toward new questions and issues. These essays should stimu-
late critical thinking and can serve as the basis for class discussions.

Chapter Summaries

Each chapter ends with a detailed, bulleted summary that will help students to
review the material and identify key points.

Review Questions and Critical Thinking Questions

Each chapter includes both Review Questions that take students through the
main points of the chapter and Critical Thinking Questions that push students to
extrapolate from the chapter to other issues or to think more deeply about issues
discussed within the chapter.

Glossary

The book includes an extensive Glossary that defines all important terms used
in the book. Each Glossary term is printed in bold and defined the first time it
appears in the text. In addition, each term is also printed in bold the first time it
appears in each chapter, so students will know that they can find a definition in
the Glossary.

SUPPLEMENTAL AND PEDAGOGICAL FEATURES
FOR FACULTY

Instructor’s Manual with Test Bank

For each chapter, the Instructor’s Manual contains a detailed summary, a set of
multiple-choice questions, and a list of relevant books, narrative films, and docu-
mentaries. In addition, the Instructor’s Manual includes several questions for each
chapter that require critical-thinking skills to answer and that teachers can use
for essay exams, written assignments, in-class discussions, or group projects. The
manual also includes for each chapter a set of Internet exercises designed both to
familiarize students with materials available on the Web and to facilitate critical
reading and use of those materials. Finally, the manual lists for each chapter a few
relevant nonprofit organizations. Organizations listed in the manual can serve as
sources for more information or as sites for out-of-class assignments.

The Test Bank contains up to 20 multiple-choice questions, five true/false
questions, and five essay questions per chapter, all fully updated according to match
the eighth edition’s content.

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xxiiiP R E FA C E

To guarantee the quality of the Instructor’s Manual with Test Bank, I wrote ev-
erything in it rather than relying on student assistants. The manual is available for
downloading at http://login.cengage.com.

PowerPoint Lectures

PowerPoint lectures for each chapter, including all tables and figures, can be down-
loaded from http://login.cengage.com. These lectures should prove useful both
for new adopters and for past users who would like to incorporate more visual
materials into their classrooms. As with the Instructor’s Manual, I put these lectures
together myself to ensure their quality.

Critical Thinking

In this textbook, I have aimed not only to present a large body of data in a coher-
ent fashion but also to create an intellectually rigorous textbook that will stimulate
students to think critically. I have tried to keep this purpose in mind in writing
each chapter. Debates discussed within the chapters, as well as the various chapter
features, all encourage students to use critical thinking, and all serve as resources
that teachers can use in building their class sessions.

ACKNOWLEDGMENTS

In writing this textbook, I have benefited enormously from the generous assis-
tance of my colleagues. I am fortunate to have had several exceptional scholars
as colleagues over the years—Victor Agadjanian, Jill Fisher, Verna Keith, Bradford
Kirkman-Liff, Jennie Jacobs Kronenfeld, and Deborah Sullivan—who shared my
interest in health issues and helped me improve various chapters. I am also excep-
tionally fortunate to have had the assistance of several research assistants—Natasha
McLain, Allex Raines, Ashley Fenzl, Allison Hickey, Ann Jensby, Melinda Konicke,
Christopher Lisowski, Stephanie Mayer, Leslie Padrnos, Zina Schwartz, Diane
Sicotte, Lisa Tichavsky, Caroleena Von Trapp, and especially Karl Bryant, Lisa
Comer, and Amy Weinberg, who worked on the first edition.

Because, of necessity, this textbook covers a wealth of topics that range far
beyond my own areas of expertise, I have had to rely heavily on the kindness of
strangers in writing it. One of the most rewarding aspects of writing this book
has been the pleasure of receiving information, ideas, critiques, and references
from individuals I did not previously know. This edition was undoubtedly
improved by suggestions from Ellen Annandale (University of York), Maria
Dolores Corona (Universidad Autónoma de Nuevo León), Georgiann Davis
(University of Nevada, Las Vegas), Victoria Fan (University of Hawai`i at Mānoa),
Siegfried Geyer (Hannover Medical School), Lei Jin (Chinese University of
Hong Kong), Tey Meadow (Harvard University), Melissa A. Milkie (University
of Toronto), Jiong Tu (Sun Yat-sen University), Carla A. Pfeffer (University of

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xxiv P R E FA C E

South Carolina), Helen Rosenberg (University of Wisconsin-Parkside), Ian Shaw
(University of Nottingham), Lisa Strohschein (University of Alberta), and Diane
Kholos Wysocki (formerly of University of Nebraska–Kearney).

In addition, I would like to once again thank those who gave me the ben-
efit of their expert advice on previous editions: Astrid Eich-Krohm (Uni-
versity Hospital Magdeburg), Krista Hodges (University of Hawaii), Michael
Polgar (Penn State University), Jennifer Schumann, Ian Shaw (University of
Nottingham), Julia Stumkat, and Wei Zhang (University of Hawaii), Emily Abel
(University of California–Los Angeles); James Akré (World Health Organization);
Ellen Annandale (University of Leicester); Ofra Anson (Ben Gurion University
of the Negev); Judy Aulette (University of North Carolina; Charlotte); Miriam
Axelrod; James Bachman (Valparaiso University); Kristin Barker (University of
New Mexico); Paul Basch (Stanford University); Phil Brown (Brown Univer-
sity); Peter Conrad (Brandeis University); Timothy Diamond (California State
University–Los Angeles); Luis Durán (Mexican Institute of Social Security);
Elizabeth Ettorre (University of Liverpool); Michael Farrall (Creighton Uni-
versity); Kitty Felker; Arthur Frank (University of Alberta); María Hilda García-
Pérez (Arizona State University); Alya Guseva (Boston University); Frederic W.
Hafferty (University of Minnesota–Duluth); Harlan Hahn (University of Southern
California); Ida Hellander (Physicians for a National Health Program); Paul
Higgins (University of South Carolina); Allan Horwitz (Rutgers University);
David J. Hunter (University of Durham); Joseph Inungu (Central Michigan
University); Michael Johnston (University of California–Los Angeles); Stephen
J. Kunitz (University of Rochester); Donald W. Light (University of Medicine
and Dentistry of New Jersey); Judith Lorber (City University of New York);
William Magee (University of Toronto); Judy Mayo; Peggy McDonough (Uni-
versity of Toronto); Jack Meyer (Economic & Social Research Institute); Cindy
Miller; Jeanine Mount (University of Wisconsin); Marilynn M. Rosenthal (Univer-
sity of Michigan); Beth Rushing (Kent State University); C. J. Schumaker (Walden
University); Wendy Simonds (Georgia State University); Teresa Scheid (University
of North Carolina at Charlotte); Clemencia Vargas (Centers for Disease Con-
trol and Prevention); Olaf von dem Knesebeck (University of Hamburg); Robert
Weaver and his students, especially Cheryl Kratzer (Youngstown State University);
Daniel Whitaker; David R. Williams (University of Michigan); Irving Kenneth
Zola (Brandeis University); and Robert Zussman (University of Massachusetts–
Amherst). This book undoubtedly would have been better if I had paid closer
attention to their comments. I apologize sincerely if I have left anyone off this list.

Similarly, I am deeply grateful for the advice received from reviewers of this
edition: Andrew Bedrous (Kansas Wesleyan University), DeAnna Gore (Univer-
sity of South Carolina, Aiken), Muhammad Haque (McNeese State University),
Caroline Hartnett (University of South Carolina), Marta Jankowska (San
Diego State University), Yushi Li (Northern Kentucky University), Elgin Mannion
(Western Illinois University), Jewrell Rivers (Abraham Baldwin Agricultural
College), Sharon Sassler (Cornell University), and Paul Sutton (University of
Denver).

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xxvP R E FA C E

I also remain grateful for the suggestions from reviewers on previous edi-
tions: Jennifer Bulanda (Miami University), Benjamin Drury (Indiana Univer-
sity at Columbus), Jamie Gusrang (Community College of Philadelphia), David
Mullins (University of Saint Francis), Claire Norris (Xavier University of Louisiana),
Michael Polgar (Penn State University), Richard Scotch (University of Texas at
Dallas), Nicole Vadino (Community College of Philadelphia, Thomas Allen (Uni-
versity of South Dakota), Karen Bettez (Boston College), Linda Liska Belgrave
(University of Miami), Pamela Cooper-Porter (Santa Monica College), Karen
Frederick (St. Anselm College), Stephen Glazier (University of Nebraska), Linda
Grant (University of Georgia), Janet Hankin (Wayne State University), Heather
Hartley (Portland State University), Alan Henderson (California State University–
Long Beach), Simona Hill (Susquehanna University), Frances Hoffman (Uni-
versity of Missouri), Joseph Kotarba (University of Houston), Lilly M. Langer
(Florida International University), Christine Malcom (Roosevelt University),
Keith Mann (Cardinal Stritch University), Phylis Martinelli (St. Mary’s College
of California), Dan Morgan (Hawaii Pacific University), Larry R. Ridener
(Pfeiffer University), Susan Smith (Walla Walla University), Kathy Stolley
(Virginia Wesleyan College), Deborah Sullivan (Arizona State University), Gary
Tiedman (Oregon State University), Diana Torrez (University of North Texas),
Linda Treiber (Kennesaw State University), Robert Weaver (Youngstown State
University), and Diane Zablotsky (University of North Carolina–Charlotte).

Finally, I would like to express my appreciation to the current and former
Cengage staff who made the process of revising this book for its eighth edition as
smooth as possible: Sharib Asrar, Mike Bailey, Julie Dierig, Deanna Ettinger, Ava
Fruin, Jayne Stein, Wendy Huska, and Jenny Ziegler.

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xxvi

About the Author

Rose Weitz received her doctoral degree in sociology from Yale University in 1978.
Since then, she has carved an exceptional record as both a scholar and a teacher.
She is the author of numerous scholarly articles, the book Life with AIDS, and the
book Rapunzel’s Daughters: What Women’s Hair Tells Us About Women’s Lives. She
also is coauthor of Labor Pains: Modern Midwives and Home Birth and coeditor of The
Politics of Women’s Bodies: Appearance, Sexuality, and Behavior.

Professor Weitz has won several teaching awards (including the Pacific So-
ciological Association’s Distinguished Contributions to Teaching Award, the ASU
Last Lecture Award, and the ASU College of Liberal Arts and Sciences Outstand-
ing Teaching Award) and has served as director of ASU’s graduate and under-
graduate sociology and gender studies programs. In addition, she has served as
president of Sociologists for Women in Society, as chair of the Sociologists AIDS
Network, and as chair of the Medical Sociology Section of the American Socio-
logical Association.

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1

PA RT

I

Social Factors and Illness

Chapter 1 The Sociology of Health, Illness, and Health Care

Chapter 2 The Social Sources of Modern Illness

Chapter 3 The Social Distribution of Illness in the United States

Chapter 4 Illness and Death in the Less Developed Nations

Illness is a fact of life. Everyone experiences illness sooner or later, and everyone
eventually must cope with illness among close friends and relatives.

To the ill individual, illness can seem a purely internal and personal experi-
ence. But illness is also a social phenomenon with social roots and social conse-
quences. In this first part, we look at the role that social factors play in fostering
illness within societies and in determining which groups in a given society will
experience which illnesses with which consequences.

Chapter 1 introduces the sociological perspective and illustrates how sociol-
ogy can help us understand issues related to health, illness, and health care. The
chapter also provides a brief history of disease in the Western world, which high-
lights how social factors can foster disease. In the subsequent chapters, we explore
the role social forces play in causing disease and in determining who gets ill in
the modern world. In Chapter 2, we review the basic concepts needed to discuss
diseases and look at modern patterns of disease. After that, we look at the social
sources of illness in the contemporary United States and at some social factors that
help predict individual health and illness. In Chapter 3, we investigate how four
social factors—age, sex and gender, social class, and race or ethnicity—affect the

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2 PA RT I

distribution of illness in the United States and explore why some social groups
bear a greater burden of illness than others. Finally, in Chapter 4, we analyze the
very different pattern of illnesses found in poorer countries and explain how social
forces—from the low status of women to the rise of migrant labor—can foster
illness in these countries.

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3

C H A P T E R

The Sociology of Health,

Illness, and Health Care

1

Da
vi

d
Ha

no
ve

r/
Ge

tty
Im

ag
es

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4 C H A P T E R 1

LEARNING OBJECTIVES

After reading this chapter, students should be able to:

● Describe the sociological perspective.
● Identify the difference between sociology in medicine and sociology

of medicine.
● Understand how social changes have historically affected the health

of populations.
● Evaluate research methods and sources.

Shortly before her 46th birthday, my friend Lara found a lump in her breast.
A mammogram (a type of x-ray) soon identified the lump as potentially
cancerous, and so a surgeon removed part of the lump for further testing. A few
days later, Lara learned that she did indeed have breast cancer. That week, she
got her affairs in order and signed a “living will,” specifying the circumstances in
which she would want all treatment stopped, and a “medical power of attorney”
giving me legal authority to make medical decisions for her if she could not do
so herself. These two documents, she hoped, would protect her from aggressive
medical treatments that might prolong her suffering without improving her
quality of life or chances of survival.

Two weeks after the initial tests, her surgeon removed the rest of the lump as
well as the lymph nodes under her arm (where breast cancer most often spreads).
The surgery went well, but the subsequent laboratory tests showed that the cancer
had spread to her nodes.

Yet in many ways, Lara was fortunate. Her breast cancer was detected at an
early stage, improving her odds of surviving. Although she had neither husband
nor children to turn to, her friends proved uniformly supportive. She received
health insurance through her employer and had no fears of losing either her job or
her insurance.

Nevertheless, cancer changed Lara’s life irrevocably, making it, at times, a
nightmare. Having breast cancer shook Lara’s faith in her body and changed her
sense of her physical self. At the same time, her illness threatened her relationships
with others. Despite the supportive responses she received from friends and
coworkers, she feared that they would drift away as her illness continued or that she
would chase them away with her all-too-reasonable complaints, worries, and needs.

Meanwhile, even though she had better health insurance than many
Americans have, her debts for items not covered by insurance mounted. In
addition, she had to spend hours fighting her insurance company to obtain
relaxation training and expensive but effective anti-nausea drugs to cope with
chemotherapy’s side effects. Without the drugs, chemotherapy made her so

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5T H E S O C I O L O G Y O F H E A LT H , I L L N E S S , A N D H E A LT H C A R E

ill that she could barely function, let alone fight her insurance company. In
addition, chemotherapy proved so toxic that it damaged her veins with each
painful intravenous treatment. As a result, her doctors suggested inserting a
semi-permanent plastic tube into her chest wall so they could instead administer
the chemotherapy through the tube. Although doing so would have reduced her
pain, Lara rejected the suggestion because she felt that, with this sign of her
illness physically attached to her body, cancer would become part of her very self
rather than merely one aspect of her life.

After a year of surgery, chemotherapy, and radiation, Lara’s physical traumas
ended, although it took another year before she regained her former energy.

Lara’s story demonstrates the diverse ways that illness affects individuals’ lives,
as well as the diverse range of topics that sociologists of health, illness, and health
care can study. This chapter opens with an overview of those topics, the sociolog-
ical perspective, and the critical approach within sociology. We then look briefly
at the history of disease, which helps put sociological research on health into con-
text, before exploring the research sources used by sociologists.

THE SOCIOLOGY OF HEALTH, ILLNESS,
AND HEALTH CARE: AN OVERVIEW

Sociologists’ research into health, illness, and health care falls into three main cat-
egories. First, some sociologists study how social forces promote health and illness
and why some social groups suffer more illness than others. For example, research-
ers have explored whether working conditions in U.S. factories help explain why
poorer Americans get certain cancers more often than wealthier Americans. Simi-
larly, sociologists can study how historical changes in social life can explain changes
in patterns of illness. To understand why rates of breast cancer have increased, for
example, researchers have studied the possible impact of environmental pollution,
increased meat consumption, and women’s changing work lives.

Second, instead of studying broad patterns of illness, sociologists can study the
experiences of people like Lara who live with illness each day—exploring, for exam-
ple, how illness affects individuals’ sense of identity, relationships with family, or ideas
about what causes illness. Similarly, sociologists can study the experiences of health
care providers. Some sociologists have analyzed how doctors’ status and power have
shifted over time, and others have investigated how power affects interactions among
doctors, nurses, and other health care workers. Still others have examined interactions
between health care workers and patients, asking, for example, how doctors maintain
control over patients or whether doctors treat male and female patients differently.

Third, sociologists can analyze the health care system as a whole. Sociologists
have examined how health care systems have developed, compared the strengths
and weaknesses of different systems, and explored how systems can be improved.

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6 C H A P T E R 1

For example, some have studied how U.S. health insurance companies can make it
difficult for people like Lara to get needed care, explored why European countries
do better than the United States at providing health care to all who need it, and
examined whether European health care policies could work in the United States.

The topics researched by sociologists of health, illness, and health care overlap
in many ways with those studied by health psychologists, medical anthropologists,
public health workers, and others. What most clearly differentiates sociologists
from these other researchers is the sociological perspective. The next section describes
that perspective.

THE SOCIOLOGICAL PERSPECTIVE

The sociological perspective is a view of the world that focuses on social patterns
rather than individual behaviors. Whereas a psychologist might help a battered wife
develop a greater sense of her own self-worth so she might eventually leave her
abusive husband, a sociologist likely would consider therapy a useful but inefficient
means of addressing the root causes of wife abuse. Most battered wives, after all,
don’t have the time, money, or freedom to get help from psychologists. Moreover,
even when therapy helps, it takes place only after the women have experienced
physical and emotional damage. The sociologist would not deny that individual
personalities play a role in wife battering but would find it more useful to explore
whether social forces can explain why wife battering is much more common than
husband battering or why battered wives so often remain with abusive husbands.
Consequently, whereas the psychologist hopes to enable the individual battered
wife eventually to leave her husband, the sociologist hopes to uncover the knowl-
edge needed by legislators, social workers, activists, and others to prevent wife
abuse in the first place.

As this example demonstrates, using the sociological perspective means
framing problems as public issues rather than as simply personal troubles. According
to C. Wright Mills (1959:8–9), the sociologist who first drew attention to this
dichotomy:

[Personal] troubles occur within the character of the individual and
within the range of his immediate relations with others; they have to
do with his self and with those limited areas of social life of which
he is directly and personally aware. Accordingly, the statements and
the resolutions of troubles properly lie within the individual as a
biographical entity and within the scope of his immediate milieu. …
[In contrast, public] issues have to do with matters that transcend these
local environments of the individual and the range of his inner life.
They have to do with the organization of many such milieus into the
institutions of an historical society as a whole.

For example, whenever a child is diagnosed with severe brain damage, it is a
tragedy and personal trouble for the child’s family. If, on the other hand, several

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7T H E S O C I O L O G Y O F H E A LT H , I L L N E S S , A N D H E A LT H C A R E

children in a neighborhood receive the same diagnosis during the same year, it
could suggest a broader public issue such as a contaminated water system—as hap-
pened in Flint, Michigan, in 2016. A sociologist would be likely to look for such a
pattern and explore why, for example, polluting industries are more likely to build
factories in poor, minority neighborhoods than in affluent, white neighborhoods.
The sociological perspective, then, departs radically from the popular American
belief that individuals create their own fates and that anyone can succeed if he or
she tries hard enough.

The sociological perspective can help us identify critical research questions
that might otherwise go unasked. For example, in the book Forgive and Remember:
Managing Medical Failure, sociologist Charles Bosk (2003:62–63) described a situ-
ation he observed one day on rounds, the time each day when recently graduated
doctors (known as residents) and more senior doctors jointly examine the patients
on a service or ward:

Dr. Arthur [the senior doctor] was examining the incision [surgical
cut] of Mrs. Anders, a young woman who had just received her second
mastectomy. After reassuring her that everything was fine, everyone left
her room.

We walked a bit down the hall and Arthur exploded: “That wound
looks like a walking piece of dogshit. We don’t close wounds with
continuous suture on this service. We worked for hours giving this lady
the best possible operation and then you screw it up on the closure.
That’s not how we close wounds on this service, do you understand?
These are the fine points that separate good surgeons from butchers, and
that’s what you are here to learn. I never want to see another wound
closed like that. Never!”

Arthur then was silent, he walked a few feet, and then he began
speaking again: “I don’t give a shit how Dr. Henry [another senior
doctor] does it on the Charlie Service or how Dr. Gray does it on
Dogface: When you’re on my service, you’ll do it the way I want.”

Dr. Arthur and the residents he supervised undoubtedly viewed this situa-
tion as a personal trouble requiring a personal solution—the residents seeking to
appease Dr. Arthur, and Dr. Arthur seeking to intimidate and shame the residents
into doing things the way he considered best. Similarly, depending on their view-
point, most observers probably would view this as a story about either careless resi-
dents or an autocratic senior doctor. Sociologists, however, would first ask whether
residents and senior doctors typically interact like this. If they do, sociologists then
would look for the social patterns underlying such interactions rather than focus
on the personalities of these particular individuals. So, for example, based on his
observations in this and other cases, Bosk discovered that cultural expectations
within the medical world regarding authority, medical errors, and the importance
of personal, surgical experience gave Dr. Arthur and the other supervising doctors
power and allowed them to humiliate residents publicly and to set policies based
more on personal preferences than on scientific data.

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8 C H A P T E R 1

Whereas Charles Bosk studied relations among doctors, sociologist Kristin
Barker (2008) looked at interactions among individuals who believe they have
fibromyalgia. Fibromyalgia is a relatively new disease label given to individuals
who experience a wide variety of disabling symptoms. Because there are no bio-
logical tests for fibromyalgia, many doctors doubt whether it should be considered
a disease.

To explore what it means to live with fibromyalgia, Barker looked at posts
to an online fibromyalgia support group. In a typical post, a woman named Sarah
wrote:

My new doctor appointment was today. Was not good!! First of all she
is four months out of medical school. She looked over my chart and
immediately wanted to change all medications that I am taking. …
[Then she said,] “Now about your fibromyalgia, I will not prescribe
pain killers for fibro.” I sat there with my mouth open. She went on
to tell me the fresh-out-of-med-school approach to fibro is exercise,
diet. I said what about the pain? She proceeded to tell me the pain was
“ALL IN MY HEAD, THERE IS NO PAIN, YOU JUST IMAGINE
THERE IS.” My first thought was [to] jump up out of this chair and
slap the B——!! Instead I said “You are an idiot”!! Then I walked out.

Depending on one’s perspective, Sarah’s post suggests either an ignorant and in-
sensitive doctor or a rude patient with delusions of grandeur. To a sociologist, how-
ever, this post raises several questions that go beyond these individuals and therefore
requires looking at the surrounding culture and social structure. Barker, for example,
explored how the online support group increased patients’ power to negotiate with
their doctors, how the broader social structure nevertheless allowed doctors to control
most interactions with patients, and how these struggles between doctors and patients
reflected wider social questions regarding what constitutes an illness.

In sum, the sociological perspective shifts our focus from individuals to social
groups and institutions. One effect of this shift is to highlight the role of power.
Power refers to the ability to get others to do what one wants, whether willingly
or unwillingly. Power is what allowed Dr. Arthur to treat his residents so rudely and
what allowed Sarah to reject her doctor’s advice. Because sociologists study groups
rather than individuals, the sociological analysis of power focuses on why some
social groups have more power than others, how groups use their power, and the
consequences of differential (that is, unequal) access to power rather than on how
specific individuals get or use power. For example, sociologists have examined how
doctors use their power in negotiations with hospitals over working conditions and
how lack of power exposes poor persons to unhealthy living conditions.

A CRITICAL APPROACH

Although the concept of power underlies the sociological perspective, sociologists
don’t necessarily emphasize power in their research and writing. For example,
some sociologists have researched unhealthy eating patterns among poor people

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9T H E S O C I O L O G Y O F H E A LT H , I L L N E S S , A N D H E A LT H C A R E

without exploring how a lack of power may force individuals to work two jobs
and leave them without enough time to prepare healthy meals.

Those sociologists, on the other hand, who focus on the sources, nature, and
consequences of power relationships can be said to use a critical approach. Critical
sociologists recognize that, regardless of how power is measured, men typically
have more power than do women, adults more power than children, whites more
power than African Americans, heterosexuals more power than those who are not
heterosexual, and so on. Critical sociologists who study health, illness, and health
care have raised issues such as how differing levels of power affects individuals’
access to health care and healthy living conditions.

Critical sociologists also emphasize how social institutions and popular beliefs
can reflect or reinforce the existing distribution of power. For example, many
researchers who study the U.S. health care system have looked simply for ways to
improve access to care within that system such as by providing subsidies to doctors
who practice in low-income neighborhoods. Those who use a critical approach
have asked instead whether we could provide better care to more people if we
changed the basic structure of the system such as by removing the profit motive
from health care to reduce the costs of care for everyone.

Similarly, critical sociologists have drawn attention to how doctors’ power
enables them to shape our ideas about health, illness, and health care. Most basi-
cally, these sociologists have questioned the very terms health, illness, and disability
and have explored how these terms can reflect social values as well as physical
characteristics.

In any sociological field, therefore, those who adopt a critical approach will
ask quite different research questions than will others. Within the sociology of
health, illness, and health care, this approach translates largely to whether so-
ciologists limit their research to questions about social life that doctors consider
useful—a strategy referred to as sociology in medicine—or design their research
to answer questions of interest to sociologists in general—a strategy referred to
as the sociology of medicine (Straus, 1957). Research using the latter strategy
often challenges both medical views of the world and existing power relationships
within health care.

To understand the difference between sociology in medicine and sociology of
medicine, consider the sociological literature on patients who don’t follow their
doctors’ advice. Reflecting doctors’ views of such patients as problematic, many
sociologists (practicing sociology in medicine) have explored ways to encourage
patients to comply with medical advice. In contrast, sociologists of medicine have
looked at the issue of compliance through patients’ eyes. As a result, they have
learned that patients sometimes ignore medical advice not out of foolishness but
because their doctors did not clearly explain the prescribed regimens or because
the emotional or financial costs of following that advice seem to outweigh the
potential benefits. Similarly, whereas those practicing sociology in medicine have
studied the experience of patienthood, those practicing sociology of medicine in-
stead have studied the broader experience of illness, which includes but is not
limited to the experience of patienthood. The growing emphasis on sociology of
medicine and on the critical approach has led to a proliferation of research on the

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10 C H A P T E R 1

many ways illness affects everyday life and on how ill individuals, their families, and
their friends respond to illness.

A BRIEF HISTORY OF DISEASE

One of the most important questions raised by critical sociologists is, how do
social conditions cause disease? Their research (along with research conducted
by historians and others) demonstrates that, across history, social factors such as
poverty, urbanization, and living conditions have fostered illness. This section pro-
vides a brief overview of disease throughout Western history, highlighting the role
played by social forces.

The European Background

To understand health in the modern world, it helps to begin with the Middle
Ages (approximately a.d. 800 to 1300), when commerce, trade, and cities began to
swell (Kiple, 1993). These shifts sparked a devastating series of epidemics. The term
epidemic refers to both any significant increase in the numbers affected by a disease
and the first appearance of a new disease. In the fledgling European cities, people
lived in close and filthy quarters, along with rats, fleas, and lice—perfect conditions
for transmitting infectious diseases such as bubonic plague and smallpox. In addition,
because cities lacked sewer systems, families would dump human waste into the
streets, where it eventually would be washed into local rivers. As a result, typhoid,
cholera, and other waterborne diseases that live in human waste flourished. Simulta-
neously, the growth of long-distance trade helped epidemics spread to Europe from
the Middle East, where cities had long existed and many diseases were endemic
(established within the population at a fairly stable level). In addition, religious pil-
grimages and crusades to Jerusalem helped spread diseases to Europe.

The resulting epidemics ravaged Europe. Waves of disease—including
bubonic plague, leprosy, and smallpox—swept the continent. The worst of these
was bubonic plague, popularly known as the “Black Death,” which killed at least
25 million Europeans—as much as half the population—between 1347 and 1351
(Gottfried, 1983; J. Kelly, 2005).

Although the great pandemics (worldwide epidemics) began diminishing
during the 15th and 16th centuries, average life expectancy increased only slightly,
for malnutrition continued to threaten health (Kiple, 1993). By the early 1700s,
however, life expectancy began to increase. This change can’t be attributed to any
developments in health care, for folk healers had nothing new to offer, and medical
doctors and surgeons (as will be described in more detail in Chapter 11) harmed at
least as often as they helped. For example, U.S. President George Washington died
after his doctors, following contemporary medical procedures, “treated” his sore
throat by cutting into a vein and draining much of his blood.

If advances in medicine did not cause the 18th-century increase in life expec-
tancy, what did? Historians commonly trace this change to a combination of social

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11T H E S O C I O L O G Y O F H E A LT H , I L L N E S S , A N D H E A LT H C A R E

factors (Kiple, 1993). First, changes in warfare moved battles and soldiers away
from cities, protecting citizens from both violence and the diseases that followed
in an army’s wake. Second, the development of new crops and new lands improved
people’s diets and their ability to resist disease. Third, women began to have fewer
children at later ages, increasing both women’s and children’s chances of survival.
Fourth, women less often spent long hours in exhausting fieldwork and so were
more often strong enough to survive childbirth. Infants, too, more often survived
because mothers could more easily keep their children with them to breastfeed.
(This would change soon, however, for the many women who would become
workers in emerging factories.)

Disease in the New World

In the New World, meanwhile, colonization by Europeans was decimating Native
Americans (Kiple, 1993). The colonizers brought with them more than a dozen
new diseases—including influenza, measles, and smallpox—for which the Native
Americans had no natural immunities. These diseases ravaged the Native Ameri-
can population, in some cases wiping out entire tribes (Crosby, 1986). Conversely,
life expectancy increased for those who emigrated from Europe to the colonies be-
cause the New World’s vast lands and agricultural resources protected them against
the malnutrition and overcrowding common in Europe.

The Epidemiological Transition

As industrialization and urbanization increased, many—especially the urban
poor—began dying at younger ages. The main killer was tuberculosis, followed by
influenza, pneumonia, typhus, and other infectious diseases. Except for tubercu-
losis, these diseases are all considered acute diseases—that is, diseases that strike
suddenly and disappear quickly, sometimes killing their victims, sometimes causing
only mild illness. By the late 19th century, however, deaths during infancy and
childhood and deaths at all ages from infectious disease began to decline rapidly.
Between 1900 and 1930, life expectancy—the average number of years individ-
uals can expect to live—increased from 47 to 60 years for whites and from 33 to
48 years for African Americans (Arias, 2003).

As infectious diseases declined in importance, chronic diseases gained impor-
tance. Chronic diseases are those that typically last several years or more such as
muscular dystrophy and asthma. During this period, heart disease, stroke, arthritis,
and diabetes became major causes of illness and disability. Increasingly, too, these
conditions shifted from primarily diseases of the affluent (formerly the only peo-
ple likely to enjoy long lives) to disproportionately diseases of the poor.

The shift from a society characterized by infectious and parasitic diseases and
low life expectancy to one characterized by degenerative and chronic diseases and
high life expectancy is referred to as the epidemiological transition (McKeown,
2009). This transition seems to occur around the world once a nation’s mean
per capita income reaches a threshold level (in 2017 dollars) of around $11,900
(Wilkinson, 1996). (See “Key Concepts: The Epidemiological Transition,” p. 12)

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12 C H A P T E R 1

Contrary to conventional wisdom, medical interventions such as vaccinations,
new drugs, and new surgical techniques played little role in the epidemiological
transition (Leavitt and Numbers, 1985; McKeown, 1979; McKinlay and McKin-
lay, 1977). For example, deaths from tuberculosis, scarlet fever, and typhoid were
all declining steadily by the early 1900s, even though doctors had no effective
treatments for these diseases until the 1940s (McKinlay and McKinlay, 1977). The
same was true for most other infectious diseases of that era. Similarly, historians
and other scholars suggest that medical care explains no more than one-sixth of
the overall increase in life expectancy during the 20th century and no more than
10% of the risk of dying in any given year (Bunker, Frazier, and Mosteller, 1994;
McGinnis, Williams-Russo, and Knickman, 2002; Schroeder, 2007).

How, then, can we explain the epidemiological transition? The answer appears
to lie in changing social conditions. Even though doctors at the time misunder-
stood the causes of various diseases, public health measures such as the devel-
opment of clean water supplies and sanitary sewage systems virtually eliminated
waterborne diseases like typhoid. These measures also reduced the number of mi-
nor infections individuals acquired, increasing their overall health and reducing the
risks of dying from diseases such as pneumonia and tuberculosis. Cleaner water
systems accounted for almost half of the overall rise in life expectancy and two-
thirds of the decrease in deaths among infants between 1900 and 1940 (Cutler and
Miller, 2005). Similarly, as living conditions and access to healthy foods improved,
so did the ability of individuals to resist infection and survive if they became
infected.

The Epidemiological Transition

The epidemiological transition refers to the point in a society’s history when deaths
from infectious and parasitic diseases fall significantly; life expectancies increase
significantly; and, consequently, degenerative and chronic diseases become more
common. For example:

Transition Stage

Stage Indicators

Pre-Transition:
United States,
1850

In Transition:
India, 2018

Post-Transition:
United States, 2018

Life Expectancy 40 years for whites
23 for African
Americans

69 years 78 years for whites
75 for African
Americans

Deaths from
parasitic and
infectious
diseases

Frequent Less frequent than in
the past, rare among
the growing middle
and upper classes

Rare

Deaths from
chronic diseases

Rare Increasingly frequent Frequent

KEY CONCEPTS

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13T H E S O C I O L O G Y O F H E A LT H , I L L N E S S , A N D H E A LT H C A R E

All these forces reduced the likelihood that babies would die young. As a
result, parents no longer needed to have many children to ensure that one or
two would survive long enough to support them in old age. At the same time,
as adults increasingly shifted to working in factories—some of which offered
pensions—their need to have numerous children to help on the farm or care for
them in old age declined. As a result, adults had fewer children and could devote
more resources to each child, further increasing their children’s chances of survival.

UNDERSTANDING RESEARCH SOURCES

The preceding discussion on the history of disease, as well as numerous other
discussions you will read in this book, may well challenge your previous ideas
about health and illness. To respond intelligently to these challenges, you need to
understand how researchers evaluate research sources and data. “Contemporary
Issues: ‘Scienciness’” (p. 13) explores some of the problems that may arise when the
public lacks the tools to evaluate research data.

Evaluating Research Sources

In any field, scholars give the most credibility to research that is published in the most
prestigious journals. In the sociology of health, such journals include the Journal of
the American Medical Association, the New England Journal of Medicine, the American

CONTEMPORARY ISSUES

“Scienciness”

The rise of the Internet has made it particularly easy for individuals and corporations
to use “scienciness”—the aura of scientific research—to sell the public on highly
dubious measures for treating or preventing illness. For example, the first webpage
identified in a November 3, 2010, Google search for “cure cancer” declared, “Cancer
can be cured and prevented naturally and scientifically. . . . [These are] facts that
have been proven in scientific labs, by doctors” (www.1cure4cancer.com). The
main purpose of the site is to convince viewers to buy laetrile, an extract typically
made from apricot or almond pits. To do so, the website uses “scientific” language
(“Laetrile is a decomposition product resulting from the hydrolysis of amygdalin”)
and “scientific credentials” (mentioning the names and university affiliations of
doctors who, it claims, have proven laetrile’s effectiveness).

In reality, no true scientific research has ever found evidence that laetrile works,
and no reputable scientific journals have ever published articles in favor of laetrile.
Studies have, however, found that cyanide found naturally in apricot and almond
pits can cause liver damage, coma, and even death (National Cancer Institute,
2010). Meanwhile, a vast number of other websites use scientific-looking charts,
“doctors” with degrees in art history, and self-published “journal articles” to sell
useless or potentially dangerous treatments for everything from acne to acquired
immunodeficiency syndrome (AIDS) to individuals who don’t understand how to
evaluate research sources and data (Goldacre, 2010).

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14 C H A P T E R 1

Journal of Sociology, and the Journal of Health and Social Behavior. These journals are
held in high esteem because each has existed for a long time, has a large readership,
publishes only a small percentage of the manuscripts it receives, and uses peer re-
view (that is, has several scholars review each manuscript before the journal decides
whether to publish it).

Similarly, scholars are most likely to trust data that come from reliable nonprofit
and nonpartisan sources. Thus this book draws heavily on statistics collected by the
U.S. government and by nonprofit groups such as the Mayo Clinic, the Kaiser Foun-
dation, and the World Health Organization (WHO), a United Nations orga-
nization charged with documenting health problems and improving world health.
Because these statistics are collected by bureaucrats whose employment typically con-
tinues regardless of shifts in the political climate rather than by groups with a partic-
ular political agenda, they are generally regarded as the most objective data available.
This holds true whether the data are found in print sources or on the Internet.

Box 1.1 suggests some long-standing Internet sites that provide particularly
useful information about health issues.

Evaluating Research Data

Both medical and sociological studies can be broadly divided into two research
categories: qualitative and quantitative. In qualitative studies, researchers may
spend months conducting in-depth interviews or observing a community. Qual-
itative research is evaluated most highly if the researcher actively sought data that
might support or challenge his or her preconceived notions and if the data the
researcher offers seem to logically support the conclusions he or she draws from
that data. Qualitative research is most useful for helping us understand how people

Useful Internet SourcesB o x 1.1

■ www.healthfinder.gov: Run by the United States Department of Health and
Human Services, this site offers a wide range of health information as well as an
extensive set of links to other government and nongovernmental health-related
sites.

■ www.nlm.nih.gov: This site provides access to both published and unpublished
materials available at the National Library of Medicine, the largest medical
library in the world.

■ www.mayoclinic.org: Run by the nonprofit Mayo Clinic, this site offers consumer
health information plus the opportunity to e-mail questions to physicians.

■ www.gapminder.org: Gapminder is a Swedish nonprofit organization that
provides free access to international health-related data and software for
vividly displaying that data.

■ www.who.int: WHO’s website provides a vast array of information about
health, illness, and health care around the world.

■ Scholar.google.com: This branch of the Google search engine takes viewers only
to scholarly journal articles, on health as well as other topics. This is an excellent
starting point for finding reputable information on any topic.

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15T H E S O C I O L O G Y O F H E A LT H , I L L N E S S , A N D H E A LT H C A R E

understand their lives, why people behave or think in specific ways, and how social
interaction works.

In contrast, quantitative research aims to understand people, nature, and so-
ciety by finding ways to turn observations into numbers and statistics. It is most
useful for assessing how often something occurs and how one thing may cause
another. Quantitative research is especially useful when based on large samples be-
cause such data are more likely to reflect trends among the population as a whole.
Research based on random samples is held in particularly high regard. In a ran-
dom sample, each member of a population has an equal chance of being selected
(such as when names are drawn out of a hat), so researchers can be more confident
that selected individuals will be representative of the population as a whole.

Quantitative research is regarded most highly when the researchers control for
the potential influence of extraneous factors—that is, they use statistical techniques
to eliminate the possibility that something else caused whatever the researchers are
studying. For example, compared to nonsmokers, Americans who smoke cigarettes
are more likely to get lung cancer and to be white. To determine whether smoking or
race causes lung cancer, researchers could divide their sample into four groups—white
smokers, white nonsmokers, nonwhite smokers, and nonwhite nonsmokers—and
then see what percentage of each group gets cancer. (In fact, among both whites and
nonwhites, those who smoke are more likely to get lung cancer.)

One important recent trend in quantitative research is the rise of big data:
huge studies that pull together multiple sets of data from entire populations. For
example, researchers were able to combine two national Danish registries—one of
every case of brain cancer in Denmark and one of every person who owned a cell
phone, beginning when cell phones were first introduced to the country—to con-
vincingly argue that cell phone use does not cause brain cancers (Frei et al., 2011).

Research based on big data is particularly convincing because it reflects virtu-
ally the entire population, so research results are likely to apply to everyone in that
population. In addition, because big data were typically collected initially for some
other purpose, they are less likely to be biased (as might happen, for example, if
a pharmaceutical company collects data on the effects of a drug it produces). Big
data are likely to play a growing role in sociological and medical research in com-
ing years, especially as doctors and health care systems increasingly record patient
data electronically (Bates et al., 2014).

SUMMARY

1. Topics in the sociology of health, illness, and health care include the nature
of the health care system; how social forces promote health and illness; the
experience of living with illness or disability; and the status, power, training,
and values of health care providers.

2. The sociological perspective sets sociologists apart from other health and
social researchers. This perspective focuses on explaining social patterns
rather than individual behavior and on identifying and resolving public
issues rather than personal problems.

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16 C H A P T E R 1

3. Sociology in medicine refers to sociological research that focuses on
answering questions that doctors consider useful.

4. Sociology of medicine focuses on how power affects health, illness, and
health care. Sociology of medicine is a branch of critical sociology that
focuses more generally on the sources, nature, and consequences of power.

5. Although disease has always accompanied human life, patterns of diseases
have varied over time and place for both social and biological reasons.

6. Epidemics refer to any significant increase in the numbers affected by a
disease or to the first appearance of a new disease. Pandemic diseases are
worldwide epidemics, such as HIV/AIDS currently. Endemic diseases are
those that continue to appear in a population at a relatively stable rate.

7. Devastating epidemics accompanied the rise of cities in medieval Europe. By the
early 18th century, however, life expectancy began to increase, primarily because
of improved living and working conditions, later and less frequent childbirth,
and changes in military strategies that separated soldiers and civilians.

8. Life expectancy increased further in the late 19th century, primarily because
of improvements in nutrition, living conditions, and public sanitation rather
than medical advances. Still, as in previous eras, the main causes of death
were infectious and parasitic diseases.

9. Currently, the main causes of death in Western nations are chronic illnesses
of middle and old age. The shift from a society characterized by low life
expectancy and infectious and parasitic diseases to one characterized by high
life expectancy and chronic diseases is known as the epidemiological transition.

10. To evaluate printed or online sources, readers must ask whether their data
come from a reputable source, were peer reviewed or otherwise checked for
quality and bias, were based on a representative sample of reasonable size,
and were controlled statistically for possible confounding factors.

REVIEW QUESTIONS

1. What is the sociological perspective?

2. How do the questions sociologists ask differ from those asked by
psychologists?

3. What does this textbook mean by a critical approach?

4. What is the epidemiological transition?

5. What is the difference between acute and chronic diseases?

6. What factors caused the decline in mortality between the 19th and early
20th centuries?

7. What are some ways a reader can tell whether a journal article or Internet
website is a reliable source of data?

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17T H E S O C I O L O G Y O F H E A LT H , I L L N E S S , A N D H E A LT H C A R E

CRITICAL THINKING QUESTIONS

1. How can knowing the history of disease help us to understand both current
health problems and how health patterns might change in the future?

2. Write three research questions about the causes of cancer. The first should
be a question a doctor might ask, the second a question a psychologist might
ask, and the third a question a sociologist might ask.

3. Assume you have found a website that argues for vitamin C as a cure for the
common cold. List three questions you would want to ask before deciding
whether to believe the website.

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18

2

C H A P T E R

2

The Social Sources

of Modern Illness

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19T H E S O C I A L S O U R C E S O F M O D E R N I L L N E S S

LEARNING OBJECTIVES

After reading this chapter, students should be able to:

● Use key epidemiological terms to describe the health of a population.
● Describe the modern disease profile in Western nations.
● Understand how social factors can lead to preventable deaths.
● Analyze the social processes that encourage or discourage healthy

behaviors.
● Identify the impact of social networks and social stress on health.

Judy Cude and her daughter Jenny live in the small city of Dickson, Tennessee.
When Jenny was about to give birth to her first child, Judy went with her to the
hospital. At first, everything seemed fine:

The attending physician kept up a cheerful, reassuring stream of talk as he
assisted Jenny with her labor. “Peyton came out face down. When Dr. Booker
turned [the baby] over, he stopped talking,” Judy recalled. “He had his back to
us, but when the nurse gave him a shove, he turned around, and he had tears
running down his cheeks.”

The baby’s face was badly disfigured with a cleft lip and a bilateral cleft
palate. And though they did not know it immediately, Peyton also had a
damaged heart, a valve that failed to close properly. . . .

Two weeks after Peyton was born, Jenny was given the name of another
mother in Dickson whose child, born a couple of months earlier, also had a cleft
lip and palate. Then a woman called Judy at her day care center and asked if she
could accommodate children with special needs because ultrasound tests found that
her child was about to be born with a cleft palate. “That made three,” Judy said.
She and the other mothers kept a tally. Soon they had counted six. Judy placed a
newspaper advertisement asking families with similar defects to contact her. And, as
it turned out, 19 children had been born in Dickson with a cleft lip and palate in
a little over two years. The odds against such a series of identical birth defects were
almost certainly too high to be coincidental. [Moreover,] within a brief period, four
babies were born with a rare brain malformation, where the two hemispheres of the
brain are not connected. There have been a large number of cases of hypospadias,
a condition in male children where the urethra is inverted. Dickson families also
reported a high incidence of heart defects and leukemia among their babies.

Eventually Judy would learn that most of the affected children lived near
the Dickson County landfill and that toxic wastes, including chemicals known to
cause cancers and birth defects, had been dumped there for years. (Shabecoff and
Shabecoff, 2010:4–5)

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20 C H A P T E R 2

At one level, disease is a biological process existing within an individual body.
As Judy’s story suggests, however, disease can stem from social conditions as well
as from individual biology. In this chapter, we explore the social sources of disease.
After reviewing the basic concepts needed to discuss diseases, we review modern
disease patterns. Then we focus on the major social sources of premature death
in the United States today (including environmental toxins). Finally, we explore
social factors that affect whether people will adopt healthier behaviors and whether
individuals will remain healthy regardless of their behaviors.

AN INTRODUCTION TO EPIDEMIOLOGY

The first essential concepts that students of health and illness need to understand
are disease and illness. To researchers and clinicians working with physical health
problems, disease refers to biological problems within organisms. In contrast, illness
refers to the social experience and consequences of living with a disease. Using
these terms, we might say that a man who is infected with the poliomyelitis virus
must adapt to physical disability caused by the disease called polio and to changes
in how others view him because he has the illness called polio. (Chapter 5 will
discuss the meaning of illness in more detail, and Chapter 7 will discuss how these
concepts are applied a bit differently to mental health problems.)

The study of the distribution of disease within a population is known as
epidemiology. This chapter and the next focus more specifically on social epide-
miology, or how social behaviors and factors (such as social class or use of tobacco)
affect the distribution of disease within a population. For example, whereas biolo-
gists might investigate whether heart disease is more common among those with
high cholesterol levels, social epidemiologists might investigate whether it is more
common among those with high incomes.

But what do we mean when we say a disease is “more common” among one
group than another? Data on infection with the human immunodeficiency
virus (HIV), the virus that in its later stages causes acquired immunodefi-
ciency syndrome (AIDS), provide a useful example. (This book uses the term
HIV/AIDS to refer to the full range of illness from the earliest stages of infection
with HIV to full-blown AIDS.)

As of 2014 (the latest data available as of 2018), more than twice as many Bra-
zilians have HIV/AIDS as do Botswanans (Population Reference Bureau, 2014).
At first glance, this might suggest that HIV/AIDS is a much greater problem in
Brazil than in Botswana. However, Brazil’s population is much larger than that of
Botswana. To take this difference into account, epidemiologists typically look at
the rate rather than the number of HIV/AIDS cases in a population. Rate refers to
the proportion of a specified population that experiences a given circumstance. For
example, to learn the rate of a HIV/AIDS in Brazil, we would divide the number
of people in Brazil who have the disease into the total number of people in the
country. In 2013, the rate of HIV/AIDS among adults was 3 per 1000 adults in
Brazil compared with 234 per 1000 adults in Botswana (Population Reference

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21T H E S O C I A L S O U R C E S O F M O D E R N I L L N E S S

Understanding Rates

Concept Example Advantages and Disadvantages

Raw
number

Around 10,000 Americans get
tuberculosis each year.

Hard to interpret on its own:
10,000 out of 100,000 would be
much scarier than 10,000 out of
300 million (the size of the U.S.
population).

Incidence
rate

The incidence of tuberculosis in
the United States is currently 3
per 100,000: there were 3 new
cases last year for every 100,000
Americans. In contrast, 10 years
ago the incidence of tuberculosis
was 6 per 100,000.

Provides overview of the
increase or decrease of a
disease, behavior, or condition:
how many new cases have been
identified.

Prevalence
rate

The prevalence of arthritis in the
United States is 230 per 1000:
out of every 1000 U.S. residents,
230 have arthritis (whether
diagnosed recently or years ago).

Provides overview of the
magnitude of a disease,
behavior, or condition: how
many people have it now,
regardless of when they got it.

KEY CONCEPTS

Bureau, 2014). This tells us that HIV/AIDS affects a greater proportion of the popu-
lation in Botswana than in Brazil. It also demonstrates the advantage of using rates
rather than raw numbers.

Two particularly useful types of rates are incidence and prevalence rates. Inci-
dence refers to the number of new occurrences of an event (disease, births, deaths,
etc.) within a population during a specified period. Prevalence refers to the total
number of cases within a population at a specified time—both those newly diag-
nosed (incidence) and those diagnosed in previous years but still living with the
condition under study. “Key Concepts: Understanding Rates,” p. 21, provides a
helpful comparison.

In general, incidence better measures the spread of acute disease. The term
incidence also better measures rapidly spreading diseases such as HIV/AIDS. For
example, to see how HIV/AIDS has spread, we might compare its incidence in
1981 with its incidence today. Prevalence, on the other hand, better measures the
frequency of chronic diseases.

Two final terms often used in epidemiology are morbidity and mortality.
Morbidity refers to symptoms, illnesses, and impairments; mortality refers to
deaths. To assess the overall health of a population, epidemiologists typically calcu-
late the rate of serious morbidity in a population (i.e., the proportion with serious
illness) and the rates of infant mortality and maternal mortality (i.e., the propor-
tion of infants and childbearing women who die during or soon after childbirth).
In addition, they typically calculate life expectancy (the average number of years
individuals born in a certain year are likely to live).

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22 C H A P T E R 2

But what if one population is much older than another? Because younger
people have decidedly different health risks than older people, it would be mis-
leading to compare these populations without taking this into account. For ex-
ample, Arizona’s population is younger on average than North Dakota’s, so we
would expect Arizona to have more deaths from skydiving and fewer from heart
disease than North Dakota. To deal with this issue, epidemiologists use age-
adjusted rates. These rates are calculated using standard statistical procedures that,
as Chapter 1 described, control for the effect of age differences among populations.

The next section uses epidemiological concepts and data to describe current
disease patterns.

THE MODERN DISEASE PROFILE

As the previous chapter discussed, patterns of disease had shifted markedly by the
beginning of the 20th century. No longer did most people in Western nations
die young of infectious or parasitic diseases (even though such diseases still rav-
aged poorer nations). Instead, most children survived childhood without major
illnesses, and most adults died in old age of chronic disease. Yet infectious disease
is on the rise once again.

The New Rise in Infectious Disease

The rising threat from infectious diseases first made medical news in 1981 when
the first cases of what would become known as HIV/AIDS were identified. Since
then, other new infectious diseases (such as Zika and Ebola virus diseases) have
been identified, long-established diseases (such as cholera and streptococcus) have
become deadlier, and previously harmless microorganisms (such as the virus that
causes avian influenza or so-called bird flu) have caused important disease out-
breaks (Armelagos and Harper, 2010; Oldstone, 2010).

The renewed dangers posed by infectious disease partly reflect basic principles
of natural selection. Just as natural selection favors animals whose camouflaging
coloration hides them from predators long enough to reproduce, natural selection
favors microorganisms that can resist drug treatments. As doctors prescribed anti-
biotics more widely, often under pressure from patients who feel cheated if they
don’t receive a prescription each visit, the drugs killed all susceptible variants of
disease-causing microorganisms while allowing variants resistant to the drugs to
flourish. Similarly, drug-resistant tuberculosis is increasing in nations where HIV/
AIDS and poverty leave individuals both more susceptible to infection and less
able to afford consistent, effective treatment. Meanwhile, the growing use of an-
tibiotics in everything from cutting boards to kitty litter, chicken feed, and soaps
also encourages the rise of drug-resistant bacteria.

Other forces also promoted the rise in infectious diseases (Oldstone, 2010).
In the same way that population growth and the rise of cities once fostered the
spread of infectious diseases in Europe, they are now causing new epidemics in

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23T H E S O C I A L S O U R C E S O F M O D E R N I L L N E S S

rapidly growing cities in Africa, Asia, and Latin America (Armelagos and Harper,
2010). Meanwhile, older cultural traditions often erode among those who move
to these cities, making health-endangering activities such as tobacco smoking and
sexual experimentation more likely. At the same time, industrial plans and cities are
growing into former forests and farmlands, bringing wild animals increasingly into
contact with humans. As a result, microorganisms that previously had infected only
animals now have the opportunity to infect humans as well (Quammen, 2013).

All of these factors have been heightened by globalization, the process through
which ideas, resources, people, and trade increasingly operate in a worldwide rather
than local framework. The erosion of cultural traditions in Asia, Africa, and Latin
America reflects, among other things, the increasingly global spread of Western ideas
by tourists, the mass media, businesspeople, and nongovernmental organizations such
as the United Nations and the International Monetary Fund. Similarly, environmen-
tal changes that encourage disease partly stem from actions taken by Western-based
industries and corporations, which now find it easy to operate internationally be-
cause of various international trade agreements. In addition, the globalization of
business investment and tourism has globalized disease simply by increasing the
number of people traveling from one region to another (Oldstone, 2010).

Finally, the rise in infectious disease reflects political decisions as well as bi-
ological realities. For example, providing clean needles to those who use illegal
drugs is a proven way of controlling the spread of HIV/AIDS and does not seem
to lead to greater use of drugs (Holtgrave and Curran, 2006). Yet only in 2016 did
the United States end a federal ban on funding needle-exchange programs. Simi-
larly, the Russian government’s policy of imprisoning large numbers of individuals
in miserable conditions has led to a rapid increase in tuberculosis in prisons and
then in society at large whenever prisoners are released (Goozner, 2008).

Today’s Top Killers

Despite the recent reemergence of infectious diseases, however, such diseases still
play a relatively small role in U.S. mortality rates. Table 2.1 shows the top 10 causes
of death in the United States in 2016 (the latest data available as of 2018) and
illustrates how these causes have changed since 1900.

As the table demonstrates, the top killers in 1900—influenza, pneumonia, and
tuberculosis—were infectious diseases that could strike at any age. Most of today’s
top killers—including heart disease, cancer, Alzheimer’s, and diabetes—are chronic
diseases primarily associated with older populations. These diseases now far out-
pace infectious diseases as causes of death.

But infectious diseases have not disappeared. Influenza and pneumonia remain
significant causes of death, although mostly they kill elderly people already in
poor health. In addition, HIV/AIDS remains a significant cause of death among
African Americans, who are less likely than others to have access to highly ef-
fective drugs for treating and preventing the disease (National Center for Health
Statistics, 2017a). Finally, Table 2.1 illustrates the role that social factors play in
mortality rates. Accidental deaths mostly stem from motor vehicle accidents (many

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24 C H A P T E R 2

of them linked to alcohol use), whereas tobacco use is the main cause of chronic
respiratory disease and is a common contributor to heart disease, cancer, and cere-
brovascular disease (strokes). Similarly, diabetes (which is a main cause of kidney
disease) largely reflects diet and exercise patterns. Each cause of death reflects social
behaviors rooted in social conditions. The remainder of this chapter discusses the
role social forces play in mortality and morbidity.

THE SOCIAL SOURCES OF PREMATURE DEATHS

In a widely cited article titled “A Case for Refocusing Upstream,” sociologist John
McKinlay (1994) offered the following oft-told tale as a metaphor for the modern
doctor’s dilemma:

Sometimes it feels like this. There I am standing by the shore of a swiftly
flowing river and I hear the cry of a drowning man. So I jump into the
river, put my arms around him, pull him to shore and apply artificial
respiration. Just when he begins to breathe, there is another cry for help.

So I jump into the river, reach him, pull him to shore, apply
artificial respiration, and then just as he begins to breathe, another
cry for help. So back in the river again, reaching, pulling, applying,
breathing, and then another yell. Again and again, without end, goes the
sequence. You know, I am so busy jumping in, pulling them to shore,
applying artificial respiration, that I have no time to see who the hell is
upstream pushing them all in. (McKinlay, 1994: 509–510)

Main Causes of Deaths, 1900 and 2016TABLE 2.1

1900
Rate per
100,000 2016

Rate per
100,000

Influenza and pneumonia 202 Heart disease 166

Tuberculosis 194 Cancer 156

Diarrhea, enteritis, intestinal ulcers 143 Accidents 47

Disease of the heart 137 Chronic lower
respiratory diseases

41

Cerebrovascular diseases (strokes) 107 Cerebrovascular
diseases (strokes)

37

Chronic kidney disease 89 Alzheimer’s disease 30

Accidents 72 Diabetes 21

Cancer 64 Influenza and pneumonia 14

Senility 50 Suicide 14

Diphtheria 40 Kidney disease 13

SOURCE: National Center for Health Statistics (2018)

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25T H E S O C I A L S O U R C E S O F M O D E R N I L L N E S S

This story illustrates the traditional emphasis within medicine on diagnos-
ing and treating illness and disability rather than preventing it. Moreover, even
when doctors, researchers, and others do focus on preventing illness, they typically
look only far enough upstream to see how individual psychological characteristics
(such as poor impulse control) or biological characteristics (such as a gene) may
make some people more susceptible than others to disease or unhealthy behaviors.
In contrast, although sociologists agree that biological and psychological factors
affect health, they also recognize that these factors don’t operate in a vacuum. For
example, adolescents are most likely to drink alcohol dangerously if their friends
and family do so. Similarly, the high rates of diabetes found among contemporary
Native Americans partially reflect individual decisions regarding exercise and diet.
But they also reflect the effects of living on reservations with ready access to fatty
and sugary foods, limited access to fresh fruits and vegetables, and high rates of
poverty, which can lead to poor nutrition and in the long run to diabetes (Be-
nyshek, Martin, and Johnston, 2001). In both cases, to blame unhealthy behavior
patterns on individual choices seems simplistic.

As these examples suggest, truly refocusing upstream requires us to look be-
yond individual behavior or characteristics to what McKinlay refers to as the
manufacturers of illness: those groups that promote illness-causing behaviors
and social conditions. These groups include alcohol distributors, auto manufactur-
ers that fight against vehicle safety standards, and politicians who vote to subsidize
tobacco production.

One way to refocus upstream is to examine data on the underlying causes of
premature deaths—that is, deaths caused by neither old age nor genetic disease
(McGinnis, 2015). Table 2.2 shows these causes and their prevalence (listed not by
disease but by the factors that cause disease). The next section looks at these 10
causes of illness.

Diet, Exercise, and Obesity

According to McGinnis (2015) and many others, a high-fat diet and sedentary
modern lifestyles have led to soaring rates of obesity across all age groups. In turn,
they argue, obesity has led to premature deaths from cardiovascular disease, strokes,
certain cancers, and diabetes. Moreover, even when obesity doesn’t kill, it can lead
to heart conditions, diabetes, sleep difficulties, and other problems that diminish
individuals’ quality of life (CDC, 2012).

The Obesity Myth? At the same time, however, research has accumulated
suggesting that the dangers of excess weight have been overstated (Campos,
2004; Gibbs, 2005). The best current research (Flegal et al., 2005, 2013) strongly
suggests that death rates (after controlling for smoking, illness, and other factors)
are indeed highest among those who are obese (e.g., 5′ 6″ and more than 180
pounds). But death rates are second highest among those who are underweight (e.g.,
5′ 6″ and less than 112 pounds). Moreover, death rates are lowest in those who
are overweight, but not obese; those considered normal weight have the second
lowest death rates.

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26 C H A P T E R 2

Why have studies disagreed so dramatically about the impact of weight on
mortality? Earlier studies were based on narrow populations (such as middle-aged
nurses), relied on self-reported weights and heights, controlled statistically for few
variables, and may not have reflected current conditions. In addition, many of the
studies that stressed the health risks of obesity were funded by the diet industry,
which may have colored the findings. In contrast, recent studies that have ques-
tioned the dangers of overweight and obesity were conducted by government
researchers whose research studies were primarily federally funded. Finally, con-
siderable research suggests that the real danger is not obesity but physical activity
and fitness (Blair and Church, 2004): Those who are obese but physically fit have
half the death rate of those who are normal weight but unfit.

“Supersizing” Americans Why have Americans gained so much weight over
the past generation? To answer this question, we need to look at how biology,
economics, and politics interact (Critser, 2003).

Biologically, humans naturally desire sweet and fatty foods. In past eras, when
food was scarce, these cravings helped humans stay alive. Now, though, most Amer-
icans have plentiful access to food and eat more calories than their bodies can use,
leading in the long run to weight gain. In addition, the rapid adoption by food
manufacturers of high-fructose corn syrup (an inexpensive sweetener) and palm
oil (an inexpensive fat) may have spurred rapid weight gains because the former
is metabolized by the body differently than are other sugars, and the latter is an
especially saturated fat (Critser, 2003).

Underlying Causes of Premature Death in the United
States, 2010

TABLE 2.2

Cause Percentage of All Deaths

Diet or activity patterns 18%

Tobacco 15

Medical errors in hospitalsa,b 3–13

Alcohol 3

Bacteria and virusesc 2

Toxic agents 2.5

Firearms 1.5

Motor vehiclesd 1

Sexual behavior 1

Illicit use of drugs 1

Total 48

aEstimates vary.
bOnly includes reported deaths from medical error.
cDoes not include deaths related to HIV, tobacco, alcohol, illicit drugs, or infections caused by
nonmicrobial diseases.
dIncludes motor vehicle accidents linked to drug use but not to alcohol use.

SOURCE: James (2013); Makary and Daniel (2016); National Research Council, Institute of Medicine (2015)

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27T H E S O C I A L S O U R C E S O F M O D E R N I L L N E S S

To these changes in what Americans eat were added changes in how much
Americans eat. Longer work weeks and the increase in two-earner and single-
parent families have led Americans to eat out more than ever before: Between
1970 and 2012, the percentage of Americans’ food expenditures devoted to eat-
ing out increased from 25% to 43% (U.S. Department of Agriculture, 2017). Yet
restaurant foods typically include far more fat and sugar than do homemade meals.
Moreover, since the 1970s, restaurants increasingly have offered “supersized” por-
tions, buffet tables, and packaged “value meals.” Unfortunately, few individuals
can restrict their calorie intake when offered large, varied meals, so this trend has
increased calorie consumption. For these reasons, the rise in eating away from
home has increased Americans’ calorie consumption by an average of 1400 calo-
ries per person per week (Critser, 2003:33). For example, teenage boys who eat at
fast-food restaurants three or more times a week consume 800 more calories per
day than do those who avoid fast food (French et al., 2001).

Food manufacturers and the fast-food industry have used advertising to fur-
ther encourage Americans to eat a sweet, fatty, high-calorie diet. Because manu-
facturers earn far less money selling healthy foods (such as fruits and vegetables)
than by selling highly refined products loaded with fat, sugar, and salt (such as
soft drinks and convenience foods), they spend 30 times more money on adver-
tising the latter foods (Nestlé, 2002:22). Such advertising has grown increasingly
insidious and now pervades every sphere of our society—especially those where
children can be found. Soft-drink companies, for example, encourage children to
drink soda by subsidizing soda machines in schools and advertising on television,
in magazines, on the Internet, and via iPad apps, cell phones, and video games
(Scharf and Deboer, 2016). Consumption of sugar-sweetened soft drinks is directly
and substantially related to obesity and diabetes among both adults and children
(Scharf and Deboer, 2016).

Meanwhile, as caloric consumption has increased, physical exercise has de-
creased. Because of budget cuts, only around one-third of U.S. states require any
time spent in physical education, and many of those have only minimal require-
ments (Shape America, 2016). And at home, few children these days are allowed to
spend their afternoons running free or playing nonorganized sports. Instead, poor
children are admonished to stay indoors to stay safe, and more affluent children are
shepherded from tutors to classes, to the occasional sports activity. Finally, few chil-
dren or adults nowadays commute by foot or bicycle to work, play, or shopping, so
physical activity is no longer built into most Americans’ daily lives.

Tobacco

As Table 2.2 shows, tobacco is a highly important source of preventable deaths
in the United States. Whether smoked, chewed, or used as snuff, tobacco can
cause an enormous range of disabling and fatal diseases, including heart disease,
strokes, emphysema, and numerous cancers. As many as half of all smokers will die
because of their tobacco use, losing an average of 15 years from their normal life
expectancy. Tobacco use also increases morbidity and mortality among “passive
smokers,” those who live and work around smokers (WHO, 2017a). Similarly,

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28 C H A P T E R 2

both active and passive smoking can cause birth defects and infant mortality. Un-
fortunately, quitting smoking is difficult because nicotine (the active ingredient in
tobacco) is highly addictive.

Given nicotine’s addictiveness, it’s easy to understand why individuals con-
tinue smoking once they have started. But why do individuals begin smoking in
the first place, especially when many initially find tobacco vile tasting and even
nauseating? To answer this question, we need to look at the role played by tobacco
manufacturers.

Since the 1960s, when research first proved the link between smoking and lung
cancer, tobacco manufacturers have labored to convince the public—especially
youths, women, and minorities—to associate tobacco with positive attributes
rather than with death and disability (Luke, Esmundo, and Bloom, 2000). To target
youths and minorities, manufacturers have advertised in movie theaters and at
sports events. To target women, manufacturers have played on women’s desire for
equality, excitement, personal fulfillment, and weight loss. This strategy was exem-
plified by the campaign for Virginia Slims—the name was not accidental—and its
slogan, “You’ve come a long way, baby.”

Since the 1990s, successful legal attacks on tobacco manufacturers and ad-
vertisers have eroded their ability to attract new customers. For example, tobacco
companies can no longer use cartoon characters in advertisements and now must
limit their sponsorship of sports and entertainment events. Public health cam-
paigns have also had an impact. Partly because of these campaigns, Americans in-
creasingly support the idea of “smoke-free” areas and a smoke-free culture (Givel
and Glantz, 2004; National Center for Health Statistics, 2014a).

As cigarettes have become less popular, however, tobacco manufacturers have
begun promoting electronic cigarettes (commonly known as e-cigarettes) as a safer
and “cooler” alternative. “Vaping” e-cigarettes has become widely popular, espe-
cially among adolescents attracted in part by flavors such as bubble gum that are
targeted at their age group (Jarmul et al., 2017; Wahowiak, 2017). Unfortunately,
although e-cigarettes seem clearly safer than regular cigarettes and can help people
stop smoking the latter, they still contain nicotine and still can lead to addiction.
More research is needed before we can fully assess their benefits and harms.

Medical Errors

Surprisingly, recent research suggests that medical errors are one of the top causes
of preventable deaths (James, 2013; Makary and Daniel, 2016). Medical errors
include conducting surgery on the wrong patient, giving a patient two drugs that
interact dangerously, or misdiagnosing and hence mistreating a patient.

When errors occur, it is natural to focus on identifying who is to blame. Yet
most errors occur despite the best efforts of health care workers (Kohn, Corrigan,
and Donaldson, 1999). Consequently, most researchers argue that we need to shift
our focus from individual errors to problematic systems (Makary and Daniel,
2016; Singer and Vogus, 2013). For example, many hospitals stock certain drugs
only at full strength, even though the drugs must be diluted to use safely. Stock-
ing these drugs in diluted form would eliminate this source of death much more

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29T H E S O C I A L S O U R C E S O F M O D E R N I L L N E S S

effectively than trying to identify every doctor or nurse who might administer the
wrong dosage. Similarly, fatal errors can easily occur when different drugs have
similar names: Someone with epilepsy, for example, who receives the antifungal
drug Lamisil instead of the antiepileptic Lamictal can die if his seizures continue
unabated. As this suggests, most fatalities result from the combination of human
error with systems that facilitate errors.

The lack of a system for identifying deaths caused by medical errors has ham-
pered efforts to prevent such deaths. During the 1950s and 1960s, hospitals rou-
tinely autopsied around half of the patients who died in their care. Now, because
of a combination of economic costs and fear that identifying errors might lead to
malpractice claims, hospitals autopsy only around 5%, thus virtually eliminating
one of medicine’s most basic tools for identifying medical errors (Burton and
Collins, 2014).

Medical culture, too, makes it difficult to control medical errors. Research
consistently finds that doctors rarely focus on identifying such errors (Bosk, 2003;
Orlander and Fincke, 2003; Pierluissi et al., 2003). Instead, because of professional
etiquette, the need to maintain good relations with colleagues, and a medical
culture that values individual doctors’ right to make their own decisions, most
errors are ignored, labeled unavoidable, blamed on nonmedical staff, or blamed on
doctors in other divisions (Pierluissi et al., 2003).

Awareness of these problems has sparked efforts to improve the situation. For
example, Veterans Administration hospitals now use a computerized record system
that gives nurses and doctors access to comprehensive information on their pa-
tients. In addition, the record system generates bar-coded strips that are attached
to each nurse, patient, and medication. Before administering medications, nurses
must scan their own bar code, their patients’ bar codes, and the medications’ bar
codes into a computer. The computer then checks that the nurse has the right
drug for the right patient and that the drug won’t interact dangerously with any
other drug taken by that patient. The federal government now provides this record
system for free to all U.S. doctors who treat patients under Medicare, the federally
funded insurance program for elderly and permanently disabled individuals.

Alcohol

Like tobacco, alcohol kills far more people than do all illegal drugs combined.
Heavy alcohol use can cause irreversible brain damage, hepatitis, heart disease,
cirrhosis of the liver, and cancers of the digestive system while reducing the body’s
ability to fight infections such as tuberculosis and pneumonia. In addition, by
diminishing individuals’ ability to make rational choices, alcohol use contributes
to deaths from drownings, fires, violence, and accidents, and it increases the odds
of engaging in unsafe sexual behavior. Yet the U.S. government’s “War on Drugs”
targets only illegal drugs.

To ensure that the government continues to treat alcohol as a beverage rather
than a drug, alcohol manufacturers contribute heavily to political campaigns
(Center for Responsive Politics, 2017). Manufacturers also have worked to define
the individual drinker rather than alcohol itself as the problem by promoting

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30 C H A P T E R 2

the idea that alcoholism only affects susceptible individuals, funding research on
presumed biological roots of alcoholism, supporting laws that make it illegal for
minors to drink, and opposing laws that would make it illegal to sell alcohol to
minors (Mosher, 1995).

At the same time, alcohol manufacturers have endeavored to sell drinking to
the public as a pleasurable “lifestyle.” Much of this marketing either directly or
indirectly targets youths. For example, manufacturers are most likely to advertise in
magazines, on television and radio shows, during athletic events that attract large
youth audiences, and at popular spring break destinations [Centers for Disease
Control and Prevention (CDC), 2006; Kwate, Jernigan, and Lee, 2007; Zwarun,
2006]. In addition, alcohol manufacturers have increased sales to youths by de-
veloping “alcopops”: extra-sweet, fruit-flavored alcoholic beverages such as Hard
Lemonade, Blast, and Skyy Blue. Advertisements for these and other alcoholic
beverages typically associate alcohol with adulthood, sexual adventure, status, free-
dom, excitement, and pleasure. Although in recent years alcohol manufacturers
have responded to public and governmental pressure and reduced their advertising
to youths, on average young people are still more often exposed to alcohol ads
than are adults (Ross, Henehan, and Jernigan, 2017).

Bacteria and Viruses

Bacteria and viruses surround us all the time. Yet only rarely do individuals be-
come infected, and even more rarely do these infections lead to deaths. Under
what conditions do these deaths occur?

First, individuals won’t develop fatal diseases if they are vaccinated against them.
Virtually all U.S. children are vaccinated before they begin school—but not nec-
essarily by the recommended ages (National Center for Health Statistics, 2017a).

Second, even in the absence of vaccinations, individuals exposed to micro-
organisms may not become infected unless they already are physically weakened.
For example, a significant percentage of all persons admitted to hospitals—a pop-
ulation that obviously is already physically vulnerable—develop infections while
in the hospitals, some of them life threatening. Similarly, individuals are far more
susceptible to infection if age, malnutrition, poor housing, insufficient clothing, or
other difficulties weaken their bodies. This explains why American tourists rarely
contract tropical diseases when they travel to countries where disease is endemic,
even if they don’t get vaccinated and don’t take drugs to prevent infection.

Third, the same factors that leave some people susceptible to infection help
explain why, among those who do become infected with a given disease, some die
whereas others experience only minor health problems. Measles, for example, is a
minor childhood disease in the United States but a major killer in poorer coun-
tries (as described in Chapter 4).

Fourth, among those who become ill, death or long-term disability may not
occur if individuals have ready access to good health care. For example, doctors
can cure most bacterial infections in otherwise healthy individuals, and simply
providing intravenous nutrition and fluids can save the lives of many infants who
experience life-threatening diarrhea.

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31T H E S O C I A L S O U R C E S O F M O D E R N I L L N E S S

Toxic Agents and Risk Societies

McGinnis (2015) traces 2.5% of premature deaths to toxic agents: substances
that can harm or kill people or other organisms. These agents can be divided
into occupational hazards and environmental pollutants. In “light” industries such
as electronics, workers are often exposed to a wide variety of potentially toxic
solvents, such as trichloroethylene. In traditional industries such as mining and
construction, welders often face substantially increased risks of lung cancer caused
by toxic levels of chromium and nickel. Similarly, agricultural workers are often
exposed to dangerous pesticides (as described in Chapter 3).

Unlike occupational hazards, environmental pollution most threatens children
because of their still-growing bodies and immune systems, the time they spend
playing outdoors, and their tendency to play on the ground and put things in
their mouths (U.S. Environmental Protection Agency, 2008). Toddlers are often
tempted to eat flakes of lead paint that fall on the floor in old houses or apartments
and that can cause mental retardation, learning disabilities, hearing deficiencies,
hyperactivity, and other problems. Pesticides on fruits and vegetables or in the air
near farm fields can cause cancers and other disabilities. Air pollution can lead to
asthma, bronchitis, and other respiratory problems. And hazardous waste sites and
contaminated water can cause birth defects, bacterial infections, and other health
problems.

In the long run, the greatest environmental health threat may be climate
change. During the past quarter century, emission of carbon dioxide from fossil
fuels used in industrial manufacturing and modern technologies has mushroomed.
According to the Intergovernmental Panel on Climate Change (2014), a joint
venture of the World Meteorological Organization and the United Nations En-
vironment Programme, this change has damaged the ozone level surrounding the
planet and has caused increased smog, dangerously erratic rainfall patterns, and
extreme temperature changes—both up and down—around the globe. As a result,
the risk of deaths from fire, floods, and malnutrition when crops fail has already
risen. The same is true of disease spread when algae and bacteria grow in water
supplies, when warmer climates extend the season for mosquitoes to spread disease
and for bacteria to grow in improperly cooled food.

All of these hazards posed by toxic agents result directly from the modern risk
society. Sociologists use the term risk society to refer to any society that depends
so heavily on potentially dangerous modern technologies that the risks from such
technologies become commonplace and accepted (Beck, 1992, 2006).

Individuals who become ill because of these risks face an uphill battle in
gaining recognition for their illnesses (Brown et al., 2002; Brown, Kroll-Smith,
and Gunter, 2000). By definition, these risks stem from technologies deemed cru-
cial to a society such as the production of oil, chemical fertilizers, and biological
weapons. Because these technologies bring considerable wealth and power to gov-
ernments and corporations, those institutions have a vested interest in maintaining
the status quo. As a result, individuals can find it exceptionally difficult to win
acknowledgment for their health problems, especially when they have access only
to doctors who work for the government or corporations.

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32 C H A P T E R 2

Firearms

According to McGinnis (2015), firearms account for 1.5% of all premature
deaths in the United States: 16,586 suicides, 10,801 homicides, 776 acciden-
tal deaths, and 270 shooting deaths by police. Death rates from firearms have
shown little change over the last few decades and are almost six times higher
in the United States than in other high-income nations (Wintemute, 2015).
Although many believe that they can protect themselves from violence by own-
ing a gun, numerous studies have found that a gun in the home significantly
increases the odds of suicide, homicide, and unintentional shooting deaths
(Wintemute, 2015).

Those who support firearm ownership typically argue that guns protect hon-
est citizens from attacks by criminals. Yet guns are used far more often against non-
criminals than against criminals. Furthermore, U.S. crime statistics demonstrate
that only a tiny percent of crime victims even try to use a gun in self-defense, and
that those who do are no more likely than others to avoid injury (Hemenway and
Solnick, 2015).

Although interest in gun control rises sharply after each mass murder (such
as the 2016 shooting in which 49 people were killed and 50 injured in a Flor-
ida nightclub), this interest has not translated into widespread legislative changes.
Those favoring gun control face heavy financial odds because the “gun rights”
lobby routinely donates around 10 times more to federal candidates than does the
“gun control” lobby (Center for Responsive Politics, 2017).

Motor Vehicles

McGinnis (2015) attributes 1% of all premature deaths to motor vehicle acci-
dents (including accidents involving drug but not alcohol use). These deaths
are not a necessary by-product of modern life. Rather, they reflect in part
a series of decisions regarding the design of automobiles and transportation
systems.

Motor vehicles have become considerably safer since 1966 when Congress
established the National Highway Traffic Safety Administration to regulate motor
vehicle design and oversee highway safety programs. Changes in street and high-
way design, greater enforcement of drunk driving laws, and public education cam-
paigns against drunk driving have reduced the number of accidents. Meanwhile,
mandatory changes in car design, coupled with laws requiring seat belts and child
car seats, have increased safety for passengers and drivers.

Unfortunately, automobile manufacturers have continued to oppose in-
expensive improvements that could save thousands of lives yearly, such as
strengthening bumpers or covering instrument panels with softer materi-
als to prevent head injuries. Equally important, legislators and government
regulators have continued to exempt vans, multipurpose vehicles, and light
trucks—which now account for more than 50% of all noncommercial vehicle
sales—from passenger car safety regulations, even though most consumers use
these vehicles as family cars.

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33T H E S O C I A L S O U R C E S O F M O D E R N I L L N E S S

Another key reason Americans die so often in motor vehicle accidents is
simply that they drive so much. In fact, even though increasing numbers of
young people now rely on public transportation or ride-sharing apps rather
than driving, overall more people drive more miles than ever before. As a result,
even with the increased safety of motor vehicles, per capita rates of injuries
and deaths from vehicles barely changed between 1966 and 2013—when they
spiked higher as more people bought cell phones and began using them while
driving (Leonhardt, 2017; Litman, 2013). To date, legislators have failed to out-
law the use of hands-free cell phones (which are almost as dangerous as other
cell phones). Similarly, both vehicle and cell phone manufacturers have failed to
install available technologies that by default restrict the use of cell phones inside
moving vehicles, even though those technologies allow users to override the
default settings.

Finally, Americans are particularly at risk from motor vehicle accidents be-
cause they have far fewer transportation options than do citizens of other wealthy
nations. Through a series of local and federal decisions, public transportation in
this country has declined significantly since its apex in the 1920s (Hayden, 2003).
Trains and railroad tracks have decayed while federal dollars have subsidized high-
way construction and motor vehicle production. Long-distance bus systems run
for profit have eliminated money-losing connections to many smaller communi-
ties. Meanwhile, cities spend billions for parking facilities, road construction, and
road maintenance but offer bus service only to limited locations, during limited
hours, and on a limited schedule. Consequently, whereas a French citizen can use
publicly subsidized trains or buses to go to any town or city in France on any
given day and probably at several different times, an American citizen often has
no way to go by public transportation from one town to the next. For example,
Phoenix, Arizona, is the sixth largest city in the United States but has no passenger
rail service.

Sexual Behavior

McGinnis (2015) attributes 1% of premature deaths to sexual behavior, primarily
via hepatitis B, HIV/AIDS, and cervical cancer. The first two are directly trans-
mitted through sex, and the last is most often caused by human papillomavirus, a
sexually transmitted virus. McGinnis (2015) also includes in this category infant
mortality after unplanned and unwanted pregnancies.

No “manufacturer of illness” benefits from convincing people to engage in
sexual activity without protecting themselves against disease or pregnancy, but
social conditions can encourage such behavior. First, those forced by economic
necessity to turn to prostitution to support themselves, whether male or female,
often find that they can’t suggest safer sex to clients without losing business or
risking violence. Similarly, those whose intimate relationships are not based on
mutual respect and equality sometimes find that suggesting safer sex to their ro-
mantic partners results in violence or abandonment (Wingood and DiClemente,
1997). Finally, those who have learned to have little hope for the future—a senti-
ment particularly common among youths in communities wracked by racism and

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34 C H A P T E R 2

poverty—sometimes believe they have little to lose by engaging in unsafe sexual
activity (Plotnick, 1992).

Other sexually active individuals, however, do fear sexually transmitted
diseases (STDs) and pregnancy but lack knowledge about safer sexual prac-
tices or access to birth control. Only half of U.S. states require that schools
teach sex education (Guttmacher, 2017a). In addition, half of all states require
that abstinence be stressed if sex education is taught, even though research
overwhelmingly suggests it doesn’t work (Kohler, Manhart, and Lafferty,
2007). Such education delays individuals’ first sexual intercourse by only
around three months while significantly reducing the odds that condoms will
be used.

Meanwhile, access to birth control and abortion has declined. Cuts in pub-
lic funding for contraceptive services have reduced options for teenagers and
low-income women, the groups most at risk for unplanned pregnancies and
infant mortality. Similarly, the federal government will pay for abortions for
women on Medicaid (the government-funded health insurance program for
poor persons) only if the woman’s life is endangered. Meanwhile, cutbacks in
government funding for abortions, strict new laws and regulations, and harass-
ment or even violence against abortion providers have reduced the number and
geographic distribution of abortion providers. Moreover, few medical schools
now teach students how to perform abortions, making it the only medical pro-
cedure that doctors can refuse to learn. Currently, 39% of U.S. women live in
counties without any abortion provider (Allan Guttmacher Institute, 2017b).
Other restrictions such as requiring waiting periods or parental consent before
abortions also limit access, especially for poor and young women. Yet despite
these restrictions, abortion remains common: An estimated one-third of all U.S.
women will have an abortion at some time during their lives (Allan Gutt-
macher Institute, 2010). As a result, preserving the safety of abortion services is
an important health issue.

Illicit Drug Use

Although far less deadly than tobacco or alcohol, illicit drug use (including
intentional overuse of drugs initially prescribed for pain relief) nevertheless
ranks among the top 10 causes of premature death. Illicit drug use can kill
users through overdose, suicide, motor vehicle injury, HIV infection, pneu-
monia, hepatitis, and endocarditis (heart infections). In addition, illicit drug
use can kill nonusers by contributing to homicide and birth. Similarly, illicit
drug use can contribute to dangerous behaviors. “Contemporary Issues: The
Opioid Epidemic,” p. 35, addresses the sharp rise in death and disease linked
to opioid drugs.

The Impact of Illegality Added to the inherent dangers of illicit drug use
are the dangers caused by its illegality. As mentioned earlier, when drug users

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35T H E S O C I A L S O U R C E S O F M O D E R N I L L N E S S

CONTEMPORARY ISSUES

The Opioid Epidemic

Currently, most deaths from drug use in the United States are caused by opioids,
including heroin, OxyContin, and Fentanyl. The latter has played an especially large
role in deaths because it is 50 times stronger than heroin (National Institute on
Drug Abuse, 2016, 2017). Although opioids cause no direct damage to the human
body, an overdose can lead to death, usually by suppressing the natural inclination
to breathe. Map 2.1 shows the distribution of overdose deaths around the U.S.

Illicit use of opioids has increased steadily since at least 2002 (National Institute
on Drug Abuse, 2017). Many individuals began using drugs like Fentanyl and
OxyContin on the advice of doctors, who believed manufacturers’ claims that these
drugs were less addictive than older opioids—a claim that was quickly disproved.
Ironically, African Americans were less affected than others by this trend because
they had less access to health care and were more often refused pain medicine by
doctors (Hansen and Netherland, 2016).

Over time, many who became addicted to drugs initially prescribed by doctors
for pain relief have found that their doctors will no longer fill those prescriptions,
whether because the doctors now view them as addicts or because the doctors fear
prosecution under new laws designed to prevent overprescription of opioids. As
a result, many who started on prescription opioids now use illegal opioids such as
heroin.

Fortunately, easily administered nasal sprays of the drug nalaxone are now
available that can quickly counteract overdoses of opioids and prevent death.
These sprays have been used successfully by police forces and emergency medical
providers around the country, and they will soon be available by prescription to
individuals as well. Unfortunately, many people oppose their use for fear they will
increase addiction.

can’t obtain clean needles legally, they are likely to share needles and thus
increase their risks of HIV/AIDS, hepatitis, and other infections. Similarly,
users who buy drugs on the street can’t know how powerful the drugs are.
For example, individuals who typically inject heroin that is 30% pure can die
if they accidentally buy heroin that is 60% pure, thus doubling their usual
dosage.

Similarly, individuals who must purchase drugs at the extraordinarily high
prices charged by illegal sellers are quickly ground into poverty. Once they no
longer can afford proper food, clothing, or shelter, their vulnerability to all sorts
of illnesses increases. Moreover, the high prices of illegal drugs can pressure
users to engage in crime, including violent crimes that can damage the health
of others.

Research consistently shows that prevention and treatment programs are both
cheaper and more effective than criminal sanctions in reducing the use and so-
cial costs of illegal drugs (Frakt, 2017). Unfortunately, most government funding
for drug control goes to the criminal justice system rather than to prevention or
treatment.

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36 C H A P T E R 2

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37T H E S O C I A L S O U R C E S O F M O D E R N I L L N E S S

THE HEALTH BELIEF MODEL, HEALTH LIFESTYLES,
AND HEALTH “PROJECTS”

It is no secret that tobacco, guns, and sex without condoms can kill. So why do
some people engage in behaviors that place their health at risk? Conversely, why
do others make maintaining their health an all-consuming project? To address
these questions, sociologists turn to the concepts of the health belief model, health
lifestyles, and health projects.

The Health Belief Model

Within the health care world, compliance refers to individuals’ willingness to
follow medical advice. The most commonly used framework for studying com-
pliance to medical advice is the health belief model (Becker, 1974, 1993;
Rosenstock, 1966). The model was developed to explain why healthy individuals
adopt healthy behaviors. According to the model, four factors affect these deci-
sions: Individuals must believe (1) that they are susceptible to a particular health
problem, (2) that the problem is serious, (3) that adopting preventive measures will
reduce their risks significantly, and (4) that no significant barriers make it difficult
for them to adopt those measures. For example, people are most likely to adopt a
low-fat diet if they believe that otherwise they will face high risks of heart disease,
that heart disease will substantially decrease their life expectancy, that a low-fat
diet will substantially reduce their risk of heart disease, and that such a diet won’t
be too costly, inconvenient, or unpleasant. In turn, according to the health belief
model, these four factors are affected by demographic variables (such as the indi-
vidual’s gender and age), psychosocial variables (such as personality characteristics
and peer group pressures), structural factors (such as access to knowledge about
the problem and contact with those who experience the problem), and external
cues to action (such as media campaigns about the problem or doctors’ advice).
“Key Concepts: The Health Belief Model,” p. 38, outlines how this model works.

Although this model recognizes that social factors as well as individual psy-
chological factors affect health decision making, in practice it is most often used to
explain individual choices. In other words, researchers who use this model tend to
emphasize agency—individual free will to make choices—over structure—social
forces that limit the choices individuals realistically can make (Cockerham, 2005).
As a result, such researchers, along with most policy makers, more often promote
policies such as educating consumers about the dangers of smoking than policies
such as banning smoking in public places. The debate over the relative impor-
tance of agency and structure—sometimes referred to as “life choices” versus “life
chances”—is at the center of many theoretical discussions within sociology and,
even more so, between sociology and other fields such as psychology and medicine.

Health Lifestyles

All human behavior is affected by both agency and structure. No one blindly fol-
lows every social rule and expectation. Nor is anyone fully free of socialization,

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38 C H A P T E R 2

cultural expectations, and social limitations on what options are truly available.
Nevertheless, knowing the social groups that individuals belong to helps us predict
their odds of adopting various health behaviors: Lower-class citizens are far more
likely than upper-class citizens to smoke, men are far more likely than women to
drink heavily, and so on. Consistent patterns such as these led sociologist William
Cockerham to propose the health lifestyle theory. This theory acknowledges
both agency and structure but emphasizes group rather than individual behaviors.
Compared with the health belief model, this new theory offers a more com-
prehensive analysis of why healthy behaviors are or are not adopted (see “Key
Concepts: Health Lifestyle Theory,” p. 39).

Cockerham (2005:55) defines health lifestyles as “collective patterns of
health-related behavior based on [life] choices from options available to people ac-
cording to their life chances” (emphasis added). According to this theory, decisions
about healthy and unhealthy behavior begin with demographic circumstances,
cultural memberships, and living conditions. These factors directly affect individu-
als’ life chances, such as whether they have the education needed to avoid physically
dangerous jobs. In addition, demographic circumstances, cultural memberships,
and living conditions indirectly affect life choices through their effect on socialization
and life experiences. Those who grow up with parents who consider all alcohol
use immoral, for example, will be less likely to drink as adults than those whose
parents considered alcohol to be just another beverage.

At the same time, life choices affect life chances and vice versa. For example,
those who choose to drive safely (a life choice) are more likely to avoid injury

The Health Belief Model

People Are Most Likely
to Adopt Healthy
Behaviors When They:

Example: Adopting Healthy
Behaviors Likely

Example: Adopting
Healthy Behaviors
Unlikely

Believe they are
susceptible

40-year-old smoker with
chronic bronchitis who
believes he is at risk for lung
cancer

16-year-old boy who
believes he is too healthy
and strong to contract
an STD

Believe risk is serious Believes lung cancer would
be painful and fatal and
does not want to leave his
young children fatherless

Believes that STDs can all
be easily treated

Believe compliance will
reduce risk

Believes he can reduce risk
by stopping smoking

Doesn’t believe that
condoms really prevent
sexual diseases

Have no significant
barriers to compliance

Friends and family urge him
to quit smoking, and he can
save money by so doing

Enjoys sexual intercourse
more without condoms

KEY CONCEPTS

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39T H E S O C I A L S O U R C E S O F M O D E R N I L L N E S S

(a life chance). Conversely, those who live in poverty (a life chance) may choose to
drive fast (a life choice) because doing so is a cheap source of fun and they don’t
expect to live long anyway. As this theory suggests, life choices and life chances
come together to create habitual dispositions toward health behaviors—rou-
tine, almost instinctual ways of thinking about whether certain behaviors are or are
not worth adopting. These dispositions are crucial to the health lifestyles adopted
by individuals and groups.

Finally, Cockerham notes, not only do dispositions affect health lifestyles, but
also health lifestyles affect dispositions. As people’s ways of thinking about behav-
iors such as smoking change, so do their behaviors. And as their behaviors change,
so do their dispositions.

Health Lifestyle Theory

Demographic circumstances
(includes class, age, sex,

ethnicity)

Cultural memberships (includes
religious, social, political

groups)

Living conditions (includes
housing, food, neighborhood

safety)

Life chances Life choices

Habitual dispositions toward
health behaviors

Health lifestyles: pattern of
healthy and unhealthy behaviors

Socialization and life
experiences

KEY CONCEPTS

SOURCE: Cockerham (2005)

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40 C H A P T E R 2

Health Projects

One outgrowth of the health lifestyle currently common among middle- and
upper-class Americans is the rise of the “health project.” The idea of a health
project draws on the idea of a body project. As originally developed, the latter
term referred to the intense focus that many young women now bring to shap-
ing their bodies and to the ways that those activities are now considered both
important work and central to individual identity (Brumberg, 1997). Similarly, we
can speak of a modern health project, which is common among many affluent
Americans, that requires individuals to actively protect their health and defines
this as important work central to individual identity (Shilling, 2002). This health
project reflects both the modern emphasis on appearance and the long-standing
American emphasis on the virtues of hard work.

Embedded in the concept of the health project is the idea that good health
comes not from God, nature, or genes but from individual hard work. Similarly,
the health project is based on the assumption that the body is both unfinished and
highly malleable, so individuals can always choose to shape and control it (Dworkin
and Wachs, 2009). Conversely, the health project suggests that those who don’t take
on this work are “slackers,” less morally worthy than those who do so. For this rea-
son, it’s not at all unusual to hear lawyers, businesspeople, and others offhandedly
mention their various athletic injuries, not only to elicit sympathy but also to subtly
suggest their “moral” worth. These ideas are reinforced by a wide range of media
(television shows, magazines, advertisements, and others) that constantly exhort
us to work on our diets, “abs,” and cholesterol levels (Dworkin and Wachs, 2009).

SOCIAL STRESS AND SOCIAL NETWORKS

Even among those who smoke, drink, or engage in other risky behaviors, some
individuals are more likely to survive to old age than others. And even among
those who do everything “right,” some will die earlier than others, even if those
others share their genes, physical environment, and living conditions. To under-
stand this paradox, sociologists have looked at the concepts of social stress and
social networks.

Social Stress

The term stress has three major meanings. First, stress refers to situations that make
individuals feel anxious and out of balance. Second, stress refers to the emotions that
result from exposure to such situations. Finally, stress refers to the bodily changes
that occur in response to these situations and emotions. For example, a fight with
a friend is a stress that can produce the emotion of stress and lead to the physical
stress of tensed muscles, rapid heartbeats, and heavy breathing. Stress can be either
acute (such as the death of a spouse) or chronic (such as long-term loneliness or
financial difficulties resulting from a spouse’s death). Importantly, stress is often

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41T H E S O C I A L S O U R C E S O F M O D E R N I L L N E S S

cumulative. An individual’s cumulative stress burden—the sum of acute and
chronic stresses that one has experienced—is a powerful predictor of ill health
(Thoits, 2010).

Stress is a natural, unavoidable, and sometimes beneficial part of life. Thou-
sands of years ago, hunters experienced stress as they anxiously prepared to track
wild animals. That emotional stress put physical stress on their bodies, but it also
kept their minds focused on their tasks. If, for example, a wild animal suddenly
attacked, a hunter might survive because the emotional stress resulted in the
physical stress response known as the fight-or-flight syndrome. The same quick
heartbeat we experience while fighting with a friend could have saved the life of
someone fighting a lion, because these physical changes help our bodies produce
additional energy and oxygen and hence respond more quickly and effectively
to threats.

Although the fight-or-flight response works well for dealing with sudden
threats such as rampaging lions, speeding cars, and last-minute quizzes, it is far
less useful for dealing with less acute but chronic stresses such as poverty or an ill
child. Each time the body responds to a threat, it uses muscles, energy, and other
resources. Over the long run, such stresses can wear out the body and lead to
heart disease, diabetes, and other illnesses as well as encourage individuals to adopt
unhealthy behaviors such as smoking tobacco or having sex without condoms
(Avison and Thomas, 2010; Sapolsky, 2004).

The impact of the stress, however, depends heavily on the nature of the stress:
Studying for a short quiz, for example, is less stressful than failing a final exam.
Stress is particularly likely to affect health when it stems from a “fateful loss,”
is physically exhausting, or disrupts social support systems (Avison and Thomas,
2010). For example, an accountant who loses his job, has to work exhausting
double shifts as a cashier to replace his lost income, and no longer has the time or
money to hang out with friends will likely experience dangerous levels of stress. As
this suggests, chronic stress is especially important, diminishing individuals’ abilities
to ward off infections, depression, and other health problems (Avison and Thomas,
2010; House, 2002; Siegrist, 2010).

But even when exposed to similar levels of stress, some individuals are more
susceptible to illness than others. The likelihood that stress will affect health de-
pends in part on how individuals appraise the stress and how they cope with the
stress. In turn, both responses to stress depend on the social resources individuals
bring to the situation (Avison and Thomas, 2010). For example, flunking an exam
is far more stressful for a student who risks losing his scholarship than for other
students. It will also be less stressful if the student copes by quickly seeking out a
good tutor rather than by getting high or blaming her grade on an incompetent
teacher. But the student’s ability to respond effectively will also be determined in
part by her social resources: Has she learned from a young age to turn to alcohol
as a coping measure? Do her friends encourage her to continue trying or to drop
out? Does she have the funds needed to hire a tutor and the contacts needed to
find a good one? The answers to these questions will affect whether this acute
stress leads to chronic stress and, in the end, to ill health.

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42 C H A P T E R 2

Gender, Race, Class, and Social Stress

As this suggests, the likelihood of experiencing traumatic social stress depends in
part on one’s position in society (a topic described in more detail in Chapter 3).
Men, for example, more often experience traumatic physical injuries on the job,
but women more often experience chronic stress from holding jobs while raising
children. Women, however, typically have a greater cumulative stress burden, which
may explain their higher rates of disability (Thoits, 2010).

Minorities, too, have higher cumulative stress burdens and resulting ill health.
That stress burden includes the emotional burden of living with racist discrimi-
nation and prejudice (Thoits, 2010). In addition, discrimination and prejudice in-
crease the odds that such individuals will be poor and (even if not poor) will live in
neighborhoods characterized by poverty, neglect, crime, and pollution—all factors
that can contribute to stress, illness, and injury. Immigrants, too, may face similar
problems, especially if they belong to a stigmatized minority or have entered the
country illegally.

Similarly, individuals with lower incomes and education levels experience
more stress overall than do more affluent, better-educated individuals (Thoits,
2010). Poverty exposes individuals to a wide range of stresses, including hunger,
worries over bills, poor living conditions, and physically exhausting work. More-
over, poor people are far more likely to hold jobs that combine high demand—bosses
constantly pressuring workers to produce more and faster—with low control—
bosses who offer workers few choices, even over seemingly small issues such as
when to take bathroom breaks. Such working conditions are particularly likely to
result in dangerous levels of stress (Siegrist, 2010).

Social Networks

Whereas social stress can lead to ill health regardless of individuals’ behaviors,
social networks can either increase or worsen health (Smith and Christakis, 2008;
Thoits, 2010). Social networks are the webs of social relationships that link peo-
ple to each other, whether as friends, relatives, acquaintances, or coworkers or
in some other way. Because most social networks are relatively homogeneous—
primarily linking people who share ethnicity, social class status, personality traits,
political views, and so on—they tend to amplify the advantages and disadvantages
that different social groups already experience.

Social networks affect health in various ways. Among other things, social net-
works offer individuals access to social support, financial assistance, health infor-
mation, and other forms of aid that can help them stay (or become) healthy. In
general, people with smaller social networks, only weak ties to others in their
networks, or networks that tie them to poor and marginalized individuals will
be less able to avoid or recover from illness, injury, or substance abuse (Smith and
Christakis, 2008).

Networks also affect health by exposing individuals to specific social norms.
If, for example, several individuals in a social network smoke tobacco or engage in
violent fights, others who join that network may conclude that those behaviors are

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43T H E S O C I A L S O U R C E S O F M O D E R N I L L N E S S

acceptable and therefore start doing the same (Bond and Bushman, 2017; Kaplan
et al., 2001). Conversely, joining new social networks can reduce individuals’ health
risks when, for example, a student from a poor family transfers to a middle-class
school and gains access to a new social group that frowns on tobacco use or
encourages athletic activity.

IMPLICATIONS

Recent years have seen an increasing tendency to blame individuals for their own
health problems (a topic discussed further in Chapter 5). As we have seen, how-
ever, patterns of disease stem from social conditions as much as if not more than
from individual behaviors or biological characteristics. As Marshall Becker, a so-
ciologist and one of the researchers who has done the most to help elucidate why
people engage in health-endangering activities, writes:

I would argue, first, that health habits are acquired within social groups
(i.e., family, peers, the subculture); they are often supported by powerful
elements in the general society (e.g., advertising); and they have proven
to be extremely difficult to change. Second, for most people, personal
behavior is not the primary determinant of health status and it won’t be
very effective to intervene at the individual level without concomitant
attempts to alter the broader economic, political, cultural, and structural
components of society that act to encourage, produce, and support poor
health. (1993:4)

In sum, to improve the public’s health we must look beyond individual behav-
ior and personal troubles to structural issues and, in C. Wright Mills’s terms, public
issues. Such a change in focus will enable us to address the underlying causes of
illness and to ensure that national health policy is driven by concern for the public
rather than concern for special interests.

SUMMARY

1. Epidemiology refers to the distribution of illness in a population. Epidemiologists
rely on concepts such as life expectancy, mortality and morbidity rates,
incidence, and prevalence. Incidence refers to the number of new occurrences
of an event (disease, births, deaths, etc.) within a specified population during
a specified period. Prevalence refers to the total of both new cases existing in a
population at a given time and older cases that are still surviving.

2. Infectious illnesses again have become a growing source of illness and death
in the Western world, partly because of the overuse of antibiotics, changing
physical environments, and globalization. HIV/AIDS is an example of the
resurgence of infectious diseases.

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44 C H A P T E R 2

3. Sociologists suggest that to improve the population’s health, we should look
beyond individual behavioral choices to the manufacturers of illness: groups
that promote illness-causing behaviors and social conditions.

4. Research suggests that 10 factors account for at least 50% of all preventable
deaths. In order of importance, these are diet and activity patterns, tobacco,
medical errors, alcohol, bacteria and viruses, toxic agents, firearms, motor
vehicles, sexual behavior, and illicit drugs. The dangers posed by toxic agents
reflect life in a risk society, one in which dangerous modern technologies and
the risks they pose have become commonplace and accepted.

5. The health belief model predicts that individuals will be most likely to adopt
healthy behaviors if they believe they are susceptible to a problem, believe
the problem is serious, believe changing their behaviors will decrease the
risk, and face no significant barriers to so doing. Health lifestyle theory
offers a more comprehensive analysis of why healthy behaviors are adopted
by emphasizing social structure as well as personal agency.

6. Many middle- and upper-class Americans now focus intently on protecting
their health and consider such work—known as a health project—central to
their identity.

7. Social stress has three meanings: (a) situations that make individuals feel
anxious and out of balance, (b) the emotions that result from exposure to
such situations, and (c) the bodily changes that occur in response to these
situations and emotions. Social stress, especially when chronic, can cause
physical and mental health problems.

8. The likelihood that stress will affect health depends on how individuals
appraise the stress and on how they cope with the stress, both of which
depend on individuals’ social resources. It also depends on individuals’
position in society.

9. Social networks are the webs of social relationships that link people to each
other. Health risks are greatest among those with small social networks, only
weak ties to others in their networks, or networks that tie them to poor,
marginalized individuals.

REVIEW QUESTIONS

1. What is the difference between morbidity and mortality and between
incidence and prevalence?

2. What factors have caused the recent increases in infectious diseases?

3. How is globalization affecting rates of disease?

4. How have the “manufacturers of illness” increased deaths caused by tobacco?
By alcohol? By toxic agents? By diet?

5. How have social forces and political decisions increased deaths caused by
sexual behavior? By illegal drugs?

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45T H E S O C I A L S O U R C E S O F M O D E R N I L L N E S S

6. What system-level factors help to explain medical errors? How does medical
culture keep doctors from identifying medical errors?

7. Think of someone you know who smokes or engages in another unhealthy
behavior. Use the health belief model to explain what would have to change
for him or her to change this behavior. Then use health lifestyle theory to
explain why you do or don’t have a generally healthy lifestyle.

8. What are the benefits of the modern health project? What problems does
the health project cause for those who adopt it? For those who don’t?

9. How does social stress affect health? How do gender, race, and class affect
average levels of social stress?

10. How can social networks reduce individuals’ health risks? How can they
increase those risks?

CRITICAL THINKING QUESTIONS

1. What are the political consequences of focusing on how social factors cause
illness rather than focusing on biological factors?

2. This text identifies tobacco and alcohol as two of the most important
underlying causes of premature death in the United States. What social
policies would help stop the manufacture of illnesses by alcohol and tobacco
in the first place? (Be sure you do not confuse this with policies that would
stop individuals from using these substances or would treat the health
consequences of using these substances.)

3. Think of something you do (or believe you should do) to protect your
health such as wearing seat belts, wearing bike helmets, drinking alcohol
only moderately, eating fruits and vegetables, or flossing your teeth. Use the
health belief model to explain why you do or don’t take these precautions.
(If you can’t think of an example from your own experience, use an example
from a friend or relative’s life.)

4. First, use each of the four elements of the health belief model to explain why
so few Americans eat five portions of fruits and vegetables daily. Second,
explain why policy makers who want to improve Americans’ diets need to
additionally pay attention to one element from health lifestyle theory (you can
choose any element).

5. Think of someone you know whose health is poor. How might social stress
have worsened his or her health? How might this person’s health problems
have increased his or her stress?

6. Think of a social network you belong to (such as a fraternity, religious
organization, athletic team), and discuss the effect of that social network on
your health and health behaviors.

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46

C H A P T E R

2

The Social Distribution of

Illness in the United States

3

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ar

ka
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47T H E S O C I A L D I S T R I B U T I O N O F I L L N E S S I N T H E U N I T E D S TAT E S

LEARNING OBJECTIVES

After reading this chapter, students should be able to:

● Understand how social class affects health and illness.
● Compare the major health issues faced by different ethnic groups in the

United States.
● Analyze the combined impact of poverty and ethnicity on health.
● Assess the impact of age on health and illness.
● Describe how sex and gender can affect health and illness.
● Evaluate how social capital can affect health and illness.

Meat and poultry processing is one of the most dangerous jobs in the United States,
with injury and death rates several times higher than in other occupations. These are
jobs that only the poor will take, and these are increasingly jobs filled only by undoc-
umented Hispanic immigrants, many of whom barely speak English. One worker
interviewed by observers from the nonprofit Human Rights Watch (2005) said:

The [meat processing] line is so fast there is no time to sharpen the knife. The
knife gets dull and you have to cut harder. That’s when it really starts to hurt,
and that’s when you cut yourself. I cut my hand at the end of my shift, around
10:30 at night. . . . I went to the clinic the next day at 11:00 a.m. They gave
me stitches and told me to come back at 2:30 before the start of my shift to
check on the stitches. They told me to go back to work at 3:00. I never stopped
working. (Human Rights Watch, 2005:35)

Another man, with fingers swollen and bent nearly into claws, said:

I hung the live birds on the line. Grab, reach, lift, jerk. Without stopping for hours
every day. Only young, strong guys can do it. But after a time, you see what happens.
Your arms stick out and your hands are frozen. Look at me now. I’m twenty-two
years old, and I feel like an old man. (Human Rights Watch, 2005:36)

And a woman said:

I pull ribs with my fingers on the packing ribs line. My fingers and nails are in
constant pain because the company won’t give us hooks to pull the ribs, and they
won’t let us bring our own hooks. We need hooks to pull the meat more easily
and to avoid injuries. But they say that meat gets lost using hooks, and using
fingers pulls more meat, so no hooks. (Human Rights Watch, 2005:45)

Complaints from workers about conditions at processing plants are few be-
cause those who complain are usually fired or reported to immigration author-
ities and then deported. And medical care is usually unavailable except from

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48 C H A P T E R 3

company doctors whose jobs depend on minimizing rather than treating workers’
health complaints.

Although the conditions faced by meat and poultry workers are extreme, they
illustrate how social class and ethnicity can leave individuals vulnerable to illness,
injury, and death. In this chapter, we explore how these factors as well as age, sex, and
gender result in an unequal distribution of health and illness across the population.

SOCIAL CLASS

Overview

Social class refers to individuals’ position within a society’s economic and social
hierarchy. Most often, it is measured by looking at individuals’ education, income,
or occupational status, with some researchers using only one of these indicators
and some combining two or more. Other researchers have argued for additional
measures, with wealth perhaps the most important. Wealth refers to the total
financial resources an individual or family owns, including cash, houses, pensions,
and investments, among other things. For example, imagine two students who
work together at Starbucks, earning the same income each week. Now imagine
that one girl’s parents can pay her tuition each year from their savings, while the
other’s parents took out a second mortgage on their house but could still pay
only could pay a quarter of their daughter’s tuition. These students have the same
income, education, and occupation but some would say that they differ in social
class because they differ in family wealth.

The link between social class and ill health is strong and consistent (Adler
and Rehkopf, 2008; Hadler, 2008; Lahelma, 2010). For example, the food, shelter,
and clothing available to poor Americans 200 years ago differed greatly from that
available to poor Americans now, which in turn differs greatly from that available
to poor Brazilians these days. Even so, in each place and era and for almost all
illnesses, poor persons experience more illness than wealthier persons do. Because
of this especially strong link between social class and health across time, place, and
disease, some sociologists label social class a “fundamental cause” of disease (Link
and Phelan, 2010; Phelan et al., 2004).

Fundamental-cause theory argues that even though the common diseases
and their causes may change over time and place, in each situation those with
greater access to resources will experience better health because those resources
help protect their health. For example, Link and Phelan write:

[A] person with many resources can afford to live in a high-status
neighborhood where . . . enormous clout is exerted to ensure that
crime, noise, violence, pollution, traffic, and vermin have been kept at a
minimum and the best health-care facilities, parks, playgrounds, and food
stores are conveniently located nearby. Once a person has used [social
class-based] resources to locate in an advantaged neighborhood, a host of
health-enhancing circumstances comes along as a package deal. (2010:6)

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49T H E S O C I A L D I S T R I B U T I O N O F I L L N E S S I N T H E U N I T E D S TAT E S

In such circumstances, wealthier individuals can increase their odds of good health
without even trying.

The impact of social class on health is obvious: Around the world, in every
age group and racial or ethnic group, those with higher social class status have
lower rates of morbidity and mortality (Adler and Rehkopf, 2008; Lahelma,
2010; Marmot, 2002, 2004). The relationship between social class and health
holds true for all major and most minor causes of death and illness, regardless
of how researchers measure social class (Picket and Wilkinson, 2015; Wilkinson,
1996, 2005). For example, in the United States heart disease occurs three times
as often and arthritis twice as often among low-income persons compared to
more affluent persons. Moreover, these health differences appear across the en-
tire income scale, with each group on the social class ladder having better health
than the group just below it (Marmot, 2004; Wilkinson, 1996, 2005). And when
researchers control for all known individual risk factors (such as obesity and
smoking), the impact of social class on health declines only slightly (Wilkinson,
1996, 2005).

That impact begins at birth, with infant mortality significantly higher among
the poor (Matthews and MacDorman, 2010; Olson et al., 2010). The evidence
linking social class to health, then, is extremely strong. However, some sociologists
(most notably Richard Wilkinson) have argued that income inequality—the gap
in income between a nation’s poorest and wealthiest—rather than income itself,
may best explain why some nations are healthier overall than others (Wilkinson,
1996, 2005). These theorists point, for example, to data showing that as income
inequality declined in the United States from around 1960 to 1980, life expec-
tancy rose among all social classes (Ezzati et al., 2008; Krieger et al., 2008). Other
researchers, however, point to data suggesting that income alone affects health
more than does income inequality (Mechanic, 2006). For example, since 1980,
income inequality has soared in the United States, but life expectancy fell only
for poorer Americans. This suggests that income affects health more than does in-
come inequality (Ezzati et al., 2008; Krieger et al., 2008). More research is clearly
needed to tease out how and whether income inequality affects health (Truesdale
and Jencks, 2016).

The Sources of Class Differences in Health

How can we explain the link between poverty and illness? One explanation
is that illness causes poverty: As people become disabled or ill, their ability to
earn a living or attract an employed spouse declines, and they fall to a lower
social status than that of their parents. This explanation is known as social drift
theory. Studies that have tracked Americans over time, however, have found that
social drift explains only a small proportion of illness among the poor (Adler
and Rehkopf, 2008; Marmot, 2002, 2004). Instead, and far more often, poverty
causes illness.

But how does poverty cause illness? As Chapter 2 discussed, social stress is
a major cause of illness. Thus, one important reason why poorer persons suffer
worse health than do wealthier persons is because poorer persons experience more

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50 C H A P T E R 3

stress and have less control over that stress (Adler and Rehkopf, 2008; Phelan et al.,
2004). For example, factory workers must keep pace with the production line but
can’t control the speed of the line and can’t even choose when to take bathroom
breaks. Numerous studies have found that workers who face high demands with
little control over work conditions are particularly likely to experience stress that
results in both physical and psychological illness (Marmot, 2004; North et al.,
1996; Wilkinson, 2005).

As this suggests, stress amplifies the myriad health risks embedded in everyday
aspects of lower-class life. First, the work available to poorly educated lower-class
persons—when they can find it—can cause ill health or even death. A coal miner,
for example, is considerably more likely than a mine owner to die from acciden-
tal injuries or lung disease caused by coal dust. In addition, lower-status workers
typically experience both demanding work conditions and low control over those
conditions.

Second, environmental conditions place poor people at risk of illness and
death. Chemical, air, and noise pollution all occur more often in poor neighbor-
hoods than in wealthier neighborhoods because the cheap rents in neighborhoods
blighted by pollution attract poor people and because poor people lack the money,
votes, and social influence needed to keep polluting industries, waste dumps, and
freeways out of their neighborhoods (Brulle and Pellow, 2006; Bullard, Warren, and
Johnson, 2001). Such pollution can foster cancer, leukemia, high blood pressure,
and other health problems as well as emotional stress.

Similarly, climate change is most likely to affect the health of poor people
(McGill, 2016). Both extreme heat and extreme cold take their greatest toll on
individuals who are homeless or who cannot afford to properly heat or cool their
homes. In addition, rising temperatures make it easier for mosquitoes to breed,
especially in poor neighborhoods where city health departments rarely spend
money on mosquito control. And once mosquitoes appear, those who lack air
conditioning and thus leave their windows open at night—when mosquitoes most
often bite—are most at risk.

Third, inadequate, overcrowded, and unsafe housing increases the risk of in-
juries, infections, and illnesses, including lead poisoning when children eat peeling
paint, gas poisoning when families rely on ovens for heat, and asthma triggered
by cockroach droppings, rodent urine, and mold (Brown et al., 2003; Krieger and
Higgins, 2002).

Fourth, the food poor children eat—or don’t eat—affects their lifetime risk
of illness. Federal researchers currently estimate that more than 20% of U.S. chil-
dren sometimes go hungry (Seligman and Schillinger, 2010). These children get
significantly more colds each year and are significantly more likely to experience
poor health, lack sufficient iron, experience chronic headaches or stomachaches,
or have a disability (Seligman and Schillinger, 2010). They are also more likely to
miss school and to do poorly in school, thus increasing their chances—and their
children’s chances—of remaining poor.

The foods available to poor children and adults also increase their health
risks (Seligman and Schillinger, 2010). This diet relies heavily on fatty or sweet
foods that satisfy hunger and provide energy inexpensively but offer little or no

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51T H E S O C I A L D I S T R I B U T I O N O F I L L N E S S I N T H E U N I T E D S TAT E S

nutrition. As Chapter 2 discusses, such a diet may lead to heart disease, diabetes,
and other illnesses.

Lack of access to health care also fosters illness and disability among the poor,
although its effect is relatively weak (Adler and Rehkopf, 2008; Williams et al.,
2010). Despite recent health care reforms (discussed in Chapter 8), many Ameri-
cans still lack health insurance. Others find it difficult to obtain health care because
they can’t afford transportation to the doctor, time off from work to visit a doctor,
or drugs or services not covered by their insurance. Even when poor or near poor
people have health insurance, they are more than twice as likely as other insured
adults to forgo needed medical care (Morbidity and Mortality Weekly Report, 2010).
In these circumstances, small health problems can quickly mushroom, as when
an unfilled cavity leads to a deadly brain infection. The prestigious, federally run
Institute of Medicine (2002) estimates that undertreatment and low-quality treat-
ment leave uninsured Americans 25% more likely than other Americans to die in
any given year.

All these issues are pulled together by what is known as cumulative inequal-
ity theory (Ferraro and Shippee, 2009; Goosby, 2013). This theory argues that
inequality primarily results from social systems, rather than individual choices, and
that it causes health problems that accumulate over the lifetime. This theory helps
to further explain why those who grow up poor are more likely than others to
be ill, disabled, or dead before they turn 60. So, for example, if a poor child who
lives in a rural area breaks a bone in her arm, her parents might try setting it on
their own because they can’t afford to pay a doctor, can’t afford the gas to drive
to a doctor, or fear they will lose their job if they take time off to go to a doctor,
especially if the only feasible care is at a public clinic where they might have to
wait for hours. If the wound becomes infected or the bone doesn’t heal straight,
the child might be left with chronic pain. That pain might make it harder for her
to focus on her schoolwork and therefore less likely to finish high school, let alone
college, especially if her parents need her to be earning a living and her teachers
and guidance counselors assume she isn’t “college material.” If the only work she
can find is cleaning houses or taking care of a sick elderly person, then the physical
labor may worsen her pain and lead to depression. She might at that point con-
clude that her best options are taking antidepressants, using prescription narcotics
to dull her pain, and smoking cigarettes to increase her energy, all of which can
bring further health complications. And throughout all of this, it’s likely that she
has lived in low-quality housing with limited access to healthy foods. All of these
problems add to her cumulative stress burden, which, as Chapter 2 described,
can wear out the body, including its muscles and immune system. Thus, inequality
and its health effects accumulate over a lifetime.

However, cumulative inequality theory also argues that these consequences
are not set in stone. Although those who grow up poor have fewer ways to pro-
tect their health and more cumulative exposure to health risks and stresses, there
are ways to make a difference. The theory recognizes that individuals sometimes
find the means to make healthier choices on their own, but if also suggests that
broader social change will be needed to truly break the cycle of cumulative
inequality.

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52 C H A P T E R 3

RACE AND ETHNICITY

Race is a social construction with almost no biological basis. Research on the
human genome has found almost zero support for the concept of race: All humans
share virtually all the same genes (Epstein, 2007). Moreover, when researchers sort
individuals according to their genetic variations, the resulting categories don’t
match existing racial categories (Williams et al., 2010).

The social rules for identifying individuals’ race also suggest that the term has
little meaning. For example, although these days everyone considers Irish people
to be white, a century ago that was not the case (Jacobson, 1998). Similarly, most
Americans consider individuals to be nonwhite if they have any known African
ancestors even if most of their ancestors were European. For this reason, from this point
on this textbook uses the term ethnicity, which suggests cultural rather than bio-
logical differences, rather than the term race.

Although social class explains many observed health differences among ethnic
groups, ethnicity nevertheless is an important and independent factor in predicting
health status (Bradby and Nazroo, 2010). In this section, we look at health and ill-
ness among African Americans (13% of the U.S. population), Hispanic Americans
(18%), Asian Americans (6%), and Native Americans (1.0%). As Figure 3.1 shows,

FIGURE 3.1 Life Expectancy by Ethnicity and Sex

Males Females

0

10

20

30

40

50

60

70

80

90

100

Ethnicity

L
if

e
E

xp
ec

ta
n

cy

Hisp
an

ic

W
hit

e
Non

-H
isp

an
ic

Afri
ca

n A
m

er
ica

n

Non
-H

isp
an

ic

Nat
ive

A
m

er
ica

n*

Asia
n A

m
er

ica
ns

Hisp
an

ic

W
hit

e
Non

-H
isp

an
ic

Afri
ca

n A
m

er
ica

n

Non
-H

isp
an

ic

Nat
ive

A
m

er
ica

n*

Asia
n A

m
er

ica
ns

All r
ac

es

All r
ac

es

*Living on or near tribal lands. Data by sex not available.

SOURCE: Arias, Xu, and Jim (2014); National Center for Health Statistics (2017a)

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53T H E S O C I A L D I S T R I B U T I O N O F I L L N E S S I N T H E U N I T E D S TAT E S

life expectancy is shortest among Native Americans (living on or near tribal lands)
and longest among Asian Americans. The remainder of this section explores in
more detail some reasons for these and other ethnic differences in health.

African Americans

The impact of ethnicity on health stands out vividly when we look at infant mortality
(National Center for Health Statistics, 2017a; Population Reference Bureau, 2018)).
Not only is infant mortality twice as common among African Americans than among
whites, but also as Table 3.1 shows, it is also more common among African Americans
than among citizens of countries such as Turkey, Romania, and Costa Rica.

As we have seen, poverty is a major cause of infant mortality. Around two-
thirds of African American children are either poor or near poor (Jiang, Granja,
and Koball, 2017), which definitely helps explain high rates of African American
infant mortality. However, even African American infants born to middle- and
upper-class families are more likely to die than are white infants.

The same holds true for other health problems: At all income levels, African
Americans have higher mortality and morbidity rates than do whites (Williams
et al., 2010). One explanation for this is racism. First, research consistently shows
that the experience of racial discrimination is highly stressful and affects both

Infant Mortality Rates in Different Nations and U.S.
Ethnic GroupsaTABLE 3.1

Location
Rate per

1000 Births Location
Rate per

1000 Births

Japan 1.9 U.S. white non-Hispanic 4.9

Singapore 2.4 Iran 5.0

Sweden 2.5 U.S. Hispanic 5.0

Spain 2.6 United States, all births 5.8

Czech Republic 2.8 Chile 7.3

Italy 3.0 Romania 7.3

Austria 3.1 U.S. Native Americanb 7.7

Portugal 3.2 Costa Rica 7.9

Germany 3.3 Turkey 10.0

U.S. Asian or Pacific
Islander

3.7 U.S. African American,
non-Hispanic

10.9

Greece 4.0 Kosovo 12.0

Canada 4.3 Brazil 14.0

Cuba 4.3 Mexico 18.0

aBy mother’s ethnicity within the United States.
bAnywhere in the United States, not only near tribal lands.

SOURCE: Population Reference Bureau (2018); National Center for Health Statistics (2017a)

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54 C H A P T E R 3

physical and mental health (Bradby and Nazroo, 2010; Schnittker and McLeod,
2005; Williams et al., 2010). If, for example, pregnant women experience these
stresses, they may be more likely to give birth prematurely. Second, racial discrimina-
tion by landlords, realtors, or mortgage bankers can leave even middle-class African
Americans unable to obtain decent housing in neighborhoods free from pollution
and violence (Williams and Jackson, 2005; Williams et al., 2010). Other middle-class
African Americans choose to live in poorer, segregated neighborhoods rather than
face the daily hostility—or simply social discomfort—of white neighbors. Conse-
quently, more-affluent African Americans sometimes live in conditions similar to
those experienced by poorer African Americans, thus placing themselves and their
families at risk. Finally, racial bias clearly helps explain why Hispanics are twice
as likely and African Americans are three times as likely as whites to die during
encounters with police, prison guards, and other legal authorities (Buehler, 2017).

Health disparities between African Americans and whites don’t end in in-
fancy. Although ethnic gaps in life expectancy have declined, white, non-Hispanic
women still live an average of 3 years longer than do their African American coun-
terparts, and white, non-Hispanic men live 4.3 years longer (Figure 3.1).

Table 3.2 shows the top causes of death for each major ethnic group in the
United States. Given their link to aging, it’s not surprising that heart disease and

Top Causes of Death by EthnicityTABLE 3.2

Non-Hispanic
Whites

Non-Hispanic
African Americans

Hispanic
Americans

Asian
Americans

Native
Americans

Heart disease Heart disease Cancer Cancer Heart disease

Cancer Cancer Heart disease Heart disease Cancer

Chronic lower
respiratory
diseases

Stroke Accidents Stroke Accidents

Accidents Accidents Stroke Accidents Diabetes

Stroke Diabetes Diabetes Diabetes Chronic liver
disease

Alzheimer’s
disease

Chronic lower
respiratory
diseases

Alzheimer’s Alzheimer’s Chronic lower
respiratory
diseases

Diabetes Homicide Chronic liver
disease

Influenza and
pneumonia

Stroke

Influenza and
pneumonia

Kidney disease Chronic lower
respiratory
diseases

Chronic lower
respiratory
diseases

Suicide

Suicide Alzheimer’s Kidney disease Kidney
disease

Kidney
disease

Kidney disease Septicemia Influenza and
pneumonia

Suicide Influenza and
pneumonia

SOURCE: National Center for Health Statistics (2017a)

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55T H E S O C I A L D I S T R I B U T I O N O F I L L N E S S I N T H E U N I T E D S TAT E S

cancer are the top two causes for each group. For the remaining causes of death,
however, the impact of social conditions is obvious. As noted previously, African
Americans are disproportionately likely to be killed by police and other legal author-
ities. Many other homicides among African Americans are linked to poverty and the
despair that it brings (Heron, 2013). Poverty is also an underlying cause of diabetes
(as Chapter 2 described). In turn, diabetes can lead to deaths from kidney disease.

Yet kidney disease need not kill if individuals can receive transplanted kidneys.
However, African Americans are significantly less likely than whites to receive
transplants. Doctors less often refer African Americans to transplant programs, less
often put African Americans on wait lists for donated kidneys, and more often
reject African Americans as transplant patients because they lack transportation
to hospitals and aftercare facilities (Epstein et al., 2000; Malek et al., 2011). In late
2014, however, U.S. organ transplantation centers adopted a new system in which
people receive transplants based in part on how long they have been on dialysis
rather than how long they have been on a waiting list. Early data suggest that the
new system has increased African Americans’ access to transplants (United Net-
work for Organ Sharing, 2016).

Recently, attention has been brought to one other factor that helps explain
high rates of disease and death among African Americans: mass incarceration.
That issue is addressed in “Contemporary Issues: Mass Incarceration and Public
Health,” p. 55.

CONTEMPORARY ISSUES

Mass Incarceration and Public Health

Since the 1960s, the rate of incarceration in the United States has increased fivefold
(Cloud, 2014; Massoglia and Pridemore, 2015). As a result, a higher percentage of
Americans are imprisoned than are citizens of any other country. African Americans
and, to a lesser extent, Hispanics have been especially affected by this trend because
they are far more likely than whites to be imprisoned unfairly and to receive unduly
harsh sentences (Cloud, 2014; Massoglia and Pridemore, 2015).

Unfortunately, prisons are a perfect environment for breeding disease
(Cloud, 2014; Massoglia and Pridemore, 2015). Most who enter prison come from
poor communities where infectious diseases such as hepatitis, HIV disease, and
tuberculosis are common. These diseases spread easily in overcrowded, unsanitary,
prisons, where access to proper health care (let alone condoms) is rare. In addition,
the stresses of prison life—including overcrowding, loss of privacy, incessant noise,
constant threats of violence, and, especially, the use of solitary confinement—foster
both mental illness and substance abuse.

Mass incarceration affects the health not only of prisoners but also of their
families and communities (Cloud, 2014; Massoglia and Pridemore, 2015). Diseases
contracted in prison can easily spread to others after prisoners are released (Johnson
and Raphael, 2009). In addition, the stress of having a family member in prison
increases wives’ and girlfriends’ risk of heart attacks, strokes, obesity, and poor
overall health and increases children’s risk of depression, obesity, substance abuse,
and poor overall health. For these and other reasons, many advocates have called
for better health care and living conditions in prisons, better services for prisoners’
families, and an end to the policies that resulted in mass incarceration.

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56 C H A P T E R 3

Hispanic Americans

Like African Americans, Hispanic Americans experience an array of diseases
linked to poverty and despair, including fatal accidents, diabetes, and chronic liver
disease (usually caused by alcohol abuse). Hispanic Americans are twice as likely as
non-Hispanic whites to live in poverty and are less than half as likely to have com-
pleted college (Jiang, Granja, and Koball, 2017; National Center for Health Sta-
tistics, 2017a). Hispanics are also twice as likely as whites to lack health insurance
and almost twice as likely to have no usual source of health care (National Center
for Health Statistics, 2017a). In addition, cultural and language barriers as well as
discrimination can make it difficult for Hispanics to take advantage of health care
resources even when they can afford them.

That said, recent research using data from a wide variety of sources suggests
that compared with white non-Hispanics, Hispanics enjoy comparable rates of
infant mortality and longer life expectancies (see Figure 3.1 and Table 3.1). This
surprising finding is known as the Hispanic paradox. The three most com-
mon explanations for this paradox are migration effects, cultural differences, and
problems with the data (Arias, 2010). First, some researchers argue that Hispanic
Americans have unusually good health because only the healthy migrate and be-
cause migrants who fall ill often return home (Palloni and Arias, 2004). Second,
some researchers argue that strong social networks—both within immigrant com-
munities and within Hispanic families—protect Hispanic Americans from disease.
This hypothesis is supported by data suggesting that the Hispanic health advantage
declines with each generation after immigration (Williams and Sternthal, 2010).
Conversely, other researchers argue that Hispanic Americans only appear to be
healthier than white non-Hispanics because the former are often inaccurately
identified as the latter on death certificates (Smith and Bradshaw, 2006). Currently,
data are insufficient to fully support any of these three explanations (Arias, 2010).

At any rate, health status varies enormously among Hispanic Americans. Mi-
grant farmworkers face especially high risks (Azevedo and Bogue, 2001; Green-
house, 2001; National Center For Farmworker Health, 2015). Farmwork is
physically hazardous, with long days of repetitive stooping and bending, heavy
lifting, and exposure to toxic pesticides. Access to clean water and sanitary toilets is
often limited, and workers are routinely exposed to extreme heat and cold. Living
conditions for migrant workers are often poor, with many individuals crowded
together in rooms that are poorly heated or cooled and lack sufficient water and
toilets. In addition, low wages make it difficult for farmworkers to purchase nutri-
tious foods. Finally, lack of transportation, cultural differences, and communication
problems make it difficult for laborers and their families to obtain good health
care. As a result, life expectancy is substantially reduced among migrant workers
and their families, and chronic health problems, miscarriages, infant mortality, and
infectious diseases (including tuberculosis, typhoid, and hepatitis) are several times
more common than among the rest of the population (Gwyther and Jenkins,
1998; Sandhaus, 1998).

Immigrants from the poorer countries of Central America, too, are especially
at risk, whether farmworkers or not. Because these migrants must cross more

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57T H E S O C I A L D I S T R I B U T I O N O F I L L N E S S I N T H E U N I T E D S TAT E S

than 2000 miles plus at least two national borders to reach the United States,
immigration from Central America is more dangerous and expensive than it is
from Mexico. As a result, undocumented Central Americans are more likely than
undocumented Mexicans to stay in low-paying, dangerous occupations such as
trimming palm trees or roofing because they especially fear the scrutiny and po-
tential for deportation that might accompany the search for new jobs.

Native Americans

As is true with any ethnic group, Native Americans are highly diverse. Native
Americans in the United States belong to more than 500 different tribes, each
with a distinct language and culture. Around 20% live in rural areas, 20% on res-
ervations or other trust lands, and 60% in suburbs or cities (Office of Minority
Health, 2014).

Life expectancy among Native Americans has increased steadily since the
1950s. However, it is still considerably lower than among other Americans, espe-
cially when we look only at those who live on or near tribal lands (Arias, Xu, and
Jim, 2014). (Statistics that include individuals who live away from tribal lands can
be misleading because many who identify as Native American have few genetic
or cultural ties to Native American peoples.) Similarly, Native Americans are con-
siderably more likely than other Americans to live with disabilities and to report
unmet health care needs (Barnes et al., 2010).

Infant mortality is a particularly crucial marker of the health problems faced
by Native Americans. Compared to non-Hispanic whites, rates of infant mortality
are 60% higher among Native Americans overall (see Table 3.1) and 240% higher
among those living on South Dakota’s large and exceptionally poor Pine Ridge
Reservation (Indianz.com, 2012).

These differences in infant mortality grow even starker when we separate
neonatal infant mortality (deaths occurring during the first 27 days after birth)
from postneonatal infant mortality (deaths occurring between 28 days and 11
months after birth). Neonatal infant mortality rates are essentially the same among
Native Americans and whites, but postneonatal infant mortality is more than twice
as high among Native Americans (Indian Health Service, 2014). Most postneo-
natal deaths stem from poverty, malnutrition, maternal tobacco use, poor living
conditions, and lack of health care for ill infants (Tomashek et al., 2006).

For Native Americans who survive past infancy, heavy alcohol use stands out
as an especially serious health risk (see Table 3.2). Although alcohol-related deaths
among Native Americans have decreased in recent years, deaths from liver disease,
suicide, and accidents (often caused by alcohol use) remain strikingly common.

Asian Americans

Overall, Asian Americans enjoy far better health than do other American minority
groups (see Figure 3.1). The largest Asian American groups (Chinese, Japanese,
and Filipino) have life expectancies and infant mortality rates equal or superior to
those of white Americans.

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58 C H A P T E R 3

These statistics, however, tell only part of the story. Since 1975, a substantial
portion of Asian immigration has come from the war-torn countries of Southeast
Asia. These immigrants typically have far lower income and education levels than
those of established Asian Americans. In addition to having the health problems
that always accompany poverty, they may experience unavoidable dietary changes,
culture shock, tropical diseases for which diagnosis and treatment can prove elu-
sive, and the long-lasting traumas of warfare and refugee life.

In addition, Southeast Asians living in the United States typically have less
access to health care than do other Asian Americans (Association of Asian Pacific
Community Health Organizations, 2008). Rates of health insurance coverage are
low, and even those who have insurance sometimes find that linguistic or cultural
barriers make it difficult to communicate with health care workers or obtain
quality health care. As a result, Southeast Asians are less likely than are other Amer-
icans to use Western health care (although some continue to use traditional Asian
healers and therapies).

Writer Anne Fadiman poignantly describes the communication barriers be-
tween new immigrants and their doctors and the problems these barriers create
for both groups in her prize-winning book The Spirit Catches You and You Fall
Down: A Hmong Child, Her American Doctors, and the Collision of Two Cultures (1997).
Fadiman describes the completely divergent worldviews of American doctors and
Hmong patients in Merced, California, where many Hmong refugees from Laos
have settled:

Most Hmong believe that the body contains a finite amount of blood
that it is unable to replenish, so repeated blood sampling [for lab tests] . . .
may be fatal. When people are unconscious, their souls are at large, so
anesthesia may lead to illness or death. If the body is cut or disfigured,
or if it loses any of its parts, it will remain in a condition of perpetual
imbalance, and the damaged person not only will become frequently
ill but may be physically incomplete during the next reincarnation;
so surgery is taboo. If people lose their vital organs after death, their
souls can’t be reborn into new bodies and may take revenge on living
relatives, so autopsies and embalming are also taboo. . . .

Not realizing that when a man named Xiong or Lee or Moua
walked into the Family Practice Center with a stomachache he was
actually complaining that the entire universe was out of balance, the
young doctors of Merced frequently failed to satisfy their Hmong
patients. How could they succeed? . . . They could hardly be expected to
“respect” their patients’ system of health beliefs (if indeed they ever had
the time and the interpreters to find out what it was), since the medical
schools they had attended had never informed them that diseases are
caused by fugitive souls and cured by (sacrificing) chickens. All of them
had spent hundreds of hours dissecting cadavers . . . but none of them
had had a single hour of instruction in cross-cultural medicine. To most
of them, the Hmong taboos against blood tests, spinal taps, surgery,
anesthesia, and autopsies—the basic tools of modern medicine—seemed

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59T H E S O C I A L D I S T R I B U T I O N O F I L L N E S S I N T H E U N I T E D S TAT E S

like self-defeating ignorance. They had no way of knowing that a
Hmong might regard these taboos as the sacred guardians of his identity,
indeed, quite literally, of his very soul. (Fadiman, 1997:33, 61)

Growing recognition of problems like these has spurred some hospitals to
begin working with traditional healers (Puno.com, 2017). Mercy Medical Center
in Merced now allows shamans to hold healing ceremonies in the hospital, and
both shamans and doctors participate in classes to learn about each others’ culture.
Similarly, most medical schools now provide students with at least some training in
working with culturally diverse populations, as Chapter 11 discusses in more detail.

Case Study: Environmental Racism

One health issue that cuts across America’s minority communities is environ-
mental racism. The term environmental racism refers to the disproportionate bur-
den of environmental pollution experienced by ethnic minorities—from Hispanic
farmworkers exposed to dangerous pesticides to Navajo communities poisoned
by deadly uranium mines and inner-city African Americans plagued by asthma-
inducing air pollution (Brulle and Pellow, 2006; Bullard et al., 2001; Taylor, 2014).
Lead is the most important of these environmental hazards, because it is so wide-
spread and devastating and found in polluted air, contaminated soil, and the paints
and pipes of older residences. African American children are twice as likely as
white children to have dangerous levels of lead in their blood (National Health
and Nutrition Examination Survey, 2016.) Similarly, a recent study found that Af-
rican Americans and Hispanics living in California were six times more likely than
whites to live in areas polluted by carbon monoxide, ozone, sulfur, pesticides, and
other toxic substances—and found that ethnicity predicted exposure to environ-
mental hazards better than did poverty (Cushing et al., 2015).

Environmental racism is a consequence of “everyday” racism. Racial dis-
crimination keeps members of minority groups in segregated communities and
enables industrialists, with the tacit approval of government bureaucrats and pol-
iticians, to place environmental hazards in those communities without worrying
that residents will have the political power or financial resources to resist (Taylor,
2014). Poverty and lack of other job opportunities can even encourage minority
communities to welcome polluting industries for the jobs they will bring. This
doesn’t mean, however, that those who make decisions about where to locate en-
vironmental hazards intend to discriminate against minorities. Certainly those who
make these decisions would argue that they decide solely on economic and tech-
nical considerations. Nevertheless, their actions have the effect of discriminating.

AGE

Overview

Not surprisingly, age is the single most important predictor of mortality and mor-
bidity. As noted in Chapter 2, deaths during the first year of life were common in
the United States until the 20th century. Although far less common now, infant

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60 C H A P T E R 3

mortality remains an important issue because so many years of productive life are
lost when an infant dies and because infant mortality is often preventable.

Once individuals pass the danger zone during and immediately after birth,
mortality rates drop precipitously. Those rates begin to rise significantly beginning
at around age 40 and escalate with age. For those who survive past age 65, chronic
diseases rather than acute diseases make up the major health problems, often
bringing years of disability in their wake.

The American population is aging steadily, with the population above age
85 growing the fastest. Although most middle-aged and older persons are rela-
tively healthy, rates of illness, disability, and mortality nevertheless are rising as the
population ages. Similarly, both the total costs for health care and the percentage
of health care dollars spent on the elderly—already greatly disproportionate to
the size of that population—are bound to increase. At the same time, as young
persons become a smaller proportion of the population, the pool of persons who
can provide or pay for the care needed by the elderly is shrinking. Consequently,
in the future, it will become more difficult to provide services to all the elderly
persons who will need health care or assistance with daily tasks such as shopping
or cooking.

These problems are amplified by the feminization of aging—the steady
rise in the proportion of the population who are female in each older age group
so that women constitute a larger proportion of the elderly than of the young and
middle aged. Because elderly women more often than elderly men are poor and
lack a spouse who can or will care for them and because (as we will see in the next
section) women, in general, experience more illness than men, the feminization of
aging will increase the costs of providing health and social services to the elderly.

SEX AND GENDER

Overview

Both sex and gender strongly affect health status. Sex refers to the biological cat-
egories of male and female to which we are assigned based on our chromosomal
structure, genitalia, hormones, secondary sexual characteristics such as facial hair,
and so on; those with two X chromosomes and a vagina are sexually female,
and those with one X chromosome, one Y chromosome, and a penis are sexually
male. (Later in this section, we will consider those who don’t fit neatly into these
categories.) In contrast, gender refers to the social categories of masculine and
feminine and to the social expectations regarding masculinity and femininity that
we are expected to follow based on our assigned sex. Because these categories are
social, they vary across time and across culture.

Basic epidemiological data show that both sex and gender affect health (Bird
and Rieker, 2008; Read and Gorman, 2010; Rieker, Bird, and Lang, 2010). For
example, before the 20th century, complications of pregnancy and childbirth often
cut short women’s lives, so women died younger than men on average. These days,
however, American women (regardless of race) live longer than men, as Figure 3.1

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61T H E S O C I A L D I S T R I B U T I O N O F I L L N E S S I N T H E U N I T E D S TAT E S

showed—even though the same diseases (including heart disease, cancer, and
cerebrovascular disease) eventually kill most people. The differences between men’s
and women’s life expectancies suggest that sex may directly affect health, but the
changes in these differences across time suggest that gender affects health: Women
now live longer than men not because their biology has changed, but because their
social position has changed.

Mortality differences tell only part of the story. If we look only at life expec-
tancy, we might conclude that women are biologically hardier than men. When we
look at morbidity rates, however, the picture blurs. At each age, men have higher
rates of mortality and fatal diseases, even though women have higher rates of mor-
bidity and nonfatal disease (Bird and Rieker, 2008; Read and Gorman, 2010). Ar-
thritis, for example, is the most common chronic, nonfatal condition among both
men and women older than age 45 years, but it strikes women around 50% more
often than it does men. In addition, at each age, women experience a 20% to 30%
greater incidence of acute conditions (not including health problems related to
their reproductive systems). In sum, women live longer than men but experience
more illness and disability, whereas men experience relatively little illness but die
more quickly when illness strikes.

How can we explain these paradoxical findings? Some researchers have hy-
pothesized that women’s higher rates of illness are more apparent than real—that
women don’t actually experience more illness than men but simply label them-
selves ill and seek health care more often. Most research, however, suggests that the
health differences between men and women are real (Bird and Rieker, 2008; Read
and Gorman, 2010). These differences stem from both the biological differences of
sex and the socially reinforced differences of gender.

Sex does seem to offer females some biological health benefits (Bird and
Rieker, 2008; Read and Gorman, 2010). Around the globe, more females than
males survive at every stage of life from fetus to old age as long as they receive
adequate nutrition. Although the exact mechanisms through which this works are
unknown, some theorize that estrogen and other “female” hormones (which, in
fact, also occur in males but in lower proportions) somehow protect the heart and
other organs from fatal disease.

Gender, too, protects women from fatal disease and injury (Bird and Rieker,
2008; Read and Gorman, 2010; Rieker, Bird, and Lang, 2010). Most important is
that female gender roles lead women to abuse alcohol less often than men, drive
more safely, avoid dangerous sports, and so on. Women are also less likely than men
to work in dangerous industries such as agriculture or commercial fishing. In ad-
dition, women’s gender roles often bring them into routine contact with medical
care, whether for themselves or for children or elderly parents. Finally, unlike men,
who are socialized to downplay physical problems as signs of weakness, women
are more comfortable seeking health care when they experience problems. As a
result, women are more likely to have health problems identified and treated early
enough to make a difference.

Sex and gender may also help explain why, despite women’s lower rates of
mortality, they have higher rates of morbidity than do men. Research on this topic,
however, is far less conclusive (Barker, 2005). Most commonly, theories suggest

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62 C H A P T E R 3

that women are more susceptible to nonfatal illnesses because of their hormones
(a sex effect) or because of their relatively high stress levels coupled with low
control over their lives (a gender effect). The latter theory gains support from an
article published in the prestigious American Sociological Review and based on na-
tional data collected from random samples over a 30-year period (Schnittker,
2007). The article found that women’s self-reported health (a measure of mor-
bidity) had improved considerably from 1974 to 2004 and that almost all of the
improvement was explained by women’s increased educational attainment, which
in turn increased their employment and income. Increased education apparently
gives women more power over their lives and therefore improves their health.

These changes are part of a broader move toward gender convergence (An-
nandale, 2010). Gender convergence refers to the growing similarities in ex-
pectations for how men and women should behave in their everyday lives. This
gender convergence may well result in greater convergence in men and women’s
patterns of health, illness, and mortality. For example, women’s new freedom to
join the Marines may increase their health risks, whereas men’s new freedom to feel
comfortable marrying women who earn high incomes may reduce men’s health
risk by reducing their economic and psychological stress.

Case Study: Intimate Partner Violence and Health

One health issue in which gender plays an especially critical role is violence by in-
timate partners. Although neither health care workers nor the general public typ-
ically thinks of partner violence as a health problem, it is a major cause of injury,
disability, and death among American women—as it is among women worldwide.

Data on intimate partner violence is now collected regularly by the Centers
for Disease Control and Prevention (CDC), the federal agency responsible for
tracking and preventing the spread of diseases in the United States. According
to CDC data collected through a large, national, random sample, around 20% of
women (compared to some 2% of men) have been raped by a spouse, ex-spouse,
lover, or date at some point in their lives (Smith et al., 2017). In addition, 22%
of women report being severely beaten by a partner during their lifetime, com-
pared to 14% of men. These numbers, however, probably understate women’s
risks compared to men’s, given that women more often use violence only in self-
defense, more often are hospitalized or develop posttraumatic stress syndrome after
an attack, and are three times as likely as men to be killed by intimate partners
(Caldwell, Swan, and Woodbrown, 2012; Stuart et al., 2006; Tjaden and Thoennes,
2000). Almost all intimate partner violence is perpetrated by men: 98% of attacks
against women and 87% of attacks against men are perpetrated by men (Smith
et al., 2017).

That assaults by men far surpasses assaults by women should not surprise us.
Sources ranging from pornographic magazines to religious teachings that give
husbands the responsibility to “discipline” their wives continue to teach men that
violence is an acceptable response to stress and that women are acceptable targets
for that violence (Dobash and Dobash, 1998). Although most men resist these
messages, enough men absorb these messages to make woman battering a major

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63T H E S O C I A L D I S T R I B U T I O N O F I L L N E S S I N T H E U N I T E D S TAT E S

social problem. Moreover, women typically have less access to money than do their
male partners and so often find themselves financially unable to leave if a relation-
ship turns violent. These same ideas and circumstances can leave some men at risk
of violence by their male partners.

Intimate partner violence most often occurs when men believe that their
power within the family is threatened, such as men who have less education than
their wives (Tjaden and Thoennes, 2000). In addition, violence occurs most often
among men who have a high need for power and who support traditional gender
roles. Taken together, these data tell us that intimate partner violence is not only
an individual response to social stress but also a form of social control: a way of
reinforcing social expectations and power relationships. Most often, intimate vi-
olence against women operates as social control by reinforcing men’s power over
women and women’s inferior position within society. Consequently, as long as
gender inequality remains the norm, such violence will persist.

Recognition of intimate partner violence as a health risk has led various
health-related organizations to enter the fight against it. During the past decade,
the CDC has begun funding research on the causes, consequences, and preven-
tion of intimate partner violence. In addition, the U.S. Public Health Service has
developed violence-prevention programs, trained health professionals and others
in violence prevention, and encouraged health care workers to learn how to iden-
tify battered women in hospital emergency departments. Similarly, the American
College of Obstetricians and Gynecologists now requires medical schools to teach
how to identify and respond to battered women and publishes materials designed
to help health professionals do so.

Transgender Health Issues

So far, we have been talking about sex and gender as if each was a binary category—
one with only two possibilities: male or female in the case of sex, masculine or
feminine in the case of gender. Life, however, is more complicated.

The term transgender refers to people whose sense of their own gender
does not match the physical sex (male or female) they were assigned at birth. This
term is used to describe two groups. The first consists of individuals who would
like to change their bodies to better fit the physical sex that matches their sense
of their true selves. The second consists of those whose gender identity crosses
cultural boundaries that divide masculinity from femininity but who have little
interest in changing their bodies to fit within those boundaries.

Currently, around 1 of every 200 persons in the United States identifies as
transgender (Crissman et al., 2017). This statistic, however, undoubtedly under-
states the size of the transgender population, because many fear identifying them-
selves as such even to researchers. Others may no longer identify as transgender
because they have used surgeries and hormones to change their bodies and have
fully transitioned to the sex they always believed themselves to be.

Unfortunately, obtaining proper health care remains difficult for many trans-
gender people (Dickey, 2017; Program for LGBTI Health, 2017). Medical schools
typically provide almost no education regarding the needs of transgender patients.

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64 C H A P T E R 3

As a result, doctors might not understand, for example, that calling patients by
their birth names rather than their chosen names might lead patients to distrust
their doctors. Nor might doctors realize that an individual who has transitioned
to living as a man might still have ovaries that need to be periodically checked for
disease. On the other hand, getting access to sex-transition surgeries and medical
care is easier than it was 20 years ago because of both technological advancements
and increasing acceptance of interventions among doctors, insurance companies,
and the general public. That said, there are still many who object to providing
such care; as of 2017, for example, the state of Wisconsin officially excludes sex-
transition health care from the health insurance it offers to state employees.

At the same time, this change in attitudes reinforces the idea that anyone who
does not fit into one and only gender is biologically and psychologically defective
(Davis, Dewey, and Murphy, 2016). Indeed, doctors seem to regard their inter-
ventions as a success only if their former patients now closely match stereotypical
ideas about what a man or woman should be like. Such attitudes continue to
stigmatize transgender people who cannot or will not seek medical interventions
(Davis, Dewey, and Murphy, 2016).

Whether or not transgender individuals are comfortable living outside our
society’s gender expectations, they often face harrowing levels of stigma and dis-
crimination (Bockting et al., 2013). As a result, as a group they are less likely to
attend college and more likely to attempt suicide, experience poverty, suffer from
poor health, or face difficulty obtaining health care (Meyer et al., 2017).

Intersex Health Issues

Whereas transgender refers to individuals’ sense of their gender, intersex refers to
the biology of individuals’ sex. Intersex refers to individuals who are born with
physical markers of sex (such as genitalia, chromosomes, or gonads) that are nei-
ther clearly male nor clearly female (Davis and Preves, 2017). Intersexuality can be
caused by hormonal factors, chromosomal factors, or both. Up to 1.7% of babies
are intersex (United Nations, 2017).

Since the 1950s, surgery and hormonal manipulation have been the standard
medical responses to the birth of intersex infants in the United States (Kessler,
1998). Doctors typically urge parents to have the infants surgically “corrected” to
more clearly fit into one sex category as soon as possible on the assumption that
this will help children develop into the “appropriate” gender. Most often, doctors
assign babies to a sex based on the size of the babies’ phalluses. If the doctors con-
sider the phalluses to be large enough, the babies are assigned to be boys. If not,
they are assigned to be girls.

Once this decision is made, parents are instructed to strictly socialize the chil-
dren to their new gender. Parents may also be told to place the child on a steady
diet of hormones to better match their assigned sex. In addition, surgeons “create”
girls by removing or reducing clitorises (if larger than average), removing testes
(if present), and creating artificial vaginas (if absent). All these surgeries involve
removing healthy tissue, and all can impair or eliminate individuals’ ability to
reproduce or to experience sexual pleasure.

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65T H E S O C I A L D I S T R I B U T I O N O F I L L N E S S I N T H E U N I T E D S TAT E S

More recently, however, this standard medical treatment has come under con-
siderable attack from both scholars and activists, some of whom experienced sex
assignment as children. Opponents of sex assignment point out that this treatment
is based not on scientific evidence but on gender beliefs: that small penises are “un-
manly,” that large clitorises are frightening, that children need strict socialization
into “appropriate” gender behaviors, and that a vagina “works” if it allows penile
penetration, even if it lacks natural lubrication, elasticity, or the ability to provide
female sexual pleasure (Kessler, 1998; Preves, 2003). Moreover, opponents argue,
sex assignment reinforces children’s sense of difference and often depends on webs
of deception among children, parents, and doctors that can create their own psy-
chological nightmares (Kessler, 1998; Preves, 2003).

These critiques have had some impact. In 2006, a series of discussions be-
tween medical experts and activists led to an important but controversial consen-
sus statement published by the American Academy of Pediatrics. That statement
urged doctors to refrain from surgically altering the bodies of intersex babies for at
least a few months after birth to give parents time to consider other options. It also
stated that surgery should not be performed solely for cosmetic reasons—except
for girls whose clitorises are exceptionally large (Accord Alliance, 2014; Davis,
2015). Finally, it recommended replacing the term intersex (which some consider
pejorative) with a new diagnosis of disorders of sex development.

Although some activists approved of these recommendations, others do not
believe that intersex is a disease (or “disorder”) and therefore reject the idea that
intersex bodies need changing. Similarly, in 2015 the United Nations declared
that medical and surgical procedures performed on intersex children constitute a
violation of basic human rights. Meanwhile, however, surgery continues to be the
norm.

SOCIAL CAPITAL

Social capital refers to the resources available to an individual through his or her
social network (Lutfey and Grace, 2016; Song et al., 2010). It is typically measured
by some combination of the number of people with whom one has close personal
relationships and the resources one can access through those relationships. Those
resources can take many forms. For example, your social networks might (or might
not) offer you access to expert advice, useful skills, or a good apartment to rent.
Although one’s social capital is typically linked to one’s social class, each affects
health independently. In addition, social capital also varies, depending on one’s
ethnicity, gender, and age, among other factors. Thus, social capital pulls together
the advantages (and disadvantages) built into all of the social statuses discussed in
this chapter.

Social capital affects health in several ways (Song et al., 2010). Among other
things, individuals with higher social capital typically have better access through
their networks to high-quality information. For example, individuals who have
doctors as friends are more likely to learn of the dangers of popular new drugs.
In addition, social capital can offer individuals the emotional and practical support

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66 C H A P T E R 3

needed to preserve their health such as encouragement to stop smoking or a loan
to cover the costs of an operation. At a broader level, social capital can protect
health by providing power and political influence. For example, because affluent
neighborhoods typically include not only doctors but also lawyers, politicians,
and business leaders, social networks in those neighborhoods have the resources
needed to fight against highways, polluting factories, or anything else that might
harm the health of individuals in those neighborhoods.

IMPLICATIONS

Far from being purely biological conditions reflecting purely biological factors,
health and illness are intimately interwoven with social position. In the United
States, as elsewhere, those who are poor or are targets of racial discrimination die
younger than others do. Sex and gender have more complex health consequences:
Women enjoy longer life spans than men do, but they are subject to more illness and
disability. Importantly, each of these factors (along with age) interacts with the oth-
ers, leaving some individuals at much greater risk of illness and injury than others.

Given that social forces as well as biological factors affect health, understand-
ing social trends can help us predict future health trends. For example, as wom-
en’s social roles have changed, their rates of tobacco use and lung cancer have
approached those of men, and their ability to protect themselves from the health
consequences of male violence has increased. Similarly, if economic and ethnic
inequality either increase or decrease, we are likely to see changes in the health
status of currently disadvantaged economic and ethnic groups.

SUMMARY

1. The causes and types of illness in the United States vary dramatically
according to social class, ethnicity, age, sex, and gender.

2. Social class strongly affects rates of mortality and morbidity. Poor persons
are substantially more likely than others to experience illness and disability
and to die young. These social class differences primarily reflect lower-class
persons’ exposure to environmental hazards, unsafe working conditions,
inadequate housing, poor nutrition, and psychological stress.

3. Ethnicity also affects health status. Infant mortality rates are especially
high among African Americans and Native Americans. African Americans,
Hispanic Americans, and Native Americans are all more likely than white
Americans to die of conditions linked to poverty and despair, including liver
disease and diabetes. In contrast, health is generally excellent among Asian
Americans except for recent poor immigrants from Southeast Asia.

4. Environmental racism refers to the disproportionate burden of
environmental pollution experienced by racial and ethnic minorities.

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67T H E S O C I A L D I S T R I B U T I O N O F I L L N E S S I N T H E U N I T E D S TAT E S

5. For those who survive infancy, mortality rates rise significantly beginning
at around age 40. For those who survive past age 65, chronic illnesses rather
than acute illnesses comprise the major health problems.

6. The American population is aging steadily. As a result, future years will see higher
rates of illness, disability, and mortality as well as increased health care costs.

7. The United States is experiencing the feminization of aging—that is, each
age cohort has a higher percentage of women than the next younger cohort.
As a result, in the future more Americans will likely need health care, and
fewer will be able to afford it.

8. Although men have higher rates of fatal diseases and die younger, women
experience higher levels of nonfatal, chronic conditions. These differences stem
from both sex differences (such as hormone levels) and gender differences
(such as levels of risk taking).

9. The term transgender refers to people whose sense of their own gender
does not match the physical sex they were assigned at birth. Transgender
individuals face additional health risks because of stigma and discrimination.
As the medical world becomes more willing to surgically and medically
change individuals’ bodies to better fit individuals’ sense of their own
gender, it may reinforce the idea that anyone who does not fit into one and
only gender is biologically and psychologically defective.

10. The term intersex refers to individuals born with characteristics of both
sexes. Until recently, intersex was treated solely as a medical and surgical
problem based on social ideas about gender.

11. Social capital refers to the resources available to an individual through his or
her social network. Although social capital is closely linked to social class,
both independently affect health.

REVIEW QUESTIONS

1. How and why does social class affect people’s health?

2. What are the special health problems of migrant farmworkers?

3. How does ethnicity affect health separately from social class? How does
social class affect health separately from ethnicity?

4. How and why do the particular health problems of African Americans,
Hispanic Americans, Native Americans, and Asian Americans differ from
those of whites?

5. What is environmental racism?

6. What are the health care consequences of an aging population and the
feminization of aging?

7. Why do men have higher mortality rates than women but lower morbidity
rates?

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68 C H A P T E R 3

8. What are the sources and consequences of intimate partner violence? Why
do some health care workers consider it to be a serious health problem?

9. Everyone has social capital, regardless of their social class. Give an example of
the social capital that a working-class person might have, and how that social
capital might help him or her stay healthy.

CRITICAL THINKING QUESTIONS

1. Explain why poor persons become ill more often and die younger than
wealthier persons.

2. Assume that over the next 20 years both men and women increasingly
adopt behavior patterns now associated with the other gender. What changes
would you expect to see in the health of men and women? Explain your
answer.

3. Assume that 20 years from now, African Americans are as likely as whites to
graduate from college. Why and in what ways would you expect the health
of the African American population to improve? Why and in what ways
would you expect it to remain the same?

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69

C H A P T E R

Illness and Death in the

Less Developed Nations

C H A P T E R

4

Ja
ke

Ly
el

l/A
la

m
y

St
oc

k
Ph

ot
o

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70 C H A P T E R 4

LEARNING OBJECTIVES

After reading this chapter, students should be able to:

● Explain the differences between more, less, and least developed nations.
● Assess the ways that globalization affects health around the world.
● Understand the changing patterns of disease in less developed nations.
● Identify the main types and causes of disease in the less developed nations.

Mahabouba Muhammad grew up in a small village in Ethiopia. Many Ethiopian
girls receive little education and have few rights, but Mahabouba’s situation was
particularly poor: Her parents had divorced and left her with an aunt who treated
her like a servant. As a result, Mahabouba eventually ran away to the nearest town
to find work as a maid in exchange for room and board:

“Then a neighbor told me he could find better work for me,” Mahabouba
recalled. “He sold me for eighty birr [10 dollars]. He got the money, I didn’t. I
thought I was going to work for the man who bought me, in his house. But then
he raped me and beat me. . . . I was about 13.”

The man, Jiad, was about 60 years old and had purchased Mahabouba to
be his second wife. In rural Ethiopia, girls are still sometimes sold to do manual
labor or to be second or third wives. . . .

[Jiad and his first wife] wouldn’t let Mahabouba out of the house for fear
she might run away. Indeed, she tried several times, but each time she was caught
and thrashed with sticks and fists until she was black, blue, and bloody. Soon,
Mahabouba was pregnant, and as she approached her due date, Jiad relaxed his
guard over her. When she was seven months pregnant, she finally succeeded in
running away. . . .

Unable to afford a midwife when she went into labor, Mahabouba tried to
have the baby by herself. Unfortunately, her pelvis hadn’t yet grown large enough
to accommodate the baby’s head, a common occurrence with young teenagers. She
ended up in obstructed labor, with the baby stuck inside her birth passage. After
seven days, Mahabouba fell unconscious and at that point someone summoned a
birth attendant. By then the baby’s head had been wedged there for so long that
the tissues between the baby’s head and Mahabouba’s pelvis had lost circulation
and rotted away. When Mahabouba recovered consciousness, she found that the
baby was dead and that she had no control over her bladder or bowels. She also
couldn’t walk or even stand, a consequence of nerve damage that is a frequent by-
product of [obstructed pregnancies]. (Kristof and WuDunn, 2010:93–94)

Mahabouba’s story—rape, beatings, pregnancy too young, unattended
childbirth—is all too common in much of the world. As this suggests, the sources

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71I L L N E S S A N D D E AT H I N T H E L E S S D E V E L O P E D N AT I O N S

and patterns of illness and death in poorer countries differ dramatically from those
found in more affluent countries—and often reflect social conditions as well as
biological forces. In this chapter, we first compare some of these differences. We
then focus on explaining the main sources of death and disease (including illness
and death in childbirth), focusing on the role played by social, economic, and
political conditions and forces.

SETTING THE STAGE: KEY CONCEPTS

A few key concepts are needed to understand disease patterns around the world.
This section lays out those concepts.

Understanding Development Patterns

In making international comparisons, politicians, social scientists, medical research-
ers, and others typically divide the world into two broad groups: the more devel-
oped nations and the less developed nations. Essentially, this division reflects
the economic status of the various nations. The more developed nations are primarily
defined by their relatively high gross national income (GNI) per capita compared
with the less developed nations. In addition, the more developed nations are char-
acterized by diverse economies made up of many different industries, whereas
the less developed nations have far simpler economies, and in some cases still
rely heavily on extractive industries such as mining or logging or a few agricul-
tural products such as rubber or bananas. These economic differences—primarily
resulting from centuries of exploitation by political and economic powers in the
more developed nations—have left the less developed nations with high infant
and maternal mortality, low life expectancies, and damaging levels of infectious
and parasitic diseases.

That said, the less developed nations also differ substantially from each other.
Sociologists and other researchers use the term least developed nations to refer
to those less developed nations that suffer from the least diverse economy and low-
est GNIs and life expectancies. For example, life expectancy in Ethiopia is only 65
years, and gross national product per capita is only $1,730 (Population Reference
Bureau, 2017). Table 4.1 compares life expectancies and infant mortality rates in
the least, less, and more developed nations. As is common in the field, except when
directly comparing the less and least developed nations, this textbook uses the
former term to refer to both groups.

Although dividing the globe into least, less, and more developed nations is a
useful analytic tool, it is important to recognize that development level is a scale,
not a dichotomy. Mexico and Thailand, for example, fall near the border between
the more and less developed nations: Each has both complex industries and tra-
ditional agricultural crops, and each enjoys infant mortality rates and life expec-
tancies approaching those found in the United States. And although infectious
and parasitic diseases remain more common in Mexico and Thailand than in the

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72 C H A P T E R 4

United States, chronic diseases are now the most common cause of death in all
three nations (World Health Organization, 2010).

This terminology also should not keep us from recognizing that social
conditions and hence health patterns vary from community to community
and from social group to social group within each nation. Thus, conditions in
central Detroit in some ways resemble those in Bangladesh, whereas condi-
tions in wealthy sections of Bangkok resemble those in Beverly Hills. Within
the less developed nations, the income gap—and consequently the “health
gap”—between rich and poor has increased in the past two decades. These
growing gaps in income and health largely stem from “structural adjustment”
policies that have been heavily promoted by international organizations based
in the most developed nations. These policies pressed developing nations to

Life Expectancy and Infant Mortality by Development
LevelTABLE 4.1

Country Life Expectancy at Birth
Infant Mortality
per 1000 Births

Most Developed

Japan 84 1.9

Italy 83 3.0

France 82 3.5

Germany 81 3.3

Denmark 81 3.1

United States 79 5.8

Less Developed

Mexico 77 18

Chinaa 77 10

Philippines 70 21

Thailand 76 10

Bolivia 69 39

India 69 37

Least Developed

Haiti 64 48

Ethiopia 65 48

Somalia 56 74

Sierra Leone 52 92

Afghanistan 64 60

aDoes not include Hong Kong, which only became part of China in 1997 and operates under a separate
political structure.

SOURCE: Population Reference Bureau (2017)

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73I L L N E S S A N D D E AT H I N T H E L E S S D E V E L O P E D N AT I O N S

cut back programs such as food subsidies and low-cost health care in exchange
for economic aid from international nonprofit organizations (Kolko, 1999;
Peabody, 1996).

Finally, although the terms least developed, less developed, and more developed
imply linear progression from one status to the other, this is not necessarily the
case. For example, economic and health conditions worsened in Eastern Europe
after the collapse of the Soviet Union and in southern Africa after the start of the
HIV/AIDS epidemic.

Understanding Globalization

Although it is important to understand development stages and disease patterns
within individual nations, it is equally important to understand that diseases
respect no national borders. Because of globalization, diseases and disease-causing
conditions spread rapidly from less to more developed nations and vice versa
(Quammen, 2013). For example, air pollution from China is now causing heart
disease and asthma in the western United States, and the recycling of used U.S.
electronics equipment across Asia is releasing toxic acids and metals into drinking
water in those countries (Leahy, 2017).

Because the United States and Mexico share the same water, air, and, to a
growing extent, economies where the two nations meet, U.S. citizens need to be
especially concerned about health conditions in Mexico. For example, the many
factories located in Juarez, a large city just south of El Paso, Texas, are notorious
for spewing toxic chemicals into the air and aquifers shared by both countries
(Collins, Grineski, and Aguilar, 2009). Similarly, only one-third of the sewage gen-
erated by residents of Juarez is appropriately treated (Schmidt, 2000). As a result,
human wastes drain from Juarez into the Rio Grande, and from there into El Paso’s
drinking water supplies, making gastrointestinal disease a leading cause of infant
mortality in both cities. As this example suggests, those who live in the more de-
veloped nations have a vested interest in understanding health and illness in the
less developed nations.

Understanding Global Health

As this discussion of globalization suggests, dealing with health issues one nation at
a time has inherent limitations. This problem has led to new interest in what is re-
ferred to as global health (Farmer, Kim, and Kleinman, 2013). Global health refers
to the ways that health and illness transcend borders—along with people, goods,
health providers, floods, crops, and so on. The idea of global health emphasizes that
disease can be spread or prevented not only by national governments but also by
myriad other players from the World Bank to local nonprofits, to small peddlers
who move drugs, needles, food, and other supplies across borders. Finally, the
concept of global health emphasizes the similarities as well as differences in health
problems around the world and the importance of developing equitable solutions
to those problems. As this suggests, the term is primarily used by those who take a
critical stance toward health and society.

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74 C H A P T E R 4

EXPLAINING DEATH AND DISEASE IN LESS
DEVELOPED NATIONS

In this section, we look at the main types and causes of diseases in the less developed
nations, including malnutrition, infectious diseases, maternal mortality, and war.

Chronic Disease

In a major change from past generations, chronic disease (especially heart disease
and strokes) is rapidly emerging as a common cause of death in the less developed
nations. Table 4.2 shows the leading causes of death around the world (WHO,
2018). However, residents of less developed nations who have chronic diseases are
far less likely to have access to appropriate treatment than are residents of more
developed nations.

Leading Causes of Death Around the WorldTABLE 4.2

Less Developed Nations*

Lower Income Higher Income
Least Developed
Nations

More Developed
Nations

Lower respiratory
infections

Coronary heart
disease

Coronary heart
disease

Coronary heart
disease

Diarrheal diseases Stroke and other
cerebrovascular
disease

Stroke and other
cerebrovascular
disease

Stroke and other
cerebrovascular
diseases

Stroke and other
cerebrovascular
disease

Lower respiratory
infection

Chronic obstructive
pulmonary disease

Alzheimer’s
disease and other
dementias

Coronary heart
diseases

Chronic obstructive
pulmonary disease

Trachea, bronchus,
lung cancers

Trachea, bronchus,
lung cancers

HIV/AIDS Tuberculosis Lower respiratory
infections

Chronic obstructive
pulmonary disease

Tuberculosis Diarrheal diseases Diabetes Lower respiratory
infections

Malaria Diabetes Alzheimer’s disease
and other dementias

Colon and rectum
cancers

Maternal mortality Maternal mortality Road injury Diabetes

Birth asphyxia and
birth trauma

Cirrhosis of the
liver

Liver cancer Kidney diseases

Road injury Road injury Stomach cancer Breast cancer

*For these data, the World Health Organization divides the less developed nations into two groups,
based on gross national incomes.

SOURCE: World Health Organization (2018)

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75I L L N E S S A N D D E AT H I N T H E L E S S D E V E L O P E D N AT I O N S

Ironically, the rise in chronic disease reflects in part the problems caused by
rising incomes. As new middle classes have emerged in countries such as China
and India, tobacco use, alcohol use, automotive travel, and obesity have all in-
creased, causing deaths from lung cancer, alcohol-related disease and injuries, fatal
accidents, diabetes, and heart disease. Moreover, these nations still have millions of
poor citizens, so they are burdened by the economic, social, and health costs of
both “diseases of wealth” such as diabetes and “diseases of poverty” such as tuber-
culosis (Yach et al., 2004).

Poverty, Malnutrition, and Disease

The primary cause of low life expectancies in the less developed nations is pov-
erty. In Chapter 3, we saw that wealthy Americans experience less illness and live
longer than do poorer Americans. In the same way, wealthier nations have lower
rates of illness and mortality than do poorer nations. The average life expectancy is
65 years in the least developed nations, 71 years in the less developed nations, and
79 years in the more developed nations—a 14-year difference all told (Population
Reference Bureau, 2017).

In large part, poverty causes disease and death by causing chronic malnu-
trition. Malnutrition causes disease and death by damaging the body’s immune
system, leaving individuals more susceptible to all forms of illness and contributing
to both infant and maternal mortality. In addition, malnutrition leads to numer-
ous health problems, including brain damage caused by iodine deficiency, blind-
ness caused by vitamin A deficiency, and mental retardation caused by anemia.
For these reasons among others, malnutrition underlies many deaths in the least
developed nations.

The Roots of Chronic Malnutrition Given the link between malnutrition,
illness, and death, investigating the roots of chronic malnutrition is clearly import-
ant. At first thought, we might easily assume that malnutrition in less developed
nations that have not yet experienced the epidemiological transition results
naturally from overpopulation combined with insufficient natural and technolog-
ical resources. Yet on a global level, farmers now grow twice as much food as is
needed to feed the world’s population (Holt-Giménez and Peabody, 2008; Lappé,
Collins, and Rosset, 1998; UNICEF, 2014). This bounty, however, may soon end
because of population growth, changes in climate that will make it impossible to
grow crops in many regions, the use of crops such as corn for fuel rather than for
food, and the rise in meat eating in newly wealthy parts of Asia (Palmer, 2017).

For now, however, malnutrition cannot be blamed on population density
(Lappé et al., 1998). The Netherlands, for example, is one of the most densely
populated countries in the world, yet chronic malnutrition no longer occurs there.
Similarly, malnutrition has largely disappeared from Costa Rica but remains com-
mon in nearby Honduras, even though the latter has twice as much cropland per
person.

If overpopulation, lack of food, population density, and lack of cropland don’t
explain chronic malnutrition, what does? The answer lies in the social distribution

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76 C H A P T E R 4

of food and other resources: Malnutrition occurs most often in countries where resources
are most inequitably distributed. In other words, malnutrition occurs not in countries
where resources are scarce but in countries where a few people control many
resources while many people have access to extremely few resources (Dreze and
Sen, 1989; Lappé et al., 1998). Similarly, within each country, malnutrition occurs
most often among those groups—typically females and the poor—with the least
access to resources (Messer, 1997). In essence, then, malnutrition is a disease of
powerlessness.

If powerlessness causes malnutrition, then eliminating power inequities should
eliminate malnutrition. Evidence from China (officially known as the People’s
Republic of China) and Costa Rica supports this thesis. In the past, both nations
adopted socialistic strategies for redistributing resources somewhat more equitably.
By giving farmland to formerly landless peasants, extending agricultural assistance
to owners of small farms, working to raise the status of women, and so on, they
made chronic malnutrition almost unknown within their borders. On the other
hand, China has not proved immune to acute malnutrition caused by famines.
According to Nobel Prize–winning economist Amartya Sen, famines occur only
when (1) natural events reduce harvests and (2) nondemocratic governments (such
as China’s) can ignore citizen’s basic needs because politicians know they can’t be
voted out of office (Sen, 1999). “Contemporary Issues: Linking Sanitation and
Malnutrition,” p. 76, further illustrates how power inequalities can continue to
breed malnutrition, even when countries begin to develop and food becomes
more widely available.

The Role of International Aid In less developed nations that are democrat-
ically run, international aid—both food aid and development projects—has

CONTEMPORARY ISSUES

Linking Sanitation and Malnutrition

Since the start of this century, India has experienced an economic boom. As a
result, many more children across the country receive what should be enough
calories and nutrients to foster healthy growth. Yet an estimated 65 million
children under age five are malnourished, including one-third of those from
wealthy families (Harris, 2014).

How could this be? Until quite recently, nutrition researchers assumed quite
reasonably that malnourishment resulted solely from lack of healthy food. In the
last few years, however, researchers have increasingly concluded that lack of proper
sanitation is a major cause of malnourishment in densely populated countries
like India (Harris, 2014). Because of continuing inequities in how public services
are distributed around the nation, around half of all Indians lack toilets and must
defecate outdoors. As a result, Indian children are constantly fighting infections
caused by parasites and germs carried by rain down streets and alleys and into
water supplies used for bathing and drinking. As a result, their bodies lack the
energy needed for them to develop physically and mentally. Unfortunately, the
resulting physical frailty and mental retardation are permanent.

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77I L L N E S S A N D D E AT H I N T H E L E S S D E V E L O P E D N AT I O N S

helped improve citizens’ standard of living and health status. But in nondemo-
cratic nations, aid often has the opposite effect (Calderisi, 2006; Easterly, 2006;
World Bank, 1998). In such nations, small, powerful elites often take control of
food aid, sell it on the black market, and pocket the profits. Poor people can’t
afford to buy food aid sold in the marketplace, so it doesn’t help them at all.

Like international food aid, internationally sponsored development projects
have had mixed impacts on malnutrition and on health in general (Calderisi, 2006;
Easterly, 2006; World Bank, 1998). According to the politically conservative World
Bank, carefully designed projects, sensitive to local conditions and culture and
located in countries with democratic governments, open trade, social safety nets,
and conservative economic policies can reduce malnutrition and its root causes.
In Peru, for example, malnutrition among children was cut in half by an interna-
tionally supported program that was developed with local input to teach parents to
recognize the signs of malnutrition and provide them with cash subsidies to better
feed their children (Marini and Arias, 2016).

On the other hand, when aid projects are not built around local needs and
culture, the results can be harmful. For example, large dam projects around the
world have brought electricity to urban elites and to factories run by multinational
corporations while also flooding and destroying agricultural fields and bringing
plagues of waterborne diseases to rural dwellers (Basch, 1999:280–281; Farmer,
1999). Similarly, agricultural development projects have often encouraged men to
grow cash crops, leading them to take over farmlands that women had previously
used to grow food. But in many countries, men consider feeding the family to be
a woman’s responsibility, and so men use their profits to purchase tobacco or other
high-status goods for themselves rather than purchase food for their families. As
a result, malnutrition increases among women and children (Lappé et al., 1998).

Infectious and Parasitic Diseases

One indirect result of malnutrition and poverty more broadly is a high rate of
infectious and parasitic disease. As Table 4.2 shows, such diseases account for more
deaths in the less developed nations (and far more in the least developed nations)
than in the more developed nations.

As in Europe and the United States before the 20th century, the high rates
of infectious and parasitic diseases in the less developed nations reflect the dismal
circumstances in which many people live. As we’ve already seen, malnutrition
leaves individuals far more susceptible to a wide range of diseases. In addition,
overcrowding promotes the spread of airborne diseases such as tuberculosis, and
contamination of the water supply with sewage spreads waterborne diseases such
as cholera and intestinal infections. Similarly, poor housing and lack of clean
water for bathing result in frequent contact with disease-spreading rats, fleas,
and lice.

The infectious and parasitic diseases that cause the most deaths in the less de-
veloped nations are HIV/AIDS, tuberculosis, diarrheal diseases, and malaria. The
next section discusses these four diseases plus a fifth, Zika virus, which is spreading
rapidly.

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78 C H A P T E R 4

HIV/AIDS In the less developed nations, HIV/AIDS now causes more deaths
than any other infectious or parasitic disease. Heterosexual intercourse remains
the major mode of HIV transmission (as it has been from the start), although
illicit intravenous drug use and blood transfusions are also sources of infection
(in the absence of funds to purchase sterile needles or medical equipment). Trans-
mission from childbearing women to their babies, however, has declined sharply
because of the use of antiretroviral drugs by pregnant women (UNAIDS/WHO,
2017).

Still, in the hardest-hit countries, around one-quarter of adults are infected
with HIV/AIDS (Central Intelligence Agency, 2018). Sub-Saharan Africa ac-
counts for almost two-thirds of all new infections (UNAIDS/WHO, 2017). HIV
infection is also spreading rapidly in Eastern Europe and Central Asia, primarily
among individuals who inject heroin and their sexual partners. Life expectancies
for infected individuals have increased because of the development of antiretrovi-
ral drugs but remain under 50 years in the developing world (Population Refer-
ence Bureau, 2014).

As stunning as these numbers might appear, they understate the impact of
HIV/AIDS. Unlike most illnesses, HIV/AIDS commonly strikes at midlife, nor-
mally the most economically productive years. In the hardest-hit countries, agri-
cultural production is declining steeply, causing food shortages. Moreover, unlike
most diseases, HIV/AIDS has struck not only the poor but also the middle and
upper classes (because of their greater access to sexual partners, reduced commit-
ment to traditional and more conservative sexual norms, and residence in cities
where the disease is more common) (Fortson, 2008; WHO, 2009a). Deaths among
teachers, doctors, businesspeople, and the like have crippled schools and the econ-
omy in numerous countries. The resulting increase in unemployment and poverty
is sending ripples of illness and death throughout these countries. In addition,
the deaths of many young mothers have produced a corresponding rise in deaths
among children who lose their only (or best) provider.

Poverty primarily explains why HIV/AIDS has hit Africa especially hard. In
addition, the epidemic has been stoked by labor migration, women’s low status,
and sexual behavior patterns. Labor migration is common across Africa because
the need to earn a living draws African men from small villages to cities and other
areas where factories, mines, and plantations offer jobs. These men often must live
apart from their wives and families for weeks, months, and even years at a time.
Such conditions foster the use of prostitutes and consequently foster the spread of
sexually transmitted diseases (STDs), including HIV/AIDS. In turn, some migrants
may eventually carry these diseases back to their villages (Hunt, 1996; UNAIDS/
WHO, 2010).

Meanwhile, health conditions also deteriorate among women and children left
in rural villages (Hunt, 1996). The loss of men’s labor makes it more difficult for
women to grow sufficient crops to feed themselves and their children, leaving them
increasingly malnourished and susceptible to disease. Faced with these conditions,
women’s only option is to seek employment in cities, where many find that they
must trade sex for cash or other favors to survive, even if doing so increases their
risk of HIV/AIDS (Hunt, 1989; Simmons, Farmer, and Schoepf, 1996).

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79I L L N E S S A N D D E AT H I N T H E L E S S D E V E L O P E D N AT I O N S

As this suggests, girls’ and women’s low social and economic status also fosters
the spread of HIV/AIDS in Africa. In countries where girls and women have
low status, they may face physical violence if they ask a husband or other sexual
partner to use a condom, find that male teachers demand sex as a requirement for
attending school, or be pressured into marriages or sexual relationships with older
men who are more likely to be infected. In addition, because their low status of-
ten keeps them from accessing medical care, women are more likely than men to
have untreated STDs that can produce open sores and thus increase the chances of
infection for any woman who is exposed to HIV.

Sexual behavior patterns also play a role in the epidemic. Current research
suggests that risks of infection are greater in Africa not because the average number
of sexual partners is high there but because long-term, concurrent sexual partners
are more common (UNAIDS/WHO, 2010). In Western countries, individuals
typically have serial sexual partners—one after another—such as a first mar-
riage followed by a brief sexual relationship or two and then a second marriage.
In contrast, in parts of Africa (especially sub-Saharan Africa), individuals often
have long-term concurrent sexual partners: multiple sexual relationships during
overlapping time periods.

Concurrent partnerships increase the chances of spreading HIV/AIDS for
two reasons. First, people around the world typically use condoms early in rela-
tionships but stop doing so if the relationship continues. Consequently, persons
in long-term concurrent relationships are more likely than those in short-term
monogamous relationships to reach the point where they stop using condoms
(Mah and Halperin, 2010). Second, HIV/AIDS is most easily transmitted only
when an individual is healthy enough to have an active sex life and has a “high
viral load” (i.e., has many HIV cells in his or her body). If an individual hits that
peak transmission point while he or she has concurrent sexual partners, then all of
those partners—and all of their partners—will be at risk.

Tuberculosis Each year, tuberculosis infects around 10 million people and kills
1 million or so (WHO, 2017a). The disease is most common in Asia, followed by
Africa. Tuberculosis is particularly devastating because, like HIV/ AIDS, it typically
hits people during their prime work years, so it sharply curtails family incomes.

Because of a consolidated, worldwide effort to make powerful treatment
available even in poor regions, rates of tuberculosis have been falling for the past
two decades in most of the world (WHO, 2017a). However, because HIV/AIDS
makes individuals more susceptible to other infections, tuberculosis continues to
increase in those African nations where HIV/AIDS is most common.

Diarrheal Diseases In the more developed nations, diarrhea typically causes
only passing discomfort. In the less developed nations, diarrheal diseases are the
second leading cause of death among children younger than age five (WHO,
2009b).

Diarrhea is a symptom, not a disease, and can result from infection with
any of several bacteria, viruses, or parasites. Diarrhea kills through dehydration
and electrolytic imbalance. It also leads to malnutrition when affected children

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80 C H A P T E R 4

not only eat less but also absorb fewer nutrients from the foods they do eat.
In turn, malnutrition leaves children susceptible to other fatal illnesses. Con-
versely, other illnesses can leave children susceptible to both diarrheal diseases
and malnutrition.

Diarrheal diseases (including dysentery, cholera, and infection with Escherichia
coli) occur when individuals ingest contaminated water or foods. The likelihood
of severe diarrhea is greatest when families lack refrigerators, sanitary toilets, suf-
ficient fuel to cook foods thoroughly, or safe water for cooking and cleaning.
WHO estimates that around 2 billion people lack access to “improved” water
supplies, and many more lack access to truly safe water (WHO/UNICEF, 2014).
The number of persons without safe water is greatest in Asia, but the percentage of
those without safe water is highest in sub-Saharan Africa.

Survival rates for children with diarrheal diseases in less developed na-
tions have improved rapidly in recent years. Before the 1960s, those suffering
from diarrheal diseases could be treated only by using expensive intravenous
fluids, thus making treatment unfeasible for many in the less developed na-
tions. Since then, however, scientists have developed saline solutions and pea-
nut butter pastes that keep children alive at least as well as more expensive
treatments.

Malaria Each year, around 200 million people become infected with malaria,
and approximately one-half million—mostly African children—die from the re-
sulting anemia, general debility, or brain infections (Shah, 2010; WHO, 2017b).
In addition, millions more find themselves unable to work because of continuing
malarial chills and fevers, or die because malaria leaves them susceptible to other
fatal illnesses.

Malaria poses the greatest threat to pregnant women, infants, and young chil-
dren. Among pregnant women, malaria increases the risks of miscarriage, anemia,
and premature labor, each of which increases the risk of potentially fatal hemor-
rhaging. Infants born to malaria-infected women typically have lower than aver-
age birth weight and hence a higher chance of death or disability.

Malaria is caused by protozoan parasites belonging to the genus Plasmodium.
Malaria is transmitted only by Anopheles mosquitoes and consequently exists only
where those mosquitoes live. The disease cycle begins when a mosquito bites an
infected individual and ingests the parasite from the individual’s blood. The par-
asite reproduces in the mosquito’s stomach and then migrates to the mosquito’s
salivary glands. The next time the mosquito bites someone, it transmits the parasite
to that person.

Because of this transmission cycle, eliminating Anopheles mosquitoes will
eliminate malaria. Since the 1940s, antimalaria campaigns have depended heavily
on pesticides to kill mosquitoes. Although such campaigns initially work well, over
time pesticide-resistant mosquitoes evolve, and the pesticides lose their potency
(Shah, 2010). As a result, nations must constantly search for new and more toxic
pesticides, each of which can endanger birds, fish, and insects that benefit hu-
mans. Because of these problems, some recent campaigns have instead focused on

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81I L L N E S S A N D D E AT H I N T H E L E S S D E V E L O P E D N AT I O N S

encouraging the use of insect repellents, mosquito netting, and screens to prevent
infection. These campaigns also have focused on encouraging the use of drugs
such as chloroquine and mefloquine, which can both prevent and treat malaria.
Unfortunately, because these drugs can cause debilitating side effects and cost
more than many residents of developing nations can afford, infected individuals
often stop taking the drugs before they are cured. This continual undertreatment
of malaria, like the undertreatment of tuberculosis, has encouraged the evolution
of drug-resistant malaria.

Zika Zika virus burst into the news in 2015 when Brazil was hit with an epi-
demic of babies born with tiny heads and brains, leaving them with severe neu-
rological and physical problems. Researchers quickly traced these problems to
prenatal infection with Zika, which can be spread by mosquitoes and through
unprotected sexual intercourse. Zika can also lead to serious neurological prob-
lems in infected adults.

To date there is neither a vaccine nor a treatment for Zika. Instead, govern-
ments and health authorities have relied on warning individuals to avoid both
mosquitoes and unprotected sex. These measures, however, are almost meaningless
for those most at risk (Lancet Global, 2016; Rasanathan, 2017). For example, many
poor people in places like rural Brazil cannot afford to follow WHO’s recom-
mendations to avoid mosquitoes by using air-conditioning and insect repellant,
wearing only clothes that have no holes in them, and avoiding areas where water
must be carried home in buckets.

Similarly, in developing nations where Zika is common, women have been
warned to avoid unprotected sex, avoid pregnancy, and consider abortion. Yet
many poor women lack the power to force men to use condoms and lack access
to birth control or abortion (whether because of cost or because it is illegal).
Nor has there been much effort to help families care for children with devastat-
ing disabilities. This is a classic case of defining something as a personal problem
rather than as a public issue. A more sociological approach would be to focus
on strategies such as eliminating areas where mosquitoes breed and changing
laws and health care systems to give women access to the information and care
that they need.

Neglected Tropical Diseases

In addition to deaths from the major diseases just discussed, many of those living
in the less developed nations are also susceptible to a neglected tropical disease
(NTD). This term refers to diseases that receive far less attention than they deserve
given their impact. Around 2 billion people around the globe live with these dis-
eases, mostly in the less developed nations (Hotez, 2016).

The core problem for those who suffer from NTDs is that wealthy people
rarely get them. As a result, nations, pharmaceutical companies, and even non-
profits typically have little interest in spending money to develop or distribute

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82 C H A P T E R 4

treatments because most who live with these diseases lack both political power and
money to spend on treatments (Hotez, 2016).

The World Health Organization has officially declared 17 diseases as NTDs.
The most common are the parasitic diseases ascariasis (which causes malnutrition,
wheezing, and cognitive loss in children), trichuriasis (which causes severe bowel
diseases), and hookworm disease (which causes iron deficiency and can lead to cog-
nitive deficits, malnutrition, and death). All of these diseases make it difficult for
children to succeed in school and for adults to function as workers. As a result, these
disease lock poor people and nations into poverty. Many of these diseases can be
effectively treated, and many have been cured, but much work remains to be done.

Infant Mortality

Like infectious and parasitic diseases, and as Table 4.1 shows, infant mortality is
many times higher in the less developed nations than in the more developed na-
tions (Population Reference Bureau, 2017). The most common causes of infant
mortality in poorer nations are malnutrition and infections (particularly respira-
tory infections and diarrheal diseases). Because we examined these factors earlier
in this chapter, we focus here on two other important sources of infant mortality:
women’s status and infant formula manufacturers.

The Role of Women’s Status The low status of women plays a critical role
in infant mortality in less developed nations. In these countries, infant mortality
occurs most often among babies born to underfed, overworked mothers, many of
whom suffer from untreated illnesses (WHO, Reproductive Health and Research
Department, 2004).

These conditions reflect women’s low status. Throughout the less developed
nations, girls and women often spend long hours in heavy labor (Messer, 1997).
Yet they typically receive less food and less health care (including immunizations)
than do boys and men (Kristof and WuDunn, 2010; Messer, 1997). As a result, girls
often enter their childbearing years already ill and malnourished—a situation that
worsens as pregnancies further stress their bodies and drain their energy.

Similarly, infant mortality is highest among infants born to the youngest or
oldest mothers and to infants born less than 18 months after a sibling. This situ-
ation occurs most commonly in cultures that expect women to marry at young
ages, that judge women’s worth by how many children they have (especially male
children), and that restrict women’s access to contraception. In part, these cultural
values reflect the economic realities of agricultural life: In agricultural societies,
children produce more economic resources than they consume, so a family with
many children is more likely to survive than a family with few children. In addi-
tion, in the absence of pension systems, individuals can guarantee their security in
old age only by having sons given that daughters generally are expected to take
care of their husbands’ parents rather than their own. For this reason, it is common
for families in some parts of Asia to let girl babies die by giving them less food or
medical care, to use medical technologies to identify and then abort female fetuses,
or to kill girl babies outright (Kristof and WuDunn, 2010; Zhu, Lu, and Hesketh,

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83I L L N E S S A N D D E AT H I N T H E L E S S D E V E L O P E D N AT I O N S

2009). This situation is discussed in “Ethical Debate: The Ethics of Prenatal Sex
Selection,” p. 84.

In sum, research suggests that if women’s social status were higher, they would
enter their childbearing years with healthier bodies, would wait longer before
having babies, would wait longer between babies, and would have fewer babies in
total, with each of these factors lowering the infant mortality rate. For all of these
reasons, many researchers and public health workers have suggested that the most
effective way to reduce infant mortality is to improve the status of women, thereby
increasing their power to make decisions for themselves. This at least partly ex-
plains why infant mortality is so much lower in Costa Rica and China than in
some other countries at similar levels of development.

Maternal Mortality

Women’s low status plays a similar role in causing maternal mortality. Maternal
mortality is now quite rare in the more developed nations but remains the primary
cause of death among women of reproductive age in the less developed nations.
For example, in Afghanistan 1 of every 32 women dies from childbirth complica-
tions compared to 1 of every 4600 women in the United Kingdom (Population
Reference Bureau, 2014).

Most commonly, maternal mortality occurs when malnutrition or malaria
leaves women anemic, which can lead to hemorrhaging during birth. In addition,
in cultures that place low value on women, governments are less likely to invest
money on prenatal or maternal care, increasing the risk to any woman who expe-
riences complications during childbirth.

Maternal mortality is also more common among the 125 million girls and
women in Africa, Indonesia, Yemen, and elsewhere who have experienced female
genital cutting (UNICEF, 2013). Typically the clitoris and labia minora are re-
moved, and sometimes the labia minora and parts of the labia majora as well.
In addition, the sides of the vulva may be stitched together, leaving only a small
opening for urine and menstrual fluid to escape. Most commonly, a midwife or
other lay healer does the cutting using a razor blade, knife, or piece of broken glass.

Genital cutting is practiced because it is believed in these cultures to make
women cleaner, prettier, more fertile, more docile, and healthier. Unfortunately,
scar tissue and narrowed vaginal openings can make it difficult for a baby to
emerge, causing women to die from hemorrhage. Belief, practices, and laws are
changing, however, and rates of female genital cutting have declined over the last
20 years (UNICEF, 2013).

Finally, the risk of maternal mortality is especially high for women who give
birth before age 20, after age 35, or more than three times—all situations that are
common when women lack access to contraception. In addition, when women
lack contraception, they often turn to abortion. Abortion is a technically sim-
ple procedure, far safer than childbirth when performed by trained professionals
(whether doctors or not) working in sterile conditions with proper tools. In the
absence of these conditions, however, women die from infections caused by un-
sterile instruments, hemorrhage when instruments pierce the uterus, and poisons

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84 C H A P T E R 4

ingested in hopes of causing an abortion (Sedgh et al., 2007). Nevertheless, most
of the less developed nations have restricted or outlawed abortion because of cul-
tural traditions, religious beliefs, a desire by political elites to increase population,
or political pressure from U.S. anti-abortion forces. Yet a comprehensive global
study published in the prestigious medical journal The Lancet found that outlawing
abortion has no effect on the number of women who get abortions but greatly
increases the number who die from abortions (Sedgh et al., 2007).

Maternal mortality has declined significantly during the past 30 years, primar-
ily because of decreases in the number of births per woman and increases in wom-
en’s education, income, and access to skilled birth attendants (Hogan et al., 2010).
Mortality is now concentrated in countries torn by war (including Afghanistan

The Ethics of Prenatal Sex Selection

Zhang Zhiquan and his wife, Mei, live in a rural village in the People’s Republic of
China. Growing up in rural China, they learned early that couples needed sons to
prosper and to care for them in their old age. They also learned that sons were
essential for passing on the family name, that wives who produced no sons deserved
mockery and abuse, and that girls were so useless that in the past many rural families
did not even bother to name them. When Mei became pregnant, therefore, they had
to decide what they would do if the baby were female. In the past, if they felt unable
or unwilling to raise a daughter, their only options would have been to kill the baby
or give her up for adoption—choices that some families still make. Now, however,
they have one additional option: having a health care worker identify the fetus’s sex
through ultrasound or amniocentesis and perform an abortion if the fetus is female.

Half a world away, the same issues of sex preselection and selective abortion arise,
although in a different form:

Sharon and James Black live in Denver, Colorado, with their two young daughters.
Because they both believe that children need a parent home at the end of the
school day, Sharon works only part time as a secretary, and James works two
jobs so they can make ends meet. Sharon has just learned she is pregnant again.
Although they had only planned on having two children, James always wanted
a son with whom he can share his interests in sports and automobiles. Having
another child, however, will further strain their finances and make it difficult
for Sharon to return to full-time work for several more years. Consequently,
continuing the pregnancy does not seem worthwhile unless they know that the
fetus is male.

Is prenatal sex selection ethically justified in these cases? Although the
circumstances differ enormously, for both families, the birth of a daughter would bring
substantial economic hardship. For both families, too, a daughter would enter life
unwanted and already having failed to meet her parents’ expectations. In addition, for
the Chinese family and possibly (although to a lesser extent) the American family, the
birth of another daughter might lower the wife’s status and strain the marriage. Given
these circumstances, wouldn’t it be best for all concerned if the families use the available
medical technology to determine their fetuses’ sex and abort them if they are female?

For hundreds of thousands of couples in Asia and a growing number in the West,
the answer, resoundingly, is yes. In China, for example, 120 boys are born for every 100

ETHICAL DEBATE

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85I L L N E S S A N D D E AT H I N T H E L E S S D E V E L O P E D N AT I O N S

and Ethiopia) and the southern African countries most severely affected by the
HIV/AIDS epidemic.

The Role of Infant Formula Manufacturers A final cause of infant mortality
in the less developed nations is the use of infant formula. Researchers estimate
that 13% of all deaths before age five could be prevented if infants were breastfed
during their first six months of life (UNICEF, 2005).

In the less developed nations, several factors contribute to the especially high
rates of death and disease among infants who are not breastfed. First, in addition to
the inherent nutritional limitations of breast milk substitutes, bottle-feeding itself
can expose infants to tremendous risks. Infant formula is typically sold as a powder

females overall (Poston, Conde, and DeSalvo, 2011.). The ratio is considerably more
skewed in rural areas and for second births to a couple.

Those who support prenatal sex selection argue that selective abortion causes
little harm, whereas the birth of unwanted girls in poorer nations can financially strain
families, leave mothers open to ridicule or even physical abuse, and result in child
neglect, abuse, or abandonment. Those who oppose prenatal sex selection argue that
it does more harm than good because it reinforces the low status of females. Although
in rare circumstances families use medical technologies to ensure that their babies are
female (such as families with a history of hemophilia, a disease that affects only males),
in the less developed nations, prenatal sex selection almost always means selecting
males. However, in the more developed nations, the preference for sons has declined
substantially or even reversed (Andersson, Hank, and Ronsen, 2006; Edgar et al., 2006).

When families select male fetuses over female fetuses, they proclaim male babies
preferable. Moreover, when health care workers help families to select male babies,
the workers in essence validate this preference. Finally, when health care workers assist
in prenatal sex selection—whether helping families to select males or females—they
reinforce the idea that males and females are inherently different. After all, if male
and female personalities, interests, and aptitudes were more similar than different,
why would families need to choose one over the other?

In sum, to assess the ethics of prenatal sex selection, we need to weigh the
potential benefits and costs for families and for society as a whole.

Sociological Questions

1. What social views and values about medicine, society, and the body are reflected
in prenatal sex selection?

2. Which social groups are in conflict over this issue? Whose interests are served by
allowing prenatal sex selection? By forbidding it?

3. Which of these groups has more power to enforce its view? What kinds of power
do they have?

4. What are the intended consequences of permitting prenatal sex selection? What
are the unintended social, economic, political, and health consequences of this
policy?

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86 C H A P T E R 4

that must be mixed with water and then transferred to a bottle before it can be used.
In most of the less developed nations, this water contains dangerous infectious or-
ganisms. Those organisms can be killed if the water and bottle are boiled, but many
families don’t understand how or why they should do so. Moreover, throughout the
less developed nations, many women and children already spend hours each day
getting water and firewood and lack the time and energy to get the extra supplies
needed to sterilize water and bottles.

Second, infant formula is not free. To cut the costs, families often stretch infant
formulas by diluting them with water. Babies fed diluted formula in essence starve
to death while filling their stomachs.

Finally, by altering the hormonal levels in a woman’s body, breastfeeding serves
as a moderately effective contraceptive. Breastfeeding thus helps women to space
out pregnancies and gives each baby a better chance for survival.

Given all the benefits of breastfeeding, why don’t more women in less devel-
oped nations breastfeed? Part of the answer lies in traditional cultural beliefs, such as
the conviction that children require certain traditional foods for health or that it is
unsafe for men to have sex with breastfeeding women (Dettwyler, 1995). Part of the
answer lies in practical economic and social issues, such as the difficulty of meshing
breastfeeding with paid work. And part of the answer lies with multinational food
corporations that continue to active promote bottle-feeding despite international
agreements (under the World Health Organization) against the practice. Use of in-
fant formula is rising significantly, especially in the growing economies of China and
southeast Asia where more women can now afford formula and more regard it as
“modern” (Baker et al., 2016).

Respiratory Diseases

Finally, respiratory diseases such as emphysema are also major killers in the less
developed nations, just as they are in the more developed nations. As with all
disease in the less developed nations, poverty and malnutrition increase individual
susceptibility to illness. In addition, long periods spent cooking over open fires in
closed rooms expose millions of women to cancer-causing toxins equivalent to
smoking several packs of cigarettes daily. Meanwhile, those who live in cities such
as Caracas and Calcutta risk their health daily because of pollution from automo-
biles and industries.

Unfortunately, in some less developed nations, government officials lack the
power to control polluting industries—or even profit from and promote these in-
dustries. Equally important, officials in less developed nations sometimes believe that
pollution and the attendant morbidity and mortality are short-term costs they must
pay to industrialize and improve their nation’s health in the long run.

To these factors must be added the role of tobacco, which is a major cause of
respiratory disease, heart disease, and cancer in both less developed and more devel-
oped nations (WHO, 2017c). Tobacco use has grown steadily in the less developed
nations since 1964, when the U.S. surgeon declared tobacco a cause of lung cancer,
U.S. sales of cigarettes plummeted, and tobacco manufacturers (most based in the

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87I L L N E S S A N D D E AT H I N T H E L E S S D E V E L O P E D N AT I O N S

United States) turned to the less developed nations for new markets. Advertisements
for tobacco are now ubiquitous in these nations (Savell et al., 2015).

War

The most unnatural cause of death and disease in the less developed nations (and
elsewhere) is war. Political and economic instability, combined with environmen-
tal degradation, have made the less developed nations particularly vulnerable to
war. Wars not only can wipe out a generation of soldiers but also can take astound-
ingly high tolls among civilians. For example, during the seven years after coali-
tion forces led by the United States invaded Iraq in 2003, around 450,000 Iraqi
civilians—many of them women and children—were killed by military forces
(Hagopian et al., 2013).

Civilians are killed not only by bombs and guns but also by forced labor;
malnutrition after soldiers burn crops, kill farm animals, and force farmers off
their lands; and diseases that spread when refugees are forced into overcrowded,
unsanitary camps and when soldiers destroy water, sewage, and health care facil-
ities. During six years of warfare in Darfur, for example, 80% of those who died
were killed not by guns or bombs but by diseases that spread when warfare led to
economic, social, and ecological destruction (Olivier and Debarati, 2010).

Survivors, too, pay a huge price, often including both long-lasting disability and
the psychological trauma of losing one’s family, community, and work. The traumas
are particularly high for victims of mass rape, a common tool of warfare that has
been used extensively in recent years; those who survive can find themselves not
only infertile or permanently disabled by their injuries but also stigmatized and
sometimes abandoned by families and neighbors. Finally, an estimated 300,000 chil-
dren in more than 30 less developed nations are serving as soldiers (UNICEF, 2010).
Mortality rates are extremely high, as are the health risks experienced by those who
survive. These children are exposed to all the horrors and dangers of warfare and to
increased risks of malnutrition, disease, injuries from land mines, sexual abuse, and
substance abuse, while losing opportunities for education and normal family life that
might protect their mental and physical health as adults.

Disasters

The devastation wrought by earthquakes, tsunamis, floods, and other natural disas-
ters in the less developed nations is impossible to miss: 200,000 people confirmed
dead in 2004 when a tsunami hit Indonesia, another 200,000 killed by a hurricane
in Haiti in 2010, more than 60,000 confirmed dead after a 2008 earthquake in
China, and so on. In addition to the immediate deaths caused by natural disasters,
many more people suffer poor health or even death when disasters kill crops; de-
stroy sewer, water, and health care facilities; throw people into poverty; and scatter,
disable, or kill health care workers.

Although humans can’t prevent natural disasters, they can greatly reduce—or
increase—their toll (Revkin, 2005). Schools, homes, and other structures can be
retrofitted or built to withstand most earthquakes at costs far less than the cost
of replacing or repairing damaged or destroyed structures. Dams, nuclear power

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88 C H A P T E R 4

plants, and other dangerous structures can be located away from vulnerable flood
plains and earthquake zones. And disaster-preparedness programs can be devel-
oped to warn people of impending disasters, offer means of escape, and secure
public health infrastructures. For example, despite the extraordinary violence of
the tsunami and earthquake that hit Japan in 2011, deaths were far lower than they
otherwise would have been because the country had prepared so well for natural
disasters. However, such preparation requires not only technical knowledge but
also both the money and political will to act on that knowledge (Revkin, 2005).
The less developed nations are particularly vulnerable to disasters because they
lack the necessary funding and often are ruled by small elites who have no real
commitment to protecting the citizenry.

The earthquake that struck Haiti in January 2010 illuminates these points. The
earthquake’s impact was particularly devastating not only because of its power but
also because of the population’s poverty and the government’s corruption. When
the earthquake struck, most of the population was already living in poverty, and
half in extreme poverty (The New York Times, 2010). Government corruption had
siphoned money into politicians’ pockets and away from building hospitals, roads,
clean-water systems, and earthquake-proof housing. As a result, many died when
buildings were crushed, aid workers couldn’t reach the injured, few hospital beds
were available, and vulnerable water systems made it easy for cholera to spread.

Structural Violence

Many of the causes of ill health discussed in this chapter can be summed up under
the term structural violence. Structural violence refers to social arrangements that

Whenever children serve as soldiers, they risk terrible injuries, psychological trauma, and of course death.

M
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89I L L N E S S A N D D E AT H I N T H E L E S S D E V E L O P E D N AT I O N S

are deeply embedded in the politics, culture, or economy of a society and that
harm individuals or keep them from reaching their full potential (Farmer et al.,
2006, 2013). (See “Key Concepts: Structural Violence,” p. 89). This concept is par-
ticularly useful for explaining why poor populations are especially likely to fall ill
and for protecting the health of those vulnerable populations.

The case of HIV/AIDS in Rwanda provides a useful example. Most Rwan-
dans are extremely poor. Meanwhile, across the social classes, women continue
to have far less power than do men. In addition, Rwanda experienced a massive,
genocidal war during the 1990s that caused untold numbers of deaths and inju-
ries and forced much of the population to flee to refugee camps. All these factors
reflect and reinforce structural violence, and have contributed to an epidemic of
HIV/AIDS in Rwanda.

As this suggests, effective interventions need to take structural violence into
consideration (Farmer et al., 2006). For example, training doctors in the best ways
to treat HIV/AIDS will have little effect if few Rwandans can afford to visit them.
Instead, it may be more effective to train lay workers to provide basic, low-cost
treatment. Similarly, any efforts devoted to reducing poverty in Rwanda would
attack structural inequality at its roots and increase the odds that Rwandans could
purchase both condoms and HIV/AIDS treatment.

IMPLICATIONS

One of the major threads throughout this chapter is the important role poverty
plays in causing illness and death in the less developed nations. Consequently,
reducing poverty in these nations should raise them to the health levels found in
the more developed nations. Enacting various inexpensive public health measures

Structural Violence

Structural violence refers to social structures and institutions that are embedded in a
society’s politics, culture, or economy and that either harm individuals or keep them
from reaching their full potential.

Type of
Violence Committed by Effects

Visibility
of Effects Example

“Ordinary”
violence

Individuals Injury,
death

Obvious,
concrete

Bar fight

Structural
violence

Social structures,
social institutions,
or individuals
working on behalf
of social structures
or institutions

Injury, illness,
death,
economic
harm, social
harm

Often
hard to
recognize

Laws that set
the minimum
wage too low
for families to
buy healthy
food

KEY CONCEPTS

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90 C H A P T E R 4

could also make a real difference. For example, deaths among children in poor
countries have fallen precipitously in the last 20 years primarily because of in-
terventions such as distributing insecticide-treated mosquito nets and increasing
vaccination rates (UNICEF, 2014).

SUMMARY

1. The more developed nations are nations that have relatively high gross national
income per capita and diverse economies composed of many different
industries. The less developed nations are those nations with relatively low GNI
per capita and relatively simple economies. The least developed nations are the
worst-off subset of the less developed nations.

2. Compared with the more developed nations, the less developed nations
have higher infant and maternal mortality, lower life expectancies, and a
greater burden of infectious and parasitic diseases, especially HIV/AIDS,
tuberculosis, diarrheal diseases, and malaria.

3. In a major change from past generations, chronic disease (especially heart
disease) is rapidly emerging as a common cause of death in the less and even
least developed nations.

4. The main reason for low life expectancy in the less developed nations
is chronic malnutrition. Chronic malnutrition occurs most often in
undemocratic countries where a few people control most resources. Within
countries, malnutrition occurs most often among those groups with the least
access to resources—typically poor women and their children. International
aid can increase malnutrition when it increases power inequities.

5. HIV/AIDS has hit parts of Africa especially hard, primarily because of
poverty. In addition, the epidemic has been stoked by labor migration
(which takes men away from their families and increases their use of
prostitutes), women’s low status, and concurrent sexual partners (i.e., having
more than one long-term sexual partner at a time).

6. Infant mortality is a far more common cause of death in the less developed
nations. The most common killers of infants in the less developed nations
are malnutrition and infections. In addition, the low status of women and
the mass marketing of infant formula by multinational corporations have
contributed to infant mortality.

7. Maternal mortality is the primary cause of death among women of
reproductive age in the less developed nations. Because of their low status,
girls are married off young, bear children before their bodies have matured
enough to do so safely, receive too little food to nourish their fetuses or their
own bodies, and lack access to birth control or safe abortions.

8. Political and economic instability, combined with environmental
degradation, leave the less developed nations particularly vulnerable to war.

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91I L L N E S S A N D D E AT H I N T H E L E S S D E V E L O P E D N AT I O N S

Wars typically kill far more civilians than soldiers, primarily by causing
famines and spreading illnesses.

9. The less developed nations are particularly vulnerable to disasters
because they lack the necessary economic funds to build earthquake-safe
infrastructures and because in many cases they are ruled by small elites who
have no real commitment to doing so.

10. Structural violence refers to social structures and institutions that are embedded
in a society’s politics, culture, or economy and that either harm individuals
or keep them from reaching their full potential.

REVIEW QUESTIONS

1. How does poverty contribute to illness in less developed nations?

2. How do international politics and multinational corporations contribute
to illness in less developed nations? How do undemocratic governments
contribute?

3. How does the low status of women contribute to maternal mortality in less
developed nations? To infant mortality?

4. How are the effects of natural disasters amplified by the political and
economic conditions in less developed nations?

CRITICAL THINKING QUESTIONS

1. For the past five years, you have worked as a public health worker in a poor,
urban, minority neighborhood in the United States. You have just accepted
an exchange agreement to work for three years in Cape Town, South Africa.
What parallels will you expect to see between these two settings in terms of
the nature and sources of health problems and the best ways for dealing with
health problems?

2. Identify the three changes you think would contribute most to improving
the health of people in the less developed nations. Justify your choices.

3. Identify three selfish reasons why Americans (individuals, corporations,
government, voluntary organizations) should care about illness and death in
less developed nations.

4. Use the concept of structural violence to help explain why infant mortality is
so much higher in poor nations than in wealthy ones.

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93

PA RT

II

The Meaning and

Experience of Illness

Chapter 5 The Social Meanings of Illness

Chapter 6 The Experience of Disability, Chronic Pain, and Chronic Illness

Chapter 7 The Sociology of Mental Illness

Our commonsense understandings of the world tell us that illness is a purely
biological condition, definable by objectively measured biological traits. As we
will see in Part II, however, definitions of illness vary considerably over time and
across social groups. In Chapter 5, we explore the social meanings of illness and
consider how ideas about the nature and causes of illness have changed historically,
from biblical explanations that attributed illness to punishment for sin to modern
explanations that attribute illness to risky lifestyles. We also examine how defining
something as an illness can act as a form of social control.

Whereas Chapter 5 discusses the meaning of illness in the abstract, Chapter 6
looks at the consequences of chronic illness, chronic pain, and disability for in-
dividuals. Beginning with a discussion of how Western society historically has
treated those who have chronic illnesses and disabilities, we then consider the
modern experience of illness and of chronic pain, including the processes involved
in responding to initial symptoms, searching for mainstream or alternative thera-
pies, and coming to terms with a changed body and self-image.

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94 PA RT II

In Chapter 7, we examine parallel questions regarding mental illness. We be-
gin by exploring what it means to call something a mental illness. Then we look
at how and why mental illness is distributed among social groups; how Western
society historically has treated persons with mental illnesses; and how individuals
experience mental illness, from initial symptoms to treatment, to social status after
treatment.

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95

C H A P T E R

The Social

Meanings of Illness

C H A P T E R

5

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96 C H A P T E R 5

LEARNING OBJECTIVES

After reading this chapter, students should be able to:

● Understand how cultural explanations for illness have changed over the
centuries.

● Compare the medical and sociological models of illness.
● Assess the impact of medicalization.
● Use and critique the concept of a sick role.

According to Lunesta.com, a website aimed at the general public and run by the
company that manufactures the popular insomnia drug Lunesta:

Approximately 20 million adults in the U.S. suffer from insomnia—a medical
condition in which difficulty falling asleep and/or staying asleep has a negative
impact on the next day. . . . Symptoms [include] difficulty falling asleep, waking
up frequently during the night, difficulty returning to sleep, waking up too
early in the morning, unrefreshing sleep, daytime sleepiness, [or] difficulty
concentrating. . . . [Insomnia] is a serious medical condition that can affect your
mind and body [and cause] daytime fatigue, irritability, decreased feelings of
wellbeing, decreased ability to concentrate, decreased ability to problem solve,
[and] difficulty in making decisions.

To encourage readers to seek (drug) treatment for sleep problems, the website
not only stresses the need to seek medical help but also offers suggestions on what
to say when seeking help from doctors, how to get information on discounted
Lunesta prescriptions, and good web links to national nonprofit organizations
(partly funded by pharmaceutical manufacturers) that focus on identifying and
treating sleep problems.

Does this seem like a reasonable way to deal with sleep problems—many of
which are caused by nonmedical issues such as working odd hours, job stress, an
overly firm mattress, or too much late-night television? According to many doc-
tors, the answer is yes. Diagnoses with insomnia have skyrocketed in recent years
following intensive marketing campaigns for these drugs—even though research
suggests that they provide only a few extra minutes of sleep per night but can cause
traffic accidents, crippling falls, and amnesia-like episodes in which individuals eat,
walk, engage in sex, or perform other activities they would not consciously have
chosen (Moloney, Konrad, and Zimmer, 2011).

This raises the question of what we mean when we say something is a disease.
In this chapter, we examine the meaning of illness and disease. We look first at how
people have explained illness across history and then at the medical and sociolog-
ical models of illness. Then we consider how medicine can act as an institution

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97T H E S O C I A L M E A N I N G S O F I L L N E S S

of social control, highlighting the process through which behaviors or conditions
become defined as illnesses, the consequences of these definitions for individuals
and society, and the potential consequences of our growing reliance on genetic
explanations for disease.

EXPLAINING ILLNESS ACROSS HISTORY

Throughout history, people have feared illness. To relieve their anxiety and make
the world seem less frightening, many have sought explanations for why illness
occurs and why it strikes some rather than others. Most often, these explana-
tions defined illness as a deserved punishment for sinful or foolish behaviors
and blamed individuals for their own illnesses (Brandt and Rozin, 1997; Weitz,
1991). Such explanations provide reassurance by reinforcing people’s belief
in a “just world” in which punishment falls only on the guilty (Meyerowitz,
Williams, and Gessner, 1987). For example, both the Jewish and Christian Bibles
describe leprosy as punishment for sin. As a result, throughout the Middle Ages,
Christian society required anyone diagnosed with leprosy to participate in a
special mass for the dead, in which a priest would shovel dirt on the individual’s
feet to symbolize his or her civil and religious death. From then on, the indi-
vidual was legally prohibited from entering public gathering places, washing in
springs or streams, drinking from another’s cup, wearing anything other than the
special “leper’s dress,” touching anything before buying it, and so on (Richards,
1977:123–124).

By the early 19th century, prescientific ideas about illness had begun to erode
as the idea grew—especially among cultural elites—that scientific principles con-
trolled the natural order. According to the new scientific thinking, illness occurred
when biological forces combined with personal susceptibility. Lacking a concept
of germs, doctors argued that illness occurred when persons whose constitutions
were naturally weak or had been weakened by unhealthy behaviors came into
contact with dangerous miasma, or air “corrupted” by foul odors and fumes. As
a result, these new theories blamed illness on unhealthy behavior rather than on
immoral behavior.

As the history of cholera shows, however, these new ideas still allowed the
healthy to blame the ill for their illnesses. Cholera first appeared in the Western
world around 1830, killing its victims suddenly and horrifyingly through
overwhelming dehydration brought on by uncontrollable diarrhea and vomiting.
Cholera is caused by waterborne bacteria generally transmitted when human
wastes contaminate food or drinking water. It most often strikes poor persons
because they are the most likely to lack clean water and to be weakened by
insufficient food, clothing, or shelter.

To explain why cholera had struck and why it struck the poor especially hard,
early 19th-century doctors asserted that cholera could attack only individuals who
had weakened their bodies through improper living (Johnson, 2007; Risse, 1988).
According to this theory, the poor caused their own illnesses, first by lacking the

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98 C H A P T E R 5

initiative required to escape poverty and then by choosing to eat an unhealthy
diet, live in dirty conditions, or drink too much alcohol. Thus, for example, the
New York City medical council concluded in 1832 that “the disease in the city is
confined to the imprudent, the intemperate, and to those who injure themselves
by taking improper medicines” (Risse, 1988:45). Conversely, doctors (and their
wealthy patrons) assumed that wealthy persons would become ill only through
gluttony, greed, or by “innocently” inhaling particularly noxious air. This theory
of illness allowed the upper classes to adopt the new scientific explanations for
illness while retaining older moralistic assumptions about ill people and avoid-
ing any responsibility to aid the poor or the ill. In sum, instead of believing that
immorality directly caused illness, people now believed that immorality left one
susceptible to illness.

Despite the tremendous growth in medical knowledge about illness during
the past 200 years, popular explanations for illness have remained remarkably sta-
ble. Many religious authorities continue to blame illness on sin, and many secular
and medical authorities continue to blame illness on poorly chosen (it not nec-
essarily sinful) behaviors and attitudes (Brandt and Rozin, 1997). Parents still act
as if colds are caused by playing in the rain rather than exposure to viruses, and
public health authorities more often focus on urging people to exercise than on
addressing the conditions (such as dangerous neighborhoods, lack of gyms, or the
need to hold down two jobs) that keep people from exercising. Similarly, in her
hugely popular book The Secret, author Rhonda Byrne argues that individuals
“attract” health, wealth, sickness, or poverty to themselves simply by thinking about
these conditions (Byrne, 2006:130–132). In sum, theories of illness that focus on
individual responsibility continue to reinforce existing social arrangements and
help us justify our tendency to reject, mistreat, or simply ignore those who are ill.

MODELS OF ILLNESS

But what do we mean when we say something is an illness? The answer is far
from obvious. Most Americans are fairly confident that someone who has a cold
or cancer is ill. But what about women whose bones have become brittle with
age, men who have bald spots, or young boys who have trouble learning, drink
excessively, or enjoy fighting? Depending on whom you ask, these conditions and
actions may be defined as normal human variations, illnesses, bad character, or bad
behavior. As this suggests, defining illness is not a simple task. In this section, we
explore how doctors and sociologists approach these issues.

The Medical and Sociological Models of Illness

The medical model of illness refers to what doctors typically mean when they
say something is an illness. This medical model is not accepted in its entirety by
all physicians, but it is the dominant conception of illness in the medical world. In
contrast, the sociological model of illness offers a strikingly different way of

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99T H E S O C I A L M E A N I N G S O F I L L N E S S

thinking about what illness means in practice (rather than ideally). This model is
most often adopted by sociologists who take a critical approach, and is also some-
times adopted by health care workers who share sociologists’ concerns about how
social forces affect health and health care. “Key Concepts: Medical and Sociologi-
cal Models of Illness,” compares these two models using female sexual dysfunction
(FSD), a recently developed and still contentious diagnosis, as an example.

The medical model of illness begins with the assumption that illness is an
objective label given to anything that deviates from normal biological functioning
(Mishler, 1981). If asked, most doctors would explain that polio is caused by a virus
that disrupts the normal functioning of the neurological system; that menopause
is a “hormone deficiency disease” that, among other things, impairs the body’s
normal ability to regenerate bone; and that men develop urinary problems when

Medical and Sociological Models of Illness

Medical Model Sociological Model

Illness is an objective label: All
educated people agree on what is
normal and what is illness.

Illness is a subjective category: Educated
people sometimes disagree on what
should be labeled illness.

Example: Female sexual
dysfunction (FSD) is a biological
disease characterized by lack of
sexual responsiveness.

Example: FSD is a label given to
women who are distressed by their
lack of sexual responsiveness with
their current sexual partner.

Illness is nonmoral: Conditions
and behaviors are labeled illness
scientifically without moral
considerations or consequences.

Illness is a moral category: Conditions and
behaviors are labeled illness when they
are considered bad or abnormal.

Example: Labeling FSD an illness
and labeling individuals as
having FSD are neutral biological
statements that don’t reflect
moral judgments of the condition
or individual.

Example: We label lack of sexual
responsiveness an illness because we
find it disturbing, and we typically
look down on those who have FSD.

Illness is an apolitical label: Politics
have no impact on who or what is
labeled illness.

Illness is a political label: Some groups
have more power than others to decide
what is an illness and who is ill.

Example: FSD was first identified
by doctors through scientific
research.

Example: The concept of FSD was
promoted by pharmaceutical
companies to sell drugs.

Each illness results from a unique
biological cause.

Illness results from a combination of
social and biological causes.

Example: FSD results from a
biochemical imbalance best
treated with a drug.

Example: Women’s sexual problems
often reflect psychological and
interpersonal as well as biological
problems.

KEY CONCEPTS

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100 C H A P T E R 5

their prostates grow excessively large and unnaturally compress the urinary tract.
By extension, the medical model assumes that each illness has specific features that
any doctor can recognize (Mishler, 1981).

In contrast, the sociological model of illness begins with the statement that
illness (as the term is actually used) is a subjective label that reflects personal and
social ideas about what is normal as well as scientific reasoning (Weitz, 1991). So-
ciologists point out that ideas about normality differ widely across both individuals
and social groups. A height of 4 feet 6 inches would be normal for a Pygmy man,
but not for an American man. Drinking three glasses of wine a day is normal for
Italian women but could lead to a diagnosis of alcoholism in American medical
circles. In defining normality, therefore, we need to look not only at individual
bodies but also at the broader social context.

Moreover, even within a given group, “normality” is a range and not an
absolute. The median height of American men, for example, is 5 feet 9 inches,
but someone several inches taller or shorter than that is still considered normal.
Yet medical authorities routinely decide what is normal and what is illness based
not on objective markers of health and illness, but on arbitrary, statistical cutoff
points—deciding, for example, that anyone in the 4th percentile for height
or the 50th percentile for cholesterol level is ill (Cohen and Cosgrove, 2009;
Hadler, 2008).

Similarly, as sociologists note, the process of assigning diagnoses to individuals
is far from objective. For example, African American patients with chest pain
often receive diagnoses of indigestion, whereas white patients more often receive
diagnoses of heart disease. Meanwhile, French doctors often attribute patients’
headaches to liver problems, whereas U.S. doctors more often attribute them to
neurological causes (Hoffman and Tarzian, 2001; Nelson, Smedley, and Stith, 2002).

Because the medical model assumes illness is an objective, scientifically
determined category, it also assumes that moral judgments play no role in labeling
conditions or behaviors as illnesses. Sociologists, on the other hand, argue that
illness is inherently a moral category because deciding what is illness always means
deciding what is good or bad. When, for example, doctors label menopause a
“hormonal deficiency disease,” they label it an undesirable deviation from normal.
In contrast, many women consider menopause both normal and desirable, and
they enjoy the freedom from tampons and from fear of pregnancy that menopause
brings. In the same manner, when we define cancer, polio, or diabetes as illnesses,
we judge the bodily changes these conditions produce to be both abnormal and
undesirable rather than simply normal variations in functioning, abilities, and life
expectancies. (Conversely, when we define a condition as healthy, we judge it to
be normal and desirable.)

Similarly, whenever we label someone ill, we suggest there is something un-
desirable about that person. By definition, an ill person is one whose actions,
abilities, or appearance don’t meet social norms—that is, the expectations within
a given culture regarding proper behavior or appearance. Such a person is typically
considered less whole and less socially worthy than those deemed healthy. Illness,
then, like virginity or laziness, is a moral status: a social condition that we believe
indicates the goodness or badness, worthiness or unworthiness, of a person.

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101T H E S O C I A L M E A N I N G S O F I L L N E S S

From a sociological standpoint, illness is not only a moral status (such as crime
or sin) but also a form of deviance (Parsons, 1951). To sociologists, labeling some-
thing deviant does not necessarily mean that it’s immoral. Rather, deviance refers to
behaviors or conditions that socially powerful persons within a given culture per-
ceive, whether accurately or inaccurately, to be immoral or to violate social norms.
We can tell whether behavior violates norms (and therefore whether it’s deviant)
by seeing if it results in negative social sanctions. This term refers to any pun-
ishment from ridicule to execution. (Conversely, positive social sanctions are
rewards that range from token gifts to knighthood.) These social sanctions can
be enforced by parents, police, teachers, and peers, as well as doctors. Later in this
chapter, we’ll look at some of the negative social sanctions imposed against ill
persons.

For the same reasons that the medical model doesn’t recognize the moral
aspects of illness labeling, it doesn’t recognize the political aspects of that process.
Although doctors sometimes participate actively in these political processes—
arguing, for example, that insurance companies should cover treatment for newly
labeled conditions such as fibromyalgia—few doctors recognize how politics un-
derlie the illness-labeling process in general. In contrast, sociologists point out that
any time a condition or behavior is labeled an illness, some groups will benefit
more than others, and some groups will have more power than others to enforce
the definitions that benefit them. As a result, open political struggles often emerge
around illness definitions (a topic we’ll return to later in this chapter). For exam-
ple, U.S. vermiculite miners who were constantly exposed to asbestos dust in their
work and who now have strikingly high rates of cancer have fought with insur-
ance companies and doctors in clinics, hospitals, and the courts to have “asbes-
tosis” labeled an illness. Meanwhile, the mining companies and the doctors they
employ have argued that no such disease exists and that the high rates of cancer in
mining communities are mere coincidences (Schneider and McCumber, 2004).

Finally, the medical model of illness assumes that each illness has not only
unique symptoms but also a unique biological cause (Mishler, 1981). Modern
medicine assumes, for example, that tuberculosis, polio, and other infectious dis-
eases are each caused by a unique microorganism. Similarly, doctors continue to
seek limited and unique causes of heart disease and cancer, such as high-cholesterol
diets and exposure to toxins. Yet even though illness-causing microorganisms exist
everywhere and environmental health dangers are common, relatively few people
become ill as a result. By the same token, although cholesterol levels and heart
disease are strongly correlated among middle-aged men, many men eat high-cho-
lesterol diets without developing heart disease, and others eat low-cholesterol diets
but die of heart disease anyway. Belief in unique biological causes discourages
medical researchers from asking why individuals respond in such different ways to
the same health risks and encourages researchers to search for magic bullets—a
term used by Paul Ehrlich, discoverer of the first effective treatment for syphilis,
to refer to drugs that almost miraculously prevent or cure illness by attacking one
specific etiological factor.

In sum, to sociologists who work from a critical perspective, illness is a
social construction, something that exists in the world not as an objective

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102 C H A P T E R 5

condition, but because we have defined it as existing. This doesn’t mean that the virus
causing measles does not exist or that it doesn’t cause a fever and rash. It does
mean, though, that when we talk about measles as an illness, we have organized
our ideas about that virus, fever, and rash in only one of the many possible ways.
In another place or time, people might conceptualize those same conditions as
manifestations of witchcraft, as a healthy response to the presence of microbes,
or as some other illness altogether. To sociologists, then, illness, like crime or sin,
refers to biological, psychological, or social conditions subjectively defined as
undesirable by those within a given culture who have the power to enforce such
definitions.

MEDICINE AS SOCIAL CONTROL

In everyday life, we use the word medicine to refer to the drugs that doctors pre-
scribe. But we can also use the word medicine to refer to the world and culture
of doctors. For example, we might say that modern medicine is an exceedingly
complex enterprise or that modern medicine primarily focuses on treating disease
rather than on looking for environmental causes of illness. Even more broadly,
sociologists refer to medicine as an institution. Sociologists use the term institu-
tion to refer to enduring social structures that meet basic human needs such as
the religion and education. When we talk of medicine as an institution, we refer
to the world and culture of doctors as well as to the economic, social, and political
underpinnings of that world. We might, for example, talk about how the power of
medicine as an institution—doctors, hospitals, the medical way of thinking about
the world, and so on—has grown over the past century. In addition, sociologists
increasingly talk about biomedicine as an institution. Biomedicine refers to the
ways in the which medicine, science, and technology often now work together
as one social institution—an institution that can increase or reduce the power of
medicine as an institution (Clarke et al., 2003, 2010). (For simplicity’s sake, we will
primarily use the term medicine in this book.)

One central concept in the sociology of health and illness is the idea that
medicine is, among other things, an institution of social control. Social control
refers to the formal and informal methods used by a social group to ensure that
individuals conform to social norms and to protect the existing balance of power
among groups. When we say that medicine is an institution of social control, we
are saying that medicine is a basic structure of our society that sometimes serves
to “keep people in line.” For example, doctors have the power to decide whether
someone is truly ill and deserves sympathy or is simply lazy and should be shunned.
In such a situation, doctors act as social control agents: individuals or groups
(such as parents and religious leaders) that enforce social norms. “Contemporary
Issues: Citizenship and Biomedicine,” p. 103, explores the powerful rule that the
institution of biomedicine now plays in deciding who can become a U.S. citizen.

In the next sections, we will see how doctors—as agents of social control—
both decide which conditions or behaviors should be labeled illness and press sick
people to get well and return to normal social roles.

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103T H E S O C I A L M E A N I N G S O F I L L N E S S

Creating Illness: Medicalization

The process through which a condition or behavior becomes defined as a
medical problem requiring a medical solution is known as medicalization
(Busfield, 2017; Conrad, 2007). For example, during the 19th century, most
Americans considered chronic drunkenness to be a sin, but by the mid-20th
century many instead considered it a form of mental illness. Similarly, over the
last few decades various natural conditions and processes such as uncircum-
cised penises, male balding, aging, loss of sexual desire, and pregnancy have all
increasingly come to be seen as medical problems (Armstrong, 2000; Conrad,
2007; Hartley, 2006; Rosenfeld and Faircloth, 2005). The term medicalization
also refers to the process through which the definition of an illness is broadened.
For example, when doctors expanded the definition of osteoporosis to include
anyone with low bone density rather than only individuals who had experi-
enced unusual bone fractures, the number of persons diagnosed with osteopo-
rosis almost doubled (Grob and Horwitz, 2009).

For medicalization to occur, one or more organized social groups must
have both a vested interest in medicalization and sufficient power to convince
others (including doctors, the public, and insurance companies) to accept their
new definition of the situation. It’s not surprising that doctors often promote
medicalization, given that it can increase their power, the scope of their practices,
and their incomes. For example, during the first half of the 20th century,

CONTEMPORARY ISSUES

Citizenship and Biomedicine

Becoming a U.S. citizen is a long and difficult process. Each year, however, the
United States allows some refugees and immigrants to bypass the usual procedures
if they are the spouse, parent, or young child of a U.S. citizen. Increasingly, however,
the federal government has mandated that individuals must first prove their
family relationship through expensive genetic testing (Dove, 2013; Lakhani and
Timmermans, 2014).

The government, of course, has both a need and an obligation to prevent
immigration fraud. At the same time, relying on DNA testing leads to a different
set of problems (Dove, 2013; Lakhani and Timmermans, 2014). Most basically, it
enshrines biomedical information as uniquely accurate and meaningful: more
important than legal documents, a parent’s sworn statement, or a child’s obvious
desire to be reunited with the adults he or she loves. Similarly, it implicitly declares
that we are all defined by our genes. In addition, it defines family in narrow
terms, omitting stepchildren and adopted children. Yet in many other cultures, it
is common for adults to informally adopt nieces, nephews, cousins, or others when
parents die or are unable to care for them. This is especially true in the war-torn
areas where most current refugees were born. Relying on genetic testing also has
the effect of denying legitimacy to polygamous families in which all wives may
consider all children born into the family to be their own. Finally, mandated genetic
testing can rip apart—rather than unite—families when it reveals that a child is not
genetically related to a man long assumed to be his or her father.

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104 C H A P T E R 5

improvements in the standard of living coupled with various public health
measures substantially reduced the number of seriously ill children. As a result,
the market for pediatricians declined, and their focus shifted from serious illnesses
to minor childhood illnesses and well-baby care. Pediatrics thus became less well
paid, interesting, and prestigious. To increase their market while obtaining more
satisfying and prestigious work, some pediatricians have expanded their practices
to include children whose behavior concerns their parents or teachers and who are
now defined as having attention-deficit hyperactivity disorder (ADHD) (Conrad,
2007). Doctors have played similar roles in medicalizing crooked noses, obesity,
drinking during pregnancy, impotence, and numerous other conditions (Grob and
Horwitz, 2009; Loe, 2004).

In other instances, however, doctors have actively opposed medicalization
(Swoboda, 2008). By definition, this is the case with any contested illness: dis-
tressing and painful symptoms that affected individuals believe constitute an illness
even though many doctors disagree. For example, fibromyalgia is characterized
by many common symptoms, including pain, dizziness, insomnia, and headache.
Moreover, no blood test or x-ray can identify an individual as having fibromyalgia.
As a result, many doctors question whether it really is a disease. The same is true
for chronic fatigue syndrome and multiple chemical sensitivity, among others. In
these cases, consumers often press for medicalization to get validation for their
experiences, stimulate research on treatments and cures, and get health and dis-
ability insurance coverage for their problems (Barker, 2005, 2008; Conrad, 2007).
The rise of the Internet has made it much easier for such consumers to find each
other, reaffirm each other’s sense that they suffer from a real illness, and lobby for
medicalization.

Managed care organizations (MCOs) also play a major role in battles
over medicalization. MCOs (discussed in detail in Chapter 8) are health insurance
providers that restrain costs (and ideally improve quality of care) by monitor-
ing closely the health services given to patients. MCOs either support or oppose
medicalization, depending on which tactic best protects their interests (Conrad,
2007). For example, in the past, MCOs typically rejected requests for gastric-
bypass surgeries to help obese patients lose weight, implicitly arguing that obe-
sity was a personal rather than a medical issue. More recently, MCOs have
started approving these surgeries in hopes of reducing their long-term costs for
obesity-related disease.

The final major force behind medicalization is the pharmaceutical industry
(Conrad, 2007). The industry has a vested economic interest in medicalization when-
ever it can sell a drug as a treatment (Cohen and Cosgrove, 2009; Conrad, 2007;
Rothman and Rothman, 2003). For example, in 1985, pharmaceutical company
Genentech patented a genetically engineered human growth hormone designed to
increase height in children with pituitary gland defects. Such defects, however, are
rare. To expand the market for its drug, Genentech sponsored in-school screening
programs that identified the shortest 3% of students and then informed the students’
parents that the students might benefit from hormone treatment. That treatment,
however, carried significant side effects and only increased height in children with
pituitary defects.

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105T H E S O C I A L M E A N I N G S O F I L L N E S S

Case Study: Working Together to Medicalize ADHD Successful medicaliza-
tion often depends on the interwoven interests and activities of multiple interest
groups. The history of ADHD illustrates this process.

Scientists have yet to discover any biological markers (such as viruses or genes)
for ADHD (Furman, 2009). As a result, individuals are diagnosed as having ADHD
or not based solely on doctors’ assessment of whether the individual is too active,
impulsive, or distractible (Conrad, 2007).

The diagnosis only became popular in the 1960s, following a massive adver-
tising campaign for Ritalin (methylphenidate). That campaign aimed to convince
both doctors and the public that ADHD was a real disease and that Ritalin was a
safe treatment. Ritalin is indeed safer than other amphetamines and can improve
individuals’ concentration, impulse control, and discipline in the short term. But
it may cause addiction, loss of appetite, sleep deprivation, headache, stomachache,
and cancer (Davis, 2007; Vastag, 2001), and it does not improve individuals’ chances
of graduating high school, holding a job, avoiding drug abuse, or avoiding trouble
with the law (Diller, 1998).

Despite these problems, pediatricians proved a ready audience for this
marketing campaign, which promised a way to boost their flagging income and
prestige. Teachers, too, began recommending that certain students get tested
(and treated) for ADHD, in part because the drugs could make students more
manageable, and the diagnosis could shift blame for student problems away from
the teachers themselves (Diller, 1998).

More recently, those recommendations have turned into near requirements.
Over the last 20 years, teachers and schools have faced dramatically increased
pressure to maintain or increase their students’ scores on standardized tests. One
easy way to do so is to increase the number of students who receive Ritalin or
similar drugs. As a result, teachers may press parents to get their children diagnosed
and dosed. This is especially true in affluent districts where parents can afford to
send their children elsewhere and schools must compete for good students (King
et al., 2014). Similarly, parents may seek to have their child diagnosed in hopes that
the drugs will improve their children’s grades. In addition, an ADHD diagnosis
gives children the benefits federally guaranteed to any children with disabilities,
including special educational services and protection against suspension for
disciplinary problems related to ADHD (Conrad, 2007).

Around 10% of U.S. schoolchildren—and almost 20% of high school boys—
have been diagnosed with ADHD (Schwarz and Cohen, 2013). In addition,
diagnoses have spiked among toddlers, even though official definitions of ADHD
limit it to children age four and older (Schwarz, 2014).

Unintended Consequences of Medicalization In some circumstances, med-
icalization can be a boon, leading to social awareness of a problem, sympathy to-
ward those diagnosed with an illness, and the development of helpful treatments.
Persons with epilepsy, for example, lead far happier and more productive lives now
that their seizures are treated with drugs rather than treated as signs of demonic
possession. But defining a condition as an illness does not necessarily improve the
social status of those who have that condition. Those who use alcohol excessively,

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106 C H A P T E R 5

for example, continue to experience social rejection even when alcoholism is
labeled a disease. Moreover, medicalization also can lead to new problems, which
sociologists refer to as unintended negative consequences (Conrad, 2007).

First, once a situation becomes medicalized, doctors become the only experts
considered appropriate for diagnosing the problem and defining appropriate
responses to it. As a result, the power of doctors increases while the power of other
social authorities (including judges, the police, religious leaders, legislators, and
teachers) diminishes. For example, now that troublesome behavior by children is
increasingly diagnosed as ADHD, parents, teachers, and the children themselves
have lost credibility when they disagree with this diagnosis. Similarly, doctors
are now given considerable authority to answer questions such as who should
receive abortions or organ transplants, how society should respond to drug use,
and whether severely disabled infants should receive experimental surgeries, while
the authority of religious leaders and family members to answer these questions
has diminished.

As this suggests, medicalization significantly expands the range of life
experiences under medical control. For example, the natural process of aging is
increasingly regarded as a medical condition. Doctors now scrutinize all aspects
of the aging body and recommend psychological tests to measure mental decline,
hormones to improve virility, cosmetic surgery for wrinkles, and more (Conrad,
2007).

Second, once a condition is medicalized, medical treatment may seem the
only logical response to it. For example, if woman battering is considered a medical
condition, then doctors need to treat women and the men who batter them.
However, if woman battering is considered a social problem stemming from male
power and female subordination, then it makes more sense to arrest the men, assist
the women financially and emotionally, and work for broader structural changes
to improve all women’s status and options.

Third, when doctors define situations in medical terms, they reduce the
chances that these situations will be understood in political terms. For example,
China, Pakistan, and other countries have removed political dissidents from the
public eye by committing them to mental hospitals. By so doing, these govern-
ments discredited and silenced individuals who might otherwise have offered
powerful dissenting voices. In other words, medicalization allowed these govern-
ments to depoliticize the situation: to define it as a medical rather than political
problem.

Fourth, and as the examples of China and Pakistan illustrate, medicalization
can justify involuntary treatment. Yet treatment sometimes harms more than it
helps. For example, since the 1980s, U.S. doctors have legally forced small numbers
of women to submit to cesarean deliveries, in which babies are surgically removed
from their mothers’ uteruses rather than delivered naturally through the vagina
(Paltrow and Flavin, 2013; Roth, 2003). In these cases, doctors argued successfully
that childbirth is a dangerous medical condition rather than a natural process,
that doctors are better qualified than pregnant women to judge fetuses’ needs,
and that fetuses’ right to health is more important than women’s right to control
their own bodies. Yet the rate of cesarean section in the United States is twice that

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107T H E S O C I A L M E A N I N G S O F I L L N E S S

recommended by the World Health Organization, suggesting that doctors are far
too ready to perform this potentially life-threatening surgery. “Ethical Debate:
Medical Social Control and Fetal Rights,” p. 108, explores how the growing ac-
ceptance of the idea of “fetal rights” is affecting the lives of pregnant women.

Medicalization and the “Potentially Ill” In addition to creating new ill-
nesses, medicalization has also led to labeling increasing numbers of individuals as
“potentially ill” (Boyer and Lutfey, 2010; Conrad, 2005; Scott, Wood, and Gray,
2005). The potentially ill are individuals identified as having an above-average
risk of illness, whether because of age, stress level, tobacco use, family history, med-
ical test results, or other factors.

The risks faced by the potentially ill vary substantially. Some learn that they
carry a gene guaranteed to cause a fatal disease. Many more, however, learn that
they have a condition such as high cholesterol that may increase their risk of
illness. The numbers of such individuals continues to increase as corporations de-
velop more tests for risk factors and as doctors (often reimbursed per test) adopt
such tests. Similarly, the ranks of the potentially ill have expanded as pharmaceuti-
cal companies have encouraged both doctors and consumers to expand their ideas
about health risks and to adopt treatments for those risks. For example, pharma-
ceutical companies have worked not only to broaden the definition of osteoporo-
sis but also to create a new category, osteopenia, for those at risk of osteoporosis.
Because osteoporosis refers to the risk of bone fractures caused by low bone density,
osteopenia is essentially the risk of a risk of a health problem.

As this suggests, the health benefits of learning that one is potentially ill depend
on the magnitude of the identified risk and the effectiveness of available treatments
(Scott et al., 2005). Those benefits, however, must also be balanced against the
psychological distress caused when people without any symptoms learn that illness
might strike at any moment (Marteau and Richards, 1996). In addition, some of
these individuals experience the stigma of illness without any of the benefits that
those who have illnesses may receive such as legal protection from discrimination.

The Rise of Demedicalization The problems inherent in medicalization have
fostered a (much smaller) countermovement of demedicalization (Conrad,
2007). A quick look at medical textbooks from the late 1800s reveals many “dis-
eases” that no longer exist. For example, 19th-century medical textbooks often
included several pages on the health risks of masturbation. One popular textbook
from the late 19th century asserted that masturbation caused “extreme emacia-
tion, sallow or blotched skin, sunken eyes, . . . general weakness, dullness, weak
back, stupidity, laziness, . . . wandering and ill-defined pains,” as well as infertility,
impotence, consumption, epilepsy, heart disease, blindness, paralysis, and insanity
(Kellogg, 1880:365). Today, however, medical textbooks describe masturbation as a
healthy part of human sexuality.

Like medicalization, demedicalization often begins with lobbying by consumer
groups. For example, medical ideology now defines childbirth as an inherently
dangerous process, requiring intensive technological, medical assistance. Since the
1940s, however, some American women have attempted to redefine childbirth as a

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108 C H A P T E R 5

generally safe, simple, and natural process and have promoted alternatives ranging
from natural childbirth classes to hospital birthing centers, to home births assisted
only by midwives. Similarly, and as described in Chapter 7, activists have at least
partially succeeded in redefining attraction to members of one’s own sex from a
pathological condition to a normal human variation. More broadly, innumerable
books, magazines, television shows, and popular organizations now exist that focus
on teaching people to care for their own health rather than (or in addition to)
relying on medical care.

Genetic Research and Social Control

The potential for medicine to act as a form of social control continues to grow
as scientists learn more about human genes—and as the public increasingly be-
lieves that genes hold the key to health and illness. The shift toward increasingly
defining genes as the cause of human disease, behavior, and differences is known
as geneticization (Shostak, Conrad, and Horwitz, 2008; Weiner). Geneticization
is a form of medicalization.

Medical Social Control and Fetal Rights

In October 2006, 20-year-old Tiffany Hitson gave birth to a healthy baby girl. The next
day, after traces of marijuana and methamphetamine were found in her baby during
routine testing, Hitson was arrested for “chemically endangering” her child. Hitson
spent most of the next year in state prison.

Tiffany was not alone. Over the last decade, hundreds of pregnant women—
most poor and nonwhite—have faced criminal sanctions or been forced to endure
medical treatments (Eckholm, 2013). These actions reflect a growing tendency among
doctors, lawyers, and the general public to view mother and fetus as separate beings,
with separable and sometimes conflicting rights, and to see the fetus rather than
the mother as obstetricians’ primary patient (Roth, 2003). Given that doctors have an
ethical and legal obligation to protect children from parents who abuse them, should
doctors have a similar obligation to protect fetuses even if it means superseding
mothers’ wishes?

Those who argue in favor of medical intervention find it illogical to protect children
from bodily harm after birth but to deny them protection that might ensure their
health before birth. Children born prematurely, addicted to drugs, or with birth defects
because their mothers did not follow medical advice may lead short, painful lives or may
survive with mental or physical disabilities. In addition, caring for these children costs
hospitals and taxpayers money. Those costs alone, one could argue, give the medical and
legal systems the right to intervene when women endanger their fetuses.

Others, however, have raised several objections to placing fetal rights above
mothers’ wishes. First, critics question whether medical intervention really is necessary.
For example, almost all well-structured research studies on mothers’ drug use during
pregnancy have found that it causes little if any long-term harm to children (Roth,
2003; Singer et al., 2002). Second, drug withdrawal also can endanger fetuses, as can
threats of legal sanctions that discourage pregnant women from seeking health care

ETHICAL DEBATE

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109T H E S O C I A L M E A N I N G S O F I L L N E S S

Genes affect health in two ways: by causing “true” genetic diseases and by
increasing individuals’ predisposition to develop disease. True genetic diseases
such as hemophilia only occur if an individual has a specific gene (Williams and
Sternthal, 2010). Although doctors can’t cure these diseases, genetic testing does
provide affected individuals with the opportunity to learn whether they, their
children, or (for pregnant women) their fetuses carry a disease-causing gene
(Annas and Elias, 2013).

Individuals who learn through testing that they are not at risk certainly benefit
by gaining peace of mind and the ability to plan their futures. Others, though,
learn that they are guaranteed to eventually develop a genetic disease, a prospect
that some find overwhelming (Halpin, 2018; Marteau and Richards, 1996). It is
hard, for example, to imagine how it can help individuals to learn at age 21 that
by their forties they will develop Huntington’s disease, a devastating neurological
disorder that invariably causes progressive insanity, total disability, and death.

Even these individuals, however, may gain some options and benefits. They
can commit to living life to the fullest, make wills, or otherwise plan for their
futures. They also can choose to avoid becoming pregnant, to abort any fetuses

altogether. Third, opponents argue that doctors can’t necessarily make better decisions
than mothers because they can’t understand fully the circumstances in which mothers
make those decisions. For example, many women continue to use drugs during
pregnancy only because they can’t obtain access to treatment programs, which usually
are expensive, have long waiting periods, and won’t accept pregnant women.

Finally, some argue, the concept of fetal rights puts an undue burden on women
(Roth, 2003; Toscano, 2005). Although we require parents to guard their children’s
health and welfare, we don’t require them to donate kidneys, bone marrow, or
even blood for their children’s sake. Why, then, should we require women—and only
women—to protect their fetuses? After all, when fathers drink alcohol, use illicit
drugs, smoke cigarettes, or work in legal or illegal chemical laboratories, both sperm
and fetuses can be harmed, but no man has ever been charged with fetal abuse. This
has led some to conclude that the idea of “fetal” rights is aimed more at controlling
women rather than at protecting children.

Sociological Questions

1. What social views and values about medicine, society, and the body are reflected
in the concept of “fetal rights”? Whose views are these?

2. Which social groups are in conflict over this issue? Whose interests are served by
promoting fetal rights? Whose interests are harmed?

3. Which of these groups has more power to enforce its view? What kinds of power
do they have?

4. What are the intended consequences of this policy? What are the unintended
social, economic, political, and health consequences of this policy?

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110 C H A P T E R 5

that carry the defect, or to continue a pregnancy to term, knowing that the fetus
carries the defect and hoping that this foreknowledge will better prepare them
for the birth of an ill or disabled child. Finally, they can try to have a healthy
child who is biologically theirs by surgically removing the woman’s eggs from her
body, mixing them with the man’s sperm in the laboratory, having a doctor test
the resulting fetuses for genetic defects, and implanting only nondefective fetuses
in the woman’s uterus. This strategy is rare because the physical, financial, and
psychological costs are extremely high, and the odds of success are low.

In most cases, however, instead of directly causing disease, genes merely increase
the probability of disease. In these cases, disease occurs when genes combine with en-
vironmental factors in a process known as an epigenetic effect (Annas and Elias,
2013; Landecker and Panofsky, 2013). For example, stressful conditions can “turn
on” illness-causing genes and weaken the effectiveness of illness-preventing genes,
thus increasing risks of depression, heart disease, and other illnesses (Shanahan,
Bauldry, and Freeman, 2010). This explains why identical twins may not get the
same genetic disease, even though their genes are identical (Roberts et al., 2012).

Genetic testing for this second sort of “genetic” disease can benefit individuals
if it motivates those who test positive to take potentially health-preserving actions.
For example, women who learn they carry the BRCA-1 gene, and thus have an
increased risk of breast cancer, might choose to adopt a low-fat diet or have their
breasts removed prophylactically.

On the other hand, genetic problems can rarely be surgically corrected (Wade,
2010). Moreover, genetic tests can’t tell how soon or how severely an individual
with a particular gene will contract a given disease. Increasingly, too, tests are iden-
tifying genetic anomalies whose effects, if any, are unknown. As a result, individuals
often must make life plans with little knowledge of what their futures (or their
fetuses’ futures) will be like.

At the same time, individuals identified through genetic testing as having or
being at high risk for illness run considerable high risk of discrimination. Although
federal law prohibits discrimination in employment or health insurance based on
genetic test results, it does not forbid discrimination in life insurance, long-term care
insurance, education, or other sectors (Zhang, 2017). And, of course, many will face
discrimination even when it is illegal (Council for Responsible Genetics, 2001).

Social Control and the Sick Role

So far, we have looked at how medicine functions as an institution of social control
by defining individuals as sick or defective. Medicine can also work as an institu-
tion of social control by pressuring individuals to abandon sickness, a process first
recognized by Talcott Parsons (1951).

Parsons was one of the first and most influential sociologists to recognize that
illness is deviance. From his perspective, when people are ill, they can’t perform
the social tasks normally expected of them. Workers stay home, homemakers tell
their children to make their own meals, students ask to be excused from exams.
Because of this, either consciously or unconsciously, people can use illness to evade
their social responsibilities. To Parsons, therefore, illness threatened social stability.

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111T H E S O C I A L M E A N I N G S O F I L L N E S S

Parsons also recognized, however, that allowing some illness can increase social
stability. Imagine a world in which no one could ever “call in sick.” Over time,
production levels would fall as individuals succumbed to physical ailments because
they were denied needed recuperation time. Morale, too, would fall while resent-
ment would rise among those forced to perform their social duties day after day
without relief. Illness, then, acts as a kind of pressure valve for society—something
we recognize when we speak of taking time off work for “mental health days.”

From Parsons’s perspective, then, the important question was how did soci-
ety control illness so that it would increase rather than decrease social stability?
His emphasis on social stability reflected his belief in the broad social perspective
known as functionalism. Underlying functionalism is an image of society as a
smoothly working, integrated whole, much like the biological concept of the hu-
man body as a homeostatic environment. In this model, social order is maintained
because individuals learn to accept society’s norms and because society’s needs
and individuals’ needs match closely, making rebellion unnecessary. Within this
model, deviance—including illness—is usually considered dysfunctional because
it threatens to undermine social stability.

Defining the Sick Role Parsons’s interest in how society allows illness while
minimizing its impact led him to develop the concept of the sick role. The term
refers to social expectations regarding how society should view sick people and
how sick people should behave. According to Parsons, the sick role as it currently
exists in Western society has four parts. First, the sick person is considered to have
a legitimate reason for not fulfilling his or her normal social role. For this reason,
we allow people to take time off from work when sick rather than firing them for
malingering. Second, sickness is considered beyond individual control, something
for which the individual is not held responsible. This is why, according to Parsons,
we bring chicken soup to people who have colds rather than jailing them for
stupidly exposing themselves to germs. Third, the sick person must recognize that
sickness is undesirable and work to get well. So, for example, we sympathize with
people who strive to recover from illness and question the motives of those who
seem to revel in the attention illness brings them. Finally, the sick person should
seek and follow medical advice. Typically, we expect sick people to follow their
doctors’ recommendations regarding drugs and surgery, and we question the wis-
dom of those who don’t.

Parsons’s analysis of the sick role moved the study of illness forward by high-
lighting the social dimensions of illness, including identifying illness as deviance
and doctors as agents of social control (Shilling, 2002). It remains important partly
because it was the first truly sociological theory of illness. Parsons’s research also
has proved important because it stimulated later research on interactions between
ill people and others. In turn, however, that research has illuminated the weak-
nesses of the sick role model.

Critiquing the Sick Role Model Much recent sociological writings on illness—
including this textbook—have adopted a conflict perspective rather than a func-
tionalist perspective. Whereas functionalists envision society as a harmonious whole

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112 C H A P T E R 5

held together largely by socialization, mutual consent, and mutual interests, those
who hold a conflict perspective argue that society is held together largely by power
and coercion as dominant groups impose their will on others. Consequently, whereas
functionalists view deviance as a dysfunctional element to be controlled, conflict
theorists view deviance as a necessary force for social change and as the conscious
or unconscious expression of individuals who refuse to conform to an oppressive
society. Conflict theorists, therefore, have stressed the need to study not only deviants
but also social control agents.

The conflict perspective has helped sociologists identify the strengths and
weaknesses in each of the four elements of the sick role model (see “Key Con-
cepts: Evaluating the Sick Role Model”). That model declares that sick persons are
not held responsible for their illnesses. Yet, as we saw earlier in this chapter, society
often does hold individuals responsible for their illnesses (Freidson, 1970). In addi-
tion, ill persons are not always considered to have a legitimate reason for abstaining
from their normal social tasks. Certainly, no one expects persons with end-stage
cancer to continue working, but what about people with arthritis or those labeled
malingerers because they can’t obtain a diagnosis after months of pain, increasing
disability, and visits to doctors (Glenton, 2003; Ziporyn, 1992)?

Other aspects of the sick role model are equally problematic. The assumption
that individuals will attempt to get well fails to recognize that much illness is
chronic and by definition is not likely to improve. Similarly, the assumption that
sick people will seek and follow medical advice ignores the many people who lack
access to medical care or who can’t afford to take time off from work or purchase
medications when ill. In addition, it ignores the many persons, especially those
with chronic rather than acute conditions, who have found mainstream health
care of limited benefit and who therefore rely mostly on their own experience and
knowledge and that of other nonmedical people. Similarly (and understandably),
it could not anticipate the ways the Internet has enabled lay people—both sick
and well—to seek health information on their own and occasionally challenge or
ignore medical advice as a result (Shilling, 2001). Finally, the concept of a (singular)

Evaluating the Sick Role Model

Elements of the Sick Role Model Fits Well Model Fits Poorly

Legitimate reason for not
fulfilling obligations

Appendicitis, cancer Undiagnosed chronic
fatigue

Individual not held
responsible

Measles, hemophilia Herpes, lung cancer

Individual should strive to
get well

Tuberculosis, broken leg Diabetes, epilepsy

Individual should seek
medical help

Strep throat, syphilis “24-hour flu,” cold

KEY CONCEPTS

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113T H E S O C I A L M E A N I N G S O F I L L N E S S

sick role ignores how sex, ethnicity, age, and social class affect the response to
illness and to ill people (Flurey et al., 2018). For example, women are both more
likely than men are to seek medical care when they feel ill and less likely to
have their symptoms taken seriously by doctors (Council on Ethical and Judicial
Affairs, 1991; Thompson et al., 2016).

In sum, the sick role model is based on a series of assumptions about both the
nature of society and the nature of illness. In addition, the sick role model con-
fuses the experience of patienthood with the experience of illness (Conrad, 1987).
The sick role model focuses on the interaction between the ill person and the
mainstream health care system. Yet interactions with the medical world form only
a small part of the experience of living with illness or disability, as the next chapter
shows. For these among other reasons, research using Parsons’s conception of the
sick role has declined over time.

IMPLICATIONS

The language of illness and disease permeates our everyday lives. We routinely talk
about living in a “sick” society or about the “disease” of violence infecting our world.

This metaphoric use of language reveals the true nature of illness: behaviors, con-
ditions, or situations that powerful groups find disturbing and believe stem from in-
ternal biological or psychological roots. In other times or places, the same behaviors,
conditions, or situations might have been ignored, condemned as sins, or prosecuted
as crimes. In other words, illness is both a social construction and a moral status.

In many instances, using the language of medicine and placing control in the
hands of doctors offers a more humanistic option than the alternatives. Yet, as this
chapter has demonstrated, medical social control also carries a price. The same sur-
gical skills and technology for cesarean sections that have saved the lives of so many
women and children now endanger the lives of those who have cesarean sections
unnecessarily. At the same time, forcing cesarean sections on women potentially
threatens women’s legal and social status. Similarly, the development of tools for
genetic testing has saved many individuals from the anguish of rearing children
doomed to die young and painfully but has cost others their jobs or health insurance.

In the same way that automobiles have increased our personal mobility in
exchange for higher rates of accidental death and disability, adopting the language
of illness and increasing medical social control bring both benefits and costs. These
benefits and costs will need to be weighed carefully as medicine’s technological
abilities grow.

SUMMARY

1. Topics in the sociology of health, illness, and health care include the nature
of the health care system, how social forces promote health and illness, the
experience of living with illness or disability, and the status, power, training,
and values of health care providers.

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114 C H A P T E R 5

2. Throughout history, explanations for illness have commonly blamed ill
persons for their illnesses. Such explanations encourage policy makers to
ignore how social and environmental factors can foster illness.

3. Illness is a social construction—not something that simply exists in the
world as an objective condition, but something that exists because we have
defined it as existing. To sociologists, the term illness refers to biological,
psychological, or social conditions that are subjectively defined as
undesirable by those who have the power to enforce their definitions.

4. Illness is a moral status and a form of deviance. We label individuals ill when
they don’t meet our social norms for behavior, ability, or appearance.

5. The medical model of illness assumes that illness is an objective label, applied
scientifically, without moral judgment or political bias. That model also
assumes that each illness is caused by unique biological forces.

6. The sociological model of illness regards illness as a social construction,
a moral category, and a political label, and emphasizes that what is labeled
illness changes over time and space.

7. Medicine is an institution of social control. The institution of medicine acts
as social control whenever it defines behaviors and conditions as deviant and
pressures individuals to seek health care and strive to get well.

8. The process through which a condition or behavior becomes defined
as an illness requiring a medical solution is known as medicalization; the
reverse process is known as demedicalization. Four groups that often play
prominent roles in fights over medicalization are doctors, consumers, the
pharmaceutical industry, and managed care organizations.

9. Medicalization can reduce stigma, increase social awareness, and encourage
medical research. It can also cause unintended negative consequences, such
as increasing the power of doctors at the expense of other social groups,
depoliticizing dissent, and justifying medical—and only medical—treatment.

10. Contested illnesses are combinations of distressing and painful symptoms
that affected individuals believe constitute an illness even though many
doctors disagree. Examples include fibromyalgia and multiple chemical
sensitivity.

11. Genetic research and testing have increased the potential for medicine to
act as a form of social control, especially because of geneticization: the shift
toward assuming that genes cause human disease, behavior, and differences.
Genetic testing brings both benefits and problems to individuals and society.

12. The “potentially ill” are individuals identified as having an above-average
risk of illness, whether because of age, stress level, tobacco use, family history,
medical test results, or other factors.

13. The sick role model refers to social expectations regarding how society
should view sick people and how sick people should behave. The sick
role has four parts. First, sickness is considered beyond individual control.
Second, sick persons are considered to have legitimate reasons for not

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115T H E S O C I A L M E A N I N G S O F I L L N E S S

fulfilling their normal social roles. Third, sick persons are expected to
recognize that sickness is undesirable and are therefore expected to work
to get well. Finally, the sick role assumes that sick persons should seek and
follow medical advice.

14. Critics of the sick role model challenge each of the four parts of that model.
They note that the model best fits acute rather than chronic illness, and they
suggest that the model confuses the experience of being a patient with the
much broader experience of illness.

REVIEW QUESTIONS

1. What does it mean to say that illness is a social construction and a moral status?

2. How have explanations for illness changed over time, and how have
explanations for illness blamed ill people for their illnesses?

3. What is the medical model of illness, and what are some of the problems
with that model?

4. What is medicalization, why does it occur, and what are some of its
consequences?

5. Who are the potentially ill? What are the consequences of being labeled
potentially ill?

6. How can genetic research and testing lead to social control? What is
geneticization?

7. What is the sick role model, and what are some of the problems with that
model?

CRITICAL THINKING QUESTIONS

1. Do the four characteristics of the “sick role” apply to persons who have
high cholesterol but no known evidence of heart disease? Do they apply to
persons who learn that they have a gene that carries with it a high chance of
developing breast cancer? Explain your answers.

2. Psychiatrists apply the diagnosis of premenstrual dysphoric distress syndrome
to women who each month experience depression and anger before
menstruating. How might women benefit from psychiatry’s decision to label
this condition a disease? How might women be harmed by it?

3. Researchers have identified a gene that, if present, indicates that a person has
a significant risk of developing Alzheimer’s disease at a young age. Alzheimer’s
disease causes people to gradually lose their memory and mental abilities.
Imagine that you are a family practice doctor. To a concerned patient provide
two arguments for and two arguments against getting tested for the gene.

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116

C H A P T E R

2

The Experience of

Disability, Chronic Pain,

and Chronic Illness

6

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117T H E E X P E R I E N C E O F D I S A B I L I T Y, C H R O N I C PA I N , A N D C H R O N I C I L L N E S S

LEARNING OBJECTIVES

After reading this chapter, students should be able to:

● Critique the medical and sociological models of disability.
● Describe the nature and distribution of disability and chronic pain.
● Understand how individuals who experience disability, pain, or illness

respond to their diagnoses.
● Analyze how individuals who experience disability, pain, or illness manage

their health care.
● Describe how individuals who experience disability, pain, or illness manage

or fight against stigma.

Shortly before entering seventh grade, Andrea Avery learned that the intermittent
pain, stiffness, and weakness she had been experiencing was caused by rheumatoid
arthritis. In her recent memoir, she writes:

My mom and I had talked about how I should handle the unpredictable arthritis
in my first year with it. My mother had sent letters to the school telling them
that I would be the one to indicate when I could or couldn’t do something.

It didn’t work out that way:

“You’ll change for PE every day, Ms. Babuska said [to the class], and having
your period or cramps is no excuse. . . . The only way you’ll be excused from
participation is if you have a valid medical excuse, like Andrea.” There it was:
the orchestra-hit sound effect, all violins, I have always heard deep inside my
ears when I experience mortification. She turns to me. “It’s a shame your body is
falling apart at such a young age,” she said.

My eyes stung and my throat closed and my stomach roiled and I had always
been proud of never crying or throwing up in school and I wasn’t sure which one
was about to happen, so I stood up and crossed the gym and lurched out of the
room. I didn’t cry and I didn’t vomit. Worse: I was silent. (Avery, 2017:44)

Some years later, Andrea found herself sitting with a girlfriend at a bar with her
legs—now permanently bent at right angles by arthritis—hidden by the tablecloth

Two boys in jean jackets approached us. The one with the pompadour and the
tiny, angry rock-and-roll pins on his lapel seemed to like me. I got up to go to the
bathroom, unfolding my rigid bent legs from under the table. “Wait, [he said].
Why are you walking like a gimp? Are you a gimp? . . .” I replied, “Why are
you acting like an asshole,” Are you an asshole?” (Avery, 2017:161, 178)

Andrea’s story illustrates the social as well as medical struggles faced by indi-
viduals who live with chronic illness, pain, and disability. In this chapter, we begin

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118 C H A P T E R 6

by exploring the meaning, history, and distribution of disability. Then we discuss
chronic pain, which falls on the border between disability and illness. Finally, we
look broadly at the experience of chronic illness, pain, and disability, including the
search for an accurate diagnosis, for treatments that preserve one’s quality of life,
and for a coherent and positive sense of self.

UNDERSTANDING DISABILITY

Defining Disability

As explained in Chapter 5, the meaning of the term illness is far from obvious.
The same is true for the term disability. Typically, when people think about dis-
ability, they think of it as something wrong—a deficit—within an individual mind
or body that should be cured if possible. This way of thinking about disability is
referred to as the medical model of disability because it is common (although
not universal) among doctors.

At first glance, the medical model of disability seems perfectly reasonable.
After all, isn’t a disability something that an individual has, a defect in his or her
body? According to many people with disabilities, the answer is no. Instead, they
argue, their disabilities primarily stem not from their physical differences but from
the way others respond to those differences and from the choices others have
made in constructing the social and physical environment. For example, a man
whose energy waxes and wanes unpredictably during the day might be able to
work 40 hours per week on a flexible schedule but not within a rigid 9-to-5
schedule. Similarly, a woman who uses a wheelchair might find it impossible to
work in an office where furniture fits only persons who walk and are of average
height, but she might have no problems in an office with more adaptable furniture.
Disability activists argue that this is not a matter of providing special benefits for
people with disabilities but a matter of compensating for the unacknowledged
benefits that existing arrangements offer those who walk, such as chairs to sit in,
stools for reaching high shelves, and carpeted floors that make walking easier but
wheeling more difficult.

This approach reflects a sociological model of disability in its emphasis
on social forces and public issues rather than on individual physical variations and
troubles. In the rest of this chapter, the term disability refers to restrictions or lack
of ability to perform activities resulting largely or solely from either (1) social re-
sponses to bodies that fail to meet social expectations or (2) assumptions about the
body reflected in the social or physical environment.

These two models of disability—the medical model and the more sociolog-
ical model used by disability activists—have strikingly different implications. As
Paul Higgins (1992:31) notes,

To individualize disability [as the medical model does] is to preserve
our present practices and policies that produce disability. If disability is
an internal flaw to be borne by those “afflicted,” then we don’t question

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119T H E E X P E R I E N C E O F D I S A B I L I T Y, C H R O N I C PA I N , A N D C H R O N I C I L L N E S S

much the world we make for ourselves. Our actions that produce
disability go unchallenged because they are not even noticed.

Individualizing disability therefore exemplifies the broader process of
blaming the victim, through which individuals (such as people with disabilities)
are blamed for causing the problems they experience. In contrast, the sociological
model of disability challenges us to look at disability from a decidedly different
perspective. If we conclude that the problem resides primarily in social attitudes
and the built environment, then we can solve the problem most efficiently by
changing attitudes and environments rather than by “rehabilitating” people with
disabilities.

People with Disabilities as a Minority Group

When we start thinking of disability as primarily a result of social attitudes and
built environments rather than of individual deficiencies, strong parallels emerge
between people with disabilities and members of minority groups. The term
minority group refers to any group that is considered inferior and subjected to dif-
ferential and unequal treatment and therefore defines itself as a group with a shared
experience of discrimination.

Few would argue with the assertion that we divide disabled and nondisabled
people from each other based on physical characteristics. But can we also argue, as
the definition of a minority group requires, that people with disabilities are con-
sidered inferior and are subject to differential and unequal treatment?

Unfortunately, yes. Even a cursory look reveals widespread prejudice and dis-
crimination against people with disabilities. Prejudice refers to unwarranted sus-
picion, dislike of, or disdain toward individuals because they belong to a particular
group, whether defined by ethnicity, religion, or some other characteristic. Preju-
dice toward people with disabilities is obvious: Throughout history, most societies
have defined those who are disabled as physically or even morally inferior and
have considered disabilities a sign that either the individual or his or her parents
behaved sinfully or foolishly (Albrecht, 1992).

Prejudice typically expresses itself through stereotypes, or overly simplistic
ideas about members of a given group. Nondisabled people typically stereotype
disabled people as bitter, menacing, and unattractive or as asexual, dependent,
mentally incompetent, and pitiable (Basnett, 2001; Ryan et al., 2005; Nario-
Redmond, 2010). Ironically, because medical training especially values quick,
technological cures, doctors may be especially likely to develop negative attitudes
toward people who live with long-standing disabilities (Basnett, 2001). (Medical
culture is discussed more fully in Chapter 11.)

Stereotypes about people with disabilities are reflected and reinforced in
the popular media (Chivers and Markotic, 2005). In book and film characters
from Captain Hook in Peter Pan to Freddie Krueger in Nightmare on Elm Street,
the media have equated physical deformity with moral deformity. The media
also often portray disabilities as pitiful and thus something to be avoided at all
costs (as when Jake in the film Avatar chooses to leave his entire life and uni-
verse behind for the chance to walk again, even if in an alien body). Although

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120 C H A P T E R 6

contemporary media sometimes do present more positive images such as stories
about people with disabilities who have “heroically” compensated for their phys-
ical disabilities, who have chosen to live “saintly” lives, or whose innocence can
help the rest of us learn to live better lives (as in Riding the Bus with My Sister, for
instance), these stories also typically ignore the social nature of disabilities and
instead offer simplistic stories about individual character. Exceptions to these
rules—films such as The Fault in Our Stars and television shows such as Glee and
Game of Thrones—remain rare, although they have become far more common in
recent years.

All too often, prejudice against persons with disabilities results in discrimina-
tion: unequal treatment grounded in prejudice. As recently as the first decades of
the twentieth century, American laws forbade those with epilepsy, leprosy, Down
syndrome, and other conditions from marrying and mandated their institutional-
ization or sterilization (Nielsen, 2012; Trent, 2005). Discrimination continues into
the present day. In a national survey conducted in 2010, almost half of people with
disabilities reported encountering job discrimination, most often in the form of
lower pay for the same work or being considered ineligible for a job because of
their disability (Harris Interactive, 2010).

To fit the definition of a minority group, however, members of a group not
only must experience prejudice and discrimination but also must believe that they
belong to a group that shares a common experience. In fact, 79% of people with
disabilities report feeling a sense of community with other such individuals (Harris
Interactive, 2010).

In the United States, laws now offer at least some protection against discrim-
ination for people with disabilities. Currently, the federal Education for All Hand-
icapped Children Act requires school districts to educate all children regardless of
disability in the least restrictive environment feasible. In addition, the Americans
with Disabilities Act (ADA) outlaws discrimination and requires accessibility
in employment, public services, and public accommodations (including restau-
rants, hotels, and stores). Still, disabled persons are much more likely than others to
live in poverty, to lack employment, and to face barriers to receiving quality health
care (Gostin, 2015).

The Social Distribution of Disability

According to U.S. government researchers, some 15% of noninstitutionalized per-
sons living in the United States have a disability (National Center for Health
Statistics, 2017a). These researchers define disability as a chronic health condition
that makes it difficult for individuals to perform activities considered appropriate
for persons of a given age—play and study for children, work for adults, or basic
activities such as shopping and dressing for elderly adults.

The proportion of the U.S. population living with disabilities has grown sig-
nificantly over time. A few decades ago, most people with paraplegia, babies born
prematurely, persons with serious head injuries, and soldiers with major wounds
died quickly. Now most live, although often with serious disabilities. For example,

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121T H E E X P E R I E N C E O F D I S A B I L I T Y, C H R O N I C PA I N , A N D C H R O N I C I L L N E S S

because of advances in body armor and medical care, far fewer U.S. soldiers have
died of wounds suffered in Iraq and Afghanistan than in previous wars, but far
more have survived with brain damage and amputated limbs (Glasser, 2005). In
addition, average survival times for various common chronic conditions such as
hypertension and cardiovascular disease have increased, leaving more people living
with disabilities. Finally, as the proportion of the population older than age 65 has
increased—and in the absence of meaningful attempts to remove the social and
physical barriers that can prevent individuals from living independent lives—so
has the proportion living with disabilities.

Table 6.1 shows the distribution of disability across the population measured
by limitations in “basic life activities” such as shopping, dressing oneself, or work-
ing (for those under age 65). Sex also predicts disability, with women significantly
more likely than men to report activity limitations (for reasons discussed in Chap-
ter 3). Income is also directly related to disability: Disability is most common
among the poor and becomes less common as income rises. Finally, ethnicity also
affects rates of disabilities, largely because of its relationship to poverty. According
to official statistics, Asian Americans have the lowest risk, and African Americans
the highest risk. (It is likely that Native Americans are also at high risk, but data
are not available.)

Percentage of Americans with at Least One Basic
Activity Limitations*TABLE 6.1

Ages 18–64 (%) Ages 65 and Older (%)

Total 33 60

Sex

Male 27 52

Female 36 62

Income

Very poor 43 77

Poor 41 69

Middle income 32 60

Upper income 22 44

Ethnicity

White, non-Hispanic 32 57

African-American, non-Hispanic 34 62

Hispanic 24 57

Asian 19 47

*Ability to perform activities needed to maintain an independent life such as shopping, bathing, or
working (for those younger than age 65).

SOURCE: National Center for Health Statistics (2017a)

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122 C H A P T E R 6

UNDERSTANDING CHRONIC PAIN

Chronic pain affects 40% of Americans (Institute of Medicine, 2014). It falls on
the border between disability and chronic illness. As writer Melanie Thernstrom
(2010:5), who herself lives with chronic pain, explains:

Ordinarily, pain is protective—a finely wired system warning the body
of tissue damage or disease and enforcing rest for the bone to knit or
the fever to run its course. This is known as acute pain; when the tissue
heals, the pain disappears. When pain persists long after it has served
its function, however, it transforms into the pathology of chronic pain.
Chronic pain is the fraction of pain that nature can’t heal, that does not
resolve over time, but worsens. It can begin in many ways—as trivial as
a minor injury or as grave as cancer or gangrene. Eventually, the tissue
heals, the diseased limb is amputated, or the cancer goes into remission,
and yet the pain continues and begins to assume a life of its own.

As this suggests, chronic pain is a symptom, not an illness. In some cases, it
can be caused by an injury or illnesses such as arthritis or cancer. In other cases,
no specific cause can be identified; this is especially true for chronic headaches
and back pain, the two most common types of chronic pain. In still other cases,
some doctors will give diagnoses of contested illnesses (such as irritable bowel
syndrome, fibromyalgia, or chronic fatigue syndrome) that other doctors question.

Living with Chronic Pain

Although the causes of chronic pain are often unclear, its consequences are obvi-
ous. In addition to its physical toll (which includes sleep deprivation and exhaus-
tion), chronic pain damages social relationships; increases depression, anxiety, and
the risk of suicide; and costs the nation $600 billion yearly in medical costs and re-
duced productivity (Institute of Medicine, 2014). As Thernstrom (2010:5) writes:

[As] the pain worsens, the body sensitizes, and other parts begin to hurt,
too. She has trouble sleeping; she stumbles through her days. Her sense of
her body as a source of pleasure changes to a sense of it as a source of pain.
She feels haunted, persecuted by an unseen tormentor. Depression sets
in. It feels wrong . . . maddening . . . delusional. She tries to describe her
torment, but others respond with skepticism or contempt. She consults
doctors, to no avail. Her original affliction—whatever it may have been—
has been superseded by the new “disease of pain,” (Ellipses in original).

Treating those who live with chronic pain is notoriously difficult. In addition,
doctors disagree on treatment, and few American doctors are trained in pain man-
agement (Institute of Medicine, 2014). Physical therapy, strength training, medi-
tation, and psychological treatments that help people think differently about their
pain can often help but are underutilized (Foreman, 2014). Marijuana may well be
useful, but little money is available for research on it, and it remains illegal in many
states (and under federal law). Drugs derived from opiates such as OxyContin are
often used and sometimes overused. Ironically, they are also often underused both

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123T H E E X P E R I E N C E O F D I S A B I L I T Y, C H R O N I C PA I N , A N D C H R O N I C I L L N E S S

because doctors share popular American beliefs about opiates and addiction and
because they fear arrest under strict U.S. drug-trafficking laws (Foreman, 2014).

Gender, Ethnicity, Class, and Chronic Pain

Chronic pain is most common among women, those who are poor, minorities,
and the elderly. Unfortunately, obtaining appropriate treatment is especially dif-
ficult for members of all these groups (Hoffman and Tarzian, 2001; Thernstrom,
2010). (Obtaining proper treatment is also difficult for children because doctors
especially fear giving them potentially dangerous medications.)

Women—the majority of those living with chronic pain—are significantly
more likely than men to encounter doctors who ascribe their pain to psychiatric
causes and prescribe sedatives or psychotherapy rather than effective pain medica-
tions (Barker, 2005; Hoffman and Tarzian, 2001; Werner and Malterud, 2003). To
avoid this fate, women with chronic pain must tread a fine line, striving to appear
neither too sick nor too well and neither too assertive nor too passive in order to
receive proper treatment and avoid being labeled hysterical or pushy, malingerers,
or whiners (Thernstrom, 2010). Not surprisingly, women consumers have been
at the forefront of movements to medicalize chronic fatigue syndrome, multiple
chemical sensitivity, fibromyalgia, and other contested illnesses (Barker, 2005).

A different set of stereotypes makes it difficult for persons of color to receive
proper treatment for pain (Chen et al., 2005; Thernstrom, 2010). Numerous studies
have found that doctors routinely dismiss minority patients’ reports of pain on the
assumption that such patients are really seeking drugs for recreational purposes.

The same bias limits poorer persons’ access to pain medication. In addition,
poorer persons’ pain more often stems from their work. In these cases, however,
individuals often have access only to company-employed doctors who have a
vested interest in dismissing or downplaying—and thus undertreating—their pain.

LIVING WITH DISABILITY AND CHRONIC ILLNESS

Living with disability or chronic illness, whether or not it results in chronic pain, is
a long-term process that includes responding to initial symptoms, injuries, or diag-
noses; dealing with one’s evolving situation; seeking and managing health care; and
continually reconceptualizing one’s future. In this section, we examine this process
and explore how illness, pain, and disability affect individuals’ lives, relationships with
others, and sense of self. In addition, we look at how the experience of illness has
in some cases led individuals to start or join social movements based around illness.

Responding to Initial Symptoms

Becoming a chronically ill or disabled person begins with recognizing that some-
thing about the body is troubling. This recognition can be slow to arrive. Health
problems (such as stiffening joints caused by arthritis or gradual vision loss caused
by cataracts) often build gradually, allowing individuals almost unconsciously to
minimize and adapt to these symptoms. In addition, the signs of illness and disability
often don’t differ greatly from normal bodily variations. A child who doesn’t walk

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124 C H A P T E R 6

by 12 months of age might have a disability or might simply be a slow devel-
oper. Similarly, children with epilepsy, for example, can for many years experience
“headaches,” “spaciness,” and “dizzy spells” before they or their parents recognize
these experiences as signs of epilepsy.

Social scientists refer to this process of defining, interpreting, and otherwise
responding to symptoms as illness behavior (Mechanic, 1995). A review article
by anthropologists Vuckovic and Nichter (1997) summarizing 20 years of research
studies concluded that U.S. residents treat between 70% and 95% of all illness
episodes without a doctor’s assistance; it is likely that this percentage has grown
considerably now that many people turn to the Internet for health advice before
seeking medical care (Fox and Duggan, 2013). Individuals typically begin by med-
icating themselves or those under their care with nonprescription medications
recommended by friends, families, store clerks, or pharmacists or, more rarely, with
prescription medicines left over from previous illnesses.

When and whether individuals seek formal medical diagnoses for acute
or chronic medical problems depends on a variety of factors. According to the
illness behavior model, individuals are most likely to seek medical care if (1)
their symptoms are frequent, persistent, visible, and severe enough to interfere with
daily activities; (2) they lack alternative explanations for their symptoms; (3) their
families and friends generally trust doctors and support seeking medical care for
health problems; and (4) no psychological, economic, or practical barriers keep
them from accessing health care (Mechanic, 1995). “Key Concepts: Predicting
Illness Behavior,” summarizes this model.

Predicting Illness Behavior

Individuals Are Likely to Define
Themselves as Ill and Seek Medical
Care When

Individuals Are Unlikely to Define
Themselves as Ill or Seek Medical
Care When

Symptoms appear frequently or
persistently (e.g., coughing blood once
per day for a week).

Symptoms appear infrequently (e.g.,
coughing blood every few months).

Symptoms are highly visible (e.g.,
rash on face).

Symptoms are not especially visible
(e.g., rash on lower back).

Symptoms are severe enough to disrupt
normal activities (e.g., epileptic convulsions).

Symptoms are mild (e.g., annoying but
tolerable headaches).

Illness is only likely explanation for
physical problems (e.g., no recent
changes in life circumstances that might
explain headaches).

Alternative explanations for physical
problems are available (e.g., recent
stresses may explain headaches).

Access to health care is readily available
(e.g., good health insurance).

Access to health care is poor (e.g., no
health insurance).

Trust in doctors is high, and families and
friends encourage seeking medical help.

Trust in doctors is low, and families and
friends discourage seeking medical help.

KEY CONCEPTS

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125T H E E X P E R I E N C E O F D I S A B I L I T Y, C H R O N I C PA I N , A N D C H R O N I C I L L N E S S

Gender, Age, Class, Ethnicity, and Illness Behavior Illness behavior is signifi-
cantly affected by gender, ethnicity, age, and social class. As Chapter 2 describes,
for a variety of biological and cultural reasons, women are more likely than men
to seek medical care when they experience bodily changes that might be symp-
toms of illness. Age has a more mixed effect on illness behavior. On the one hand,
elderly persons experience more symptoms and more illness and so more often
seek medical care. On the other hand, as the body declines, some elderly persons
begin to expect a certain amount of physical discomfort, grow tired of constant
visits to doctors, and so put off seeking diagnosis for new symptoms.

Similarly, working-class and poor individuals often accept physical pain as an
unavoidable consequence of hard living and hard work, so they put off medical
care until their symptoms interfere greatly with their daily lives. At any rate, even
if they want medical care, many working-class and poor individuals can’t afford
to pay for care, can’t get time off work to seek care, or lack transportation to go
to a doctor or clinic. Moreover, those who can afford health care only at public
clinics where long waits and rude treatment are common may put off seeking care
as long as they can.

Ethnicity also affects illness behavior. Not surprisingly, members of poor eth-
nic groups are less likely to seek early diagnoses for all the reasons that poor
persons are less likely to do so. In addition, some ethnic groups (especially those
that include many recent immigrants) may feel more comfortable seeking care
from traditional healers, at least initially. Similarly, among all ethnic groups, indi-
viduals are most likely to seek early diagnosis from a doctor if their friends and
relatives trust doctors and encourage medical help seeking (Pescosolido, 1992;
Pierret, 2003).

The Search for a Diagnosis Eventually, however, if symptoms persist—and es-
pecially if they progress—individuals and their families are likely to reach a point
where they can’t avoid recognizing that something is seriously wrong. As their
previous interpretations of their symptoms crumble, individuals find themselves in
an intolerable situation, torn by uncertainty regarding the changes in their bodies
and their lives. At this point, any diagnosis can become preferable to uncertainty,
so the incentive to seek diagnosis increases (Pierret, 2003; Sim and Madden, 2008).

Seeking a diagnosis, however, does not necessarily mean receiving one. Al-
though some problems are relatively easy to diagnose—a 45-year-old white man
who complains to his doctor of pains in the left side of his chest will probably
quickly find himself getting tested for a heart attack—others are far less obvious.
Persons with fibromyalgia, for example, often find that doctors initially dismiss
their symptoms as psychosomatic or trivial (Barker, 2005; Sim and Madden,
2008). In addition, the same symptoms may more rapidly produce a diagnosis
for some than for others. For example, as previously mentioned, doctors more
often dismiss women’s complaints as merely emotional problems than they do
men’s complaints (Council on Ethical and Judicial Affairs, American Medical
Association, 1991).

Initially, both women and men can find these alternative diagnoses comfort-
ing and welcome—after all, it’s far easier to hear that you are just responding to

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126 C H A P T E R 6

stress than that you have multiple sclerosis. When symptoms persist, however, in-
dividuals find themselves torn by ambiguity and uncertainty, experiencing anx-
iety about their failing health but often receiving little sympathy or help from
relatives and colleagues (Barker, 2005; Charmaz and Rosenfeld, 2010; Stockl,
2007). As a result, most people eventually seek more accurate diagnoses, going
from doctor to doctor until they find one who offers a plausible explanation for
their symptoms.

When doctors cannot offer a convincing diagnosis, however, individuals may
seek to diagnose themselves, a process known as self-diagnosis. The rise of the
Internet and other new technologies has made self-diagnosis much easier in recent
years (Conrad, Bandini, and Vasquez, 2016; Copelton and Valle, 2009). Individuals
can now go online and research their symptoms on a wide range of websites.
They can also find online support groups that provide more details on others’
experiences in obtaining diagnoses, including names of potentially helpful doctors
or tests (Conrad, Bandini, and Vasquez, 2016). Finally, in many cases individuals
can now, on their own, pay for diagnostic tests offered direct to the public. For
example, celiac disease is an autoimmune disorder that causes a wide range of
gastrointestinal and other problems in affected individuals when they eat food
containing gluten. Consequently, many who believe they have the disease stop
eating gluten and, if they improve, feel even more confident of their self-diagnosis.
Doctors, however, typically will not diagnose someone with celiac disease unless
the diagnosis is confirmed by an established set of invasive and often highly un-
pleasant tests (which only work if individuals keep gluten in their diet for several
months). Consequently, those who believe they have celiac disease increasingly
are turning to laboratories that offer apparent scientific testing for celiac disease.
Although doctors do not consider these tests definitive, the test results can help
individuals convince doctors of their self-diagnosis (Copelton and Valle, 2009). As
this suggests, in the end any diagnosis—even one that requires a lifelong, highly
restrictive diet—may be easier to live with than having no explanation for one’s
problems. In addition, having a diagnosis makes it more likely that others will be-
lieve that one’s problems are real.

Managing Health Care and Treatment Regimens

Persons who live with chronic illness and disability can turn to both conventional
and alternative health care for help. And increasingly, they use the Internet to help
them in these decisions.

Using Conventional Health Care Living with chronic illness or disability
often means living a life bound by health care regimens. That said, some indi-
viduals will strictly follow prescribed regimens of diet, exercise, or medication,
whereas others won’t. Researchers traditionally have framed this issue as a mat-
ter of compliance—that is, whether individuals do as instructed by health care
workers.

The most commonly used framework for studying compliance is the health
belief model. As we saw in Chapter 2, this model was developed to explain why

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127T H E E X P E R I E N C E O F D I S A B I L I T Y, C H R O N I C PA I N , A N D C H R O N I C I L L N E S S

healthy individuals adopt preventive health behaviors. The same model is also used
to understand why people who have acute or chronic health problems comply
with medical advice regarding treatment (see “Key Concepts: The Health Belief
Model and Medical Compliance”). The model suggests that individuals will be
most likely to comply if they (1) believe they are susceptible to a health problem
that could have serious consequences, (2) believe compliance will help, and (3)
perceive no significant barriers to compliance. For example, people who have
diabetes will be most likely to comply with their prescribed diet if they believe
that they face substantial risks of blindness due to diabetes-induced glaucoma, that
blindness would substantially decrease their quality of life, that the prescribed diet
would substantially reduce their risk of blindness, and that the diet is neither too
costly nor too inconvenient.

The health belief model is a useful but limited one for understanding compli-
ance with medical treatment because it largely reflects the medical model of illness
and disability. First, the health belief model assumes that noncompliance with
medical recommendations stems primarily from psychological processes internal
to the patient. Although this is sometimes true, in other cases patients don’t com-
ply because health care workers did not sufficiently explain either the mechanics
of the treatment regimen or the benefits of following it (Conrad, 1985). Patients
also might not comply because they lack the money, time, or other resources
needed to do so.

The Health Belief Model and Medical Compliance

People Are Most Likely
to Comply with Medical
Advice When They . . .

Example: Compliance
Likely

Example: Compliance
Unlikely

Believe they are
susceptible.

50-year-old man with
hypertension who believes
he is at risk for a heart
attack

15-year-old boy
diagnosed with epilepsy
who has had only minor
problems and does not
believe he is at risk for
convulsions

Believe risk is serious. Believes that heart attack
could be fatal

Believes that convulsions
would not be physically
dangerous

Believe compliance will
reduce risk.

Believes he can reduce risk
through taking medication
regularly

Believes he doesn’t
really have a problem,
so he doesn’t see how
medication could help

Have no significant
barriers to compliance.

When medication is
affordable and has
no serious or highly
unpleasant side effects

When medication makes
the boy feel drowsy, dull,
and set apart from his
peers

KEY CONCEPTS

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128 C H A P T E R 6

Second, the health belief model implicitly assumes that compliance is always
good (i.e., that health care workers always know better than patients what
patients should do). Yet although health care workers often can help their patients
considerably, this is not always the case. Especially with chronic conditions, the
only available treatments may be disruptive to normal routines, experimental,
ineffective, unpleasant, or potentially dangerous. As a result, many people who at
first diligently follow prescribed regimens eventually abandon them (Rosenfeld
and Weinberg, 2012). “Contemporary Issues: Mobile Digital Health Devices,”
discusses the skyrocketing increase in devices designed to increase compliance
and health-protecting measures among both healthy individuals and those already
diagnosed with illnesses.

Using Alternative Therapies As people’s faith in mainstream medicine declines,
some begin experimenting with their treatment regimens, learning through trial
and error what works best for them not only physically but also socially, psycho-
logically, and economically. Others begin using alternative or complementary
therapies (defined broadly as treatments not widely integrated into medical train-
ing or practice in the United States).

CONTEMPORARY ISSUES

Mobile Digital Health Devices

The last few years have seen tremendous growth in the use of Internet-connected
mobile devices that digitally monitor individuals’ health. These include not only
the Fitbit and the Apple HealthKit but also a cornucopia of other wearable
digital devices: implanted sensors that monitor blood glucose or medications;
watches, athletic shoes, and wristbands that measure exercise activity, heart
rate, or sleep patterns; and thousands of smartphone apps that monitor mood,
calorie intake, and much more. Users can upload their data to a computer or the
Internet and share it with doctors, family members, or online groups of fellow
sufferers.

The benefits of these technologies are obvious. Individuals who track their
calorie intake or exercise routines, for example, are more likely than those who do
not meet their personal goals. Those who track danger signs (such as persons with
diabetes who track blood glucose levels) may be able to treat themselves before a
problem develops and avoid the need to seek medical care. And those who share
their data with their health care providers may benefit when their providers notice
early signs of a problem developing.

Yet mobile health devices also have a downside (Lupton, 2013a). First, they
encourage us to trust digital measures more than our sense of our own body. Yet
our intuitive judgments are sometimes correct, and our digital devices sometimes
fail us. Second, these devices encourage us to believe that our health is fully
under our own control, potentially stigmatizing any individual who falls ill or who
does not (or cannot afford to) rely on digital health devices. Finally, many of these
devices frequently remind individuals (via beeps, texts, or pop-up messages) to
monitor their body or moods, take a specified action, or upload data. As a result,
they can add to the burdens of illness by increasing anxiety, resentment, and
the sense that one’s life has been overwhelmed by one’s illness (Lupton, 2013b;
Oudshoorn, 2011).

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129T H E E X P E R I E N C E O F D I S A B I L I T Y, C H R O N I C PA I N , A N D C H R O N I C I L L N E S S

Interest in alternative therapies has grown rapidly in the United States,
both among healthy persons interested in avoiding illness and among those with
chronic or acute illnesses. According to data collected by federal researchers
through national random surveys, one-third of U.S. residents use some form
of alternative therapy. The most commonly used therapies are herbal and other
dietary supplements; deep breathing exercises; yoga, tai chi, and qi gong; chiro-
practic or osteopathic treatments; and meditation (Barnes et al., 2015).

Users of alternative therapies are disproportionately likely to be female,
younger than 65, and college educated. Use is also more common among those
who live with chronic health problems, especially back, neck, or joint pain
(Barnes et al., 2008; Tindle et al., 2005). Most who use alternative therapies do
so because conventional treatments have not helped them. That said, individuals
typically use alternative therapies to complement rather than replace mainstream
medicine.

The popularity of alternative therapies rests on belief—or at least hope—in
the efficacy of these treatments. These beliefs are supported by both personal ex-
perience and recommendations from friends and acquaintances who have used
alternative therapies. In some cases, the therapies no doubt did help, either be-
cause of the biological effects of the therapies or because consumers’ belief in the
therapy helped the body to heal itself, as happens in around 30% of all persons
treated with placebos (drugs known to have no biological effect). In other cases,
individuals attribute cures to alternative therapies when actually the problem went
away on its own, as happens with 70% to 80% of all health problems (Lundberg,
2001:123). Finally, people sometimes convince themselves that therapies helped
even though their health did not actually improve.

Use of alternative therapies also rests on the dangerous assumption that “nat-
ural” treatments are automatically safe. For example, the Chinese herb ma huang
can help individuals lose weight, but it can also cause heart attacks and strokes.
Similarly, kava kava tea may reduce anxiety but cause liver damage, and gingko
biloba can improve circulation but increase bleeding during surgery (McNeil,
2002). Moreover, whereas the federal Food and Drug Administration regulates
the safety, potency, and effectiveness of prescription drugs, no governmen-
tal agency regulates herbal remedies or supplements. Although manufacturers
can’t legally claim that alternative herbs and supplements cure any condition
or disease, they can claim that their products might help. Unfortunately, avail-
able research suggests that few of these treatments are useful, some contain
dangerous contaminants such as lead or arsenic, and some don’t even contain
the herb or vitamin listed on the bottle (Guallar et al., 2013; Offit and Erush,
2013).

Seeking Information on the Internet Whether individuals rely primarily
on mainstream or alternative therapies, many seek information about their con-
ditions on their own rather than relying solely on information provided by
health care professionals. In the past decade, public access to information has
exploded with the exponential growth of Internet use. As a result, more than
half of Americans use the Internet to seek health information, and more than

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130 C H A P T E R 6

one-third have used the Internet to diagnose themselves or others (Fox and
Duggan, 2013). That said, Internet use is not evenly distributed across the pop-
ulation: Whites, women, and middle- to upper-class individuals are more likely
than others to use it.

Unfortunately, there are no controls on the quality of materials posted on
the Internet, and its vast size makes it impossible to police for fraudulent in-
formation such as claims that herbs can cure cancer or HIV/AIDS. Moreover,
more often than not, popular search engines take readers seeking health-related
information to websites run by individuals or corporations that have vested
economic interests in selling certain drugs or treatments (Green, Kazanjian,
and Helmer, 2004). Partly in response to concerns about misleading websites,
the U.S. Department of Health and Human Services now runs its own website
(www.healthfinder.gov) to link consumers to reliable online sources of health
information.

Despite these problems, the Internet has proven enormously beneficial to
those living with chronic health problems. The Internet has allowed individuals
to find online forums designed to help individuals who share similar health issues
or concerns and to find information far beyond what they otherwise could access
(Barker, 2008; Fox, 2012). This is especially useful for those with rare conditions,
those confined to their homes by severe illness or disability, and those with stig-
matized illnesses who might shy away even from doctors (Conrad and Stults, 2010;
Vanderminden and Potter, 2010). Consequently, the Internet can help individuals
negotiate with health care providers regarding treatment and navigate the daily
difficulties of living with illness or disability.

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131T H E E X P E R I E N C E O F D I S A B I L I T Y, C H R O N I C PA I N , A N D C H R O N I C I L L N E S S

The Internet has also given individuals access to options that their own
doctors might reject as unethical. “Ethical Debate: The Sale of Human Organs,”
p. 132, discusses one of these options.

Managing Social Relationships and Social Standing

For better or worse, chronic illness and disability necessarily alter relationships
with friends, relatives, and others. Illness and disability can strengthen social rela-
tionships, as friends and families pull together to face health problems, old wounds
are healed or put aside, and individuals realize how much they mean to each other.
Illness and disability, however, can also strain relationships. Friends and family of-
ten help each other willingly during acute illnesses or the first few months of a
chronic illness or traumatic injury but pull away over time. This is especially true
for male friends and family, who are less often socialized than women to take care
of others (Cancian and Oliker, 2000). Moreover, the growing burden of grati-
tude can make those who have chronic illnesses or disabilities reluctant to ask for
needed help. Problems are especially acute among elderly persons who have out-
lived close relatives and friends and must rely on more distant social connections
for help and support.

Relationships also suffer if individuals no longer can participate in previous
activities. How do you maintain a relationship with a tennis partner if you no
longer can hold a racket? How do you maintain a relationship with a friend when
transportation barriers keep you from going to movies or restaurants? And how
do you maintain a relationship with a spouse or lover when your sexual abilities
and interests have changed dramatically—or when your partner no longer finds
you sexually attractive?

Declines in financial standing also strain relationships. An individual might,
for example, have the physical ability to go to a movie with a friend but lack the
money to pay admission. Women and minorities are especially hard hit because
they typically earn lower wages and have more erratic work histories before be-
coming ill or disabled, so they often qualify for lower Social Security benefits. At
the same time, financial stresses can damage relationships with children, lovers, and
spouses.

Managing Stigma Illness and disability affect not only relationships with friends
and family but also less intimate relationships. Most basically—and despite the pre-
dictions of the sick role model—living with illness or disability means living with
stigma. Stigma refers to the social disgrace of having a deeply discrediting attri-
bute, whether a criminal record, a gay lifestyle, or a socially unacceptable illness.
The term stigma does not imply that a condition is immoral or bad, only that it is
commonly viewed that way.

Some illnesses and disabilities produce relatively little stigma, but others are
so stigmatized that they can affect even relationships with health care providers.
Illnesses and disabilities are most likely to result in stigma when they are believed
to be the fault of the affected individual and when they cause fear or dread;
visible disfigurement; loss of bowel, urinary, or other bodily functions; cognitive

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132 C H A P T E R 6

problems; or behavior that mimics cognitive problems (Charmaz and Rosenfeld,
2010). HIV/AIDS, for example, elicits particularly high stigma because it is often
interpreted as punishment for sin, is contagious (and thus frightening), and can
cause wasting, facial sores, loss of bodily functions, and dementia.

Individuals with stigmatized illnesses and disabilities can use various strategies
to manage that stigma. Many attempt to avoid stigma by hiding it or otherwise de-
flecting attention from it. For example, a man who bumps into furniture because
of failing eyesight might try to convince others that he is merely clumsy, and a
woman who has arthritis might choose not to go out with friends on days when
her symptoms flare up.

Conversely, others manage stigma by challenging the very basis of that stigma.
Some disabled men, for example, become star athletes in part to reject the as-
sumption that a disabled man can’t be “masculine.” Others challenge stigma more
directly by fighting for civil rights. Still others fight for acceptance of their bodies
by displaying their own proud acceptance or even appreciation of their bodies. For
example, for medical reasons, Aimee Mullin had both her legs amputated below
the knee when she was one year old. She now is a professional model, actress, and

The Sale of Human Organs

One of the most extreme situations an ill individual can face is the failure of a major
organ, be it the heart, lung, kidney, or liver. Such situations are death sentences unless
the organ can be replaced with either a mechanical substitute or a donated human
organ. But mechanical replacements are often poor substitutes for bodily organs. In
addition, some mechanical replacements severely restrict individuals’ lives by tethering
them to machines. Human organs, on the other hand, can be difficult or even
impossible to obtain legally. More than 100,000 Americans are now on organ waiting
lists, and 18 die each day (U.S. Department of Health and Human Services, 2010). As
a result, an illegal, multimillion-dollar, international market in human organs has
emerged (Bilefsky, 2010; Rohter, 2004).

Most commonly, the organs sold through this market are kidneys, although livers,
lungs, corneas, and other organs also are sold. Because almost everyone is born with
two kidneys and only one is needed to live, an individual can usually live a normal and
healthy life with just one.

Selling an organ carries great risks but can seem worth it if an individual is poor
enough. In Brazil, for example, a person can earn $80 per month working at minimum
wage—if work is available—or sell his or her kidney for $3,000. Such sales are illegal in
many countries, but those laws are rarely enforced.

To some observers, the trade in human organs is a natural and reasonable market
response in which supply (organs for sale) develops to fill an obvious need (organs
wanted). These observers see no difference between selling organs and selling any other
valued commodity such as drugs, cars, or food. Similarly, they argue, people should
have at least as much right to buy an organ that will save their life as they have to buy a
television or a facelift and as much right to risk their health by selling an organ as they
have to risk their life by selling their labor in a dangerous occupation (Cherry, 2005).

Other observers, however, compare the trade in human organs to the trade
in humans and consider selling organs no more ethical than selling slaves. They

ETHICAL DEBATE

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133T H E E X P E R I E N C E O F D I S A B I L I T Y, C H R O N I C PA I N , A N D C H R O N I C I L L N E S S

athlete who revels in showing off her many artificial legs, including an exquisitely
carved, high-heeled, wooden pair and a carbon-fiber pair for running that mimics
a cheetah’s stride.

Health Social Movements In addition to challenging stigma and discrimina-
tion individually, persons who live with or are at risk of illness or disability can
also turn to collective political action to address their grievances. Like other social
movements, health social movements are collective (rather than individual)
efforts to change something about the world that movement members believe is
wrong (Brown et al., 2004; Brown and Fee, 2014).

Health social movements have a variety of goals. Many focus on obtaining
equal access to health care by, for example, fighting to loosen health insurers’ re-
strictions on what treatments they will cover. Other health social movements focus
on meeting the needs (including access to health care) of a particular group. For
example, the feminist health movement has fought to give women equal access
to heart disease treatments, to halt the unnecessary use of hysterectomies, and to
increase the number of women physicians. Finally, a growing number of health

argue that no one truly sells their bodily organs freely but does so because they are
coerced by poverty. They also argue that whenever a highly profitable commodity is
unregulated by laws, unscrupulous individuals will find ways to profit, and vulnerable
individuals—whether buyers or sellers—will be exploited. Individuals who purchase
black-market organs have no guarantee that the donor was healthy or that the organ
is a good match for them, and those who sell organs have no guarantee that the
surgery will be conducted safely, that it won’t harm their health, and that they will
receive needed health care afterward. A study conducted in the Indian state of Tamil
Nadu found that virtually all who (illegally) sell their kidneys do so to pay crippling
debts. Yet because most (86%) were in worse health in the years after surgery, their
average family incomes declined by one-third, even though average incomes in the
state increased (Goyal et al., 2002). Despite these problems, though, the trade in
organs is likely to continue so long as demand continues to outstrip supply.

Sociological Questions

1. What social views and values about medicine, society, and the body are reflected
in policies that allow or forbid the selling of human organs? Whose views are
these?

2. Which social groups are in conflict over this issue? Whose interests are served by
laws forbidding the sale of human organs? By laws permitting it?

3. Which of these groups has more power to enforce its view? What kinds of power
do they have?

4. What are the intended consequences of permitting the sale of human organs?
What are the unintended social, economic, political, and health consequences of
this policy?

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134 C H A P T E R 6

social movements focus on winning medical acknowledgement for contested ill-
nesses. For example, few doctors believe in the existence of “multiple chemical
sensitivity,” which is theorized to make some individuals ill whenever they contact
any of the many chemicals common to everyday modern life. Persons who believe
they have this condition have organized to lobby for medical recognition of their
condition and to sue insurance companies that refuse to cover their treatment.

The rise of health social movements reflects a variety of factors (Brown et al.,
2004). The civil rights, women’s rights, and gay rights movements set the stage for
a broader discussion of rights and a broader acceptance of political action across
American culture. Health social movements are partly a product of this changed
cultural climate. In addition, the same cultural and technological forces that in-
creased the use of the Internet and alternative health care have fostered health so-
cial movements by reinforcing the idea that individuals have the right to challenge
medical authority. Individuals are most likely to participate in health social move-
ments when they come to believe that medical authorities have failed to protect
them (or their loved ones) from diseases, to identify their diseases, or to treat their
diseases appropriately. For example, the environmental breast cancer movement
was organized primarily by women affected by the disease who questioned why
medical research has focused almost exclusively on early diagnosis and treatment
of breast cancer rather than on prevention. As this example suggests, people who
live with illness and disability are not simply victims of their fate. Rather, they may
actively work to better their situation and those of others like them.

The Body and the Self Regardless of a person’s political stance toward his or
her condition, all disabilities and chronic illnesses challenge the self (Charmaz,
1991; Reeve et al., 2010; Weitz, 1991). Those whose bodies differ in some critical
way from the norm must develop a self-concept in the context of a culture that
interprets bodily differences as signs of both moral and physical inferiority. The
resulting stigma leads such individuals to feel set apart from others (Conrad, 1987;
Weitz, 1991).

Illness and disability threaten self-concept in various ways. People who be-
come physically deformed or less attractive often find it difficult to maintain their
self-images. And no matter how attractive a disabled person is, others typically
assume they lack sexual desire (Nario-Redmond, 2010). Similarly, those who lose
their financial standing or their social roles as worker, student, spouse, or parent due
to illness or disability can find it difficult to maintain their sense of self (Balmer,
Griffiths, and Dunn, 2015; Flurey et al., 2018; Weitz, 1991:97). In addition, the
need to rely on others for assistance can shake individuals’ images of themselves as
competent adults.

To cope with these threats to the self, individuals sometimes attempt in-
tellectually to separate their essential selves from their recalcitrant bodies. They
might mention how their leg is acting up today, as if they were talking about
a neighbor rather than a part of their body, or talk about their lives and their
selves with no mention of their bodies at all. This strategy succeeds best when
symptoms follow a predictable course and the problem affects only one part of
the body.

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135T H E E X P E R I E N C E O F D I S A B I L I T Y, C H R O N I C PA I N , A N D C H R O N I C I L L N E S S

The impact of disability and illness on the self, however, is not solely nega-
tive. In fact, research consistently finds that even severe disability and illness have
relatively little effect on overall life satisfaction or happiness, although they do
affect satisfaction with health, income, and social relationships (Oswald and Pow-
dthavee, 2008; Powdthavee, 2009). Whether individuals grow up with disability or
become disabled over time, they may learn to devalue physical appearances, derive
self-esteem from other sources, focus on the present rather than on an intangible
future, and compare themselves to others who are ill or disabled rather than to
the able-bodied (Powdthavee, 2009; Weitz, 1991:136–140). They may learn to set
priorities in their lives and accomplish their most important goals rather than
wasting precious energy on trivial concerns (Charmaz, 1991:134–166; Harrop et
al., 2017). Finally, they may come to define their condition simply as part of who
they are, with good points and bad points, and to recognize that much of their
personalities and accomplishments exist not despite their physical condition but
because of it. As Mark Zupan, a husband, engineer, renowned wheelchair rugby
athlete, and quadriplegic since age 18, writes:

When I was growing up, sports meant everything to me. So you can
imagine how I felt when it became clear that I was going to spend the
rest of my life in a wheelchair. I thought I would never be able to play
again—or drive a car, or have a job, a girlfriend, a house, a family of
my own. [But] in truth, my accident has been the best thing that could
ever have happened to me. I’m not trying to be glib when I say this, or
rationalize my mistakes, or offer you a steaming bowl of bullshit-flavored
chicken soup for the soul. What I am saying is that it has been the single
most defining event of my life. And without it, I wouldn’t have seen
the things that I’ve seen, done the things I’ve done, and met so many
incredible people. . . . I wouldn’t have come to understand and cherish my
family and friends the way I do, and feel the kind of love they have for me
and I have for them. In other words, I wouldn’t be me, plain and simple.

Learning to live with limited function has forced me to take a good
hard look at myself. When something catastrophic like this happens, the
anger, frustration, and despair can become overwhelming. . . . There have
been times that I have stared in the mirror and hated what I saw. . . . But
here’s the bottom line: At some point, life is going to give you a swift, hard
kick to the nuts. You can’t control everything that happens to you, but you
can try to understand it. For me, this has been just one of the many things
I’ve learned in this painful, beautiful, crappy, exhilarating, stupid, rewarding
life that started the day I landed in this chair—which I thought was my
cross to bear, but was actually my salvation. (Zupan and Swanson, 2006:4–6)

IMPLICATIONS

Given the aging of the American population and the increasing ability of medical
technology to keep ill and disabled individuals alive, many more of us can expect
eventually to live with illness, chronic pain, and disability—whether our own,

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136 C H A P T E R 6

that of our parents, or those of our children. Consequently, understanding what it
means to live with these conditions has never been more important.

As both social constructions and social statuses, illness and disability affect
all aspects of life. Most obviously, they force individuals to interact with health
care providers and to manage health care regimens. But illness and disability also
affect family relationships, friendships, work prospects, educational performance
and opportunities, and, perhaps most important, sense of self and relationship with
one’s own body. Living with illness and disability also requires people to come to
terms—or to refuse to come to terms—with uncomfortable questions and harsh
realities regarding their past, present, and future.

Illness and disability can bring social disadvantages similar to those experi-
enced by members of traditionally recognized minority groups. Yet the impact of
illness and disability is not always negative because illness and disability at times can
provide individuals with the basis for increased self-esteem and enjoyment of life.
Moreover, like other minorities, those who live with illness and disability have in
recent years moved from pleas for tolerance to demands for rights. Those demands
have produced significant changes in American architecture, education, transpor-
tation, and so on, and they have laid the groundwork for the changes still needed.

SUMMARY

1. The medical model of disability defines disability as something located solely
within the individual mind and body. The sociological model of disability, on
the other hand, defines disability as restrictions or lack of ability to perform
activities resulting largely or solely from either social responses to bodies that
fail to meet social expectations or assumptions about the body reflected in
the social or built environment.

2. Like members of minority groups, persons with disabilities experience
prejudice and discrimination and increasingly share a sense of community.

3. The disability rights movement argues that persons with disabilities deserve
the same rights as other members of society. This philosophy gained
important legal support with passage of the Americans with Disabilities
Act. However, until recently the impact of that act was limited by restrictive
court decisions.

4. Approximately 15% of noninstitutionalized persons living in the United
States have a disability. African Americans, women, older persons, and poorer
persons have higher rates of disabilities than others.

5. Chronic pain affects one of every six Americans and is most common
among women, poorer persons, minorities, and elderly persons. Obtaining
appropriate treatment for chronic pain is notoriously difficult, especially for
members of these four groups.

6. Becoming a chronically ill or disabled person begins with recognizing that
something about the body is troubling, a process that may develop slowly.

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137T H E E X P E R I E N C E O F D I S A B I L I T Y, C H R O N I C PA I N , A N D C H R O N I C I L L N E S S

The process of responding to symptoms and deciding whether to seek
diagnosis and treatment is known as illness behavior.

7. Obtaining an accurate diagnosis is often difficult. According to the illness
behavior model, individuals are most likely to seek medical care and diagnosis
if (a) their symptoms are frequent, persistent, visible, and severe enough to
interfere with daily activities; (b) they lack alternative explanations for their
symptoms; (c) their families and friends generally trust doctors and support
seeking medical care for health problems; and (d) no psychological, economic,
or practical barriers keep them from accessing health care.

8. The health belief model predicts that individuals are most likely to comply
with medical advice when they (a) believe they are susceptible to health
dangers, (b) believe the risk is serious, (c) believe compliance will reduce
their risk, and (d) have no significant barriers to compliance. Critical
sociologists have noted that individuals sometimes have rational reasons for
medical “noncompliance.”

9. Users of alternative therapies are largely female, younger than age 69, college
educated, and suffering from chronic health problems, especially back pain,
colds, neck pain, and joint pain.

10. Alternative therapies are typically used in addition to mainstream medicine
by individuals who find that conventional treatments have not helped them,
believe that alternative treatments are safe, or are discontented with modern
society’s emphasis on science and rationality.

11. Many Americans use the Internet to seek health information, although the
quality of that information varies widely. The Internet is particularly useful
for those living with chronic health problems, especially if the problems are
rare or stigmatized.

12. Illness and disability can threaten social relationships in many ways, especially
when they cause stigma. Individuals can manage stigma by hiding their
illness or disability, deflecting attention from it, or challenging the norms
that stigmatize them.

13. Health social movements are collective efforts to improve health and health
care, sometimes by changing definitions of health and illness.

14. Disabilities and chronic illnesses can threaten one’s sense of self and the
body. However, they sometimes can improve individuals’ self-concepts.

REVIEW QUESTIONS

1. How do the medical and sociological models of disability differ?

2. Are people with disabilities a minority group? Explain.

3. How common is disability, and which social groups are most at risk?

4. How common is chronic pain, and which social groups are most at risk?

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138 C H A P T E R 6

5. What difficulties do individuals face in responding to initial symptoms of
illness or disability and obtaining diagnoses?

6. What is illness behavior? Give an example.

7. Why do individuals sometimes ignore medical advice?

8. Why do individuals use alternative health care?

9. How can illness or disability affect social relationships and self-image?

10. How can individuals manage the stigma of illness or disability?

11. What are health social movements, and why have they become more
common?

CRITICAL THINKING QUESTIONS

1. Think of a recent experience you, a close friend, or a relative had with
a chronic or acute illness. Explain which concepts from the sociological
literature on the experience of illness applied to your experience. If few
concepts applied, explain why these concepts generally did not apply.

2. To protect or improve their health, many individuals take actions that lack
scientific proof of effectiveness, such as taking vitamin C to cure colds.
Think of something that you, your friends, or your relatives do that falls into
this category. Why did you or they decide to adopt this measure? Why have
you or they continued? What beliefs or principles underlie these decisions?
Why doesn’t the lack of scientific proof affect these decisions?

3. What are some of the reasons why individuals seek alternative health care?
What does the growing use of alternative health care tell us about modern
medical care?

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139

C H A P T E R

The Sociology of

Mental Illness

C H A P T E R

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140 C H A P T E R 7

LEARNING OBJECTIVES

After reading this chapter, students should be able to:

● Understand how cultural explanations for illness have changed over the
centuries.

● Assess how ethnicity, gender, social class, social stress, and social capital
affect mental illness.

● Compare the medical and sociological models of mental illness.
● Understand how medical and social ideas about mental illness have evolved

over time.
● Offer a sociological description of the experience of living with mental

illness.

Journalist Norah Vincent has struggled with depression for many years, although
most of the time psychotherapy and psychotherapeutic drugs have helped her
avoid serious problems. A few years ago, however, her depression landed her in a
mental hospital. Dismayed by much of what she saw there, after her health sta-
bilized she decided to fake symptoms of mental illness, have herself admitted to
various mental hospitals, and write about the treatment she received. Summarizing
her experiences, she writes:

There are few things more humiliating, more soul-destroying and depressing, than
the process of being institutionalized. And the worst part is your own collusion
in the process. You allow it to happen to you. . . . You become docile, subservient,
frightened, dull, unthinking, susceptible to the mysterious self-fulfilling power
of the rule. You loathe the tone of your own voice as you mewl and cower to the
dingbat shoving you your meds or taking away your pen. You are demeaned by
the routine as you regulate your life by mealtimes, loitering in the hall at eight,
twelve, and six. You change as you acquiesce to rudeness, becoming less, becoming
small. . . .

You do strange things. I tried, for example, to make shoelaces out of toilet
paper [after the nurses removed them] so that I could walk like a normal person
instead of limping like a gangster. The laces tore, of course, but it was a way
to pass the time, rolling the long strands of tissue between my fingers as tight
and string-like as they would go, and feeling, even though I failed to make the
lashings tie or hold, the momentary elation of knowing that I could still exercise
some form of creativity.

I learned to flick on the light over my bed with the teeth of a comb or the tip
of the forbidden ballpoint pen so that I could read late at night when I couldn’t
sleep and the dayroom was closed. The light switches were in the hall and
recessed so that only the staff could access them . . . and thus enforce lights out at

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141T H E S O C I O L O G Y O F M E N TA L I L L N E S S

eleven and lights on at eight. Controlling light is no small matter, as they well
knew. Just one of many daily benefits you take for granted in the outside world.
(Vincent, 2009:41)

As Norah Vincent’s story suggests, mental illness is a social as well as a psy-
chiatric condition, and mental hospitalization has both social and psychiatric con-
sequences. We begin this chapter by considering the extent and distribution of
mental illness. We then examine contrasts between the medical model of men-
tal illness, which views mental illness as an objective reality, and the sociological
model, which views mental illness as largely a social construction. Finally, we look
at how social forces and values have affected both the history of treatment and the
experiences of those who live with mental illness.

THE EPIDEMIOLOGY OF MENTAL ILLNESS

The importance of understanding mental illness becomes more apparent when we
realize how many people are affected. The following section discusses research on
the extent, distribution, and causes of mental illness.

The Extent of Mental Illness

Since the 1920s, social scientists have tried to ascertain the extent of mental illness.
These researchers essentially have adopted medical definitions of mental illness
(which, as we will see later in this chapter, are problematic). However, whereas
doctors and other clinicians have focused on how biological or psychological
factors can foster mental illness, social scientists have focused on how social factors
can do so.

Over the years, researchers using a variety of methods have reached two con-
sistent conclusions regarding the extent of mental illness. First, all societies, from
simple to complex, include individuals who behave in ways considered unaccept-
able and incomprehensible (Horwitz, 1982:85–103). Second, symptoms of mental
disorder are fairly common. According to the National Comorbidity Survey Rep-
lication, as of 2018 the largest national survey on the topic based on a random
sample (Kessler et al., 2005a); during the course of one year, approximately 31%
of working-age adults experience a diagnosable mental illness, with 20% expe-
riencing a moderate or severe disorder. The most common illnesses are major
depression and problems with alcohol use, which were reported by 17% and 13%,
respectively. These estimates, however, are probably high because they are based
on reports of symptoms taken out of context (Horwitz, 2002, 2007). When an
individual reports that he is extremely sad, survey researchers can’t tell whether
the sadness was caused by clinical depression or financial problems. Nor can re-
searchers tell whether a woman who reports losing weight has done so because of
depression or because she wanted to fit into her wedding dress.

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142 C H A P T E R 7

Social Stress and Mental Illness

Although mental illness is common, it does not burden all social groups equally. So
why do some social groups experience more mental illness than others? For many
sociologists, the answer lies in their different levels of social stress (Thoits, 2010).

In the past, sociologists interested in the link between mental illness and stress
largely focused on the acute stresses of life events such as divorce, losing a job,
or a death in the family. Researchers looked not only at the sheer number of life
events individuals experienced but also at the meaning life events have for people
and the resources individuals have for dealing with those life events. For example,
an unplanned pregnancy means something quite different to an unmarried college
student from a poor family than it does to a married, middle-class housewife.

Similarly, some individuals have resources that can reduce the stresses of life
events (such as money, social support networks, and psychological coping skills),
whereas others lack such resources (Lennon and Limonic, 2010; Turner and Brown,
2010). For example, a person whose marriage fails but who has enough income to
maintain his or her current lifestyle, close friends to provide companionship and
social support, and good stress-management skills will probably experience less
stress than someone whose economic standing plummets after divorce, who has
few friends, and who responds to stress by drinking.

As we saw in Chapter 2, recent research finds that chronic stress is more im-
portant than acute stress for predicting poor physical health. Similarly, researchers
have shown that chronic stresses affect mental health more than do acute stresses
such as life events (Turner and Avison, 2003). Much research in this field now
focuses on how exposure to chronic social stress may explain ethnic, gender, and
social class differences in rates of mental illness.

Ethnicity, Gender, Social Class, and Rates of Mental Illness

Ethnicity, gender, and social class all affect rates of mental illness, as Table 7.1 sum-
marizes. The rest of this section discusses these effects.

The Impact of Ethnicity: Stress Effects Researchers have uncovered few sig-
nificant ethnic differences in rates of schizophrenia or other major mental illnesses.
However, for still unexplained reasons, African Americans seem less likely than do

Sex, Ethnicity, and Social Class Groups with the
Highest Lifetime Risks of Specific Mental IllnessesTABLE 7.1

Mood Disorders
Impulse-Control
Disorders

Substance Abuse
Disorders Schizophrenia

Sex Females Males Males Males

Ethnicity Non-Hispanic
whites

No ethnic
differences

Hispanics and non-
Hispanic whites

No ethnic
differences

Social class Lower class Data unavailable Lower class Lower class

SOURCES: Aleman, Kahn, and Selten (2003); Kessler et al. (2005a)

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143T H E S O C I O L O G Y O F M E N TA L I L L N E S S

whites to develop anxiety or mood disorders. Nevertheless, African Americans are
more likely—especially if they are poor—to report psychological distress, which
overlaps with but is not the same as diagnosable mental illness (Kessler et al.,
2005a). Researchers theorize that psychological distress among African Americans
results from the chronic daily stresses of living with racism (Thoits, 2010). This
would explain why, for example, wealthier African Americans—who can use their
income to shield themselves somewhat from the effects of racism—experience less
stress than do lower income African Americans (Turner and Avison, 2003).

Little recent research is available on psychological distress among other U.S.
minority groups. However, Hispanic Americans are less likely than white Amer-
icans to develop anxiety disorders, mood disorders, or substance abuse problems
(Kessler et al., 2005a). Importantly, the rate of mental disorders among new immi-
grants is significantly lower than that of U.S.-born Mexican Americans, but those
rates converge over time. Researchers hypothesize that Mexican culture’s strong
emphasis on extended families protects immigrants from mental illness by offering
social support and thus reducing chronic stress among persons who are single,
childless, less educated, or employed in low-prestige jobs. As Mexicans integrate
into American culture, they lose these protections (Cervantes et al., 2013).

The Impact of Gender: Socialization Effects The impact of gender on men-
tal illness is at least as complex as the impact of ethnicity. Most mental illnesses
are equally common among men and women. However, men have higher rates of
schizophrenia, substance abuse, and impulse control disorders (such as compulsive
gambling or chronic violence), whereas women have higher rates of anxiety disor-
ders and of mood disorders (such as depression) (Aleman, Kahn, and Selten, 2003;
Kessler et al., 2005a).

These differences in mental illness parallel differences in gender roles (Rosen-
feld and Mouzon, 2013). Consistently, men display higher rates of disorders linked
to violence. As a result, some researchers hypothesize that these forms of mental
illness occur when men become “over-socialized” to their gender roles. For exam-
ple, a young man who fails to plan ahead, shows “reckless disregard” for safety, and
gets into fights often, and who before the age of 15 often bullied others, got into
fights, or skipped school, would meet the criteria for diagnosis with “antisocial
personality disorder.” Yet these behaviors more or less parallel expectations within
lower-class communities for how young men should act. Within these commu-
nities, men who meet these expectations are typically considered dangerous, but
not mentally ill, because their behavior is comprehensible. Although they might be
labeled criminal, they are unlikely to be labeled mentally ill unless they somehow
come to the attention of doctors from outside their communities.

Similarly, many sociologists hypothesize that depression results when tradi-
tional female roles—or others’ expectations about the roles women should and
should not play—cause chronic stress by reducing women’s control over their
lives and exposing them to discrimination and prejudice (Horwitz, 2002:173–179;
Thoits, 2010). This lack of control is multiplied by broader gendered inequality
such as the lack of quality child care or equal pay for working women (Simon,
2014). Research has found that rates of depression are considerably higher among

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144 C H A P T E R 7

nonworking women and married mothers—the two groups that typically have
the least control over their lives. Similarly, depression is especially common among
men who have less power than their wives, have little control over their work, or
lose their jobs.

The Impact of Social Class: Social Stress or Social Drift? Of all the de-
mographic variables researchers have investigated, social class shows the strongest
and most consistent impact on mental illness. As social class goes up, the rate of
both diagnosable mental illness and psychological distress goes down (Eaton and
Muntaner, 1999; Kessler et al., 1994). But does lower social class status cause men-
tal illness, or does mental illness cause lower social class? In other words, do the
social stresses associated with lower-class life lead to greater mental disorder, or
do those who suffer from mental disorder drift downward into the lower social
classes? These two theories are referred to as social stress theory versus social
drift theory, respectively.

Researchers interested in social class have focused primarily on schizophrenia,
the disease that shows the most consistent relationship to social class. Studies have
found that schizophrenia and related disorders occur two to five times more often
among those who have not graduated from college compared with those who
have. Those who favor the social drift argument have shown that, for example,
when patients are admitted to mental hospitals for the first time with a diagnosis of
schizophrenia, they typically hold jobs that are lower in social class than one would
expect from their family backgrounds. This suggests that mental problems caused
these individuals to drift downward in social class (Eaton and Muntaner, 1999).

Most research, however, suggests that social stress better explains the link
between social class and mental illness (Aneshensel, 2009; Schwartz and Meyer,
2010). For example, those diagnosed with schizophrenia are more likely than
others to have grown up in lower-class homes and to have held stressful, noisy,
hazardous, and physically uncomfortable jobs even before their first admissions to
mental hospitals (Link, Lennon, and Dohrenwend, 1993; Muntaner et al., 2004).
Recently, this theory has been vividly reinforced by reports of extremely high
rates of mental illness among returning war veterans, most of whom come from
poor or working-class families (see “Contemporary Issues: Invisible Wounds of
War,” p. 145, for more details).

Social Capital and Mental Illness

As Chapter 3 explained, social capital refers to the resources available to an in-
dividual through his or her social network. Social capital is more common among
those with higher social class but affects mental health across ethnic, class, and gen-
der lines (Song, 2011). It is not surprising that those with more social capital typ-
ically report less psychological distress. For example, people in their 50s and 60s
often have excellent social capital: extensive connections to friends, neighbors, and
relatives who have garnered a wide variety of resources over many years. This may
partly explain why people in this age range report less psychological distress than do
younger persons. Similarly, although women typically have more friendships than

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145T H E S O C I O L O G Y O F M E N TA L I L L N E S S

do men, women’s friends often have relatively few resources. This may help explain
why women are more likely than men to report psychological distress (Song, 2011).

DEFINING MENTAL ILLNESS

As with disability and physical illness, doctors and sociologists typically view
mental illness in decidedly different ways. In this section, we contrast the medical
and sociological models of mental illness. Neither model is absolute, however,
because both sociologists and doctors often blend elements from each in their
work. Nevertheless, the contrast between these two “ideal types” provides a useful
framework for understanding the broad differences between the two fields.

The Medical Model of Mental Illness

To doctors and most other clinicians in the field, mental illness is an illness es-
sentially like any other. To understand what this means, it helps to understand
the history of medical treatment for syphilis, the disease that first demonstrated
the power of medicine to control mental illness and in many ways established the
frame through which doctors would understand all mental illnesses.

CONTEMPORARY ISSUES

Invisible Wounds of War

Since 2001, almost 3 million U.S. military members have served at least once in Iraq or
Afghanistan (Watson Institute, 2018). Because of both military and medical advances,
far fewer U.S. soldiers have died there than in previous military engagements.
However, longer, more frequent, and often involuntary deployments in a war
characterized by suicide bombers and often-invisible improvised explosive devices
(IEDs) have taken a heavy psychological as well as physical toll (Tanielian and Jaycox,
2008; Watson Institute, 2018). Explosive devices also have caused a dramatic increase
in traumatic brain injuries, which in turn can cause both psychological and cognitive
damage. According to a major report by the nonprofit RAND Corporation (Tanielian
and Jaycox, 2008), an extraordinary 30% of returning troops experience disabling
posttraumatic stress disorder (PTSD), major depression, or traumatic brain injury (TBI).

Individuals with these conditions are at substantially increased risk for suicide,
divorce, unhealthy drug use and sexual activities, and other problems (Tanielian
and Jaycox, 2008). Their children and spouses, too, may suffer, as veterans’ ability
to parent declines and rates of divorce, unemployment, domestic violence, and
homelessness increase.

Unfortunately, fear of stigma and of treatment side effects has kept half of
those who have neurological or psychiatric problems from seeking medical care
(Tanielian and Jaycox, 2008). Moreover, only half of those who seek care receive
even minimally effective treatment. Given that not treating these conditions costs
the nation more than treatment would, the RAND report calls for a substantial
investment in medical care for PTSD, TBI, and major depression among veterans. The
report also calls for increased funding of programs designed to reduce the perceived
and real career consequences of seeking such care.

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146 C H A P T E R 7

Since the 15th century, doctors had recognized syphilis as a discrete disease.
Because of its mild initial symptoms, however, only in the late 19th century did
doctors realize the full damage syphilis can inflict on the nervous system, including
blindness, deformity, insanity, and death. Unfortunately, doctors could do little to
help those with syphilis. The best available treatment consisted, essentially, of poi-
soning patients with arsenic and other heavy metals in the hopes that these poisons
would kill whatever had caused the disease before they killed the patients.

In 1905, scientists first identified the bacterium Treponema pallidum as the
cause of syphilis. Five years later, Paul Ehrlich discovered the drug Salvarsan as a
cure for syphilis. An arsenic derivative, Salvarsan was the first drug to successfully
target a specific microorganism. As such, it opened the modern era of medical
therapeutics. After this point, those who sought early treatment for syphilis could
expect a complete cure, whereas those who put off treatment risked irreversible
neurological damage and a horrible death.

The history of Salvarsan and syphilis provided ideological support for a med-
ical model of mental illness. This medical model consists of four assumptions
about the nature of mental illness (Scheff, 1984):

1. Objectively measurable conditions define mental illness, in the same way
that the presence of a specific bacterium defines syphilis.

2. Mental illness stems largely or solely from something within individual
psychology or biology, even if doctors (such as those who studied syphilis
before 1905) don’t yet know its sources.

3. Mental illness, like syphilis, will worsen if left untreated but may diminish or
disappear if treated promptly by a medical authority.

4. Treating mental illness, like treating syphilis, rarely harms patients, so it is
safer to treat someone who might really be healthy than refrain from treating
someone who might really be ill.

The Sociological Model of Mental Illness

The sociological model of mental illness questions each of these assumptions (see
“Key Concepts: Models of Mental Illness,” p. 147). Perhaps most important, sociol-
ogists argue that definitions of mental illness, like the definitions of physical illness
and disability discussed in Chapters 5 and 6, reflect subjective social judgments
more than objective scientific measurements of biological problems.

What do we mean when we say someone is mentally ill? Why do we diagnose
as mentally ill people as disparate as a teenager who uses drugs, a woman who
hears voices, and a man who tries to kill himself? According to sociologist Allan
Horwitz (1982), behavior becomes labeled mental illness when persons in posi-
tions of power consider that behavior both unacceptable and inherently incom-
prehensible. In contrast, we tend to define behavior as crime when we consider it
unacceptable but comprehensible; we don’t approve of theft, but we understand
greed as a motive. (The judgment of “not guilty by reason of insanity” falls on the
border between crime and mental illness.) Similarly, we might not understand

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147T H E S O C I O L O G Y O F M E N TA L I L L N E S S

why, for example, physicists might check and recheck measurements multiple
times per hour, but we assume that those with appropriate training consider these
behaviors reasonable.

According to Peggy Thoits (1985), behavior leads to the label of mental illness
when it violates cognitive norms, performance norms, or feeling norms.
Someone who thinks he is Napoleon Bonaparte, for example, breaks cognitive
norms (i.e., norms regarding how a person should think), and someone who can’t
hold a job breaks norms regarding proper role performance. Thoits argues that
the last category—breaking feeling norms—accounts for most behavior labeled
mental illness. Feeling norms refer to socially defined expectations regarding the
“range, intensity, and duration of feelings that are appropriate to given situations”
and regarding how people should express those feelings (Thoits, 1985:224). For
example, laughing is highly inappropriate at a Methodist funeral but perfectly
acceptable at an Irish wake, and feeling sad that your pet cat died is considered
reasonable for a few days but unreasonable after a year.

Different social groups consider different behaviors comprehensible and ac-
ceptable. The friends of a drug-using teenager, for example, might consider drug
use a reasonable way to reduce stress or have fun. Their views, however, have
little impact on public definitions of drug use. Similarly, members of one church
might consider a woman who reports talking to Jesus a saint, whereas members
of another church would consider her mentally ill. The woman’s fate will depend
on how much power these opposing groups have over her life. The definition of
mental illness, then, reflects not only socially accepted ideas regarding behavior but
also the relative power of those who hold opposing ideas.

Researchers who use this sociological definition of mental illness don’t mean
to imply that emotional distress does not exist or that people don’t feel real pain

Models of Mental Illness

The Medical Model The Sociological Model

Mental illness is defined by objectively
measurable conditions.

Mental illness is defined through
subjective social judgments.

Mental illness stems largely or solely
from something within individual
psychology or biology.

Mental illness reflects a particular
social setting as well as individual
behavior or biology.

Mental illness will worsen if left
untreated but may improve or disappear
if treated promptly by a medical
authority.

Persons labeled mentally ill may
experience improvement regardless
of treatment, and treatment may not
help.

Medical treatment of mental illness can
never harm patients.

Medical treatment for mental illness
can sometimes harm patients.

KEY CONCEPTS

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148 C H A P T E R 7

when they can’t meet social expectations for thought, behavior, or emotions. Nor
do these researchers mean to imply that biology has no effect on behavior or
thought. They do, however, question the purpose and consequences of using med-
ical language to describe such problems, and they question why we label certain
behaviors and individuals but not others.

Not all sociologists raise these questions, however. Many, especially those
working in health care settings and in epidemiology, use a sociology in med-
icine approach and use essentially medical definitions of mental illness in their
research and writing. Nevertheless, sociologists are united in assuming that mental
illness, like physical illness and disability, stems at least partially from social life
rather than solely from individual psychology or biology.

The Problem of Diagnosis

The sociological model of mental illness gains credibility when we look at re-
search on the problems with psychiatric diagnosis. These problems became a po-
litical embarrassment for psychiatrists (medical doctors who specialize in treating
mental illness) after a famous experiment by psychologist David Rosenhan (1973).
Rosenhan and seven of his assistants had presented themselves to 12 mental hos-
pitals and complained of hearing voices but otherwise acted normally. The hos-
pitals diagnosed all eight “pseudopatients” as mentally ill and admitted them for
treatment. After they were admitted, all behaved normally, leading 30% of the
other patients to identify them as frauds. The staff, however, never noticed anything
unusual about these pseudopatients. It took an average of 19 days for them to win
their release, with their symptoms declared “in remission.”

When these results were published, psychiatrists objected vociferously that the
results were some sort of fluke. In response, Rosenhan agreed to send pseudopa-
tients to another hospital and challenged the staff at that hospital to identify the
pseudopatients. During the three months of the experiment, the staff identified
42% of their new patients as pseudopatients even though Rosenhan really had not
sent any!

These two experiments vividly demonstrate the subjective nature of psychi-
atric diagnosis and its susceptibility to social expectations. Within the context of a
mental hospital, staff members quite reasonably assume patients are ill and inter-
pret everything patients do accordingly. When, for example, one bored pseudopa-
tient began taking notes, a worker officially recorded this “note-taking behavior”
as a symptom. Conversely, when staff members expected to find pseudopatients,
they interpreted similar behaviors as signs of mental health.

The problems with diagnosis are particularly acute when therapists and pa-
tients lack a shared culture. With the rise in immigration to the United States over
the past generation, doctors increasingly must diagnose and treat patients whose
symptoms don’t even appear in Western textbooks (Goleman, 1995). For exam-
ple, a common symptom of psychological problems in Japan is a debilitating fear
that one’s body will embarrass someone else, while a common symptom among
Malaysian men is intense fear that their penises will recede into the body and

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149T H E S O C I O L O G Y O F M E N TA L I L L N E S S

somehow kill them. The American Psychiatric Association (APA) now offers all its
members materials designed to help them consider cultural and ethnic factors in
their work and require training programs to cover cross-cultural issues (American
Psychiatric Association, 2018).

The Politics of Diagnosis

Over the years, psychiatrists have worked to reduce problems with diagnosis by re-
fining the definitions of illnesses in the Diagnostic and Statistical Manual of Men-
tal Disorders (DSM), first published by the APA in 1952. Virtually all psychiatrists
use this manual for assigning diagnoses, as do most other clinicians, because insurers
usually require a DSM diagnosis before they will reimburse clinicians for care.

The DSM and the subsequent DSM-II, published in 1968, instructed clini-
cians to reach diagnoses based on the clinicians’ inferences about such intrapsychic
processes as defenses, repression, and transference. Because clinicians can’t measure
these processes, the same behavior often elicited quite different diagnoses from
different clinicians (Helzer et al., 1977).

Partly because of these problems, in 1974, the APA announced its decision
to revise the DSM-II (Spitzer, Williams, and Skodol, 1980). Ironically, although
the resulting DSM-III, published in 1980, was designed to quiet questions about
the ambiguities of psychiatric diagnosis, it instead illuminated those ambiguities
because its writing became an overtly political battle involving active lobbying by
both professional and lay groups (Grob and Horwitz, 2009). This battle revealed
wide differences among clinicians regarding what behaviors signified mental ill-
ness, what caused those behaviors, who should treat them, and how they should
be treated.

To encourage support for the DSM-III and avoid open political battles among
psychiatrists, its authors decided to stress symptomatology and avoid discussing
either causation or treatment (Kirk, 1992). In addition, to increase the odds that
clinicians would use the DSM-III, the authors described the various diagnoses
based not on available research but on the consensus among practicing psychia-
trists. These two strategies, they hoped, would produce a widely used and highly
reliable document. Reliability refers to the likelihood that different people who
use the same measure will reach the same conclusions—in this case, that differ-
ent clinicians, seeing the same patient, would reach the same diagnosis. Yet even
this modest goal was not achieved because studies continue to find high rates of
disagreement over diagnosis (Kirk, 1992; Mirowsky and Ross, 1989). Moreover,
reliability in the absence of validity is not particularly useful. Validity refers to
the likelihood that a given measure accurately reflects what those who use the
measure believe it reflects—in this case, that persons identified by the DSM-III as
having a certain illness actually have that illness. As Phil Brown (1990:393) notes,
“Anyone can achieve . . . reliability by teaching all people the ‘wrong’ material, and
getting them to all agree on it. . . . The witch trials [of earlier centuries] showed a
much higher degree of interrater reliability than any DSM category, yet we would
not impute any validity to those social diagnoses.”

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150 C H A P T E R 7

Despite all of these problems, the DSM-III and the subsequent DSM-IV
gained great support among clinicians because they served clinicians’ political
needs (Horwitz, 2002). By stressing (even if inaccurately) the “objective” nature
of diagnosis, clinicians were able to gain respect in the medical world, access to
reimbursement from insurance companies, and funding from agencies that sponsor
research. And by assigning almost 400 discrete diagnoses to all the different client
groups and combinations of symptoms treated by different types of clinicians, they
could gain widespread acceptance of the system from both clinicians and clients.

The current DSM-V was published in 2013. As with previous editions, crit-
ics argue that evidence for the validity of diagnostic categories remains limited
and that the new edition will lead to further medicalization and overtreatment
of everyday life struggles (Frances, 2012). For example, unlike DSM-IV, DSM-V
defines ordinary forgetfulness among older adults, grieving for more than two
months after a loved one dies, and what many would describe as “temper tan-
trums” as new forms of mental illness.

A HISTORY OF TREATMENT

The history of treatment for mental illness further reveals the role social values
play in medical responses to problematic behavior. In this section, we trace the
treatment of mental illness from the prescientific era to the present.

Before the Scientific Era

Although the concept of mental illness is relatively new, all societies throughout
history have had individuals whose behavior set them apart as unacceptably and
incomprehensibly different. However, premodern societies more often could find
informal ways of coping with such individuals (Horwitz, 1982). First, premodern
societies could offer acceptable, low-level roles to those whose thought patterns
and behaviors differed from the norm. Second, because work roles rarely required
individuals to function in highly structured and regimented ways, many troubled
individuals could perform at marginally acceptable levels. Third, in premodern
societies, work occurred within the context of the family, whether at home or
in fields or forests. As a result, families could watch over those whose emotional
or cognitive problems interfered with their abilities to care for themselves. These
three factors enabled families to normalize mental illness—that is, to dismiss
problematic behavior as mere eccentricity. As a result, unless individuals behaved
violently or caused problems for civil authorities, their families and communities
could deal with them informally.

In some cases, however, individuals behaved too unacceptably or incompre-
hensibly for their communities to normalize. In these cases—and as with all ill-
nesses (as described in Chapter 5)—communities needed to find explanations to
help them understand why such problems struck some people and not others.
Such explanations helped to make the world seem more predictable and safe by

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151T H E S O C I O L O G Y O F M E N TA L I L L N E S S

convincing the community that such bad things would never happen to “good
people” like themselves.

Until the modern scientific age, people typically viewed disturbing behavior
as a punishment for sin or for violating a taboo, as a sign that the afflicted individ-
ual was a witch, or as a result of evildoing by devils, spirits, or witches. Therefore,
the public assigned treatment to religious authorities—whether shamans, witch
doctors, or priests—who relied on prayer, exorcism, spells, and treatments such as
bloodletting or trepanning (drilling a hole in the skull to let “bad spirits” out). Re-
ligious control of socially disturbing behavior reached a spectacular climax with
the witchcraft trials of the 15th to 17th centuries, during which religious author-
ities brutally killed at least 100,000 people, including some we would now label as
mentally ill (Barstow, 1994).

As a capitalist economy began to develop, both religious control and in-
formal social control began to decline (Horwitz, 1982; Scull, 1977). Under
capitalism, work moved from home and farm to workshops and factories, mak-
ing it more difficult for families to care informally for problematic relatives. In
addition, a capitalist economy could less readily absorb those whose produc-
tivity could not be scheduled and regimented. At the same time, widespread
migration from the countryside to cities weakened families and other social
support systems, as did migration from Europe to the United States in subse-
quent centuries. Meanwhile, other changes in society weakened religious sys-
tems of social control.

These changes fostered a need for new, formal institutions to address mental
illness. By the end of the 18th century, however, only a few hospitals devoted to
treating people with mental illnesses existed along with a few private “madhouses”
run by doctors for profit. Instead, most of those we would now label mentally ill
were housed with poor people, people with disabilities, and criminals in the newly
opened network of public almshouses, or poorhouses.

Conditions in both almshouses and madhouses were generally miserable,
but they were especially bad for those considered mentally ill. Doctors and
the public typically believed that persons with mental illness were incur-
able and were essentially animals. As a result, institutions treated people with
mental illnesses like animals—chaining them for years to basement walls or
cells, often without clothing or proper food, and beating them if they caused
problems.

The Rise and Decline of Moral Treatment

By the late 18th century, however, attitudes toward persons with mental illness
began to moderate (Scull, 1989:96–117). In place of punishment and warehous-
ing, reformers proposed moral treatment: teaching individuals to live in society
by showing them kindness, giving them opportunities to work and play, and in
general treating mental illness more as a moral rather than medical issue. The stun-
ning successes that resulted convinced the public that mental illness was curable.
The first American hospital designed to provide moral treatment, the Friends’ (or
Quakers’) Asylum, was founded in 1817.

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152 C H A P T E R 7

Despite this strong beginning, moral treatment in the end could not compete
with medical models of mental illness (Scull, 1989:137–161). Because those who
promoted moral treatment continued to use the language of medicine to talk of
illnesses and cures, medical doctors could argue successfully that only they should
control this field. In addition, because moral treatment required only kindness and
sensitivity, which theoretically any professionals could offer, no professional group
could claim greater expertise than doctors. As a result, by 1840, doctors largely
had gained control over the field of mental illness both in the United States and
Europe.

As care gradually shifted from laypersons to doctors, custodial care began to
replace moral treatment. This shift reflected the growing belief that illness was
genetic and untreatable, as well as the public’s greater interest in controlling people
with mental illnesses—especially if they were poor, nonwhite, or immigrant—
rather than treating them.

By the 1870s, moral treatment had been abandoned. Yet the number of men-
tal hospitals continued to grow exponentially (Rothman, 1971). Historians re-
fer to this change, and similar but earlier developments in Europe, as the Great
Confinement.

Benjamin Rush, the “father of American psychiatry,” invented this device to treat mental illness through
removing distractions from the patient.

Be
ttm

an
n/

Co
rb

is

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153T H E S O C I O L O G Y O F M E N TA L I L L N E S S

The Great Confinement drew energy from the well-meaning efforts of re-
formers to close down the brutal almshouses and provide facilities specifically de-
signed to care for people with mental illnesses instead of warehousing them with
criminals, persons with disabilities, and poor people (Sutton, 1991). Because no
agreed-upon definitions of mental illness existed, however, families and commu-
nities found it relatively easy to move the troublesome, poor, old, or sick into the
newly established mental hospitals (Sutton, 1991). As a result, most of those labeled
mentally ill continued to find themselves housed with others whom society had
rejected. The only difference was that instead of residing in institutions filled with
a varied group of marginalized individuals, they now lived in large institutions
officially devoted to the “care” of people with mental illnesses.

Freud and Psychoanalysis

By the beginning of the 20th century, then, doctors controlled the mental illness
field. Yet doctors were deeply divided between those who assumed mental ill-
ness stemmed from psychological causes and those who assumed it had biological
causes.

This split grew wider with the rise of Freudian psychiatry. According to Sig-
mund Freud, a Viennese doctor, to become a mentally healthy adult, one had to
respond successfully to a series of developmental issues. Each issue occurred at a
specific stage, with each stage linked to biological changes in the body and in-
vested with sexual meanings. For example, Freud believed that during the phallic
stage (ages three through six) boys naturally begin noticing genitalia, experiencing
sexual attraction toward their mothers, and therefore viewing their fathers as rivals.
To become healthy adults, he argued, boys had to conclude that girls lack penises
because their fathers castrated them after some wrongdoing. To avoid the same
fate, boys must abandon their attraction for their mothers and instead pursue their
fathers’ love by adopting their fathers’ values. Through this process, Freud argued,
boys develop a strong internal sense of morality—something that girls, lacking
penises, can never do.

Freud based this theory on his interpretations of the lives and dreams of his
upper-middle-class patients; no scientific data underpin this theory. Looking back
at this theory from the present, it is hard to comprehend how anyone could have
believed in such notions. Yet the theory remained popular for decades, undoubt-
edly because it both reflected and supported popular ideas about men’s superior
bodies, intellect, and moral virtues.

For those who accepted Freud’s theory, the only way to cure mental illness
was to help patients resolve their developmental crises. To do so, Freud and his
followers relied on psychoanalysis, a time-consuming and expensive form of psy-
chotherapy geared to patients without major mental illnesses. In psychoanalysis,
patients recounted their dreams and told a (usually silent) therapist whatever came
to mind for the purpose of recovering hidden early memories and understanding
their unconscious motivations.

Because psychoanalysis was so costly, few people could afford to use it. By the
1950s, most mental patients instead received new, far cheaper physical interventions

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154 C H A P T E R 7

such as electroconvulsive (shock) therapy or lobotomies (Valenstein, 1986). Nei-
ther therapy received scientific testing before becoming popular and both could
cause brain damage (Valenstein, 1986). At any rate, therapy of any sort occupied
only a minuscule proportion of patients’ time in mental hospitals. Instead, patients
spent their days locked in crowded wards with little other than radios or televi-
sions to ease their boredom.

The Antipsychiatry Critique

By the middle of the 20th century, mental hospitals had become a huge and largely
unsuccessful system (Mechanic, 1989). Patients with mental illnesses occupied half of
all hospital beds in the United States. Virtually all were kept in public mental hospi-
tals; insurance rarely covered mental health care, so private hospitals had no interest
in the field. At their peak in 1955, public mental hospitals held 558,000 patients, who
stayed an average of eight years. Most were involuntarily confined and involuntarily
treated, often with lobotomies as well as drugs that kept them highly sedated.

Beginning in the 1960s, however, many people challenged this system as the
civil rights, antiwar, and feminist movements all promoted both individual rights
and questioning authority. These ideas contributed to a growing critique of mental
health treatment by sociologists, psychologists, and even some psychiatrists such as
R. D. Laing (1967).

One of the most powerful critiques of large mental institutions appeared in a
classic study by sociologist Erving Goffman (1961). Goffman’s work fell within the
tradition of symbolic interactionism theory. According to this theory, individual
identity develops through an ongoing process in which individuals see themselves
through the eyes of others and learn through social interactions to adopt the values
of their community and to measure themselves against those values. In this way, a
self-fulfilling prophecy is created through which individuals become what they
are already believed to be. So, for example, children who constantly hear that they are
too stupid to succeed in school might conclude that it is senseless to attend classes
or study. As a result, they fail in school, thus fulfilling the prophecies about them.

Goffman used symbolic interactionism theory to analyze mental hospitals and
the experiences of mental patients. He pointed out that mental hospitals—like
the military, prisons, and monasteries—were total institutions in which a large
number of individuals lead highly regimented lives segregated from the outside
world. Goffman argued that these institutions necessarily led to mortification—
that is, individuals’ sense of self was damaged and replaced by personalities adapted
to institutional life.

Several aspects of institutional life foster mortification. Persons confined to
mental hospitals lose the supports that usually give people a sense of self. Cut
off from work and family, these individuals’ only available role is that of patient.
That role, meanwhile, is a master status—a status considered so central that it
overwhelms all other aspects of individual identity. Within the mental hospital,
a patient is viewed solely as a patient—not as a mother or father, husband or
wife, worker or student, radical or conservative. According to Goffman’s observa-
tions, and as in Rosenhan’s (1973) experiment, all behavior becomes interpreted

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155T H E S O C I O L O G Y O F M E N TA L I L L N E S S

through the lens of illness. In addition, because each staff member must manage
many patients, staff members lack the time to individualize care. In these circum-
stances, patients typically lose the right to choose what to wear, when to awaken
or sleep, when and what to eat, and so on. Moreover, all of these activities occur
in the company of many others. Individuals thus not only experience a sense
of powerlessness but also can lose a sense of their identity—their desires, needs,
and personalities—in the mass of others. As a result, patients experience
depersonalization—a feeling that they no longer are fully human or no longer
considered fully human by others. At the same time, the hierarchical nature of
mental hospitals reinforces the distinctions between inmates and staff and con-
stantly reminds all parties of the gulf between them. Consequently, patients can
avoid punishment and eventually win release only by stifling their individuality
and accepting the institution’s beliefs and rules. These forces producing mortifica-
tion are so strong that even Rosenhan’s pseudopatients—knowing themselves sane
and hospitalized only briefly—experienced depersonalization.

Implicit in Goffman’s work is the idea that mental hospitals may be one
of the worst environments for treating mental problems. Later research sup-
ports this conclusion. A review of 10 controlled studies on alternatives to
hospitalization—including halfway houses, day care, and supervised group
apartments—found that all could boast equal or better results than those of tra-
ditional hospitalization, as measured by subsequent employment, reintegration
into the community, life satisfaction, and extent of symptomatology (Kiesler
and Sibulkin, 1987).

Deinstitutionalization

By the time the antipsychiatry critique appeared, the Great Confinement already
had begun to wane. Beginning in 1955, the number of mental hospital inmates
declined steadily as treatment shifted from inpatient care (in hospitals) to outpa-
tient care. This process of moving mental health care away from large institutions,
known as deinstitutionalization, gained further support during the 1970s as
mental patients successfully fought in the courts against involuntary treatment,
against hospitals that provided custodial care rather than therapy, and for the right
to treatment in the “least restrictive setting” appropriate for their care.

Those who adopt a medical model of illness typically assume that deinstitu-
tionalization resulted from the introduction, beginning in 1954, of various drugs
that were believed to reduce severe psychiatric symptoms. Yet the number of pa-
tients in public mental hospitals did not fall rapidly until more than a decade
after these drugs were introduced. In fact, the sharp decline in institutionalization
is better explained by changes in federal funding that enabled some chronically
mentally ill persons to live on their own while encouraging nursing homes and
private hospitals to seek other chronically mentally ill persons as residents—paid
for by the federal government (Mechanic, 1999; Mechanic and Rochefort, 1990).

Unfortunately, the promise that deinstitutionalization would herald a new era
in which individuals would receive appropriate therapy in the community and
avoid the stigma, degradation, and mortification of mental hospitalization has

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156 C H A P T E R 7

been met only partially. Few services are available outside of psychiatric hospitals
to help individuals who have serious mental illnesses (Kessler et al., 2005b).

Meanwhile, as government funding for the nation’s health care system de-
clined, funding for the criminal justice system dramatically increased (Human
Rights Watch, 2009). As a result, public mental hospitals now find that they can
most easily pay their bills by accepting patients sent to them by the criminal justice
system, whether mentally ill prison inmates, people found innocent by reason of
insanity, or “sex predators,” who under recent laws can be involuntarily confined
even after finishing their sentences. These changes reflect the continuing stigma of
mental illness. “Ethical Debate: Mental Illness and Gun Control,” further illustrates
the consequences of that stigma.

Simultaneously with these changes, the federal government also reduced fund-
ing for low-income housing. As a result, many mentally ill persons who can’t afford
treatment also can’t find housing. Consequently, many persons with chronic mental
illness now cycle between homelessness, jail time when they prove troublesome for
local authorities, and brief stays in public mental hospitals (Earley, 2007). According
to the U.S. Department of Justice, more than 40% of jail inmates and 30% of prison
inmates have a history of mental illness (Bureau of Justice Statistics, 2017).

Despite these severe gaps in our mental health system, however, observers
generally agree that deinstitutionalization improved the quality of life for most
seriously mentally ill persons (Grob, 1997).

Mental Illness and Gun Control

In February 2018, Nikolas Cruz went on a shooting spree in his Parkland, Florida, high
school, killing 17 people and injuring another 17 within less than an hour.

It is not surprising that many stricter laws (or stricter enforcement of laws) to keep
guns out of the hands of persons with mental illnesses.

In fact, federal law already forbids persons who have ever been declared mentally
ill from owning guns. However, compliance with the law—which is based on voluntary
reporting by mental health professionals to a national database—is low. But murder
rates in the United States are far too high, and if such laws could reduce these deaths,
enacting them would appear to be the ethical thing to do.

On the other hand, forbidding gun ownership based on a history of mental illness
raises various ethical (and practical) issues. Most important, most persons with mental
illness have never committed a violent act. In fact, mental illness is a poor predictor of
violence (Kangas and Calvert, 2014; McGinty et al., 2014). Instead, the best predictors
of violence are previous arrests for behaviors such as domestic violence, assault, or
dangerously inappropriate behavior while drunk (Kangas and Calvert, 2014; McGinty
et al., 2014).

In addition, if mental health professionals are legally forced to report individuals
to a national database, potential clients may shy away from treatment. Meanwhile,
those already in treatment may feel betrayed if they learn that their doctors or
counselors reported them, and they may decide to break off treatment. Yet treatment
can help individuals recover from mental illness and reduce suicidal or homicidal
thoughts (Kangas and Calvert, 2014).

ETHICAL DEBATE

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157T H E S O C I O L O G Y O F M E N TA L I L L N E S S

The Rise of Managed Care

Beginning in the 1990s, insurance coverage for mental illness started to become
more common, primarily through managed care organizations (MCOs).
Managed care is described more fully in Chapter 8 but essentially refers to any
system that controls health care spending by closely monitoring where patients re-
ceive health care, what sorts of providers patients use, what treatments they receive,
and with what consequences.

Research suggests that managed care can reduce the costs of mental
health treatment, at least for less severe illnesses, by encouraging shorter rather
than longer inpatient stays, outpatient rather than inpatient care, conservative
rather than aggressive interventions, and use of lower-level clinicians (such as
social workers) rather than psychologists or psychiatrists (Mechanic, 1995,
1999:160–162). According to David Mechanic, probably the most influential
sociologist in the area of mental health care, it also may be able to improve the
quality of care:

By reducing inpatient admissions and length of stay, managed care
programs potentially make available considerable resources for substitute
services and other types of care. Managed care provides incentives to
seek closer integration between inpatient and outpatient and primary
and specialized services to achieve cost-effective substitutions.

Finally, laws that link mental illness with violence can increase the stigma
experienced by those who live with it. Moreover, that stigma may be lifelong: It is
hard to imagine how any national database could institute procedures for reliably
identifying individuals who have recovered from mental illness and for removing
those individuals’ names from the database. Certainly, no such procedures exist
currently. Thus, legal requirements to report clients would in some cases require
health care workers to break professional codes of ethics that require them to
preserve confidentiality and to avoid harming their clients (Kangas and Calvert,
2014).

Sociological Questions

1. What social views and values about mental illness are reflected in laws and
proposals aimed at keeping guns away from those diagnosed with it?

2. Who benefits from these laws and proposed laws? Why would the National
Rifle Association favor them? Why aren’t there more proposals to forbid
gun ownership among those convicted of domestic violence or of drunken
behavior?

3. What are the intended consequences of prohibiting gun ownership among
individuals diagnosed with mental illness? What are the potential unintended
social, economic, political, and health consequences of this policy?

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158 C H A P T E R 7

Managed care also offers the potential to bring . . . science-based
mental health care into the mental health system more quickly than
traditional programs. . . . Many individual practitioners resist practice
guidelines and scientific findings, preferring their own clinical
experience, but managed care can put systems in place to measure
performance and to enforce adherence to established standards.
(1997:45–46)

But managed care also carries risks. Its emphasis on cost containment affects
who offers mental health services, for how long, and of what type (Scheid, 2001).
MCOs encourage the use of clinicians who charge less per hour, preferring those
with master’s degrees to those with doctorates and preferring those with doctor-
ates to those with medical degrees. To further restrain costs, MCOs press clinicians
to offer only short-term treatment of immediate problems rather than long-term
treatment of underlying problems. As a result, therapists increasingly prescribe
medications even if “talk therapies” might be more useful.

Managed care also has affected how mental disorders are diagnosed. One way
managed care controls costs is by deciding in advance, based on data from past
patients, how much and what type of care patients with specific diagnoses should
receive. For this system to work, clinicians must assign a diagnosis to each patient.
This in turn reinforces the medical model of mental illness and the idea that every
person who seeks mental health services has a specific, diagnosable mental illness.

At the same time, to contain costs, MCOs have often opposed both new di-
agnoses and any broadening of the criteria for existing diagnoses (Horwitz, 2002).
For example, some MCOs deny treatment to individuals who have fewer than five
symptoms on a depression checklist even if individuals’ listed symptoms are severe
and even if they have other, unlisted symptoms.

The Remedicalization of Mental Illness

Despite the efforts of MCOs to limit psychiatric diagnoses and treatment, recent
years have seen a new remedicalization of mental illness (Carlat, 2010; Kirsch,
2011). Psychiatrists have continued to develop new treatments as well as new the-
ories of mental illness that downplay any social causes and instead stress biochemi-
cal, neurological, or genetic abnormalities. Meanwhile, the mass media along with
the medical and pharmaceutical establishments have “sold” the medicalization of
mental illness to the public (Conrad, 2005, 2013); the majority of the public now
believe that mental illness is a biological problem (Pescosolido, 2013).

Yet the data for the “biological revolution” in mental health is weak. Despite
decades of research, scientists have failed to find evidence demonstrating any brain
abnormalities that might explain mental illness (Carlat, 2010; Kirsch, 2011). More-
over, to the extent that brains of those labeled mentally ill differ from those of
other people, the differences appear to be caused either by the drugs used to treat
mental illness or by other factors such as poor nutrition.

Despite these weaknesses in the biological model of mental illness, most psy-
chiatrists have adopted it (Whitaker, 2011). As a result, psychiatrists now present

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159T H E S O C I O L O G Y O F M E N TA L I L L N E S S

a more united front in their struggles for control against other mental health
occupations such as psychology and social work. In addition, they have increased
their political power relative to these other occupations because, having declared
mental illness a biological problem, they now can argue that only persons trained
in medicine can properly diagnose and treat it (Brown, 1990).

Reflecting this medical model, both psychiatrists and psychologists now of-
ten rely on psychoactive drugs to both diagnose and treat mental illness (Grob
and Horwitz, 2009). For example, doctors now commonly diagnose patients with
clinical depression whenever patients respond favorably to antidepressant drugs
such as Prozac, even if the patients don’t meet standard criteria for that diagnosis.
Yet most people feel better whenever they take a mood-enhancing drug, whether
it is Prozac or cocaine. And many people feel better even if they are given only a
placebo.

Most of the drugs now used to treat persons with mental illness fall into one
of three main categories: antipsychotics, mood stabilizers, or antidepressants. The
use of antidepressants has grown particularly rapidly, especially among women, as
Table 7.2 shows (National Center for Health Statistics).

Compared to older drugs for depression, the most common current
antidepressants—known as selective serotonin reuptake inhibitors (SSRIs)—carry
fewer side effects and can’t be taken to commit suicide, although they increase the
odds of committing suicide by some other means. Moreover, statistical analyses
based on all data from research on SSRIs—rather than only on data that phar-
maceutical companies choose to publish—suggest that the drugs may offer no
benefits at all: When patients in research studies are given either drugs or placebos
that carry the same side effects as the drugs, both the placebos and drugs are mildly
effective (Kirsch, 2011). Moreover, in the long run the drugs may cause harm by
changing the brain’s ability to moderate emotions (Whitaker, 2011). Nevertheless,

Antidepressant Use in the Past 30 Days, United StatesTABLE 7.2

Use of antidepressants has climbed dramatically since the 1980s, especially
among women and those over age 45.

Year

1988–1994 (%) 1999–2002 (%) 2003–2006 (%) 2007–2010 (%)

Men

18–44 years 1.0* 3.6 3.5 4.4

45–64 years 2.3* 7.0 10.5 8.9

65 years and over 2.3* 7.2 9.8 9.4

Women

18–44 years 2.3 8.5 11.4 11.3

45–64 years 4.6 13.8 20.9 19.6

65 years and over 3.5 10.8 13.7 17.0

*Age-adjusted data, for civilian noninstitutionalized population only.

SOURCE: National Center for Health Statistics (2017a)

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160 C H A P T E R 7

drug companies have proven highly successful at convincing both consumers and
clinicians to redefine normal shyness as “social anxiety disorder” and to believe
that it is best treated with SSRIs (Abramson, 2004; Lane, 2007).

Serious questions have also been raised about the increased use of antipsy-
chotics. These drugs are now the top-selling drugs in the United States despite
potential side effects that include depression, uncontrollable drooling, and obesity.
Moreover, doctors increasingly prescribe them to children, even though the drugs
have only been tested on adults. Nevertheless, between 2000 and 2007, usage of
antipsychotics doubled among children under age five who had private insurance,
although most experts believe that the diseases these drugs were designed to treat
(such as schizophrenia) rarely begin before adolescence (Wilson, 2010a).

Mental Health and the Affordable Care Act

As the remedicalization of mental illness changed Americans’ ideas about the men-
tal health, public and political pressure grew to put mental health care on a par
with physical health care. This view was made law in the 2010 Affordable Care
Act (ACA) (discussed further in Chapter 8). Under the ACA, both private insurers
and Medicaid (the government-funded insurance program for the poorest Amer-
icans) were required to offer comparable coverage for mental and physical health
problems, thus increasing coverage for many Americans.

At the same time, by definition the ACA could not help the many Americans
who lack any health insurance. In addition, even those with insurance still often
find it difficult to obtain care because many providers will not take new patients,
accept only certain insurance plans, or take only patients who can pay out of
pocket (NAMI, 2016). Meanwhile, many elected officials are pushing to end or
drastically reduce the ACA, which would lead to a dramatic reduction in coverage.

Recent Challenges to Medical Diagnoses and Treatment

Over the last decade, two challenges to the current diagnostic and treatment sys-
tems have emerged (Luhrman, 2015). First, the British Psychological Society (BPS)
published two major position statements essentially calling for the abandonment
of the very idea of psychiatric diagnosis—at least for bipolar disorder, depression,
schizophrenia, and psychosis (Cooke, 2017; Jones, 2010). The BPS argued that the
feelings and experiences we label as symptoms of mental illness (such as sadness,
elation, mood swings, paranoia, even hallucinations and hearing voices) are not
uncommon. Instead, they occur widely and on a spectrum, with no clear dividing
line between health and illness. Even among those we might label mentally ill,
many experience only mild “symptoms” and are able to maintain a normal life.
Moreover, these “symptoms” seem more clearly caused by deprivation and trauma
than by any biological conditions. As a result, the BPS argued, individuals can best
be aided by talking with therapists who help them make sense of their experiences
without assigning diagnoses and who prescribe psychiatric drugs only briefly if at
all. This philosophy underlies the work of the Hearing Voices Network, which
offers both professional help and peer support to those who hear voices.

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161T H E S O C I O L O G Y O F M E N TA L I L L N E S S

Second, in 2013 the director of the U.S. National Institute for Mental Health
declared that years of scientific research had failed to find any specific biological
markers for any psychiatric diagnoses. As a result, the institute would no longer
fund research based on diagnostic categories and would instead focus on how
genes, cells, and other biological elements may regulate emotions and behaviors in
all people, not just those diagnosed with a mental illness. Three years later, how-
ever, an article published in Nature—the top journal in the biological sciences—
reported that a set of genes had been identified that significantly increased the risk
of schizophrenia (Sekar et al., 2016). These findings may reinvigorate interest in
biological research into mental illness if they prove to be accurate—unlike previ-
ous reports linking schizophrenia to genes.

THE EXPERIENCE OF MENTAL ILLNESS

The previous sections described the nature, causes, distribution, treatment, and
history of mental illness. Next, we look at the experience of mental illness.

Becoming a Mental Patient

As already noted, in any given year, 31% of working-age adults experience a diag-
nosable mental illness, but only 40% of these receive even basic treatment (Kessler
et al., 2005a, 2005b). Ironically, as the stigma among the middle class against
seeking counseling for minor problems has diminished and insurance coverage has
increased, treatment has increased among basically well-functioning individuals
who experience situational stress, sadness, or lowered self-esteem (Kessler et al.,
2005b). Nearly half of those who receive outpatient treatment have no mental
disorder that can be identified through surveys, although some of these might have
disorders that could be identified by clinicians (Kessler et al., 2005b).

What explains this discrepancy between experiencing symptoms and receiv-
ing treatment? According to Allan Horwitz, “Symptoms of mental disorder are
usually vague, ambiguous, and open to a number of varying interpretations. . . .
Labels of ‘mental illness,’ ‘madness,’ or ‘psychological disturbance’ are applied
only after alternative interpretations have failed to make sense of the behavior”
(1982:31). The key questions, then, are how and why does this happen?

Self-Labeling Regardless of how others define their situation, at least initially,
individuals usually define themselves as mentally healthy. Doing so is especially
common among individuals whose symptoms are mild, who have never been
treated for mental illness, who believe treatment would be stigmatizing, and who
still hold culturally valued roles as parents, workers, and the like (Thoits, 2016).
Individuals may downplay their situations as “problems” rather than illness; offer
alternative explanations for their behavior and emotions (“anyone would be angry
in these circumstances”); distract themselves from their troubles through alco-
hol, drugs, or a range of activities; and reject any psychiatric diagnoses offered by
friends, family members, or mental health workers as inaccurate or biased (Karp

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162 C H A P T E R 7

and Birk, 2013; Moses, 2009; Thoits, 2016). For example, one 14-year-old boy
who was receiving treatment told an interviewer:

I have problems I need to work through, but other than that, I’m
fine. Just regular family problems and daily personal problems. I don’t
consider those big issues where I need to take medication for it. Other
people see that for me, but I think the medication is just making it
worse. (Moses, 2009:574)

In addition, individuals typically try to avoid being labeled as needing psychi-
atric care by engaging in feeling work: actively working to make their emotions
match social expectations (Hochschild, 1983; Thoits, 1985).

Feeling work can take four forms. First, individuals can change or reinterpret
the situation that is causing them to have feelings others consider inappropriate.
For example, a working woman distracted from her work by worries about how
to care for an ill parent—and distracted while with her parent by worries about
her work—can quit her job. Second, individuals can change their emotions
physiologically through drugs, meditation, biofeedback, or other methods. The
woman with the ill parent, for example, could drink alcohol or take Prozac to
control anxiety. Third, individuals can change their behavior, acting as if they
feel more appropriate emotions than they really do. Fourth, individuals can re-
interpret their feelings, telling themselves, for example, that they only feel tired
rather than anxious.

When feeling work succeeds, individuals can avoid concluding that they need
mental health care. This is most likely to happen when the situations causing the
emotions are temporary and brief and when supportive others legitimize their
emotions. If, for example, the woman with the ill parent has similarly situated
friends who describe similar emotions, she might conclude that her emotions are
understandable and acceptable.

Conversely, individuals are more likely to conclude they need psychiatric care
when their emotions repeatedly fail to meet social expectations and others repeat-
edly say they need help. Ironically, individuals also may conclude they need help
when they succeed too well at feeling work. For example, those who rely too
heavily on drugs to manage their feelings can lose control of their lives, and those
who consistently reinterpret their emotions—telling themselves that they are not
angry, for example, even while punching a wall or a spouse—can find that others
label them crazy when their emotions and behavior don’t match. Finally, those
who consistently engage in feeling work can lose the ability to interpret their
feelings accurately and experience them fully. The resulting sense of numbness and
alienation eventually can lead individuals to seek treatment.

Labeling by Family, Friends, and the Public Like individuals, families only
reluctantly label their members mentally ill (Horwitz, 1982). Instead, families
can deny that a problem exists by convincing themselves that their relative’s be-
havior does not depart greatly from the norm. If they do recognize that a prob-
lem exists, they can convince themselves that their relative is lazy, a drunkard,
“nervous,” responding normally to stress, or experiencing physical problems

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163T H E S O C I O L O G Y O F M E N TA L I L L N E S S

rather than mental illness. Finally, families might recognize that their relative
is experiencing mental problems but define those problems as temporary or
unimportant.

Two factors explain how and why families can long ignore behavior that oth-
ers would label mental illness. First, those who share cultural values, close personal
relationships, and similar behavior patterns have a context for interpreting unusual
behavior and therefore can interpret behavior as meaningful more easily than
outsiders could. Second, families often hesitate to label one of their own for fear
others will reject or devalue both the individual and the family. As a result, families
have a strong motive to develop alternative and less stigmatizing explanations for
problematic behavior.

Moreover, even when relatives and other intimates define an individual as
mentally ill, they don’t necessarily bring the individual to treatment. Instead, they
can continue to protect the individual against social sanctions through a process
Lynch (1983) refers to as accommodation. Accommodation refers to “inter-
actional techniques that people use to manage persons they view as persistent
sources of trouble” and to avoid conflict, such as humoring problematic individu-
als or minimizing contact with them (Lynch, 1983:152).

Nevertheless, despite these attempts to normalize and accommodate men-
tal illness, families and friends may eventually conclude that an individual needs
treatment. At that point, they must either get the individual to agree or coerce the
individual into getting treatment despite his or her active resistance. One study of
persons seeking care for a serious mental illness for the first time found that 42%
had actively sought care and 23% had been coerced (Pescosolido, Gardner, and
Lubell, 1998). Coercion was most common among those with bipolar disorder,
who often enjoyed the “highs” of mania even though others regarded them as
seriously disturbed, and among those with large, tight social networks. In an-
other 31% of cases, families “muddled through”: Either the individuals went along
with treatment decisions made by others without accepting or rejecting those
decisions, or no one in the family seemed to have been in charge of the decision-
making process.

Labeling by the Psychiatric Establishment Once individuals enter treatment,
a different set of rules applies. Whereas the public tends to normalize behavior,
mental health professionals tend to assume illness. First, because the medical model
of mental illness stresses that treatment usually helps and rarely harms, it encour-
ages mental health workers to define mental illness broadly. Second, because men-
tal health workers see prospective patients outside of any social context, behavior
that might seem reasonable in context often seems incomprehensible. This is es-
pecially likely when mental health workers and prospective patients come from
different social worlds, whether because they differ in gender, ethnicity, social class,
or some other factor. Third, mental health workers assume that individuals would
not have been brought to their attention if they did not need care. Finally, because
normalization and accommodation are so common, mental health workers often
don’t see individuals until the situation has reached a crisis, making it relatively
easy to conclude that the individuals are mentally ill.

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164 C H A P T E R 7

Mental Illness and Identity

Similarly, at some point, most who conclude their troubles are serious also con-
clude they need treatment but that being mentally ill is an important part of their
identity (Karp and Birk, 2013). As one person explained to sociologists David
Karp and Lara Birk:

I am a mental patient. I am a depressive. I am a depressive (said slowly
and with intensity). This is my identity. I can’t separate myself from that.
When people know me they’ll have to know about my psychiatric
history, because that’s who I am. (2013:34)

This change in identity, even if it helps individuals find appropriate treatment,
can raise difficult questions about the self. First, those considered mentally ill are
often feared and rejected by others, even if their symptoms disappear over time
(Link et al., 1999; Moses, 2009; Pescosolido, 2013; Schnittker, 2013). Those who
identify as mentally ill typically hold the same views and thus experience increased
depression, increased social isolation, and lower self-esteem (Link et al., 1999;
Moses, 2009). This does not mean, however, that treatment is not worth it, but it
does mean that stigma can partially cancel out its positive effects (Karp and Birk,
2013; Link et al., 1999).

Second, the goal of psychiatric treatment is to change essential components
of the self: feelings, emotions, and ways of thinking. Especially when the treatment
relies on external forces such as surgeries or drugs, it raises the question of whether
one’s thoughts and feelings are really one’s own (Aneshensel, 2013; Karp and Birk,
2013). Am I a happy person, or am I just happy because of the drug? Am I in
love with my girlfriend, or is the drug making me feel that way? And so on. Such
questions can lead individuals to experiment with drugs and drug dosages to try
to find a way to feel not only healthy but also truly themselves.

IMPLICATIONS

In this chapter, we have compared the sociological and medical models of mental
illness. As with the medical models of physical illness and disability discussed in
Chapters 5 and 6, the medical model of mental illness asserts that mental illness is
a scientifically measurable and objective reality that requires prompt treatment by
scientifically trained personnel. As such, this model downplays the role of social
and moral values in the definition and treatment of mental illness and the effect of
mortification and stigma on those who receive treatment.

We now find ourselves facing a situation uncomfortably similar to that of past
centuries. As in the years before the Great Confinement, thousands of mentally
ill persons now live on the streets and support themselves at least partly by beg-
ging. Many more are confined in nursing homes, jails, or prisons in the same way
that earlier societies confined persons with mental illness in almshouses. Although
drugs largely have replaced shackles, society still allocates far too few resources to
provide humanely for those with mental illnesses. Similarly, the Affordable Care

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165T H E S O C I O L O G Y O F M E N TA L I L L N E S S

Act expanded access to care for mental illness—but only for those who have
insurance coverage. Thus, we can only hope that in the future, with a greater un-
derstanding of the nature of mental illness and of the social response to it, we can
develop more compassionate and effective means of coping with mental illness.

SUMMARY

1. All societies from simple to complex contain some individuals who behave
in ways considered unacceptable and incomprehensible and who might be
labeled mentally ill in our society.

2. During the course of a year, approximately one-third of working-age adults
experience a diagnosable mental illness, with one-fifth experiencing a
moderate or severe disorder.

3. Ethnicity has little effect on rates of major mental illnesses. However, African
Americans are less likely than whites to develop anxiety or mood disorders
but more likely to report psychological distress, perhaps partly because of the
stresses imposed by racism. Hispanic Americans are less likely than whites to
develop anxiety disorders, mood disorders, and substance abuse problems,
perhaps because strong extended families protect against chronic stress.

4. Perhaps because of gender socialization, men consistently display higher rates
of substance abuse and personality disorders, whereas women consistently
display higher rates of depression and anxiety disorders.

5. Rates of both diagnosable mental illness and psychological distress increase
as social class decreases. Research suggests that occasionally mental illness
can cause individuals to drift into the lower classes, but much more often the
chronic stresses of lower-class life lead to mental illness. Chronic social stress
predicts mental illness considerably better than does acute stress, such as life
events.

6. Psychological distress is less common among those with more social capital:
resources available to individuals through their social network.

7. According to the medical model of mental illness, (a) objectively measurable
conditions define mental illness; (b) mental illness stems largely or solely
from something within individual psychology or biology; (c) mental illness
will worsen if left untreated but is likely to lessen if treated promptly by a
medical authority; and (d) treating mental illness rarely if ever harms patients.

8. The sociological model of mental illness argues that definitions of mental
illness reflect subjective social judgments regarding whether behaviors are
acceptable and understandable. Behaviors are labeled mental illness when
they contravene cognitive norms, performance norms, or feeling norms.

9. Research suggests that psychiatric diagnoses are neither valid nor reliable
and that the psychiatric diagnostic system has developed through an overtly
political process.

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166 C H A P T E R 7

10. Premodern societies often could find informal ways of coping with
individuals we would consider mentally ill. When they could not do so,
they typically blamed the problem on supernatural forces. The development
of a capitalist economy fostered a need for new formal social institutions
to address mental illness. The 19th century’s “moral treatment” movement
aimed to improve conditions at those institutions.

11. According to Sigmund Freud, mental illness occurred when children did
not respond successfully to a series of early childhood developmental issues
linked to the biological body. Freudian analysis was not based in scientific
research and proved too costly to implement in large hospitals.

12. By the mid-20th century, most mental hospitals were huge, depersonalizing,
“total institutions” that could worsen patients’ mental health. The
dramatic drop in inpatient censuses at these hospitals is referred to as
deinstitutionalization, which stemmed primarily from changes in federal
funding rather than from improvements in medical treatment.

13. Managed care organizations control health care spending by closely
monitoring patient care. They can improve care by promoting the best, most
cost-effective treatments but can worsen care by pressing clinicians to offer
only short-term, drug-based treatment.

14. Mental health is currently undergoing remedicalization through new
psychiatric techniques for diagnosis and treatment and new theories that
blame mental illness on individual biological abnormalities.

15. Rates of mental health treatment are highest among those who experience
minor emotional problems or stress rather than significant mental illness.
Persons with serious mental illness avoid seeking treatment when both they and
their families define their behavior as comprehensible and can accommodate
to that behavior. In contrast, mental health professionals tend to assume illness
rather than health when they examine unusual individual behavior.

16. Based on research findings, some medical authorities now argue that much
of what we call mental illness could be better treated by helping individuals
make sense of their experiences rather than by giving them diagnoses and
drugs. Similarly, the U.S. National Institute for Mental Health has declared
that it will no longer fund any research based on diagnostic categories.

17. Although treatment can help, its benefits are reduced by the harm caused by
the social stigma of mental illness.

REVIEW QUESTIONS

1. How and why do ethnicity, gender, and social class affect rates of mental
illness?

2. What is the relationship between acute stress and mental illness? Between
chronic stress and mental illness?

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167T H E S O C I O L O G Y O F M E N TA L I L L N E S S

3. What are the differences between the medical and sociological models of
mental illness?

4. What are the problems embedded in psychiatric diagnoses?

5. How did premodern societies respond to and cope with individuals we
would now consider mentally ill?

6. What was moral treatment, and why did it fail?

7. What was the antipsychiatry critique?

8. What were the sources and consequences of deinstitutionalization?

9. What is the remedicalization of mental illness?

10. How is managed care affecting the treatment and experience of mental
illness?

11. How do individuals become mental patients? How do they avoid becoming
mental patients?

12. What are the consequences of labeling an individual mentally ill?

CRITICAL THINKING QUESTIONS

1. Explain how lower social class status may foster mental illness and how
mental illness can cause lower social class status.

2. What similarities and what differences are there, in both causes and
consequences, between the moral treatment movement of the 19th century
and the deinstitutionalization movement of the 20th century?

3. The APA’s manual of mental illnesses includes an illness called nicotine
dependence. The term refers to persons who both want to stop smoking and
have tried unsuccessfully to stop smoking. Describe two possible harmful
consequences and two possible beneficial consequences of medicalizing this
situation.

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169

PA RT

III

Health Care Systems, Settings,

and Technologies

Chapter 8 Health Care in the United States

Chapter 9 Health Care around the Globe

Chapter 10 Health Care Settings and Technologies

In Part II, we looked at illness primarily from the perspective of the ill individual.
In this part, we move to a macrosociological level to look at health care systems
and settings. In Chapter 8, we consider the history and current nature of the U.S.
health care system. We examine why millions of Americans still find themselves
uninsured or threatened with bankruptcy because of medical bills, as well as recent
efforts to reform the U.S. health care system. Chapter 9 begins by presenting a
series of measures useful for evaluating any health care system and then uses these
measures to explore health care systems in six other nations—Germany, Canada,
Great Britain, the People’s Republic of China, Mexico, and the Democratic Re-
public of Congo. Finally, in Chapter 10, we investigate the major settings in which
health care is offered in the United States (other than individual doctors’ offices)
and the increasingly important role technology plays in those settings, as it simul-
taneously helps solve old problems and creates new ones.

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170

C H A P T E R

2

Health Care in the

United States

8

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171H E A LT H C A R E I N T H E U N I T E D S TAT E S

LEARNING OBJECTIVES

After reading this chapter, students should be able to:

● Discuss the history of health insurance in the United States.
● Understand the basic elements of the Affordable Care Act and its likely

impact.
● Explain why health care in the United States is so costly.
● Describe the gaps in U.S. health insurance coverage and the consequences

of those gaps.

In March 2010, Congress passed the Patient Protection and Affordable Care Act,
followed a few days later by the Health Care and Education Reconciliation Act of
2010. These acts are commonly referred to jointly as Obamacare or, more neutrally,
as the Affordable Care Act (ACA). Supporters argued that the acts would sig-
nificantly reform the U.S. health care system. Yet that system remains both under
attack and in crisis, as Peter Drier’s story illustrates:

Before his three-hour neck surgery for herniated disks in December, Peter
Drier, 37, signed a pile of consent forms. A bank technology manager who had
researched his insurance coverage, Mr. Drier was prepared when the bills started
arriving: $56,000 from Lenox Hill Hospital in Manhattan, $4300 from the
anesthesiologist and even $133,000 from his orthopedist, who he knew would
accept a fraction of that fee.

He was blindsided, though, by a bill of about $117,000 from an
“assistant surgeon,” a Queens-based neurosurgeon whom Mr. Drier did not
recall meeting. . . . In Mr. Drier’s case, the primary surgeon, Dr. Nathaniel L.
Tindal, had said he would accept a negotiated fee determined through Mr.
Drier’s insurance company, which ended up being about $6200. (Mr. Drier had
to pay $3000 of that to meet his deductible [the amount his insurance requires
him to pay out of pocket].) But the assistant, Dr. Harrison T. Mu, was out of
network and sent the $117,000 bill.

“I thought I understood the risks,” Mr. Drier, who lives in New York City,
said later. “But this was just so wrong—I had no choice and no negotiating
power.” (Rosenthal, 2014a)

The most basic element in any nation’s health care system is how it provides and
pays for health care. As Peter’s story illustrates, however, the United States is the
only more developed nation that does not guarantee affordable health care to its
citizens. Nor, despite this chapter’s title, does it really have a health care system. In-
stead, an agglomeration of public and private health care insurers (such as Medicaid
and Aetna), health care providers (such as doctors and physical therapists), and

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172 C H A P T E R 8

health care settings (such as hospitals and nursing homes) function autonomously
in myriad and often-competing ways.

In this chapter, we first look at the origins of the U.S. health insurance sys-
tem. We then analyze two current crises in U.S. health care: rising costs and lack
of access. Finally, we explore the nature and the impact of the health care reforms
passed in 2010.

A HISTORY OF U.S. HEALTH INSURANCE

For most of U.S. history, most Americans paid for their health care out of pocket.
Members of the upper class could buy any health care they wanted, the middle
class could afford most needed health care, the poor mostly went without, and few
questioned the system. But during the Great Depression of the 1930s, millions
of Americans lost their jobs, savings, and the ability to pay for medical care. This
financial crisis led to growing calls to adopt a national health care system such as
those that had recently emerged in Western Europe.

Unlike in Europe, however, proposals for a national health system were sty-
mied by stakeholder mobilization: organized political opposition by groups
with vested interest in the outcome (Hoffman, 2012; Quadagno, 2005). This oppo-
sition came from numerous sources. For example, labor unions opposed national
health care because it would eliminate one of the major benefits they offered: the
ability to press employers to offer affordable health insurance to workers. Mean-
while, national health care also was opposed by politicians who considered it so-
cialistic or who feared it would force racial integration in health care facilities.

The Birth of U.S. Health Insurance

The most important source of opposition, however, was the American Medical
Association (AMA), which feared that any sort of national health system would
reduce doctors’ incomes or autonomy. At the same time, however, the AMA knew
that doctors’ incomes were plunging because so many Americans could no longer
afford to purchase health care. Consequently, the AMA and (for similar reasons)
the American Hospital Association founded the nation’s first major insurance pro-
grams: Blue Shield to cover medical bills and Blue Cross to cover hospital bills
(Hoffman, 2012). These two plans, collectively known as “the Blues,” continue to
play an important role in the U.S. health care system, currently insuring approxi-
mately one-third of all Americans (Blue Cross Blue Shield Association, 2014). Be-
cause these plans freed most middle-class Americans from worrying about paying
their health care bills, they significantly cut popular support for any national health
system (Quadagno, 2005; Rothman, 1997).

Given that the primary purpose of the Blues was to protect hospitals’ and
doctors’ incomes, the plans had little incentive to control what kinds of care were
given, to whom, or at what costs. Under Blue Cross and Blue Shield, doctors and

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173H E A LT H C A R E I N T H E U N I T E D S TAT E S

hospitals were free to provide whatever treatments they thought were needed, at
whatever price they thought was reasonable. Patients paid their bills up front and
then requested reimbursement from the Blues. Because patients were billed a fee
for each office visit, test, or other service received, these plans were and are called
fee-for-service insurance.

Although the primary goal of the Blues was protecting doctors’ and hospitals’
income, these plans still had to restrain costs in some way to stay financially sol-
vent. To do so, the Blues sold their insurance only to people likely to be healthy
(such as workers at major businesses) and covered members’ expenses only until
preset yearly or lifetime limits were reached. They also relied on community
rating. Under community rating, each individual pays a “group rate” insurance
premium (yearly fee) based on the average risk level of his or her community as
a whole. Even if one individual in a community racked up high bills, those bills
would be covered by the insurance premiums paid by the many healthy members
of the same community.

The 1930s also saw the rise of a strikingly different type of health insurance
program, health maintenance organizations (HMOs). Unlike the Blues, the
early HMOs such as Kaiser Permanente and the Group Health Cooperative of
Puget Sound were founded not to protect the incomes of doctors or hospitals
but to provide affordable health care. These plans also used community rating. But
unlike the Blues, which reduced their costs by seeking only healthy individuals
to enroll as members, HMOs reduced costs by keeping members healthy through
preventive care, monitoring doctors’ decisions to avoid unnecessary care, and re-
quiring HMO members to use only salaried doctors who worked for HMOs
rather than independent doctors paid fee-for-service.

The Government Steps In

Although the Blues, HMOs, and other insurance plans enabled most Americans
to pay for health care, by the 1960s, many poor Americans, as well as many mid-
dle-class retirees, were finding it difficult to do so. Reflecting in part the rise of
the civil rights movement and the growing belief that government should use
its power to improve Americans’ lives, Congress in 1965 authorized two new
health insurance programs: Medicaid to insure the poorest Americans and
Medicare to insure Americans who were permanently disabled or age 65 and
older (Hoffman, 2012).

It is important to note that Medicaid is funded jointly by state and federal
governments and is typically framed by politicians and citizens as a form of char-
ity. Eligibility, coverage, and payments to providers vary considerably across the
states, depending in part on how willing state residents are to offer such “charity.”
In contrast, Medicare is funded and organized by the federal government. Because
most recipients are age 65 and older, the program is typically framed as an “enti-
tlement” earned through a lifetime of working and paying taxes.

Both Medicaid and Medicare were established as fee-for-service insurance.
Almost from the start, however, Medicaid offered relatively low reimbursement to
health care providers, leading many doctors to reject Medicaid patients. Medicare,

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174 C H A P T E R 8

however, broadened access to health care while allowing providers to set their
own fees, at least initially. As a result, the incomes of doctors, hospitals, and others
working in the health care field skyrocketed.

The Rise of Commercial Insurance

Recognition of the profits to be made in health care led commercial insurance
companies to enter the field in large numbers. Whereas the early insurance pro-
grams were mostly nonprofits, commercial insurance programs by definition
are organized on a for-profit basis and so must focus on earning a profit for their
investors. To do so, they use actuarial risk rating rather than community rating.
Under actuarial risk rating, insurers maximize their profits by doing whatever
they can to avoid signing up individuals who are likely to have expensive medical
bills. For example, until recently commercial insurers charged higher premiums
to those who had back strain, kidney stones, or ulcers, and they typically denied
coverage to those who had diabetes or ulcerative colitis or who worked as airline
pilots or in construction. (The ACA changed this at least partly, as we will see
later in this chapter.) Similarly, commercial insurers charged especially low rates
to low-risk individuals. As a result, these insurers lured many low-risk individuals
away from nonprofit insurers, leaving the nonprofits with a sicker clientele overall.
To avoid having to raise their rates for all members to cover the bills of their sicker
members, many nonprofit insurers have switched to actuarial risk rating or even
become for-profit corporations.

The Rise (and Partial Fall) of Managed Care

By the 1980s, the amounts spent by government and insurers on health care had
soared. This led to the explosive growth in managed care (Hoffman, 2012). The
term managed care refers to any system that controls costs through closely moni-
toring and controlling the decisions of health care providers; HMOs are one form
of managed care organization (MCO). Most commonly, MCOs control costs in
three ways. First, MCOs may negotiate prices with doctors and require consumers
to use only doctors who accept their price schedule. Second, MCOs may offer
bonuses to doctors who keep costs down and may require doctors to obtain ap-
proval before hospitalizing a patient, performing surgery, ordering an expensive
diagnostic test, or referring to a specialist outside the MCO’s “network.” This sys-
tem is known as utilization review. Finally, MCOs may rely on expert advice to
create lists (known as formularies) of the most cost-effective drugs for treating
specific conditions. Doctors who work for an MCO must get permission before
prescribing any drugs not on the MCO’s formulary. Most insured Americans now
belong to some form of managed care plan.

Despite evidence suggesting that managed care makes little difference in access
to care, quality of care, or patient satisfaction, it generated substantial backlash
(Hoffman, 2012; Mechanic, 2004; Miller and Luft, 1997). A string of legislative
and legal moves—often framed as “patients’ bills of rights”—have pressed insurers
to drop some of the less popular aspects of managed care. For example, legislators

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175H E A LT H C A R E I N T H E U N I T E D S TAT E S

opposed the early release of women from hospitals soon after giving birth (labeled
“drive-by deliveries” by the media), even though early release typically is safer
because it reduces women’s chances of contracting infections in the hospital.
Similarly, legislators have fought to get patients access to experimental treatments,
although patients are more likely to be harmed than helped by these treatments.
In addition, even in the absence of legislative pressure, the need to keep both
consumers and doctors happy has led insurers to scale back the use of formularies
and utilization review and to increase consumers’ access to doctors outside of the
MCO’s network (Bodenheimer, 1999; Hoffman, 2012).

Why has this backlash been so effective? Two important reasons can be found
in American culture (Mechanic, 2004). First, a central theme in American culture
is an emphasis on individual autonomy and independence. By its very nature,
managed care reduces individual choices for both consumers and health care pro-
viders, which left it vulnerable to political attack. Second, Americans typically
believe that more health care is always a good thing. Yet overtreatment can be both
dangerous and costly. For example, mortality rates are higher in geographic regions
where Americans receive more extensive medical care, apparently because the
extra medical treatment often is more dangerous than helpful (Fisher et al., 2003;
Wennberg, 2010). Because of this cultural belief in treatment, however, Americans
less commonly fear the pressure to overtreat built into a fee-for-service system
than the pressure to undertreat built into managed care. These cultural factors
made managed care an easy target.

The Attempt at “Health Care Security”

Pressures for reform began simmering again in the early 1990s as more and more
Americans found themselves uninsured or otherwise unable to pay their health
care bills. These problems led U.S. President William J. Clinton to propose his
Health Care Security Act (HCSA) in 1993. The HCSA represented a liberal
approach to health care reform. If adopted, the act would have broadened access
to care without seriously threatening the basically entrepreneurial nature of the
U.S. health care system or the power of the “big players” in health care. Under
the HCSA, Americans still would have received health insurance from many
different insurers, retaining the complexity and costs of the current system.
Wealthier Americans would have retained the right to purchase health care options
unavailable to others, so health care would have remained a two-class system. And
the proposal included no oversight mechanisms to restrain the costs (and profits)
of hospital, drug, or medical care.

Nevertheless, opposition to the plan was fierce, especially from the insurance
industry, which poured millions into fighting the bill (Hoffman, 2012; Quadagno,
2005). Moreover, the sheer complexity of the bill made it easier for opponents to
raise fears among the American public, which since the 1980s had increasingly
distrusted “big government” (Rothman, 1997; Skocpol, 1996). In the end, Congress
rejected the bill. However, Congress did approve passage of the State Children’s
Health Insurance Program (SCHIP). That program has extended coverage (primarily
through Medicaid) to many children under age 18 whose families earned too much

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176 C H A P T E R 8

to qualify for Medicaid but too little to pay for health care on their own. Still,
millions of Americans were left without access to health care.

THE 2010 PATIENT PROTECTION
AND AFFORDABLE CARE ACT

By 2008, with the election of U.S. President Barack Obama, the time for large-
scale health care reform seemed to have arrived. The economy was spiraling into a
recession, the costs of health care kept rising, and the ranks of the uninsured were
growing rapidly, increasing public support for reform. Moreover, as the cost of
insurance soared, many major employers who traditionally had paid most of their
employees’ insurance costs concluded that they could no longer do so. As a result,
the business community increasingly came to support health reform as well. Taken
together, these factors led to the push for health care reform.

Passing the Affordable Care Act

Even with public and business support growing, passage of health care reform was
not guaranteed. Stakeholder mobilization against the ACA remained strong among
anti-tax and antigovernment conservatives, older Americans who feared it would
reduce their Medicare benefits, and parts of the health care industry. As a result,
in designing the ACA, the Obama administration emphasized working within the
existing health care system (Jacobs and Skocpol, 2010; Miller, 2010; Oberlander,
2010). To earn the support of hospitals, doctors, and insurance companies, the ACA
included many millions in government subsidies for health care, all of which would
eventually be paid to the health care industry. To assuage voters who opposed new
taxes, the ACA would instead be funded by requiring individuals and employers
to bear the costs of expanding coverage. To earn the vote of those who feared
“creeping socialism,” the government abandoned the idea of a government-run
insurance system (such as an expanded version of Medicare). Finally, to earn the
support of the major pharmaceutical manufacturers, the government promised
new regulations that would reduce competition from foreign drug manufacturers
and manufacturers of generic drugs (Jacobs and Skocpol, 2010; Miller, 2010; Ober-
lander, 2010). Thus, the Obama administration chose, in essence, health insurance
reform over health care reform (Leonhardt, 2010).

Understanding the Affordable Care Act

The ACA reflects the neoliberal premises underlying the U.S. health care sys-
tem. Neoliberalism is an economic and social philosophy that encourages free
trade and private enterprise; disapproves of government involvement in education,
health care, or other social services; and promotes the idea that each individual has
both the freedom and the responsibility to make wise consumer choices in health
care, as in all areas of life (Fisher, 2007; Fisher and Ronald, 2008). Although the

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177H E A LT H C A R E I N T H E U N I T E D S TAT E S

government continues to play a role in health care under the ACA (especially in
services for the poor), the law requires many individuals to obtain for-profit in-
surance coverage to purchase goods and services from for-profit pharmaceutical
companies, hospitals, and doctors’ offices. Moreover, the ACA holds individuals
responsible for any bills not covered by their insurance.

The central goal of the ACA was to increase access to health care within the
existing health care framework and without increasing costs. Creating universal
access to health care was never stated as a goal (Hoffman, 2012). As a result, rather
than requiring the government to provide health insurance or care to all citizens
(as many nations do), the ACA established an individual mandate—that is, it
required each U.S. citizen and legal resident to obtain health insurance. In theory,
the individual mandate would force healthy as well as unhealthy Americans to
join, thus reducing the cost of insurance for each individual by spreading the bills
across a large and mostly healthy population. To make that insurance affordable,
the ACA established both state-level “health exchanges” and a federal exchange
through which individuals and small businesses could purchase coverage (helped
by subsidies and tax credits for middle- and working-class individuals).

In addition, the ACA established an employer mandate: a legal requirement
that employers with more than 50 employees offer affordable (for-profit) health
insurance that meets minimum standards for their employees. (Small businesses
receive tax credits to encourage them to do the same.)

The ACA also called for Medicaid to be expanded to include all poor and
near-poor Americans under age 65. This change was to play a major role in reduc-
ing the underinsured and uninsured population. However, in a landmark decision,
the Supreme Court decided that the federal government could not require states
to expand their Medicaid programs. As of 2018, one-third of states have chosen
not to expand, even though the federal government would have paid almost all the
costs and several million people would have gained insurance coverage (Antonisse
et al., 2018).

Finally, the ACA established various new restrictions on insurance compa-
nies. Among other things, companies are now prohibited from capping annual
or lifetime benefits, refusing to cover those with preexisting health problems, or
charging higher premiums to such individuals. In addition, the law sets a yearly
cap on how much insurers can expect consumers to pay via deductibles (the
amount individuals must pay out of pocket before their insurance kicks in) and
copayments (unreimbursable fees paid out of pocket each time one sees a doc-
tor). Insurers also must cover at least 60% of average medical costs and must allow
young people to remain on their parents’ insurance policies until they turn 26.

The ACA Under Attack

From the moment the ACA was passed, it has been under attack. Numerous bills
to alter or end it have been proposed in Congress, and numerous court challenges
against it have been filed at the state and federal levels.

Those attacks grew stronger and more effective with the election of President
Donald Trump in 2016 (Sanger-Katz, 2018). Among other things, the Trump

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178 C H A P T E R 8

administration has made it more difficult for Americans to get Medicaid coverage.
It also virtually eliminated the advertising budget for ACA insurance plans,
leading fewer people to enroll in a plan by the yearly deadline. In addition, it
reduced subsidies to insurers. In response, insurers have raised their premiums,
leading some individuals to drop their insurance. Similarly, the government now
allows insurers to offer cheaper plans that provide minimal benefits, increasing the
number of people who have insurance but still can’t pay their health care bills.
Most important of all, the government dropped the requirement that individuals
purchase insurance or pay a fine, encouraging healthier persons to go without
insurance altogether (Sanger-Katz, 2018).

No matter who wins in future elections, the ACA’s future is uncertain.

The Impact of the ACA

Passage of the ACA dramatically reduced the number of uninsured persons in the
United States from 49 million in 2010 to 29 million in 2017 (Cohen, Zammitti, and
Martine, 2018). Moreover, on average, individuals who gained insurance coverage
report greater financial security and better health than similar individuals who
lack insurance. In addition, states that expanded Medicaid coverage reported more
economic growth and less unemployment than other states (Antonisse et al., 2018).

THE CONTINUING CRISIS IN HEALTH CARE COSTS

Unfortunately, even with adoption of the ACA, the cost of health care in the United
States is perilously high—and rising (Kamal and Cox, 2017). Moreover, compared
to other more developed nations, the United States spends considerably more on
health care (OECD, 2018). Yet despite these expenditures, researchers consistently
rank the U.S. health care system below that of most other comparable nations
(Commonwealth Fund, 2017a; Muennig and Glied, 2010; Schoen et al., 2010).

The Myths of Health Care Costs

What accounts for the rising and unusually high costs of health care in the United
States? If you ask the typical American—or member of Congress—he or she is likely
to respond with one of four popular “myths” about U.S. health care (Starr, 1994).

The first myth is that Americans receive more and better care than do citizens
of other more developed nations. On average, however, the reverse is true. For
example, despite our high health costs, Americans see doctors fewer times each year
and can’t afford needed care more times per year than do citizens of most devel-
oped nations, as Figures 8.1 and 8.2 show. And as Figure 8.3 shows, despite those
higher health costs, life expectancy in the United States is lower than in numerous
other developed nations.

The second myth attributes our high health care costs to our unique propen-
sity for filing malpractice suits. Malpractice suits can raise prices because doctors

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179H E A LT H C A R E I N T H E U N I T E D S TAT E S

FIGURE 8.1
Health Expenses and Number of Doctor Visits per Year in
30 Nations*

0 64 10 12 14 16 18 202 8
$0

$1,000

$2,000

$3,000

$4,000

$5,000

$6,000

$7,000

$9,000

$10,000

$8,000

United States

Luxembourg

Canada

Hungary

Germany

Mexico

United Kingdom
Japan

Number of Visits

H
ea

lth
E

xp
en

se
s

($
)

*Dollar amounts adjusted for purchasing power parity. This strategy controls for differences over
time and across countries in the worth of a nation’s currency by factoring in the number of units of
a nation’s currency required to buy the same amount of goods and services that $1 would buy in the
United States.

SOURCE: OECD (2018).

have to pay malpractice insurance premiums and they may believe they have to
engage in defensive medicine—performing tests and procedures primarily to
protect themselves against lawsuits. Researchers estimate, however, that defensive
medicine accounts for only a small percentage of total U.S. health care costs, and
so changing the malpractice system would not significantly reduce the use of un-
necessary tests and procedures (Rothberg, 2014).

The third myth attributes our rising health care costs to our aging population.
Yet the population of the United States is no older than that of any of the other
wealthy nations, and economists have found no relationship between the age of a
nation’s population and its health care costs (Bodenheimer, 2005a).

The fourth myth is that health care costs are so high in the United States be-
cause of our advanced technologies. Although these technologies certainly play a
role in health care costs, technologies (other than pharmaceutical drugs) account
for only a small fraction of all health care costs. Moreover, the same technologies
exist in the other wealthy nations without producing equally high health care
costs. Thus, the mere existence of technology can’t explain these costs.

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180 C H A P T E R 8

Understanding Health Care Costs

If patient demand, malpractice costs, the aging population, and advanced technology
don’t explain the rising costs of health care, then what does? Research points
to three underlying factors: a fragmented system that multiplies administrative
costs, the great power that health care providers (doctors, hospitals, pharmaceutical
companies, etc.) hold relative to health care consumers (whether individuals, the
government, or insurers), and the for-profit basis of the U.S. health care system
(Bodenheim, 2005a, 2005b, 2005c; Commonwealth Fund, 2017a; Davis et al.,
2014; Reinhardt, Hussey, and Anderson, 2004).

Because Canadian society is probably the most similar to U.S. society, com-
paring these two countries helps illustrate why costs are so high in the United
States. In the next chapter, we examine the Canadian health care system in detail.
At this point, we need only note a few major points. Most important, Canadians
receive their health insurance from a single payer: the government. For this reason,

FIGURE 8.2
Health Expenses and Number of Times Couldn’t Afford
Needed Care*

0 1510 25 30 355 20
$0

$1,000

$2,000

$3,000

$4,000

$5,000

$6,000

$7,000

$9,000

$10,000

$8,000

United States

United Kingdom

Italy

Germany

Canada

Poland

Number of Times Couldn’t Afford Care

H
ea

lth
E

xp
en

se
s

($
)

*Dollar amounts adjusted for purchasing power parity. This strategy controls for differences over
time and across countries in the worth of a nation’s currency by factoring in the number of units of
a nation’s currency required to buy the same amount of goods and services that $1 would buy in the
United States.

SOURCE: OECD (2018).

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181H E A LT H C A R E I N T H E U N I T E D S TAT E S

the Canadian system is referred to as a single-payer system. Similarly, hospitals
receive an annual sum from the government to cover their costs. Those costs are
restrained because, unlike in the United States, Canadian hospitals don’t need an
expensive administrative system to track patient expenses and submit bills to mul-
tiple insurers. As a result, hospital costs per capita in Canada are almost 50% lower
than in the United States (Himmelstein et al., 2014).

In Canada, costs are also restrained by government oversight on major capital
development: If a Canadian hospital wants to add new beds or purchase new
advanced technologies, it must first convince the government that such services
are needed (Bodenheimer, 2005b). As a result, hospital costs are considerably lower
in Canada than in the United States, even though admission rates are about equal
and average stays are longer.

A unified rather than fragmented system also helps restrain Canada’s medical
and drug costs. Like hospitals, doctors must submit their bills only to the national
insurance system rather than filing myriad different forms with different insurers.
Meanwhile, no one need spend money on advertising or selling insurance, trying

FIGURE 8.3 Health Expenses and Life Expectancy in 30 Nations*

United States

Canada

Germany

Japan

Mexico

United Kingdom

70 80 8575
$0

$1,000

$2,000

$3,000

$4,000

$5,000

$6,000

$7,000

$9,000

$10,000

$8,000

Life Expectancy

H
ea

lth
E

xp
en

se
s

($
)

*Dollar amounts adjusted for purchasing power parity. This strategy controls for differences over
time and across countries in the worth of a nation’s currency by factoring in the number of units of
a nation’s currency required to buy the same amount of goods and services that $1 would buy in the
United States.

SOURCE: OECD (2018).

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182 C H A P T E R 8

to collect unpaid bills, or covering the costs of unpaid bills. Drug costs are limited
because provincial health administrators develop formularies of the most cost-
effective drugs and negotiate with pharmaceutical companies to buy those drugs
at discount prices. Similarly, Canada’s national health care system has the economic
“muscle” to control the prices it pays doctors, technology companies, and other
health care providers.

In addition to the fragmented nature of the U.S. health care system, the
fact that health care providers hold more power than health care consumers in
the United States has also kept costs high. This results from the fact that profit
making—by doctors, hospitals, insurers, pharmaceutical companies, and others—
lies at the heart of the U.S. health care system.

As the next section discusses further, in the United States, pharmaceutical
companies largely control which drugs come to market, how they are advertised,
and at what prices, with few constraints imposed by any national consumer or
government forces. Similarly, U.S. hospitals are free of the governmental oversight
that constrains costs in Canada and are forced to compete for patients to pay their
bills (let alone earn a profit). As a result, hospitals must create demand by adding
beds, specialized units (such as heart-transplant units), and expensive technologies
(such as kidney-dialysis machines), and then encouraging doctors and patients to
use those services.

Similarly, because no national health care system controls the number or dis-
tribution of doctors in the United States, most of the country (other than poor
and rural areas) has far too many doctors, especially specialists. To protect their
incomes in the face of this competition, doctors may increase either the number
of services they recommend to patients or their fees for those services (Aizenman,
2010; Bodenheimer, 2005c). This largely explains why U.S. doctors are excep-
tionally likely to adopt new, expensive, and often unproven technologies such as
full-body scans and bone-marrow transplants (Bodenheimer, 2005b). In addition,
U.S. doctors increasingly are trying to raise their incomes by purchasing surgical
centers, CT scan machines, and other expensive technologies—actions that would
likely not be permitted in a single-payer health care system. It is no surprise that
doctors who do so are considerably more likely to recommend those services to
their patients (Ruggieri, 2014). For all these reasons, Americans living in areas
with many doctors per capita receive more medical tests, surgeries, and other pro-
cedures; pay more for those services; and have worse health outcomes than those
living in areas with fewer doctors (Bodenheimer, 2005b; Wennberg, 2010).

Finally, the for-profit basis of the U.S. health care system, combined with its
fragmented nature and the power it gives to health care providers, has made it
difficult for reform efforts to succeed. For example, since the 1980s the U.S. has
tried to reduce Medicaid and Medicare costs through a system of diagnosis-
related groups (DRGs). Under this system, the government calculates the av-
erage cost of inpatient treatment for each possible DRG and then reimburses
hospitals for treatment based on those averages rather than on the actual costs per
patient. If the hospital spends less than this amount, it earns money; if it spends
more, it loses money. Theoretically, then, the DRG system should have limited the
costs of providing care under Medicaid and Medicare. Instead, hospitals developed

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183H E A LT H C A R E I N T H E U N I T E D S TAT E S

sophisticated computer software to identify the most remunerative but still plau-
sible diagnosis for a given patient—a process known as “DRG creep.” In addition,
hospitals increasingly shifted services to outpatient units, where the DRG system
does not apply. As a result, the DRG system only marginally reduced government
costs for hospital care. Similarly, when the government restricted the fees it would
pay health care providers for treating Medicaid patients, many providers either
stopped accepting such patients or increased the fees they charged patients who
had other forms of insurance.

Health Care Costs and the ACA

Given the reasons why U.S. health care costs are so high, it seems unlikely that the
ACA can cut costs significantly. First, the ACA continues the nation’s reliance on a
vast web of insurers, thus guaranteeing huge administrative costs and inefficiencies.
Second, health care providers (especially insurers) continue to have considerable
control over the system. Most important, to appease health industry opponents,
most proposals to incorporate well-established cost control mechanisms into the
ACA were dropped from the bill before it was passed.

At the individual level, and as the story that opened this chapter illustrated,
even insured Americans may continue to risk bankruptcy because of copayments,
deductibles, and other services not covered by their insurance. In 2017, those who
purchased the least expensive insurance plans available through state health exchanges
were responsible for insurance deductibles of up to $7,000 for individuals and $14,000
for families (Cigna.com, 2017). In addition, individuals remain responsible for many
costs not covered by their insurance such as drugs not approved by their plans or
emergency care at hospitals not included in their plan’s network.

Finally, the ACA preserves the for-profit nature of our health care system.
Within such a system, doctors, hospitals, and other health care providers will
be pressured to find ways to generate profits through their decisions regarding
admissions, diagnoses, tests, treatment, and so on. For example, two-thirds of
for-profit hospices for the dying will not accept patients whose pain needs to
be managed through chemotherapy or other expensive forms of care (Rao and
Hellander, 2014). And as we’ve seen, even nonprofit organizations will be pressured
to do the same in order to continue their work. Similarly, we can expect that for-
profit insurers will continue to seek ways to enroll members who are relatively
healthy and avoid potential members who might generate high medical bills. This
will leave nonprofits and state health exchanges with a disproportionate number
of members who have high medical bills, raising the cost of such plans in the end.

For these reasons and others, the ACA is likely to have only a modest effect if
any on health care costs (Weiner, Marks, and Pauly, 2017).

Health Care Costs and “Big Pharma”

Because the pharmaceutical industry, or “Big Pharma” as it is often known, has
so quickly emerged as a major source of health care costs it is worth exploring in
more depth. This section looks at how the pharmaceutical industry affects doctors’

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184 C H A P T E R 8

and patients’ ideas about illnesses and treatments and, as a result, how it affects
health care costs.

Big Pharma Comes of Age The pharmaceutical industry is an enormous—
and enormously profitable—enterprise. Indeed, it has been the most profitable
industry in the United States since the early 1980s (Angell, 2004). Although phar-
maceutical companies routinely argue that their high profits merely reflect the
high cost of researching and developing new drugs, such work accounts for only
14% of their budgets. In contrast, marketing accounts for around 50% (Angell,
2004). Largely because of this marketing, American citizens now spend a total of
about $272 billion per year on prescription drugs, not including drugs purchased
by doctors, nursing homes, hospitals, and other institutions (Centers for Medicare
and Medicaid Services, 2014). Americans are buying more drugs, buying more
expensive drugs, and seeing the prices of popular drugs rise more often than ever
before. (The price of the popular antihistamine Claritin, for example, rose 13 times
in five years.)

The pharmaceutical industry was not always this profitable. Profits only
began soaring in the early 1980s after a series of legal changes reflecting both
the increasingly “business-friendly” atmosphere in the federal government and
the increased influence of the pharmaceutical industry lobby—now the biggest
spending lobby in Washington. First, new laws allowed researchers funded by
federal agencies (including university professors and researchers working for small
biotech companies) to patent their discoveries and then license those patents to
pharmaceutical companies. This change dramatically reduced pharmaceutical
companies’ research costs—while giving these researchers a vested interest in
emphasizing the benefits of new drugs.

Second, new laws doubled the life of drug patents. As long as a drug is under
patent, only the company that owns the patent can sell the drug, allowing it to set
its price as high as the market will bear. In addition, companies can now extend
their patents by developing “me-too” drugs that differ only slightly from existing
drugs. For example, when the patent expired for Prilosec, a widely used treatment
for common stomach troubles, its manufacturer released Nexium, an essentially
identical new drug. Nexium now sells for $6 per pill and Prilosec for $1, whereas
the chemically identical generic version, omeprazole, sells for 45 cents. Yet sales are
highest for Nexium (Brawley, 2011).

Third, the pharmaceutical industry won the right to market drugs directly to
consumers. Direct-to-consumer advertising has proven highly effective. According
to a nationally representative survey conducted in 2008 for the nonprofit Kaiser
Family Foundation, almost one-third of American adults have asked their doctors
about drugs they’ve seen advertised, and 82% of those who asked for a prescrip-
tion received one (Appleby, 2008).

Developing New Drugs Much of the recent rise in health care costs in the
United States comes from the shift to new drugs. Whenever a new drug is de-
veloped, the crucial question for health care providers and patients is whether its
benefits outweigh its dangers. For this reason, any new drug should be extensively

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185H E A LT H C A R E I N T H E U N I T E D S TAT E S

tested to determine whether it works better than already available drugs (which
almost certainly are cheaper), whether it works differently in different populations,
what dosages are appropriate, and what side effects are likely. But because pharma-
ceutical companies earn their profits by selling drugs, they have a vested interest
in overstating benefits and understating dangers. And increasingly these companies
are both willing and able to manipulate the data available to outside researchers,
doctors, federal regulators, and consumers (Abramson, 2004; Angell, 2004). For
example, because scientific testing is typically designed to be accurate 95% of the
time, manufacturers know that if they test a drug enough times, they will even-
tually hit the other 5% and obtain data that inaccurately suggest a drug works in
some population. “Contemporary Issues: Race-Specific Medicine” describes one
outcome of this process.

In the past, university-based drug researchers provided at least a partial check
on the drug research process by bringing a more objective eye to their research.
Since 1980, however, pharmaceutical industry funding for research by university-
based scientists has skyrocketed (Lemmens, 2004). That funding comes in many
forms—from research grants to stock options to all-expenses-paid conferences in
Hawaii. Moreover, as other federal funding for universities declined over the past
quarter century, university administrators came to expect their faculty to seek
pharmaceutical funding. Importantly, when the pharmaceutical industry funds
university-based research, it often retains the rights to the research results and

CONTEMPORARY ISSUES

Race-Specific Medicine

Is medicine a black or white matter? Increasingly, pharmaceutical manufacturers are
acting as if it is. At least 30 drugs now on the market are claimed by manufacturers
to be safer or more effective for African Americans than for whites (Epstein, 2007).
Most commonly, these are drugs that proved ineffective in rigorous testing but that
(perhaps accidentally) appeared to work in small studies of African Americans—some
of which didn’t even compare African Americans with whites. Yet as Chapter 3
discussed, there are no meaningful genetic differences between “races,” so there are
no biological explanations for these supposed differences in drug safety or efficacy.
Indeed, one major review concluded that manufacturer’s claims for “race-specific”
drugs are “universally controversial” (Tate and Goldstein, 2004).

In addition to increasing drug costs as patients are shifted from older, less
expensive drugs to newer and perhaps ineffective drugs, the rise of race-specific
medicine reinforces the idea that racial differences are real and important (Epstein,
2007). Moreover, when drug companies focus on seeking racial differences, they may
unintentionally hide more important causes of illness: Poor African Americans living
in polluted neighborhoods in Mississippi, for example, may be no more susceptible
to disease than their white neighbors, but this may be overlooked if researchers
divide their subjects only by race and not by pollution levels. Similarly, the concept of
race-specific medicine may lead doctors to quickly assign diagnoses and treatments
based on race rather than on a holistic assessment of their patients as individuals.
In fact, more than 80% of doctors responding in a national survey agreed that race
should be used as a basis for diagnosis and treatment (Williams et al., 2010).

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186 C H A P T E R 8

thus can keep university researchers from publishing any data suggesting that a
particular drug is ineffective or dangerous (Angell, 2004; Lemmens, 2004).

At the same time that the pharmaceutical industry has increased its funding
to university-based researchers, it has even more dramatically increased funding to
commercial research organizations (Lemmens, 2004). These organizations are paid not
only to conduct research but also to promote it. To keep on the good side of the
companies that fund them, these research organizations must make drugs look as
effective and safe as possible by, for example, selecting research subjects who are
least likely to experience side effects, studying drugs’ effects only briefly before side
effects can appear, underestimating the severity of any side effects that do appear, and
choosing not to publish any studies suggesting that a drug harms or doesn’t help.

Doctors, medical researchers, sociologists, and others have raised concerns
about the impact of bias on research publications (Bodenheimer, 2000). Research-
ers have found that medical journal articles written by individuals who received
pharmaceutical industry funding are four to five times more likely to recommend
the tested drug than are articles written by those without such funding (Abramson,
2004:97). Similarly, researchers have found that research studies suggesting a drug
is effective are several times more likely to be submitted and accepted for publica-
tion than are those that suggest it is ineffective (Hadler, 2008; Turner et al., 2008).
Concern about such biases led the New England Journal of Medicine (one of the
top two medical journals in the United States) to forbid authors from publishing
articles on drugs in which they had financial interests. The policy, however, was
dropped quickly because it proved virtually impossible to find authors who did not
have financial conflicts (Lemmens, 2004).

Even more astonishing than pharmaceutical industry funding of university-
based researchers is the growing practice of paying such researchers to sign their
names to articles written by industry employees (Elliott, 2004). For example,
between 1988 and 2000, 96 articles were published in medical journals on the
popular antidepressant Zoloft. Slightly more than half of these were written by
pharmaceutical industry employees but published under the names of universi-
ty-based researchers. Moreover, these ghostwritten articles were more likely than
other articles to be published in prestigious medical journals (Elliott, 2004).

Regulating Drugs In the United States, ensuring the safety of pharmaceutical
drugs falls to the Food and Drug Administration (FDA). But during the same time
period that the profits and power of the pharmaceutical industry grew, the FDA’s
power and funding declined as part of a broader public and political movement
away from “big government.” These two changes are not unrelated: The pharma-
ceutical industry now routinely provides funding of various sorts to staff members
at government advisory agencies, doctors who serve on FDA advisory panels, and
legislators who support reducing the FDA’s powers (Lemmens, 2004).

Under current regulations, the FDA must make its decisions based primar-
ily on data reported to it by the pharmaceutical industry. Yet the industry is re-
quired to report only a small fraction of the research it conducts. For example, the
company that produced the antidepressant Paxil had considerable data indicating
that among teenagers Paxil did not reduce depression but could lead to suicide. To

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187H E A LT H C A R E I N T H E U N I T E D S TAT E S

avoid making this information public, the company submitted to the FDA only
its data from studies on adults (Lemmens, 2004). Similarly, drug companies need
only demonstrate that new drugs work better than placebos, not that they work
better than existing (cheaper) drugs. For example, because of intensive marketing
campaigns, new antipsychotic drugs such as Zyprexa have largely replaced older,
cheaper drugs, even though the new drugs work little better than placebos and
carry life-threatening risks (Wilson, 2010b).

Marketing Drugs Once the pharmaceutical industry develops a drug and gets
FDA approval, the next step is to market the drug. One of the most important
limitations to the FDA’s power is that, once it approves a drug for a single use in
a single population, doctors legally can prescribe it for any purpose to any popu-
lation. For example, doctors increasingly are prescribing Botox injections to treat
migraines even though the FDA has not approved its use for that purpose.

Drug marketing has two major audiences: doctors and the public. Marketing
to doctors begins during medical school as students quickly learn that pharmaceu-
tical companies provide a ready source not only of drug samples and information
but also of pens, notepads, lunches, and all-expense-paid “educational” confer-
ences at major resorts. After graduation, the pharmaceutical industry continues
to serve as doctors’ main source of information about drugs. The Physicians’ Desk
Reference (or PDR), the main reference doctors turn to for drug information, is
solely composed of drug descriptions written by drug manufacturers. In addi-
tion, the pharmaceutical industry spends $6000 to $11,000 (depending on med-
ical specialty) per doctor per year to send salespeople to doctors’ offices on top
of the money it spends advertising drugs to doctors in other ways. Most doctors
meet with pharmaceutical salespeople at least four times per month and believe
their behavior is unaffected by these salespeople. Yet doctors who meet with drug
salespeople prescribe promoted drugs more often than do other doctors—even
when the promoted drugs are more costly and less effective than the alternatives
(Angell, 2004; D. Shapiro, 2004). In addition, the pharmaceutical companies now
surreptitiously provide much of the “continuing education courses” doctors must
take each year by paying for-profit firms to teach the courses and to arrange with
universities to accredit the courses (Angell, 2004).

In recent years, and as noted previously, marketing directly to consumers has
become as important as marketing to doctors. To the companies, such advertising
is simply an extension of normal business practices and no different from any other
form of advertising. Moreover, they argue, advertising to consumers is a public
service because it can encourage consumers to seek medical care for problems
they otherwise might have ignored. Finally, companies have argued that these
advertisements pose no health risks because consumers still must get prescriptions
before they can purchase drugs, thus leaving the final decisions in doctors’ hands.
Those who oppose such advertisements, on the other hand, argue that the
advertisements are frequently misleading, encourage consumers to pressure their
doctors into prescribing the drugs, and encourage both doctors and patients to
treat normal human conditions (such as baldness) with pharmaceutical drugs
(Angell, 2004; Hadler, 2008).

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188 C H A P T E R 8

Marketing Diseases As this suggests, the pharmaceutical industry sells not only
drugs but also diseases to doctors and the public alike. In some cases, drug compa-
nies have encouraged doctors and the public to define disease risks (such as high
blood pressure) as diseases (such as hypertensive disease). In other cases (as Chapter
5 described), drug companies have defined symptoms into new diseases.

One example of this is the disease known as pseudobulbar affect (PBA). PBA
refers to uncontrollable laughing or crying unrelated to individuals’ emotional
state and can be caused by various disabling neurological conditions (such as head
trauma, stroke, and Lou Gehrig’s disease). The concept of PBA was developed by
Avanir Pharmaceuticals, which markets the drug Nuedexta as a treatment for it
(Appleby, 2017). Although Nuedexta seems to help some patients, its side effects
are serious enough that at least one-quarter of users—all of whom already have
serious health problems and must take numerous other medications—soon stop
taking it. Moreover, equally effective drugs are available at a fraction of the cost.

To convince doctors that uncontrollable laughing and crying is a disease in itself,
Avanir has advertised in medical journals and sponsored continuing education courses,
conferences, and a PBA newsletter. Avanir also has marketed the concept of PBA
directly to consumers through television advertisements, a website it created focused on
PBA, and educational grants to advocacy groups for those living with stroke, multiple
sclerosis, and other diseases (Pollack, 2005). These strategies led sales of Neudexta to
increase by more than five times between 2012 and 2016 (Appleby, 2017).

THE CONTINUING CRISIS IN HEALTH
CARE ACCESS

The passage in 2010 of the ACA reflected the growing consensus that health
care in the United States is in crisis. But although the ACA has made a
difference, shockingly high numbers of Americans nonetheless remain uninsured,
underinsured, or precariously insured.

Uninsured Americans

As noted previously, the ACA significantly reduced the number of Americans who
were uninsured but still left 29 million Americans uninsured.

Young, childless adults—the population least likely to believe they might
fall ill and least likely to be covered by government health care programs—are
especially likely to be uninsured, as are African Americans, Hispanics, and poorer
persons (Kaiser Family Foundation, 2017). In addition, individuals are most likely
to lack insurance if they live in states that opted out of the Medicaid expansion
(most of which are in the South or Southwest) (Kaiser Family Foundation, 2017).

Surprisingly, most uninsured Americans live in families with one or more
full-time workers even though insurance is typically tied to employment (Kaiser
Family Foundation, 2017). This reflects sharp reductions over the last two decades
in the benefits employers offer their workers and sharp increases in the number

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189H E A LT H C A R E I N T H E U N I T E D S TAT E S

of workers hired without benefits on a part-time or temporary basis. Ironically,
because the ACA requires large employers to subsidize health insurance for
employees who work 40 or more hours, many employers have cut workers’ hours
below that level (Rao and Hellander, 2014).

Finally, disabled and ill Americans remain disproportionately likely to be
uninsured. In the past, most states allowed insurers to reject applicants for individual
health insurance who showed any indications of health problems. The ACA now
prohibits this practice, but experience suggests that insurers will continue to find
ways to avoid enrolling individuals who seem likely to generate high medical bills.

Underinsured Americans

In addition to those who are uninsured, almost 30% of adults under age 65 who
have insurance are underinsured (Commonwealth Fund, 2017b). In other words,
they have insurance but still can’t afford to pay all their medical bills. Underin-
surance is most common among poorer people and those with chronic health
problems (Commonwealth Fund, 2017b).

Underinsurance occurs when individuals can’t afford to pay required insurance
premiums, deductibles, or copayments. It can also occur when insurers either cap
reimbursements per treatment or don’t cover certain treatments such as drugs or
nursing home care. As a result, people often face bankruptcy and often skip needed
medical care.

The Consequences of Underinsurance and Lack of Insurance

Uninsured and underinsured persons are considerably less likely than others to
report that they are in good health (Sommers, Gawande, and Baicker, 2017). It
is not surprising that they are also less likely than insured Americans to receive
needed health care, more likely to suffer from a variety of health complaints, and
more likely to die from potentially treatable health problems (Kaiser Commission
on Medicaid and the Uninsured, 2010; Sommers, Gawande, and Baicker, 2017).

This does not mean, however, that uninsured and underinsured persons have
no access to health care. Federal, state, and some local governments provide clinics
and public hospitals that offer low-cost or free care to such individuals. In addition,
governments sometimes provide low-cost or free vaccination, cancer screening,
and well-child programs. These facilities and programs, however, are not always
geographically accessible to those who need them. In addition, these facilities are
continually underfunded, so individuals may have to wait hours for emergency
care and weeks or months for nonemergency care.

Uninsured and underinsured persons also sometimes can obtain health care
through the private sector. First, some individuals can find private doctors who
will reduce or waive their fees, and some live in communities where nonprofit
hospitals offer inexpensive outpatient clinics. Second, uninsured persons can obtain
care for both acute and chronic, emergency and nonemergency health problems
from hospital emergency departments. Although emergency departments legally
can refuse care to anyone who is medically stable, many provide at least basic

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190 C H A P T E R 8

treatment to all who present themselves. Afterward, however, individuals can face
stratospheric bills. Finally, uninsured persons sometimes volunteer for experimental
trials of new drugs to obtain at least sporadic treatment (Fisher, 2009). Yet in
such experiments, some patients receive placebos, some receive drugs that prove
ineffective, and some receive drugs that prove harmful. Moreover, even if the drugs
work well, patients receive only temporary benefit because the drugs become
unavailable after the experiments end.

THE PROSPECTS FOR STATE-LEVEL REFORM

Although the ACA mandates many elements of health care for the states, it also gives
leeway for states to begin or continue their own reform efforts, some of which in
the end may become models for national reform. So far, Vermont is the only state
to have declared health care a right and to have seriously considered adopting a
single-payer system to operate under the ACA. Those plans are currently on hold,
however. Vermont, though, is an unusual state, which leans heavily Democratic,
and so few expect other states to follow its lead.

Hawaii offers another model for reform. In 1974, Hawaii’s legislators passed
the Prepaid Health Care Act. Unlike the ACA, which is based on an individual
mandate, Hawaii’s program is based on an employer mandate—that is, on the
requirement that all employers offer health insurance to their workers and pay a
specified percentage of the costs. Hawaii requires employers to pay at least 50% of
the cost for any employees who work at least 20 hours per week for four consecu-
tive weeks (Harris, 2009). In addition, most employers voluntarily insure employ-
ees’ families and pay more than their required 50% of costs.

The willingness of Hawaiian employers to care for their employees may reflect
unusual aspects of Hawaii’s history, geography, and culture. The state’s geographic
isolation makes it difficult or impossible for employers to move elsewhere, and
decades of paternalistic control by pineapple plantation owners had established
the idea that employers had some responsibilities to their employees—a concept
reinforced by Hawaii’s relatively strong unions. In addition, Hawaii’s employers
may share the common Hawaiian belief that all residents of these isolated islands
should be treated like members of a family (Harris, 2009).

As in other states, elderly persons and extremely poor persons receive their
health insurance from Medicaid or Medicare. Unemployed persons and part-time
workers who earn too much to receive Medicaid but too little to purchase insurance
on their own instead can get insurance through the federal exchange previously
discussed, helped by hefty subsidies provided by the Hawaiian government. As a
result, 97% of Hawaii residents are insured (Barnett and Berchick, 2017).

Because such a high proportion of the state’s population is insured, insurers
can use community ratings rather than risk ratings—keeping rates affordable for
all purchasers—and still remain financially viable. In fact, both insurance premiums
and costs per Medicare enrollee are among the lowest in the nation, although they
have risen significantly over the last few years.

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191H E A LT H C A R E I N T H E U N I T E D S TAT E S

In addition to ensuring a high level of coverage, the new system enabled
Hawaii to keep health care costs relatively low. First, because almost everyone
has health insurance, residents can seek care early for illnesses and accidents.
As a result, the system is protected from the tremendous medical costs that can
accrue when illness or accidents are left untreated. Second, Hawaii benefited from
the unintended development of monopolistic, nonprofit insurance plans. About
70% of Hawaiians receive their insurance from one of two nonprofit insurers:
the Hawaii Medical Service Association or Kaiser Permanente. Because these
two insurers control such a large share of the market, they can exert considerable
control over medical costs. Doctors who refuse to accept their reimbursement
schedules or salaries can attempt to seek patients elsewhere but will find few
patients who don’t belong to these plans. Finally, Hawaii restrained costs through
reducing hospital use and costs. Unlike most U.S. insurers, Hawaii’s two major
insurers pay only for hospital stays in wards, not semiprivate rooms. Meanwhile,
Hawaii implemented a strict system for prospectively reviewing any hospital capital
expenses. Hospitals can’t purchase major equipment or construct new facilities
unless they can demonstrate need for those services. Therefore, consumers need
not pay the costs of maintaining unused hospital beds or duplicative technologies.
In 2017, Bloomberg News declared Hawaii’s health care system the best in the
nation based on life expectancy, cost per capita, and cost as a percentage of the
state’s gross domestic product (Del Giudice and Lu, 2017).

Conversely, the continued existence of Medicare and Medicaid has hampered
Hawaii’s ability to restrain health care costs. Because these plans don’t reimburse
hospitals at rates high enough to cover the actual costs of providing care, hospitals
have shifted costs to patients with private health insurance. At the same time,
Medicaid’s especially low reimbursement schedules have hampered access to health
care because many doctors won’t accept Medical patients. These problems have
been exacerbated by the (nationwide) shift toward replacing full-time workers
with part-time workers, which means that more Hawaiians must turn to the state
rather than employers for their insurance. As a result, costs have increased, and the
state has had to reduce the benefits available through its insurance program. In
addition, the costs of meeting various ACA requirements also have placed pressures
on Hawaii’s health insurance program.

In sum, the Hawaii experiment demonstrates both the advantages of moving
toward a single-payer, nonprofit system with strong centralized control and the
problems when multiple payers—in this case, public and private insurers—continue
to function in the same economic sphere. It also demonstrates the benefits available
from a reasonably unified managed care system and the difficulties of sustaining a
strong system in the face of external economic pressures.

IMPLICATIONS

As we have seen, Americans obtain their health care through a wide range of
funding mechanisms—from publicly subsidized health care programs to private
fee-for-service insurance to nonprofit HMOs. Even with passage of the ACA,

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192 C H A P T E R 8

some Americans continue to have nearly unlimited access to health care—
including unneeded and potentially dangerous care—and others lack access to
even the most basic health care. Although millions have gained insurance, millions
still face bankruptcy because of the limitations built into that insurance. Thus, the
United States continues to face economic and health problems caused by both
overuse and underuse of health care services. Moreover, the ACA hasn’t changed
the underlying structure of the system and so cannot reduce the nation’s health
care costs or other problems over the long run.

The failure to pass—or even seriously consider—any proposals for more dra-
matically changing the health care system reflects the political and cultural realities
of the contemporary United States. American culture has always contained both
liberal and conservative tendencies. The freedoms established in the Bill of Rights,
the commitment to public education, and the establishment of programs such as
Social Security reflect the widespread (liberal) belief that the government has a
responsibility to protect and value all its citizens. At the same time, U.S. culture has
long linked belief in individual freedom with belief in individual responsibility:
If the idea of an “American dream” suggests that anyone can succeed, it also sug-
gests (as conservatives often emphasize) that those who do not succeed have only
themselves to blame. This belief underlies the ongoing attacks against the ACA. It
remains to be seen whether changing U.S. demographics, politics, or economic re-
alities will shift the balance between these two tendencies and push either toward
or away from further health care reform.

SUMMARY

1. The United States does not have a health care system. Rather, it has an
agglomeration of public and private providers functioning autonomously in
often-competing ways.

2. Stakeholder mobilization—organized political opposition by groups with
vested interest in the outcome—has stood in the way of any true reform of
the system.

3. The Blue Cross and Blue Shield insurance plans were established to protect
the incomes of hospitals and doctors. Both plans were nonprofit, offered fee-
for-service insurance (in which consumers are reimbursed for their medical
and hospital bills), and were initially based on community rating (in which
all members pay the same insurance premium based on the average risk level
of their community as a whole).

4. HMOs also used community rating but were established to provide health
care to all. HMOs reduced costs by encouraging preventive care, monitoring
doctors’ behavior to make sure it was cost-effective, paying doctors on salary,
and requiring HMO members to use only HMO doctors.

5. Medicare and Medicaid are government insurance programs that provide
health care coverage to poor, disabled, and elderly persons. Because they
initially were a form of fee-for-service insurance with the government

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193H E A LT H C A R E I N T H E U N I T E D S TAT E S

paying all health care bills for members, these programs dramatically
increased the profits available in health care.

6. Commercial insurers rely on actuarial risk rating in which insurance
premiums are based on an individual’s health risks. Competition from
commercial insurers has led Blue Cross, Blue Shield, HMOs, and other
nonprofit insurers to begin operating more like each other and more like
commercial insurers.

7. Managed care refers to any system that controls costs by monitoring and
controlling health care providers’ actions. Most U.S. insurers now use
managed care, but public backlash has substantially reduced its impact.

8. The ACA, passed in 2010, aims to reduce the number of uninsured
Americans primarily through expanding Medicaid, requiring large
employers to offer insurance and requiring other individuals to purchase
health insurance (with the assistance of government subsidies and tax
credits). The ACA includes only minimal efforts to control the costs of care
and won’t change the underlying structure of the health care system.

9. The cost of health care in the United States is perilously high for three
reasons. First, a fragmented system multiplies administrative costs. Second,
health care providers have considerably more power than health care
consumers (whether individuals, the government, or insurers). Third, the for-
profit basis of the U.S. health care system makes it difficult to control costs.

10. Pharmaceutical companies are an important factor in rising health care
costs because they largely control which drugs come to market, how they
are advertised, and at what prices. Pharmaceutical companies market new
diseases as well as new drugs.

11. Although the ACA has made a difference, shockingly high numbers of
Americans nonetheless remain uninsured. Those who lack good insurance
are significantly more likely than others to experience illness, disability, or
death. Meanwhile, the ACA remains under attack.

REVIEW QUESTIONS

1. How and why does commercial insurance differ from insurance offered on a
nonprofit basis?

2. What is managed care? How can it restrain health care costs, and how can it
harm individuals’ health?

3. What are Medicaid and Medicare?

4. Why have health care costs in the United States risen?

5. Who are the uninsured?

6. Why do individuals who have health insurance still sometimes face financial
difficulties in paying their health care bills?

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194 C H A P T E R 8

7. How does underinsurance or the lack of insurance affect individuals’ health
and health care?

8. What are the benefits and limitations of the ACA?

CRITICAL THINKING QUESTIONS

1. Researchers believe they have identified a gene that increases women’s
risk of breast cancer. You are the chief administrator of a health insurance
plan. One of your board members, whose mother died from breast cancer,
argues that your plan should offer this test for free as a routine preventive
procedure.

a. Explain to the board member what information you would want before
you could make this decision and why you would want that information.
Be sure to think about the consequences for the plan as a whole as well
as for individual patients.

b. Would you want different information and reach a different decision if
you were a doctor in private practice? If you were a patient?

2. How do we ration health care in our present system? What are the financial
costs of this rationing? What are the social costs?

3. How are the costs of care distributed among U.S. residents now? Be sure to
think about not only costs paid out of pocket but also costs paid through
taxes for government-provided care. How would those costs be distributed
under a single-payer national health plan?

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195

C H A P T E R

Health Care Around

the Globe

C H A P T E R

9

ST
R/

AF
P/

Ge
tty

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ag

es

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196 C H A P T E R 9

LEARNING OBJECTIVES

After reading this chapter, students should be able to:

● Understand the most important measures for evaluating health care
systems internationally.

● Compare the strengths and weaknesses of health care systems in the most
developed nations.

● Identify the special problems faced by health care systems in the less
developed nations.

Some years ago, American journalist T. C. Reid moved to London with his young
family. As he writes:

Barely a week after we arrived in the U.K., our youngest daughter woke up with
a painfully infected ear, bright red and swollen like a chestnut. We could guess the
cause—it must have been that dubious ear piercing shop in one of the charming
street markets—but had no idea how to fix the problem. We had barely unpacked
our suitcases and certainly hadn’t had time to find a local doctor. Feeling desperate,
we piled into a roomy black cab and asked to go to the nearest hospital. Within
minutes, we were in the emergency room (that is, “casualty” ward) at St. Mary’s
Hospital, an ancient, much-the-worse-for-wear institution. . . . St. Mary’s on
Praed Street was the place where Sir Alexander Fleming discovered penicillin
in 1928; it looked as if no one had painted the walls since then.

After a quarter-hour’s wait there, a gentle nurse and an authoritative doctor
took command of our daughter’s case. They carefully removed the offending
earring, reduced the swelling, treated the infection (with a form of penicillin), and
offered a polite but firm instruction on the right way to care for the pierced ear.
Our daughter—and her parents—felt an enormous sense of relief.

I pulled out my check book and waited for the bill. I knew this treatment
was going to be costly—emergency rooms always are—but frankly, I was perfectly
willing to pay for the excellent and reassuring medical care we had received. The
nurse, evidently accustomed to American patients, smiled at my mistake. “You
can put away your checks,” she said, crisply and proudly. “There won’t be a bill
to pay. We do it a bit differently here. In the National Health Service, we don’t
charge for medical treatment.” With that, she sent us home.

Had the same minor medical crisis occurred at home, we would have
received the same level of professional treatment. But we would have received
something else along with it: a pile of bills. Having had a similar experience with
the emergency wards in the United States, I would expect that treatment . . .
would have brought in bills of about $200 from the hospital, $150 or so from

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197H E A LT H C A R E A R O U N D T H E G L O B E

the doctor, and $100 from some lab technician. And I would likely have faced
a three-month battle with an insurance company trying to get the bills paid. In
Britain, there was no need to argue with the insurance company over the bill,
because there was no bill. (Reid, 2009:117–118)

On television, in newspapers, and in public discussions, we often hear that the
United States offers the best health care in the world. Yet other countries—
both Western and non-Western, rich and not so rich—provide far better access
to care for their citizenry at lower costs and with better health outcomes.
In this chapter, we begin by looking at some basic measures for evaluating
health care systems before we explore the systems in six other countries—
Germany, Canada, Great Britain, China, Mexico, and the Democratic Republic of
Congo (DRC).

The health care systems in Germany, Canada, and Great Britain have often
been proposed as models for a revamped U.S. system. All of these systems are ranked
higher than the U.S. system by the nonprofit Commonwealth Fund (2017c). In
fact, the U.S. system has the lowest ranking among the 11 high-income nations
studied by the Commonwealth Fund, based on overall health markers such as life
expectancy, equitable distribution of health care costs among citizens, good health
outcomes relative to health expenditures, and responsiveness to consumer needs.
The health care systems in China and Mexico are not useful as models for the
United States, but they do help us understand how poorer countries have tried
and sometimes succeeded in improving their nation’s health despite limited re-
sources. Finally, the DRC provides an example of what happens when health care
systems collapse.

EVALUATING HEALTH CARE SYSTEMS

Universal Coverage

The most basic measure of any nation’s health care system is whether it provides
universal coverage, guaranteeing health care to all citizens and legal residents of
a country. The United States is the only more developed nation that neither
provides health care to all citizens nor recognizes a right to health care (a topic
discussed in Ethical Debate: Is There a Right to Health Care?). Instead, the U.S. gov-
ernment provides insurance to only a small percentage of the population, and
even under the Affordable Care Act (ACA) allows private insurers considerable
leeway in deciding who to insure and how much to charge for that insurance. In
contrast, all legal residents of Great Britain or Canada, regardless of income, place
of residence, employment status, age, or any other demographic characteristic, can
obtain state-supported health care—although they are guaranteed neither imme-
diate service nor every service they want.

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198 C H A P T E R 9

Portability

A second important measure of health care systems is whether they offer portable
benefits. As described in Chapter 8, most U.S. citizens receive their health insur-
ance through their jobs, their spouses’ jobs, or their parents’ jobs, so they may lose
their insurance if their family or work situation changes. Similarly, individuals who
receive Medicaid can lose this coverage if they move to another state or if their
income rises above the legal maximum, and those who retire or go on disability
often find that they can’t move to another area because the health insurance they
receive from their former employer won’t cover them elsewhere, and obtaining
insurance on their own would be too expensive. In contrast, in the other more
developed nations, individuals need not worry about losing their insurance no
matter what changes occur in their personal lives.

Is There a Right to Health Care?

With the sole exception of the United States, every developed nation in the world
considers health care a basic right. In the United States, on the other hand—and as
continued debate over the ACA reveals—many question whether individuals have a
right to health care, and no U.S. court has ever recognized such a right.

Those who argue against a right to health care draw on the language of
individualism. Individualism refers to a set of cultural beliefs and practices that
stresses the autonomy, equality, and dignity of individuals and therefore rejects
the idea that society should mandate certain rights for all members of a society
(Daniels and Roberts, 2008). Those who support individualism argue that in asserting
individuals’ rights to health care, we implicitly assert that health care workers have a
duty to provide that care. In so doing, therefore, we restrict the rights of health care
workers to control their time and resources. If we would not force a baker to give
bread to the hungry, how can we force doctors to give their services away or restrict
what patients doctors see, what services they provide, and what charges they assess?

Similarly, in asserting a right to health care, we implicitly assert that all members of
a society have a duty to pay the costs of that care. When we subsequently use tax dollars
to pay for health care, we restrict the rights of individuals to spend their money as they
please. Some individuals, both rich and poor, might consider this a good investment, but
many others would prefer to choose for themselves how to spend their money.

Moreover, according to those who take this position, asserting a right to health
care fails to differentiate between unfortunate circumstances and unfair ones
(Daniels and Roberts, 2008). Although it is certainly unfortunate that some individuals
experience pain, illness, and disability, it is not necessarily unfair. Society may have
an obligation to intervene when an individual unfairly experiences disability because
another acted negligently, but society can’t be expected to take responsibility for
correcting all inequities caused by biological or social differences in fortune.

Finally, if we assert that individuals have a right to demand certain social goods
from a society, where do we draw the line? Do individuals have a right only to a
minimum level of health care, or do they have a right to all forms of health care
available in a given society? And if we grant individuals a right to health care, how can
we deny them a right to decent housing, education, transportation, and so on?

Those who argue in favor of a right to health care, on the other hand, draw on
the language of social justice (Daniels and Roberts, 2008). Believing each individual

ETHICAL DEBATE

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199H E A LT H C A R E A R O U N D T H E G L O B E

Geographic Accessibility

Even those who have health insurance can face obstacles to receiving care, de-
pending on where they live. Both rural areas and poor inner-city neighborhoods
in the United States typically have relatively few health care providers per capita.
Meanwhile, other areas have an excess of doctors—a situation that can pressure
doctors to increase their prices or perform perhaps unnecessary procedures to
maintain their incomes despite competition for patients (Aizenman, 2010; Boden-
heimer, 2005c). These problems suggest that for both economic and medical
reasons, we should also evaluate health care systems according to whether they
include mechanisms for encouraging an equitable distribution of doctors such as
providing low-cost loans to medical students who promise to work for a few years
in underserved areas.

has inherent worth, they reject the distinction between unfortunate and unfair
circumstances. Instead, they argue that each individual has a right to at least a
minimum level of health care. Moreover, they argue that all members of a society are
interdependent in ways that a rhetoric of individualism fails to recognize. For example,
doctors who believe they should have full control over how and to whom they provide
services fail to recognize the many ways they have benefited from social generosity.
Medical training relies heavily on tax dollars, as do medical research projects,
technological developments, hospitals, and other health care facilities. In accepting
these benefits of tax support, therefore, doctors implicitly accept an obligation to
repay society through the health care they provide.

Similarly, those who support a right to health care argue that to consider the
decision to purchase health care as simply an individual choice misrepresents the
nature of this decision because it hardly makes sense to define something as a choice
when the alternative is death or disability. Nor does it make sense to talk about the
purchase of health care as a choice when individuals can do so only by giving up other
essentials such as housing or food.

Finally, those who support a right to health care recognize that society could
never afford to provide all available health services to everyone but argue that this
should not limit society’s obligation to provide a decent minimum of care to all. Doing
any less, they argue, denies the basic worth of all humans.

Sociological Questions

1. What social views and values about medicine, society, and the body are reflected
in the debate over a right to health care? Whose views are these?

2. Which social groups are in conflict over this issue? Whose interests are served by
offering universal health care? Whose interests are harmed?

3. Which of these groups has more power to enforce its view? What kinds of power
do they have?

4. What are the intended consequences of our current system, which rejects the
idea that individuals have a right to health care? What are the unintended social,
economic, political, and health consequences of this system?

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200 C H A P T E R 9

Comprehensive Benefits

Another important measure of health care systems is whether they offer all of
the essential services individuals need. The difficulty lies in defining what is
essential. Although all observers would agree that comprehensive health care
must include coverage for primary care, agreement breaks down quickly
when we begin discussing specialty care. Some individuals, for example,
consider coronary bypass surgery an essential service, but others consider it
an overpriced and overhyped luxury. Similarly, some people favor offering
only procedures necessary to keep patients alive, but others support offer-
ing procedures or technologies such as hip-replacement surgery, home health
care, hearing aids, or dental care, which improve quality of life but don’t
extend life.

Any system that does not provide comprehensive benefits runs the risk of
devolving into a two-class system in which some individuals can buy more care
than others can. To those who believe health care is a human right, such a system
seems unethical. Others object to such systems on economic grounds, arguing that
it costs less in the long run to plan on providing care for everyone than to hap-
hazardly shift costs to the general public when individuals who can’t afford care
eventually seek care anyway.

Affordability

Guaranteeing access to health care does not help those who can’t afford to purchase
it. Consequently, we also must evaluate health care systems according to whether
they make health care coverage affordable, restraining the costs not only of insur-
ance premiums but also of copayments, deductibles, and other crucial services
such as prescription drugs and long-term care. Although the ACA offers some
subsidies and tax credits to help people pay their premiums, it still leaves millions
with many indeterminate health care bills.

For health care to be affordable, individual costs must reflect individual
incomes. Around half of all insured Americans receive their insurance through
employers. Typically, employers pay part of the cost for that insurance and de-
duct the rest from each employee’s wages. Because low- and high-wage workers
have their salaries reduced by the same dollar amount, low-wage workers are
effectively hit harder: Paying $3000 per year for health insurance might, for
example, force a wealthier worker to scale back his vacation plans but force
a poorer worker to put off fixing his roof. For this reason, the U.S. system is
considered financially regressive in that poorer people must pay a higher
percentage of their income than do wealthier people. In contrast, in countries
such as Great Britain and Canada, health coverage is paid for through graduated
income taxes. Poorer persons pay a lower percentage of their income for taxes
and therefore for health care than do wealthier persons, creating a financially
progressive system. Either way—whether through taxes or lowered wages—
the nation’s citizens pay all the costs of health care. The only difference is who
pays how much.

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201H E A LT H C A R E A R O U N D T H E G L O B E

Financial Efficiency

Another critical measure of a health care system is whether it operates in a finan-
cially efficient manner. Currently, the multitude of private and public insurers in the
United States substantially drives up the administrative costs of the health care system
(Himmelstein et al., 2014). At the same time, the atomized and essentially entre-
preneurial nature of our health care system makes it virtually impossible to impose
effective cost controls. For example, doctors have responded to financial limits on
Medicare payments by raising the fees they charge to non-Medicare patients, a pro-
cess known as cost shifting. Neither of these problems was addressed by the ACA.

Consumer Choice

Finally, we need to evaluate health care systems based on whether they offer
consumers a reasonable level of choice. Currently, wealthy Americans can pur-
chase any care they want from any willing provider. In addition, Americans who
have fee-for-service insurance can seek care from any provider as long as
they can afford the copayments and deductibles, and—if their plan uses managed
care—as long as their insurer approves the care. Finally, those who have Medic-
aid or Medicare coverage can obtain care only from providers willing to accept
the relatively low rates of reimbursement offered by these programs, and those
who have no health insurance can obtain care only from the few places willing
to provide care on a charity basis. The ACA, however, has increased options for
many Americans.

As we will see later in this chapter, in Mexico, China, and the DRC, some cit-
izens have far greater choices in health care than do others, whereas in Germany,
Great Britain, and Canada, all citizens have similar levels of health care choice.

HEALTH CARE IN OTHER COUNTRIES

With these measures in mind, we can now look at the health care systems in
Germany, Canada, Great Britain, Mexico, China, and the DRC. Germany, Can-
ada, and Great Britain are all considered to be more developed nations, and each
guarantees portable, affordable, and universal health care coverage to its citizens.
In contrast, Mexico has just recently entered the ranks of the more developed
nations, and China is still striving to reach that goal. Both Mexico and China
are gradually improving their health care system, but progress in Mexico has
been steady, whereas China’s health care system has experienced significant highs
and lows. Finally, the DRC provides an example of the tremendous difficulties
often faced by both the public and health care providers in the least developed
nations. Despite their differences, however, most of the nations discussed in this
chapter combine socialistic and entrepreneurial elements in their health care sys-
tems. In contrast, health care in the United States and the DRC is primarily
organized as an entrepreneurial system—that is, a system based on private
enterprise and the search for profit. Table 9.1 summarizes the characteristics of
these six health care systems.

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202

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203H E A LT H C A R E A R O U N D T H E G L O B E

It is not surprising that each system described in this chapter has changed
over time. What is more interesting is that the changes seem to have moved var-
ious nations at least somewhat toward health care convergence—that is, to-
ward becoming more similar to each other (Beckfield et al., 2013; Stevens, 2010).
For example, the United States, Great Britain, and Germany all now utilize
diagnosis-related groups (DRGs) to restrain costs.

Two major causes of this convergence are globalization and economic pres-
sures. Globalization has expanded access to medical and scientific knowledge.
Increasingly, doctors use medical journals and Internet resources from around
the world to learn about new treatments. Similarly, medical and pharmaceuti-
cal corporations now market new technologies internationally. Thus, doctors in
many different countries are adopting the same technologies and placing similar
economic pressures on their health care systems.

Second, whether a country’s economy is booming or weakening and whether
its health care system is largely capitalist or largely socialist, the cost of health care
can press governments to reduce costs. Countries with largely capitalist health
care systems may do so by restricting the role of the market in health care, whereas
countries with largely socialistic health care systems may do so by encouraging the
role of the market. The latter situation in which countries begin encouraging the
private purchase of health care, the private practice of medicine for profit, and the
operation of market forces in health care overall is referred to as the privatization
of health care. As in the United States (and as discussed in Chapter 8), privatiza-
tion reflects a neoliberal perspective.

Germany: Social Insurance for Health Care

Modern Germany is the product of a tumultuous 20th-century history, includ-
ing more than a decade of Nazism and the division of the country in two after
its defeat in World War II. Yet despite the destruction wrought by two world
wars and the economic stresses that accompanied the reunification of East and
West Germany in 1990, the nation is a stable constitutional democracy and
now enjoys one of the strongest economies in Europe. The gross national in-
come (GNI) per capita is $49,530, compared to $58,030 in the United States
(Population Reference Bureau, 2017). (These figures are given in “international
dollars,” with $1 equaling the amount of goods and services one could buy for
$1 in the United States.)

Structure of the Health Care System Health care in Germany is based on
a system of social insurance (Commonwealth Fund, 2017c). Social insurance
refers to insurance provided by large social groups (such as regions, occupations,
or industries) to their residents or members. This system was adopted in 1883 by
politicians who hoped that offering workers accessible health care, as well as hous-
ing and unemployment and retirement benefits, would diffuse political tensions
that might otherwise lead to a more radical redistribution of power and wealth
in German society (Leith et al., 2009). Social insurance remains the center of the
current German health care system.

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204 C H A P T E R 9

Purchasing Care As in the United States, nongovernmental insurance forms
the basis of the German health care system (Commonwealth Fund, 2017c). But
whereas U.S. insurance providers must compete to survive in a profit-driven mar-
ket, in Germany around 90% of health insurance is provided by nonprofit social
insurance groups known as sickness funds. For employed individuals, the cost of
belonging to a sickness fund is around 15% of income. Approximately half of that
cost is paid by the individual for his or her entire family and the remainder is paid
by the employer. Because costs are based on income, the system, like Britain’s, is
financially progressive.

Although all Germans are required to have health insurance, those who earn
over a set threshold have the option of purchasing private health insurance instead
of or in addition to sickness fund insurance. Around 10% of Germans now take
this option.

Paying Doctors and Hospitals German doctors are paid differently depending
on the nature and location of their work. Those who work in hospitals or for other
organizations receive annual salaries, whereas those in private practice are paid on
a fee-for-service basis. However, increasingly insurers are “bundling” payments,
offering a set fee for doctors and other providers, both in and out of hospitals, who
together care for patients with a specific condition such as diabetes or a hip joint
that needs replacing. The hope is that integrating care across various providers will
result in better health and lower costs—although there is concern that this struc-
ture may instead lead to inefficient caregiving. Hospitals receive their operating
budgets from the sickness funds and receive their capital budgets (for items such as
new magnetic resonance imaging machines) from the government.

Access to Care All Germans are required to have health insurance, and all
German health insurance programs are required to provide a comprehensive pack-
age of health care benefits. With the exception of minimal copayments, insurance
covers all costs of dental care, maternity care, hospitalization, outpatient care, pre-
scription drugs, and preventive measures such as vaccinations. As a result, Germans
have few incentives to put off obtaining needed care and see doctors an average
of 10 times per person per year, more than twice as often as do U.S. citizens
(OECD, 2018). Germans can see any doctors they like. However, they must first
get referrals from their primary care doctors, except for emergency, gynecological,
pediatric, dental, or eye care.

Controlling the Costs of Care A major factor driving up costs of health care
in Germany is the oversupply of doctors. To control this, Germany forbids doctors
older than age 68 from working for the sickness funds. In addition, doctors who
open new practices in areas where many doctors already practice cannot receive
reimbursement through the social insurance system.

To control hospital costs, Germany now uses a system similar to the DRG
system in the United States. In addition, the government can restrain the pur-
chase and use of unnecessary and expensive technologies because it determines
hospitals’ capital expense budgets. Finally, to control drug costs, the sickness funds

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205H E A LT H C A R E A R O U N D T H E G L O B E

encourage doctors and consumers, through both education and economic incen-
tives, to adopt more cost-effective drugs.

Two factors still hamper efforts to constrain costs. First, hospitals have opposed
policies designed to shift care when warranted to less expensive outpatient settings
because the hospitals fear their incomes will fall. Second, the vast number of insur-
ance providers in the German system has kept administrative costs high.

Health Outcomes Whether because of its health care system or because of its
high standard of living and commitment to providing social services to its popula-
tion, Germany enjoys a high standard of health. Although conditions in the former
East Germany remain poorer than in West Germany, those differences are rap-
idly disappearing. Life expectancy in Germany now averages 80, two years more
than in the United States (and with far less variation among its citizenry). Infant
mortality in Germany is among the lowest in the world: 3.3 per 1000 live births
compared with 5.8 in the United States (Population Reference Bureau, 2017).

Canada: National Health Insurance

Canada’s health care system is ranked second best (after Australia) among the 11
nations studied by the Commonwealth Fund (2017c). Like the United States,
Canada is a financially successful democracy made up of various provinces and
territories more or less equivalent to U.S. states. Although its GNI per capita of
$43,420 is around one-third lower than that of the United States, its economy is
strong. In addition, because of steady immigration, Canada’s population is younger
on average than populations in the majority of more developed nations, which
increases the likelihood of having a relatively healthy population.

Canada is also, however, a huge country, with vast social differences reflecting its
vast geographic spaces. Its population is highly concentrated along its southern bor-
der, as are most health care personnel and facilities. Neither health status nor health
care access is as good in rural areas or in its remote northern regions, where many
of the residents are poor Native Americans (known in Canada as indigenous peoples).

Structure of the Health Care System The backbone of the Canadian health
care system is the Canada Health Act of 1984. That act stipulates that health in-
surance must cover all medically necessary services except mental health care. In
addition, insurance must be universal, portable from province to province, publicly
administered on a nonprofit basis, and accessible to all regardless of ability to pay.

The Canadian system is built around public insurance paid for primarily by
each Canadian province, with assistance from the federal government (Common-
wealth Fund, 2017b; Duncan, Morris, and McCarey, 2009). For this reason, the Ca-
nadian system is referred to as national health insurance, or (as the previous
chapter noted) a single-payer system. In fact, however, the Canadian system is
a decentralized one, with each province retaining some autonomy and offering a
somewhat different health care system. Underpinning the system are payments that
the federal government gives the provinces yearly to run their health care systems.
To receive these payments, provinces must offer comprehensive medical coverage to

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206 C H A P T E R 9

all residents through a public, nonprofit agency. Although the details of coverage vary
across provinces, each province must charge residents only minimal fees and must
allow residents to move to another province without losing their coverage.

Purchasing Care Through a combination of federal and provincial taxes, the
public health insurance systems cover 70% of all health care costs, including most
costs for hospital and medical care and some costs for prescription drugs, dental
care, long-term care, and mental health services (Duncan et al., 2009). Because the
system is based primarily on graduated income taxes, it is financially progressive:
Wealthier persons pay a higher proportion of their income in taxes and therefore
pay more toward health care than do others.

The remaining 30% of health costs are divided about equally between private
insurers and private individuals paying out of pocket. Private insurance takes two
forms. Most commonly, Canadians purchase private insurance to cover services
not included in the national health insurance system. In addition, some provinces
now allow residents to purchase private insurance that covers services that are
included in the national health system. Such insurance enables individuals to buy
these services immediately rather than having to wait their turn in the national
health insurance system.

Paying Doctors and Hospitals Hospital doctors in Canada are paid on salary. Most
nonhospital doctors work in private practices and are paid on a fee-for-service basis
by the government insurance systems. Doctors submit their bills directly to the health
insurance system using fee schedules negotiated annually between the provincial med-
ical associations and provincial governments. Unlike in the United States, doctors in
Canada can’t balance bill (or “extra bill,” as it is known in Canada): billing patients
for the difference between what the patients’ insurance will pay and what the doctor
wants to charge. In addition, some provinces control costs by setting annual caps on
the total amounts they will reimburse doctors. In practice, this means reimbursing
doctors less for each service rendered as the total number of services rises.

Canadian hospitals (almost all of which are nonprofit) annually receive an
operating budget and a capital expenditure budget from their provincial insurance
system. Hospitals can spend their budgets as they like as long as they provide care
to anyone in their region who needs services.

Access to Care Canadians average eight doctor visits per person per year com-
pared with four visits for U.S. citizens (OECD, 2018). Waiting times for tech-
nologically complex care have been a problem in Canada, although rarely in
life-threatening circumstances. Most importantly, Canadians are far less likely than
U.S. residents to go without needed health care for financial reasons or to risk
bankruptcy if they do seek health care. Moreover, although Canadians are less
likely to receive certain high-technology procedures such as coronary artery bypass
surgery, this may reflect overuse in the United States rather than underuse in Canada.

Controlling the Costs of Care Costs of health care have risen rapidly in
Canada, primarily because of population growth and increased prices for drugs

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207H E A LT H C A R E A R O U N D T H E G L O B E

and advanced technologies. The United States currently spends 17% of its
gross domestic product (GDP) on health care, whereas Canada spends 11%
(OECD, 2018).

How does the Canadian system restrain health care costs? Most important, a
single-payer system dramatically reduces administrative overhead (Himmelstein et
al., 2014). In a single-payer, nonprofit system, no one need spend money selling
or advertising insurance, paying profits to stockholders, sending bills to multiple
insurers and individuals, or tracking down those who don’t pay their bills. Nor is
money spent collecting funds to run the system because those funds are already
collected from the public through existing taxation systems.

The single-payer system also saves money by centralizing purchasing power.
As the sole purchasers of drugs in Canada, the provinces have substantial leverage
to negotiate with pharmaceutical companies regarding drug prices. Similarly, as
the sole payer of doctors’ bills, the provinces have considerable bargaining power
when negotiating with doctors over how much to reimburse doctors per service.
Finally, as the sole payer of hospital budgets, the government can implement effi-
cient regional planning and avoid unnecessary duplication of expensive facilities
and services.

Nevertheless, costs have risen substantially. Paying doctors on a fee-for-service
basis makes it more difficult for Canada to control medical costs. When, for example,
the provinces banned balance billing, doctors responded by increasing the number
of services they performed (with the provinces responding by reducing the amount
they reimbursed for each service). Finally, Canadian hospitals, like U.S. hospitals, have
reduced their costs by shifting toward outpatient services and shorter patient stays,
thus moving some costs from the health care system to family caregivers.

Health Outcomes Despite continuing problems in access to health care, out-
comes compare favorably with those in the United States. Infant mortality in
Canada is 4.3 per 1000 births compared with 5.8 in the United States, and average
life expectancy is three years longer in Canada. Of course, these health outcomes
tell us more about social conditions than about the quality of health care. Never-
theless, these data suggest that the Canadian health care system, although certainly
not perfect, is superior to the U.S. system.

Great Britain: National Health Service

As the home of the Industrial Revolution, Britain for many decades was a leading
industrial power. Along with its industrial strength came a strong labor movement
as workers united to gain political power within Britain’s parliamentary govern-
ment. As a result, a commitment to protecting its citizens, including a commitment
to universal health care coverage, has long been central to Britain’s identity. Be-
ginning in the 1980s, however, the nation’s economy declined while health care
costs rose. To restrain those costs, subsequent governments instituted a series of
reforms designed to introduce market principles into the health care system while
retaining universal health coverage (Lopes, Coppola, and Riste, 2009). Currently,
GNI per capita in Britain is $42,100, compared to $58,030 in the United States.

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208 C H A P T E R 9

Structure of the Health Care System Whereas Canada provides its citizens
with national health insurance, Great Britain since 1948 has provided care through
its National Health Service (NHS) (Commonwealth Fund, 2017c). In Can-
ada, the government provides insurance so individuals can purchase health care
from private practitioners. In Great Britain, on the other hand, the government
directly pays virtually all health care costs. As a result, the two systems look quite
similar to health care consumers but differ substantially from the perspective of
hospitals, health care workers, and the government. This section focuses on the
structure of the NHS in England, one of the three countries that (along with
Scotland and Wales) make up Great Britain.

Purchasing Care Unlike U.S. citizens, most English citizens rarely see a medical
bill, an insurance form, or any other paperwork related to their health care. The
NHS uses tax revenues to pay virtually all costs for a wide range of health care
services, including medical care, visiting nurses for the homebound, homemakers
for chronically ill persons, and some aspects of long-term care.

The NHS receives its funds almost solely through general taxation, with small
supplements from employers and employees. As in Canada, because the health care
system is paid for through graduated income taxes, it is financially progressive.

Paying Doctors and Hospitals As in Germany, almost all medical specialists
work as salaried employees of the NHS at hospitals or other health care facilities,
although they can earn extra income by seeing private patients. In contrast, most
English general practitioners work as private contractors, increasingly in large
group practices. General practitioners are paid by capitation, a system in which
doctors are paid a set fee per year for each patient in their practice regardless of
how many times they see their patients or what services the doctors provide. In
such a system, doctors lose income when they provide more services. In addition,
general practitioners receive financial supplements if they have low-income or
elderly patients, practice in medically underserved areas, or meet government tar-
gets for preventive services such as immunizing more than a certain percentage of
children in their practices.

The vast majority of hospitals in England belong to the government
(although some now include beds for private patients). The hospitals operate semi-
autonomously, but regional NHS officials and hospital administrators work to-
gether to ensure that each hospital can offer quality care to patients.

Access to Care Under the NHS, individual financial difficulties no longer keep
English citizens from receiving necessary medical care. Waits can be uncomfort-
ably long for nonemergency care, but any case delayed more than 18 weeks is
reported to national authorities for further action. In addition, the NHS has re-
duced substantially the geographic inequities that for generations made medical
care inaccessible to many rural dwellers, although access to care remains a problem
in poor, inner-city neighborhoods. Britons average five doctor visits per person
per year compared with four visits for U.S. citizens (OECD, 2018). Access to
high-technology care and expensive new drugs, however, remains lower than in

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209H E A LT H C A R E A R O U N D T H E G L O B E

the United States. That said, in the United States access to treatments is limited
only by the ability to pay, whereas in England a national panel of medical experts
decide which services should be offered to citizens based on their effectiveness and
then sets the prices for those services. Those prices are considerably lower than
average prices in the United States and must be honored by drug manufacturers,
private practice doctors, and anyone working under NHS auspices. For example,
until it was taken off the market in 2011, many U.S. health insurers (including
Medicare) paid up to $100,000 per patient per year for the anticancer drug Avas-
tin, even though strong evidence suggested it was ineffective (Kolata and Pollack,
2008). In contrast, the NHS decided against covering it from the start, arguing
that NHS money would be better spent on less expensive drugs with better track
records. In sum, both the American and British systems limit access to care but in
different ways with different consequences.

Controlling the Costs of Care Great Britain spends around 10% of its GDP on
health care, almost half the percentage spent by the United States (OECD, 2018).
Like Canada, Britain has made its health funds go further than they otherwise
would through national and regional planning and by keeping salaries relatively
low. Because the government owns a large proportion of health care facilities and
employs a large proportion of health care personnel, it can base decisions about
developing, expanding, and locating high-technology facilities on a rational assess-
ment of how best to use available resources and can avoid the unnecessary prolif-
eration of expensive facilities. Similarly, because it is such a large buyer, the NHS
can negotiate drug prices effectively with pharmaceutical firms.

In addition, England has attempted to restrain government health care expen-
ditures by promoting the privatization of care. Privatization was initially promoted
in the late 1990s by a liberal government that saw it as a way to quickly expand
the numbers of health care providers and access to health care. More recently, con-
servative governments have adopted privatization as a way to reduce government
expenditure and expand the nation’s market economy. Private companies can now
run primary care practices funded by the NHS, private hospitals can compete
for NHS contracts against public hospitals, and NHS hospitals can now offer a
variety of services on a cash basis. In addition, officially commissioned groups
of general practitioners in each region are now required to put services (such as
nursing home or hospital care) up for bid rather than deciding based on their own
judgment whether to use for-profit or NHS services. Finally, and as in Germany,
both private and public hospitals have been pressured to control costs by a DRG
sort of system.

Health Outcomes Despite some access problems in the NHS, health outcomes
have remained good. Infant mortality is lower than in the United States (3.9 versus
5.8 per 1000), and life expectancy is two years longer (Population Reference
Bureau, 2017). However, individuals’ social class and ethnicity continue to affect
both health and health care access, although considerably less than in the United
States. Moreover, the current budget crisis may well bring substantial cuts to the
NHS despite high popular support for the program.

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210 C H A P T E R 9

China: Promises and Perils

Although many observers have proposed using the health care systems of Ger-
many, Canada, and Great Britain as models for a restructured U.S. health care
system, few would seriously propose China (officially known as the People’s Re-
public of China) as a viable model. China’s culture differs greatly from that of the
United States, so its citizenry has distinctly different values regarding what con-
stitutes an acceptable health care system. In addition, China’s GNI per capita of
only $15,500 (Population Reference Bureau, 2017) severely limits its options, and
the remaining communistic underpinnings of its economy make a different set of
health care options feasible there than in the United States. (These data and this
discussion don’t include Hong Kong, which only became part of China in 1997
and operates under a separate political structure.) That said, China’s story suggests
how less developed nations can protect their citizens’ health if they make a long-
term commitment to primary care and public health (LaFraniere, 2010; Riley,
2007; Wang, Xu, and Xu, 2007).

China’s health care system reflects its unique history and situation. When the
Communist Party in 1949 won control of mainland China after many years of
civil war, it found itself in charge of a vast, poverty-stricken, largely agricultural,
and densely populated nation. Most people lived in abject misery while a small
percentage enjoyed great wealth. Malnutrition and famine occurred periodically,
life expectancies for both men and women were low, and infant and maternal
mortality were shockingly high. In urban areas, only the elite typically could afford
medical care. In rural areas, where most of the population lived, Western medical
care barely existed.

Structure of the Health Care System In 1950, one year after winning control
of mainland China, the Communist government announced four basic princi-
ples for the new nation’s health care system (Anson and Sun, 2005:10). First, the
primary goal of the health care system would be to improve the health of the
masses rather than of the elite. Second, the health care system would emphasize
prevention rather than cure. Third, the health care system would integrate Western
medicine with traditional Chinese medicine. And fourth, to attain health for all in
a country with few doctors and widespread poverty, China decided to rely heavily
on “physician extenders” and mass campaigns.

The term physician extenders refers to individuals (such as nurse practi-
tioners and physician assistants in the United States) who can substitute for doctors
in certain circumstances. China’s unique use of physician extenders began in 1965
with the development of barefoot doctors (now known as village doctors). These
workers came from rural backgrounds and received around three months of train-
ing supplemented by continuing education. After their training, they alternated
between working in health care and in agriculture. The government supported
this development as a way to improve health in rural areas and reduce the power
of the doctors from the pre-Communist elite. Assistant doctors (who receive three
years of postsecondary training) were later added to the mix to provide minor
surgery as well as primary care.

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211H E A LT H C A R E A R O U N D T H E G L O B E

Similarly, in urban areas, street doctors were trained to perform a similar role,
offering both primary care and basic emergency care, as well as health education,
immunization, and assistance with birth control. Street doctors have little formal
training and work in outpatient clinics under doctors’ supervision.

The second unique feature of China’s health care history was its use of mass
campaigns (Horn, 1969). For example, to combat syphilis, which was endemic in
much of China when the Communists came to power, the government first closed
all brothels, outlawed prostitution, and retrained former prostitutes for other work.
They then trained thousands of physician extenders to identify persons likely to
have syphilis by asking 10 simple questions, such as whether the person had ever
had a genital sore. By so doing, the government made manageable the task of
finding—in a population of more than 500 million people—the small percentage
of people who needed to be treated for syphilis. The government also mandated
testing for persons applying for marriage licenses, newly drafted soldiers, and en-
tire populations in areas where syphilis was especially common. These measures
were in no way democratic, but they dramatically reduced the prevalence of
syphilis in China.

Purchasing Care By the 1980s, China’s economy was changing from a largely
socialized and centrally controlled system toward a more decentralized, econom-
ically heterogeneous model. These changes would be mirrored in the country’s
health care system (Chen, 2001; Tu, 2019; Wang et al., 2007).

For rural Chinese—around 60% of China’s population—the move to a
less-socialized economy led to a sharp decline in access to health care (Wang
et al., 2007). Before then, rural residents received basic health care (of varying
quality) at little or no cost through the agricultural communes where they lived
and worked. Within these communes, members shared all profits and costs, in-
cluding those for health care. Each commune had between 15,000 and 50,000
members, several village doctors, and a clinic staffed by assistant doctors.

Beginning in 1978, the central government began pulling back from its so-
cialist principles and introducing market principles (Tu, 2019). Over the next few
years, most agricultural communes reverted to their original noncommunal village
structures, with each family given land to farm by the village. Families now kept
their profits but were responsible for their own welfare if costs exceeded profits.
Because of this shift in financing, the former communes no longer earned suffi-
cient revenues to continue providing health care. Instead, rural residents had to
shift to purchasing primary health care on a fee-for-service basis—if they could
afford it.

Similarly, as the government shifted to emphasizing economic development
and away from providing social services, insurance coverage decreased in urban
areas (Tu, 2019). Individuals who worked in the growing private sector were espe-
cially likely to lack insurance. As a result, paying for health care out of pocket has
become more common.

Between 2005 and 2011, however, insurance coverage soared from less
than 50% to virtually 100%—a remarkable and unparalleled achievement (Yu,
2015). That change was spurred by the 2003 epidemic of severe acute respiratory

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212 C H A P T E R 9

syndrome (SARS) in China, which highlighted the need for a strong health care
system, and was made possible by China’s newly strong economy (Yu, 2015). Chi-
na’s decision to refocus on its health care system was also reinforced by socialist be-
liefs that emphasize working to improve the welfare of the population (Tu, 2019;
Yu, 2015).

Paying Doctors and Hospitals Currently, nonhospital doctors in China work
primarily on a fee-for-service basis, and hospital doctors work on salary. In addi-
tion, many townships (made up of six or more rural villages) have a clinic where
doctors work on salary but are allowed to divide among themselves any profits
that the clinic generates. As a result, doctors have an incentive to order unnecessary
tests and procedures (Wang et al., 2007).

Similarly, hospitals now receive only a small portion of their budgets from the
government. As a result, they are under great pressure to generate income by sell-
ing drugs and services and by starting other income-generating enterprises. Con-
sequently, hospital patients run considerable risk of receiving unnecessary (and
potentially dangerous) drugs, surgeries, and other treatments (LaFraniere, 2010).

Access to Care Although access to insurance has risen dramatically, access to care
remains an issue. Many services are not covered by insurance, and prices for those
services have risen. Rural areas remain especially underserved with fewer doctors,
fewer well-trained doctors, and fewer hospital beds. And rural residents who move
to cities cannot use their insurance because insurance only covers care in the geo-
graphic area in which one was born.

Primary care remains affordable throughout the nation, but there are few
well-trained primary care doctors per person. As a result, people often turn to
hospitals, which can be prohibitively expensive for anything beyond basic care).
Moreover, both hospitals and clinics are so overburdened that it is difficult to get
timely care (Wee, 2017).

That said, the government is moving to increase coverage for various medical
services and to improve access to care. It has established a national fund to sup-
plement the health care budgets of poorer regions and an insurance program for
childhood immunizations. Those who purchase this insurance for a small premium
receive free immunization for children up to age seven and free treatment if a child
develops one of the infectious diseases the immunization program is supposed to
prevent. More than half of all children in the country belong to this program.
Another program offers prenatal and postnatal care to women and infants. Finally,
the country has moved in the last few years to merge its rural and urban health
care systems, which should lead to more equitable access to needed care (Com-
monwealth Fund, 2017c).

Health Outcomes Although China’s economy is developing rapidly, it still
spends only around 5.2% of its GDP (around $733 per person) on health care,
considerably less than that spent in the more developed nations (OECD, 2018).
Nevertheless, as its economy has grown, its health outcomes have improved.
Whereas in 1960 infant mortality was 150 deaths per 1000 and life expectancy

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213H E A LT H C A R E A R O U N D T H E G L O B E

was 47 years, currently infant mortality is 10 per 1000 and life expectancy is 77,
only four years lower than in the United States (Population Reference Bureau,
2017). Although large and increasing differences in health status remain between
rural and urban dwellers, China now stands on the cusp of the epidemiological
transition, with chronic and degenerative diseases increasingly outpacing infec-
tious diseases as the leading causes of death.

Nevertheless, some regions of China continue to face health problems that
have long characterized the less developed nations such as insufficient access to
clean drinking water. The rise of a market economy has contributed to these
problems as pressure to develop profitable industries has increased water and air
pollution and decreased occupational safety, especially in rural areas (Chen, 2001).
Similarly, pressures on the health care system to control costs and generate profits
has led to a decreased emphasis on preventive care and increased emphasis on
profit-generating treatments and diagnostic procedures.

Despite these problems, however, China offers lessons on how to improve health
in less developed nations. As Chapter 4 described, three factors seem to explain how
China (like Sri Lanka, Costa Rica, Vietnam, and Cuba) achieved excellent health
outcomes at low cost (Caldwell, 1993; Riley, 2007). It is not surprising that health
outcomes improved when access to medical care improved. But improved health out-
comes depended even more on emphasizing family planning and increasing education.
Increasing women’s education was especially important. Once women’s educational
levels increased, their power in the family increased, giving them greater control over
family planning. Women’s lives thus were less often cut short by childbirth, and their
babies were born healthier. In addition, as women’s status rose, they and the children
who depended on them more often received a fair share of the family’s food, thus
reducing malnutrition and increasing life expectancies.

Mexico: Moving toward Equitable Health Care

Understanding Mexico’s health care system is particularly important for U.S. citi-
zens because Mexico shares a long and permeable border with the United States.
People routinely travel across the border in both directions for work or pleasure,
bringing their diseases with them. In addition, both Mexicans and U.S. citizens
sometimes cross the border to seek health care, although Mexicans more often
travel north to seek medical care for life-threatening health conditions, and U.S.
citizens more often travel south to seek inexpensive cosmetic surgery, dental work,
or medical drugs.

Mexico has only recently entered the ranks of the more developed nations
and still has much in common with the less developed nations. As Mexican in-
dustry has developed, many people have moved off the land, and now more than
three-quarters of Mexico’s population live in cities. Those cities contain both
middle-class neighborhoods that enjoy health and living conditions similar to
those found in the more developed nations and impoverished slums that lack
such basic facilities as running water and sewer systems. These slums are inhabited
primarily by migrants from rural areas. Rural areas, especially those inhabited pri-
marily by indigenous peoples (similar to Native Americans in the United States),

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214 C H A P T E R 9

generally are poor, and around 40% lack sewer systems (Pan American Health
Organization, 2012). GNI per capita remains only $17,740—considerably higher
than in China but far lower than in the United States or in the European nations
discussed in this chapter (Population Reference Bureau, 2017).

Structure of the Health Care System Unlike any of the other countries de-
scribed in this chapter, Mexico has a three-part system for health care: (1) private
health care and health insurance for the wealthiest, (2) a government-provided
insurance program for salaried workers (Social Security), and (3) a separate gov-
ernment-provided insurance program for everyone else (Seguro Popular) (Frenk
et al., 2006). This three-tiered system is a product of Mexico’s unique history in
which revolutionary fervor and conservative sentiments have always counterbal-
anced each other and in which the social and economic division between indige-
nous people (who now make up less than 10% of the population) and others (who
are primarily a mix of Spanish and indigenous people) has remained important.

Over the centuries, Mexico has experienced several revolutions—some vio-
lent and some at the ballot box. Throughout the 20th century, these revolutions
resulted in gradual improvements in the health care available to Mexico’s citizens.
In 1917, Mexico’s new constitution first gave the federal government responsibil-
ity for health care. The government soon began providing funds for rural clinics
staffed by health aides and, by the 1930s, began requiring all new physicians to
work for a year in a rural community.

The next major change in the health care system occurred in 1942 when
the government established the Social Security program and opened a network
of modern health clinics and hospitals around the country for Social Security
members. However, that program covered only salaried workers—approximately
half the population—leaving many others with no access to health care or with
crushing debts if they seek such care. Consequently, in 2003, Mexico passed a
law aimed at reforming this system (Knaul et al., 2012). Under the 2003 law, all
Mexicans not eligible for Social Security can instead obtain membership in an-
other government-run health insurance program known as Seguro Popular (Pub-
lic Insurance). Membership is free for the poorest 20% of Mexicans and available
on a sliding scale to all others. Less than a decade later, more than 50 million
people had enrolled in the program, giving Mexico essentially universal health in-
surance coverage (Knaul et al., 2012). However, between 4 million and 12 million
Mexicans—most of them from rural, indigenous communities—cannot enroll in
the program because they lack birth certificates (Telesur, 2016).

Other inequities still remain within the system (Knaul et al., 2012). Social Se-
curity provides a more comprehensive package of health benefits than does Seguro
Popular, and urbanized and wealthier regions continue to have more and better
health care providers and facilities than do rural and poorer regions under both
Social Security and Seguro Popular. Although these inequities are diminishing, the
system as a whole remains underfunded, so problems are likely to continue.

Purchasing Care Mexicans typically pay only small copayments or other fees
for their health care. Fees are waived for the poorest Mexicans.

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215H E A LT H C A R E A R O U N D T H E G L O B E

Paying Doctors and Hospitals Most Mexican doctors work as salaried gov-
ernment employees, although most also take private, fee-for-service patients on a
part-time basis, and some work solely for private patients. Public hospitals receive
their funds from the government out of tax revenues.

Access to Care Individuals who purchase health care in the private sector have, of
course, a wide choice of doctors and hospitals. Most Mexicans, however, must use the
doctor or the clinic to which they are assigned for primary care (although in theory
they have some choice). To obtain specialty care, patients must first get referrals from
their primary care doctors. Such referrals can be difficult to get, however, because of
government cost controls that restrict the number of practicing specialists. For the
same reason, patients who do get referrals typically have long waits before they can get
appointments with specialists. As a result, many patients subvert the system by instead
seeking specialty care at emergency clinics or from private doctors if they can afford it.

Mexicans average three doctor visits per person per year compared with four
visits for U.S. citizens (OECD, 2018). Their access to technologically intensive
care, however, remains limited. In addition, these services are haphazardly dis-
tributed, with more services available in cities and wealthier regions (most in the
north) than in rural areas and poorer regions (most in the south). Recent reforms,
however, have reduced these differences (Knaul et al., 2012).

Health Outcomes Although Mexico remains rife with social and economic in-
equities and resulting inequities in health, it has nevertheless achieved notable im-
provements in health outcomes for much of its population. Consequently, by some

Although its health care system is far from perfect, Mexico is working hard to improve access to medical care
across the country, including in rural areas inhabited largely by indigenous people.

AP
Im

ag
es

/R
od

rig
o

Ab
d

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216 C H A P T E R 9

measures, Mexico appears to have completed the epidemiological transition—
cancer and heart disease now kill more Mexicans than do infectious diseases, and
life expectancy is 77, only two years less than in the United States (Population
Reference Bureau, 2017). Infant mortality, child mortality, and maternal mortality
all decreased substantially between 2000 and 2010 (Knaul et al., 2012).

These health outcomes have been achieved at relatively little cost. Mexico
spends just over $1000 per person on health care—around 6% of its GDP, com-
pared to 17% in the United States (OECD, 2018).

Democratic Republic of Congo: When Health Care Collapses

Current conditions in the DRC are the result of more than a century of corrupt
and unstable governments. During the 1880s, King Leopold II of Belgium gained
control over what was then known as the Congo Free State, holding it as his pri-
vate property. Although Belgian administrators helped develop basic infrastructure
such as roads and hospitals, they also exploited natural resources for Belgium’s
benefit, used brutal force when it suited their purposes, kept virtually all power in
Belgian hands, and inflamed ethnic conflict among Congolese ethnic groups to
keep them from uniting against Belgian control.

Belgium relinquished control over the DRC in 1960. Since then, the country
has been governed primarily by a series of corrupt, ruthless dictators (often funded
by the United States for its own purposes). To make matters worse, beginning in
1998, the country was torn by a ferocious civil war fueled by interethnic conflict
and competition over valuable minerals. The numbers of dead from that war ap-
proach those from World War II, and the widespread use of mass rape as a weapon
stunned the world.

Although the civil war officially ended in 2003, the violence continues, and
the central government’s control over the military, paramilitary groups, and the
public remains fragile. Moreover, years of warfare led to environmental destruc-
tion, the abandonment or destruction of agricultural lands, and large-scale move-
ment of citizens away from rural war zones into substandard, temporary housing
in cities. All these factors have fed malnutrition and disease, including preventable
outbreaks of cholera, measles, and malaria—and, most ominously, Zika and Ebola
viral diseases (Doctors Without Borders, 2014). The DRC remains one of the
world’s poorest nations, with a GNI per capita of only $730 (Population Refer-
ence Bureau, 2017).

Structure of the Health Care System On paper, the health care system in the
DRC consists of a network of hospitals, primary care clinics, and public health
workers distributed around the country’s numerous health districts (Inungu,
2010). These days, however, it is difficult to even talk about a health care system
in the DRC. During the civil war, many doctors fled rural areas or fled the nation
altogether, many hospitals were damaged or destroyed, and many pharmacists lost
access to basic medications. Although conditions have improved since then in
urban areas (primarily because of disease-specific health programs sponsored by
the World Bank, World Health Organization, and other international nonprofit

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217H E A LT H C A R E A R O U N D T H E G L O B E

organizations), the situation remains dire. In areas where conflict continues, health
care personnel have been harassed or threatened, and many clinics have been aban-
doned (Doctors Without Borders, 2014).

Purchasing Care Although treatment in state-run clinics and hospitals is
supposed to be offered at low prices, in reality patients and their families are
often expected to pay for everything, including medicines, bandages, and other
supplies. Moreover, even the lowest of fees are too high for many Congolese
to pay. Others may decide against going to a doctor because they know they
can’t afford any medicines that the doctor might prescribe (Doctors Without
Borders, 2014).

Because of both cultural traditions and a lack of access to Western medicine,
many Congolese rely on homemade herbal remedies or seek care from traditional
midwives or traditional healers called ngangas (Inungu, 2010). Ngangas are be-
lieved able to determine whether an illness was caused by natural or supernatural
forces and to prescribe appropriate treatments such as wearing a talisman to ward
off evil or drinking an herbal potion. Some of the treatments used by traditional
practitioners undoubtedly help (if only through a placebo effect), but others un-
doubtedly cause harm.

Paying Doctors and Hospitals In theory, doctors and hospitals receive regular
salaries and budgets from the federal government. In practice, many doctors have
been paid little or nothing for years, so they support themselves by charging fees
to patients and their families (Michon, 2008). Most hospitals now receive most of
their funding from nonprofit organizations based in the more developed nations.

Access to Care According to the U.S. Agency for International Development
(2018), 70% of Congolese people have little or no access to modern medical care.
Most of the rest rely on temporary facilities staffed by international aid workers.
Meanwhile, the wealthiest Congolese travel to South Africa or elsewhere when-
ever they need care (Inungu, 2010).

Health Outcomes By all measures, health outcomes in the DRC are abysmal.
Average life expectancy is only 60 years, far below that in most nations around the
world. Similarly, 69 of every 1000 babies die in infancy—12 times higher than in
the United States (Population Reference Bureau, 2017). That said, these numbers
are considerably better than they were just a few years ago.

IMPLICATIONS

A critical approach to health care reform suggests that for true structural changes
to occur in the U.S. health care system, we must be willing to challenge the power
dynamics underlying the current system—something that did not happen with
passage of the ACA. Anyone interested in promoting such change can benefit from
the experiences of other countries that have successfully done so.

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218 C H A P T E R 9

Germany’s example suggests that it is possible to have an effective and cost-
efficient system even with many different insurers—although in Germany, all the
insurers are nonprofit. Similarly, Canada’s history suggests that eliminating private
insurers—major power holders in the current system—can reduce costs substan-
tially by eliminating the costs of selling, advertising, and administering the various
insurance plans. Eliminating private insurers also eliminates the costs that accrue
when doctors, hospitals, and other health care providers must track and submit
bills for each client to each insurance company.

Although it is unlikely that the United States would ever go so far as to estab-
lish a national health system as Britain has done, Britain’s experience illustrates the
benefits of centralizing control. And all of the countries described in this chapter
(except the DRC) illustrate how establishing government control over both op-
erating and capital budgets for hospitals and other facilities can restrict the dupli-
cation of services and proliferation of technologies that have driven up the costs
of the existing system. By the same token, establishing a national fee schedule for
service providers, such as Canada uses, would enable the government to restrict
the rise of those fees. Even more control is possible if the government, like Brit-
ain’s, restricts doctors to salaried practices so they can’t increase their incomes by
increasing the number of procedures they perform. At the same time, mandating
national health coverage, regardless of the nature of the system, would guarantee
a large enough risk pool to make community rating feasible and affordable.
Finally, using income taxes to pay for health care would more equitably distribute
the costs of financing the system.

These issues may all come to the fore again as debate continues over repealing
or revising the ACA.

SUMMARY

1. Health care systems can be evaluated according to whether they offer
universal coverage, portable and comprehensive benefits, geographically
accessible care, affordable coverage, financial efficiency, and consumer choice.

2. Globalization has combined with economic pressures to lead to health care
convergence. Countries that are primarily capitalist have restricted market
forces in health care; countries that are primarily socialist have increased
market forces.

3. Health care in Germany is overwhelmingly obtained through nonprofit
social insurance plans known as sickness funds. Social insurance refers to
insurance provided on a nonprofit basis by social groups such as cities,
occupations, or industries.

4. Canada offers universal coverage through a single-payer (government-
run) National Health Insurance program. Governments provide Canadian
hospitals with their operating and capital expenditure budgets. Hospital
doctors are paid on salary, and primary care doctors are paid fee-for-service,
with fees negotiated between medical associations and the government.

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219H E A LT H C A R E A R O U N D T H E G L O B E

5. Canadians have greater access to care than do U.S. citizens, with better
outcomes and lower costs overall. However, reductions in federal subsidies
for health care have led to longer waiting lines and increased pressure for
privatization.

6. Great Britain provides universal access to health care through its
government-run National Health Service. Primary care doctors are paid by
capitation; specialists are salaried government employees.

7. By centralizing purchasing power, Canada, Germany, and Great Britain
have gained the ability to effectively negotiate prices with health care
providers and thus keep down costs. By controlling hospital budgets, these
governments have reined in unnecessary duplication of expensive services.
By using single-payer systems, Canada and Great Britain have dramatically
reduced administrative overhead.

8. To control costs, Canada, China, and Great Britain have made some moves
toward privatization of health care.

9. By emphasizing mass campaigns and physician extenders, China was able to
improve access to care and quality of care for millions of poor citizens. Life
expectancy also rose because the government committed to family planning
and to public education for men and, most important of all, women.

10. As China’s economy became more capitalistic and decentralized, it moved
toward a fee-for-service system. Access to care declined, especially in rural
areas. Since the beginning of the new millennium, however, the government
has sought to merge market reforms with its socialist underpinnings and has
worked to improve access to health care and reduce inequities in access.

11. Mexico now provides essentially universal health care access. However, that
access comes within a three-tiered system: (a) private health care for those
who either have no health insurance or believe that purchased care is higher
quality, (b) a government-provided insurance program for salaried workers,
and (c) a separate government-provided insurance program for everyone
else. Moreover, urbanized and wealthier regions continue to have more and
better health care providers and facilities than do rural and poorer regions.

12. Conditions in the DRC illustrate how a health care system can collapse and
the consequences when that happens.

REVIEW QUESTIONS

1. Define the eight measures of health care systems, and explain why each is
important.

2. What is health care convergence? What evidence of convergence can be
found in the histories of health care in Great Britain and China?

3. How are doctors and hospitals paid in Canada? In Great Britain?

4. What is the difference between national health insurance and a national
health service?

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220 C H A P T E R 9

5. How does access to primary and hospital care in Canada compare with
access to care in the United States?

6. What aspects of the health care systems in Canada and Great Britain have
helped them to restrain costs? What aspects have kept costs high?

7. How has the rise of market forces affected health care in Great Britain?

8. What aspects of its health care system have enabled China to provide good health
at low cost to its people? What factors have led to a worsening of coverage?

9. What are the similarities and differences between health care in Mexico and
the DRC?

CRITICAL THINKING QUESTIONS

1. Compare and contrast the health care system in the United States with the
system in one other country. Explain which system you would prefer.

2. Do people have a right to health care? To primary care? To secondary
care? To tertiary care? Do children? Adults? Elderly people? People with
disabilities? Unemployed drug addicts? Illegal aliens?

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221

C H A P T E R

Health Care Settings and

Technologies

C H A P T E R

10

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222 C H A P T E R 10

LEARNING OBJECTIVES

After reading this chapter, students should be able to:

● Understand how hospitals, nursing homes, and hospices have evolved.
● Critique the ways that hospital, nursing home, and hospice care are now

structured.
● Assess the benefits and burdens of caring for ill and disabled individuals at

home.
● Analyze the nature and consequences of health care technologies.

Stacy Trebing yanked off the yellow paper hospital gown that covered her shorts and
T-shirt, unhooked the surgical mask from behind her ears, and stuffed both items
into the garbage pail in the entryway of her daughter’s hospital room. She’d been at
her three-year-old daughter’s bedside practically every minute of the past 10 days.

She needed a breather.
The next morning, Stacy’s daughter would have a bone marrow transplant,

a medical procedure that would either cure her or kill her. Every minute since
Katie’s birth had been leading to this day. Everything Stacy and her husband,
Steve, had done, every decision they’d made, had propelled them here—including
the most controversial of their choices: to [use in-vitro fertilization to] create a
new human being they had selected as an embryo because he genetically matched
a critical portion of his sister’s DNA.

That one-year-old baby would be brought into the hospital the following
morning to donate the life-changing bone marrow that was the only chance to heal
his sister [who had an extremely rare genetic condition that would otherwise require
painful, debilitating treatments and that would still likely kill her by her 40s].
Christopher Trebing was born to be a member of the Trebing family [to parents who
had wanted another child regardless], but he was also born with a job to do. He
would be put under general anesthesia while a doctor inserted needles repeatedly
into his hips and siphoned the tissue that could repair Katie’s ailing body.

Katie and Christopher wouldn’t see each other on what the doctors called
Day Zero. Katie would stay in isolation in her room, and Christopher’s marrow
would be transported in an IV bag and dripped into her. Doctors told Stacy that
because it had been so difficult to get an IV into Christopher’s veins during his
preoperative blood testing, they might have to go through a more dangerous route,
a vein in his leg, to administer anesthesia. Stacy feared for both children.

As she sat, Stacy wasn’t dwelling on the many ethical issues that troubled the
bioethicists and critics who thought no baby should be conceived with a purpose:
Who would protect the medical interests of what was referred to as a “savior
sibling” when his parents were so focused on curing the older child? How would

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223H E A LT H C A R E S E T T I N G S A N D T E C H N O L O G I E S

such a baby feel when he grew up and learned he had been brought into the
family with a responsibility? Who would object if the child was later called upon
to donate something more radical than bone marrow to help the sibling—a kidney
perhaps?

As his mom, Stacy had more personal concerns: How would she feel if
Christopher’s much-anticipated bone marrow donation didn’t work? What if
Katie’s body rejected Christopher’s marrow and Katie died? Would it change
how Stacy felt about Christopher? Would it make it hard to be his mother?
If anything ever happened to Katie, Stacy asked herself uneasily, would I be
resentful toward him? (Whitehouse, 2010:ix–xi)

In the end, the Trebing’s gamble paid off, and both children emerged happy and
healthy. Their story vividly illustrates the nature of modern health care technologies
and the many questions those technologies raise, including questions about which
technologies should be developed, who should receive them, and what are the
financial and other costs of these technologies to both individuals and society in
general. This chapter offers a sociological analysis of health technologies and of
four key settings in which those technologies are offered: hospitals, nursing homes,
hospices, and family homes. We begin with a discussion of hospitals.

THE HOSPITAL

The hospital as we know it is a modern invention. Before the 20th century,
almost all Americans, whether rich or poor, received their health care at home
from friends, relatives, and assorted health care providers. Because these providers
used only a few small and portable tools, hospitals were unnecessary.

Some form of institution, however, was needed for those Americans who
lacked friends or relatives to provide care at home or the means to purchase such
care. For these individuals, the only option was the almshouse. Here they—along
with orphans, criminals, people with disabilities, people with mental illnesses, and
other public wards—received essentially custodial care. Conditions in almshouses
generally were appalling. Inmates often had to share beds or sleep on the floor, and
rats often outnumbered humans. Hunger was common, and blankets and clothing
scarce. These conditions, coupled with the lack of basic sanitation, made alms-
houses ideal breeding grounds for disease (Rosenberg, 1987:31–32).

THE PREMODERN HOSPITAL

Wealthy Americans considered almshouse conditions quite acceptable for those
they regarded as lazy, insolent, alcoholic, promiscuous, or incurable (categories
they believed included all nonwhites). By the end of the 18th century, however,

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224 C H A P T E R 10

wealthy Americans began to view these conditions as unacceptable for those they
considered the “deserving” poor—the respectable widow, the worker disabled by
an accident, or the sailor struck by illness far from home. With such individuals in
mind, philanthropists decided to develop a new form of institution, the hospital,
devoted to inpatient care of the “deserving” sick—so long as they didn’t suffer
from chronic, contagious, or mental illnesses (Rosenberg, 1987:19–20). These hos-
pitals were nonprofit and became known as voluntary hospitals because they
relied heavily on unpaid (volunteer) charity work.

Although hospitals offered better conditions than did almshouses, they
remained chaotic and dirty places. According to historian Charles Rosenberg:

Nurses were often absent from assigned wards and servants insolent or
evasive. Chamber pots [used for urinating and defecating] remained
unemptied for hours under wooden bedsteads, and mattresses were
still made of coarse straw packed tightly inside rough ticking. Vermin
continued to be almost a condition of life among the poor and working
people who populated the hospital’s beds, and lice, bedbugs, flies, and
even rats were tenacious realities of hospital life. (1987:287)

These conditions, plus the severe limitations of contemporary medicine, kept
mortality rates high and taught the public to associate hospitals with death rather
than treatment. To make matters even worse, hospitals functioned as total in-
stitutions (described in Chapter 7) in which patients traded individual rights
for health care (Rosenberg, 1987:34–46). Hospital rules regulated patients’ ev-
ery hour, even mandating work schedules for those who were physically capable.
Patients who didn’t follow the rules could find themselves thrown into punish-
ment cells or frigid showers.

Beginnings of the Modern Hospital

Given the rigors of hospital life, the stigma of charity that accompanied hospi-
tal care, and the popular association of hospitals with death, early 19th-century
Americans entered hospitals only as a last resort (Rosenberg, 1987:98–99). During
the Civil War, however, the need to care for sick and wounded soldiers led to
significant improvements in hospital organization and care, at least for the bet-
ter-financed Union Army. These changes demonstrated that hospitals need not be
either deadly or dehumanizing.

After the war, widespread adoption of new ideas about the dangers of
germs and the importance of cleanliness helped make hospitals safer and more
pleasant. So, too, did technological changes such as the development of disposable
gauze and cheaper linens, which made cleanliness feasible (Rosenberg, 1987:
122–141). Concurrently, population increases (through births and immigration),
the movement from farms to overcrowded cities, and the rise of dangerous
factories led to a rise in both contagious diseases and serious accidents. These
changes increased patient demand for hospitals. Meanwhile, doctors also began
pushing for hospital construction to gain access to new medical technologies and
sterile surgical theaters (Rosenberg, 1987:149).

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225H E A LT H C A R E S E T T I N G S A N D T E C H N O L O G I E S

Yet affluent Americans remained generally unwilling to tolerate the condi-
tions on even the cleanest hospital wards. As a result, and to compete with the
for-profit, private hospitals that began appearing during the second half of
the 19th century, voluntary hospitals developed a class-based system of services
(Rosenberg, 1987:293–294). Those who could pay for private accommodations
received better heating and furnishings, exemption from many hospital rules, and
privileges such as more anesthesia during operations. Thus voluntary hospitals be-
gan to lose their ethos of service and became increasingly similar to their for-profit
competitors (Stevens, 1989:112).

The Rise of the Modern Hospital

By the early 20th century, the hospital as we now know it had become an im-
portant American institution and a major site for medical education and research.
Between 1873 and 1923, the number of hospitals increased from 178 to almost
5000 (Rosenberg, 1987:341). These new hospitals also included public hospitals.
Such hospitals were established to provide services to those groups—people with
mental illnesses, people with chronic illnesses, and the “undeserving poor”—that
voluntary hospitals considered to be unworthy and for-profit hospitals considered
to be money losers. However, African Americans still could obtain care only in a
few segregated, poorly staffed, and poorly funded wards and hospitals; in municipal
hospitals where medical students and residents could learn skills by practicing on
African American patients; and sometimes in other hospitals for emergency care
(Stevens, 1989:137).

By this time, surgical admissions to hospitals far surpassed medical admissions
(Rosenberg, 1987:150). Most patients went to a hospital to have their tonsils,
adenoids, or appendixes removed; their babies delivered; or their injuries treated
(Stevens, 1989:106). The emphasis on technology as a defining aspect of mod-
ern hospitals further reinforced hospitals’ tendency to focus on the care of acute
illness rather than chronic illness.

The next major change in hospital care in the United States came in 1965
when the federal government implemented Medicaid and Medicare. These
health insurance plans dramatically increased the profits available to hospitals. This
in turn led to both a rise in for-profit hospitals and increasing mergers of hospitals
into ever-larger for-profit and voluntary hospital chains (such as Humana and
Sisters of Charity, respectively).

As hospital profits grew, so did costs to the federal government via Medicaid
and Medicare. As a result, the government for the first time developed a vested in-
terest in controlling hospital costs. Ironically, the resulting price-control programs
(described in Chapter 8) such as diagnosis-related groups (DRGs) pressured
voluntary hospitals (which remain the core of the hospital system) to focus more on
the bottom line and thus to act more like for-profit hospitals (Stevens, 1989:305).

Hospitals Today

Since the turn of the new century, additional cost-containment programs at the
state and federal level have especially squeezed funding for public hospitals. Under

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226 C H A P T E R 10

any circumstances, these hospitals have trouble making ends meet because so many
of their patients can’t afford to pay for their care. To cover that care, public hospi-
tals rely on funding from state and local governments. This funding, however, has
declined substantially in recent years, forcing public hospitals to cut staff, reduce
services, or close altogether. The same pressures have led to the closure of 85 rural
hospitals of all types between 2010 and 2018, most of which served predominantly
poor populations (Healy, 2018).

Financial concerns—and desires—have also affected the mix of services of-
fered by voluntary and for-profit hospitals. Rather than fighting managed care
insurers over which treatments and services the insurers will cover, these hos-
pitals now increasingly offer extra services that patients are willing to pay for
out of pocket such as yoga, meditation, and massage (Abelson and Brown, 2002;
Rosenthal, 2017). Meanwhile, the search for profits has encouraged these hospitals
to offer new, technologically intensive treatments and tests even if evidence of
their benefits is weak and other nearby hospitals already offer them. The result has
been a proliferation of expensive technologies such as magnetic resonance imaging
machines, intensive care units, and open-heart surgical suites. Conversely, many
hospitals have closed, shrunk, or outsourced money-losing units such as obstetrics
wards, emergency departments, and psychiatric units (Rosenthal, 2017). Finally,
an astounding number of hospitals have merged in recent years. By so doing,
they have essentially created monopolies that allow them to set whatever prices
they want for services because there is little or no competition (Rosenthal, 2017).

At the same time, as voluntary and for-profit hospitals have shifted toward
providing more intensive care for middle-class Americans, public hospitals have
increasingly become primary care providers for the poor. Patients who have
neither health insurance nor money to pay for care sometimes turn to hospital
outpatient clinics and emergency departments not only for treatment of acute
problems such as gunshot wounds but also for chronic problems such as backaches.

The Hospital–Patient Experience

Although hospitals no longer terrify and endanger patients as they did in the 19th
century, a hospital stay still can be alienating and frightening. The bureaucratic
nature and large size of modern hospitals coupled with the highly technological
nature of hospital care often means that the patient as an individual person, rather
than just a diseased body, gets lost.

The reasons behind this are obvious and to some extent unavoidable. First,
increasingly, patients enter hospitals needing emergency care. Often health care
workers must respond immediately to their needs and have no time to talk with
them to ascertain their preferences—which many are physically incapable of ex-
pressing in any case. Second, the highly technical nature of hospital care encour-
ages staff to focus on the machines and the data these machines produce rather
than on the patient as a whole person. In the modern obstetric ward, for example,
workers often focus much of their attention on the electronic fetal monitor rather
than on the laboring woman (Simonds, Rothman, and Norman, 2007). Third,
and as we will see in Chapter 11, medical training encourages doctors to focus

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227H E A LT H C A R E S E T T I N G S A N D T E C H N O L O G I E S

on biological issues much more than on patients’ psychological or social needs.
Fourth, as large institutions necessarily concerned with costs and profits, hospitals
must rely on routines and schedules, with little leeway for individual needs or de-
sires. Hence the common stories of nurses awakening patients from needed sleep
to take their temperature or blood pressure.

The Shift away from Hospitals

Increasingly, changes in financing have moved care away from hospitals. Because
insurers (including Medicare under the DRG system) typically pay hospitals only
preset amounts for inpatient surgery but will negotiate with hospitals over pay-
ment for outpatient surgery (i.e., surgery given without formally admitting the
patient to the hospital), many hospitals have opened outpatient surgical clinics,
which they use whenever feasible.

Similarly, insurers increasingly are reducing their costs by raising reimburse-
ment for outpatient care and lowering it for (more expensive) inpatient care, a
trend that the ACA further encourages. As a result, many hospitals have added
outpatient medical centers as well as surgical centers. For example, between 2000
and 2014, San Diego’s Scripps Health system closed one hospital and added 20
outpatient care sites (Vesely, 2014).

NURSING HOMES

From the start, American hospitals focused on caring for acutely ill persons and
assumed that families would care for chronically ill persons. During the course of
the 20th century, however, average life expectancy increased; families grew smaller,
more geographically dispersed, and less stable; and women less often worked at
home. As a result, more and more Americans needed to seek long-term care from
strangers, and nursing homes—facilities that primarily provide nursing and cus-
todial care to groups of individuals over a long period of time—became part of
the American landscape.

The number of nursing homes has more than tripled since 1980. Currently,
there are around 16,000 skilled nursing homes in the United States. Two-thirds of
homes are run for profit, a sharp rise from earlier years (Centers for Medicare and
Medicaid Services, 2016).

Gender, Age, Ethnicity, Class, and Nursing Home Usage

Around 1.4 million Americans currently live in nursing homes (Centers for Medi-
care and Medicaid Services, 2016). Some groups, however, are more likely than
others to find themselves in a nursing home.

Most strikingly, women are far more likely than men to become nursing
home residents. Indeed, women now constitute some two-thirds of residents,
partly because women more often live long enough to become enfeebled by age

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228 C H A P T E R 10

and partly because they more often survive their spouses, leaving no one to care
for them if they need help.

It is not surprising that older people are far more likely than others to live in
nursing homes, and that residents overwhelmingly are older than age 75. However,
the numbers of nursing home residents younger than age 65—indeed, younger than
age 30—has grown significantly in the past decade because of the rise in diabetes
and in gang violence, among other factors (Persson and Ostwald, 2009). Many young
people stay in nursing homes only temporarily while recuperating from a serious
illness or accident, but others stay for years. Still others find themselves in nursing
homes because they have a mental illness or disability and have no one who can help
them with basic daily tasks (such as preparing food or dressing themselves).

Regardless of why young people find themselves in nursing homes, their lives
can be grim and isolating: Few have interests in common with their elderly co-
residents, and many are in nursing homes in part because they have limited contact
with their families (Persson and Ostwald, 2009).

Historically, nursing homes residents overwhelmingly were white, but this is
shifting as the composition of the U.S. population changes. Unfortunately, African
Americans and Hispanics far more often find themselves in lower-quality nursing
homes, primarily because of their lower incomes (Fennell et al., 2010; Smith et al.,
2007). The same is undoubtedly true for poorer white Americans, although data
on this are unavailable.

It is important to note that nursing home residents these days are consider-
ably sicker on average than residents were 20 years ago. This change stems from
the economic incentives built into DRGs, which have encouraged hospitals to
discharge patients “sicker and quicker”—physically stable but still ill—once their
bills and lengths of stay exceed the limits set by Medicare. Those who can’t care for
themselves at home often are discharged directly to nursing homes.

Financing Nursing Home Care

Currently, nursing home care costs around $82,000 per year for those who pay out
of pocket (Genworth, 2017). Few Americans can afford these costs. Nor can most
afford insurance coverage for nursing home care, which typically is extremely
expensive. As a result, most residents rely on Medicare to pay their bills—at least
initially. However, Medicare pays only for skilled nursing care and at most for the
first 150 days. As a result, most individuals who need only custodial care or need
more than 150 days of care must turn to Medicaid to pay their bills. To be eligible
for Medicaid, however, they must first sell all of their assets (minus their houses if
they are married) and spend all of their savings (minus the cost of burial expenses
and minimum living expenses for their spouses). Thus, long-term nursing homes
residents (and their spouses) usually end up impoverished. Moreover, Medicaid
reimbursement for nursing homes is often less than the homes’ usual charges. As
a result, nursing homes actively work to solicit Medicare patients and avoid Med-
icaid patients. In addition, to free up beds for Medicare patients, nursing homes
often move Medicaid patients to less desirable areas (such as dementia wards) or
discharge them to lower-quality nursing homes (Rodriguez, 2014).

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229H E A LT H C A R E S E T T I N G S A N D T E C H N O L O G I E S

Working in Nursing Homes

Nursing home care is extremely labor intensive. To provide this care, nursing
homes rely almost solely on nursing assistants (who often have no training)
augmented by licensed practical nurses (who have completed approximately
one year of classroom and clinical training).

Nationally, nursing assistants (half of whom work in nursing homes and
one-quarter in hospitals) form one of the largest and fastest-growing health care
occupations (Bureau of Labor Statistics, 2017). Almost all are women, and most
are nonwhite. Many come from Africa, Asia, or Latin America and are not native
English speakers. As a result, as a group they have little ability to fight for better
working conditions. Currently, nursing assistants earn a median income of $27,000
(Bureau of Labor Statistics, 2017).

To understand the life of nursing home residents and the nursing assistants
who care for them, sociologist Timothy Diamond (1992) became certified as a
nursing assistant and worked for several years in a variety of nursing homes. He
soon concluded that the core of working as a nursing assistant is caregiving but
that those who train nursing assistants don’t recognize this basic fact. Instead, his
instructors taught him to recite biological and anatomical terms, measure vital
signs, and perform simple medical procedures. Instructors divorced these skills
from any social context or any sense that their patients were people rather than
inanimate objects. Moreover, the skills Diamond most needed were never taught,
such as exactly how do you clean an adult who has soiled a diaper in a manner
that preserves the individual’s sense of dignity? Only by labeling this caregiving as
mere physical labor could those who hire nursing assistants label them “unskilled”
and treat them so poorly.

Life in Nursing Homes

Diamond’s research underlines how the fates of nursing assistants and nursing
home residents intertwine and how even in the best nursing homes, the econom-
ics of a profit-driven system produce difficult conditions for both. According to
Diamond, within nursing homes

caregiving becomes something that is bought and sold. This process
involves both ownership and the construction of goods and services that
can be measured and priced so that a bottom line can be brought into
being. It entails the enforcement of certain power relations and means
of production so that those who live in nursing homes and those who
tend to them can be made into commodities and cost accountable units.
(1992:172)

In this process of commodification, or turning people into commodities,
“Mrs. Walsh in Bed 3” becomes simply “Bed 3.” To keep down the price of this
“commodity,” only the most expensive homes provide private rooms or separate
areas for residents who are dying, smelly, or psychologically disturbed. Privacy,
then, also becomes a commodity that few residents can afford.

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230 C H A P T E R 10

Nursing assistants, meanwhile, become budgeted expenses that homes try to
keep to an absolute minimum. This is not hard to do because federal standards
require far less staff than is necessary to provide adequate care (Rodriguez, 2014).
Yet almost no homes meet even those low standards (Rau, 2018). As a result, nurs-
ing home residents are unnecessarily placed at risk for numerous health problems.
For example, residents can experience malnutrition when there are not enough
assistants to cut up their food, help them eat, and encourage them to take more
than a few bites. Similarly, residents may be drugged, strapped to chairs, kept on
a strictly regimented schedule, or left in a single central room during the day so
they can be supervised by only a few assistants. One study found that 71% of new
residents received psychiatric drugs even though most had neither been diagnosed
with a psychiatric problem nor received such drugs before admission (Molinari
et al., 2010).

Although all these problems also can occur in nonprofit nursing homes, a re-
view of federal data from all U.S. nursing homes found that both quality of life and
quality of care were significantly worse in for-profit homes (Harrington et al., 2001).
One reason for this is that within the profit-driven system, managers constantly
stress to staff that providing care is less important than documenting care. As a sign
proclaimed in one nursing home where Diamond worked, “If it’s not charted, it
didn’t happen.” For example, state regulations where Diamond worked required
homes to serve residents certain “units of nutrition” each day. Consequently, each
day nursing assistants collected cards placed on residents’ food trays that named
the foods and their nutritional content. Every few months, state regulators would
inspect the cards and certify that the homes met state nutritional requirements.
Yet these cards bore little relationship to reality because the appetizing-sounding
names given to the foods rarely matched the actual appearance or taste of the
food. Nor did the cards note if a resident refused to eat a food because it was cold,
tasteless, or too hastily served. Similarly, sanitation regulations required homes to
shower residents regularly but did not require that the showers be warm. Nor did
they require the homes to hire enough nursing assistants so that residents who
used diapers could be cleaned as soon as needed or so that residents could get the
help they needed in using the toilet and thus avoid the indignity and discomfort
of diapers. Unfortunately, more recent research suggests that low reimbursement
rates by Medicare—and especially Medicaid—now encourage nonprofit nursing
homes to make similar choices (Rodriguez, 2014).

Ironically, in top-tier nursing homes, the same process of commodification
is now leading nursing home owners to encourage nursing assistants to empha-
size caring and indeed to think of residents as their kin (Dodson and Zincavage,
2007). By so doing, nursing homes can both charge higher prices for their “family
atmosphere” and get more work from assistants for the same low wages. But this
“purchased intimacy”—similar to that offered by massage therapists, beauticians,
and others—is a one-way transaction: Nursing assistants may treat residents like
family, but residents still often sling racist slurs at nonwhite nursing assistants. And
even in these “higher-quality” nursing homes, owners rarely allow nursing aides
time off to deal with problems in their own families or to grieve when residents
they cared about die.

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231H E A LT H C A R E S E T T I N G S A N D T E C H N O L O G I E S

HOSPICES

Origins of Hospice

Whereas nursing homes emerged to serve the needs for long-term care not met
by hospitals, hospices emerged out of growing public recognition that neither of
these options provided appropriate care for the dying.

Only in the past few decades has institutional care for the dying become a
public issue. At the beginning of the 20th century, few individuals experienced a
long period during which they were known to be dying. Instead, most succumbed
quickly to illnesses such as pneumonia, influenza, tuberculosis, or acute intestinal
infections, dying at home and at relatively young ages. Now, however, most Amer-
icans live long enough to die from chronic rather than acute illnesses. In addition,
as doctors and scientists have developed techniques for detecting illnesses in their
earliest stages, they now more often identify individuals as terminally ill long be-
fore death occurs. Thus, dealing with the dying is to some extent a uniquely mod-
ern problem and certainly has taken on a uniquely modern aspect.

Although modern medical care has proved lifesaving for many people, its ability
to extend life can turn from a blessing to a curse for those who are dying. (“Ethical
Debate: A Right to Die?” on p. 232) discusses this issue in more detail.) For various
reasons, including legal concerns about restricting care, financial incentives for using
highly invasive treatments, and a medical culture (described in the next chapter) that
emphasizes technological interventions, thousands of Americans each year receive
intensive, painful, and tremendously expensive medical care that offers little hope of
restoring quality of life or extending lives (Byock, 2013; Gawande, 2014). In nursing
homes, on the other hand, the emphasis on profit making and cost cutting often
results in dying persons receiving only minimal and depersonalized custodial care.

This lack of appropriate care for the dying led to the development of the
hospice movement. The first modern hospice, St. Christopher’s, was founded in
England in 1968 by Dr. Cicely Saunders to address the needs of the dying and to
provide an alternative to the alienating and dehumanizing experience of hospi-
tal death. The hospice admitted only patients expected to die within six months
and offered only palliative care (designed to reduce pain and discomfort) rather
than treatment or mechanical life supports. The hospice provided care in both St.
Christopher’s and patients’ homes.

The first American hospice, which closely resembled St. Christopher’s, opened
in 1974 in New Haven, Connecticut. Other hospices soon followed, emerging from
grassroots organizations of religious workers, health care workers, and community ac-
tivists seeking alternatives to hospitals and nursing homes. Public support for hospices
was so immediate and so great that in 1982, only eight years after the first American
hospice opened, Congress approved covering hospice care under Medicare.

Modern Hospices

The U.S. hospice movement has proved enormously successful, growing from one
hospice in 1974 to around 6100 hospices serving some 1.6 million clients annually

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232 C H A P T E R 10

(National Hospice and Palliative Care Organization, 2015). With that success,
however, have come changes. Whereas the original hospices were independent,
freestanding institutions, these days most hospice care is received in homes and
nursing homes. In addition, the original hospices were nonprofit organizations
that were primarily staffed by volunteers and emphasized individualized care and
patient participation. Now that hospices are primarily funded by insurers, they
have had to reconfigure their staffing and practices to meet standards for care based
on hospital protocols. Finally, around two-thirds of all hospices are now run on a
for-profit basis (National Hospice and Palliative Care Organization, 2015). For-
profit hospices are less likely than other hospices to provide care at home and are
more likely to declare clients ineligible for services even as they get closer to death,
apparently to reduce their costs and increase their profits (Aldridge et al., 2014).

A Right to Die?

In 1983, 26-year-old Elizabeth Bouvia, who lived with almost total paralysis from
cerebral palsy and near-constant pain from arthritis, presented herself for admission
to Riverside General Hospital. In years past, and despite her physical problems, Bouvia
had earned a degree in social work, married, and lived independently. However, after
her efforts to have children failed, her husband left her, and the state stopped paying
for her special transportation needs, she lost interest in living. Her purpose in coming
to the hospital, she told the hospital staff soon after her admission, was to obtain basic
nursing care and pain-killing medication while starving herself to death, cutting short
what might otherwise have been a normal life span. The hospital’s doctors took her
case to court and won the right to force-feed her. The court concluded that although
Bouvia did have the right to commit suicide, she did not have the right to force health
care workers to engage in passive euthanasia by allowing her to die through their
inaction.

In 1990, Janet Adkins, 54 years old and living with Alzheimer’s disease, killed
herself with the assistance of Dr. Jack Kevorkian—a process known as physician-assisted
death. Kevorkian had designed a machine that allowed people with severe disabilities
to give themselves a fatal dose of sodium pentothal and potassium in the privacy and
freedom of their homes. Over the next decade, Kevorkian helped more than 100 people
kill themselves without facing any legal penalties. In 1999, however, he was convicted of
second-degree homicide and sentenced to 10 years to 25 years in prison for committing
active voluntary euthanasia: taking the steps needed to end the life of someone who
has requested that he or she be killed. In Adkins’s case, Kevorkian administered a
lethal injection to rather than have Adkins administer the dose herself. Kevorkian was
released from prison in 2007 on the condition that he not assist in any further deaths.

In the Netherlands, meanwhile, doctors legally can practice active voluntary
euthanasia for patients who request it in writing and who are mentally competent,
incurably ill, and suffering intolerable and constant pain. Similar laws have been passed
recently in a few U.S. states (Warraich, 2017).

Those who support a “right to die” argue that competent adults have the right
to make decisions for themselves, including the ultimate decision of when to die.
They argue that death sometimes can be a rational choice and that it’s cruel to force
individuals to suffer extreme physical or mental anguish (Seale, 2010).

ETHICAL DEBATE

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233H E A LT H C A R E S E T T I N G S A N D T E C H N O L O G I E S

For all of these reasons, hospice care is now more cost oriented and less individu-
alized or patient centered than it was originally.

Use of Hospice

Around one-third of those who die in the United States use hospice services, for
a median of 17 days (National Hospice and Palliative Care Organization, 2015).
Women and whites are especially likely to use hospice care. In addition, most hos-
pice clients are older than age 65 and rely on Medicare to pay the costs (National
Hospice and Palliative Care Organization, 2015).

Because Medicare only pays for hospice care for six months, hospices lose
money if their clients survive beyond that time period. As a result, hospices

If we accept that death can be a rational choice, then harder questions follow.
Why is it rational only if one’s condition is terminal? Doesn’t it make even more sense
to end the life of someone like Elizabeth Bouvia, whose agonies may continue for
another 50 years, than to end the life of someone who will die soon regardless? Why
should this choice be forbidden to individuals simply because they can’t—physically
or emotionally—carry it out themselves? And why should we allow individuals to
choose death only through passive euthanasia, leaving them to languish in pain while
awaiting death when they could be killed quickly and painlessly?

Opponents of this view argue that the duty to preserve life overrides any other
values and that euthanasia is merely a nice word for suicide or murder. They question
whether Elizabeth Bouvia would have wanted to die if she still had the resources she
needed to live independently, and they wonder whether euthanasia gives society a
way to avoid responsibility for relieving the burdens imposed by illness and disability.

In sum, the use of euthanasia, whether active or passive, raises numerous difficult
questions: What are the consequences of effectively declaring it reasonable for
disabled people to choose death? What pressures does this place on individuals to end
their own lives rather than burdening others? What responsibilities does this remove
from society to make these individuals’ lives less burdensome? Finally, given that social
factors such as age, gender, and social class affect our perceptions of individuals’ worth,
how do we ensure that society won’t more willingly grant a right to die to women,
minorities, or other socially disvalued groups?

Sociological Questions

1. What social views and values about medicine, society, and the body are reflected
in the debate over a right to die? Whose views are these?

2. Which social groups are in conflict over this issue? Whose interests do the
different sides of this issue serve?

3. Which of these groups has more power to enforce its view? What kinds of power
do they have?

4. What are the intended consequences of recognizing a right to die? What are the
potential unintended social, economic, political, and health consequences of doing so?

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234 C H A P T E R 10

disproportionately choose to serve individuals with cancer because life expec-
tancies for such individuals can be predicted with some accuracy. However, use
of hospices by individuals with other diagnoses (especially dementia) is growing
(National Hospice and Palliative Care Organization, 2015).

Outcomes of Hospice Care

Research suggests that hospice care saves Medicare more than $2000 per person
and that even more could be saved if individuals entered hospice care sooner
(Taylor et al., 2007). To understand the full economic impact of hospice care,
however, we must take into account that around 40% of hospice users now die in
their homes (National Hospice and Palliative Care Organization, 2015). In these
circumstances, family members provide most care. To do so, they often must take
time off from work or drop out of the labor market altogether. Consequently,
hospice care might not reduce the costs of caring as much as shift the cost from
hospitals and insurers to families.

The health benefits of hospice care are clearer. One study using a large-scale
random sample of terminally ill Medicare recipients found that hospice clients
survive an average of one month longer than those who receive ordinary medical
care instead (Connor et al., 2007). Another study randomly assigned patients re-
cently diagnosed with a terminal illness to either hospice or regular medical care
and found that the hospice patients reported a higher quality of life, experienced
less depression, and survived almost three months longer than those who continued
with medical care (Temel et al., 2010). These individuals may have benefited both
from the supportive care of hospice and from avoiding the traumatic surgeries and
chemotherapies typically given to terminally ill patients.

HOME CARE

As the discussion of hospices suggested, most individuals who experience chronic
or acute health problems—whether children, working-age adults, or elderly and
whether their problems are physical or mental—receive most of their care at home.
This is even truer now than in the recent past because of technical, demographic,
and policy changes. Because of technological advances, babies born prematurely
or with birth defects and persons who have experienced severe trauma are increas-
ingly likely to survive, although often with severe disabilities that require lifelong
assistance. Much of this care is now given by family members in the home. In
addition, technological advances also have made it possible for families to provide
treatments at home that previously were available only in hospitals such as chemo-
therapy and kidney dialysis.

At the same time, the rise in the numbers of frail elderly, many of whom
have both multiple physical problems and cognitive impairments, has increased
the number receiving care at home. In addition, the movement begun in the
1960s (as described in Chapters 6 and 7) to deinstitutionalize people with dis-
abilities and mental illnesses, combined with the lack of community supports for

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235H E A LT H C A R E S E T T I N G S A N D T E C H N O L O G I E S

such individuals after deinstitutionalization, have shifted much of the burden of
care from state institutions to the home. Finally, as described previously, policy
changes have encouraged hospitals to discharge patients to their homes “sicker and
quicker,” in essence replacing paid hospital workers with unpaid family caregivers.

Because of limited public or private insurance coverage for home care, most
who need long-term supportive care receive services only from family members
and, less often, friends. Research suggests that home care has little impact on the
overall costs of care or the mental or physical health of those receiving care but can
produce small improvements in individuals’ satisfaction with life (Arno, Bonuck,
and Padgug, 1995; Weissert, 1991).

The Nature of Family Caregiving

Statistics as of 2018 indicate that around 45 million Americans regularly provide
care for elderly, ill, or disabled relatives or friends (National Alliance for Caregiv-
ing and AARP, 2015). Around two-thirds of these caregivers are women. Ethnic
minorities and poorer persons also are more likely to become caregivers, probably
because these groups experience higher rates of illness and disability and have less
access to formal services.

Those who care for the health needs of family members typically do so out
of love and often reap substantial psychological rewards. Nevertheless, caregiving
by family members should not be romanticized, nor should the financial, physical,
social, or psychological costs of caregiving be underestimated (Arras and Dubler,
1995; National Alliance for Caregiving and AARP, 2015).

The financial costs of caregiving are substantial. The demands of caregiving
force many family members to shift to part-time work or even abandon paid
employment. In addition, caregivers must purchase, often out of pocket, both ex-
pensive drugs and technologies and many everyday items such as diapers and ban-
dages. In addition, caregivers typically are responsible for purchasing a variety of
services and therapies from a range of companies and health care workers.

The physical costs also can be high. Caregivers are often exhausted or even
injured by repeated, strenuous tasks such as lifting a disabled person into bed. The
time burdens of caregiving also can become physically draining. The typical care-
giver spends 24 hours per week on caregiving, has been doing so for around four
years, and holds at least a part-time job as well (National Alliance for Caregiving
and AARP, 2015). Moreover, many people are simultaneously responsible for more
than one relative such as a child with a disability and a parent with Alzheimer’s
disease. It is no surprise that the more time caregivers spend in providing care, the
greater the toll on their health (National Alliance for Caregiving and AARP, 2015).

Taken together, the financial and physical burdens of caregiving often leave
individuals with little time, energy, or money for social relationships. Caregivers
often report that their relationships with both family and friends have suffered be-
cause of their responsibilities (National Alliance for Caregiving and AARP, 2015).
For example, a mother who spends hours each day caring for an ill child might
regret that she has so little time for her other children, and those children might
resent the attention given to their ill sibling. Problems are particularly acute when

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236 C H A P T E R 10

the person receiving care is mentally ill and throws family routines into chaos,
embarrasses other family members, or physically threatens their safety (Reinhard
and Horwitz, 1996; Tessler and Gamache, 1994).

Family life also can suffer when caregiving requires the use of high tech-
nology within the home. Slightly more than half of caregivers report providing
medical or nursing care such as cleaning feeding tubes, caring for colostomies,
and giving injections (National Alliance for Caregiving and AARP, 2015). John D.
Arras and Nancy Neveloff Dubler suggest that this invasion of the home by high-
tech medical procedures, mechanisms, and supporting personnel exerts a cost in
terms of important values associated with the notion of home. As they explain:

How can someone be truly “at home,” truly at ease, for example, when
his or her living room has been transformed into a miniature intensive
care unit?. . . Rooms occupied by the paraphernalia of high-tech
medicine may cease to be what they once were in the minds of their
occupants; familiar and comforting family rituals, such as holiday meals,
may lose their charm when centered around a mammoth Flexicare bed;
and much of the privacy and intimacy of ordinary family life may be
sacrificed to the institutional culture that trails in the wake of high-tech
medicine. (1995:3)

Finally, caregiving brings with it numerous psychological costs, especially for
the 50% of caregivers who report that they had no choice about taking on this
role (National Alliance for Caregiving and AARP, 2015). Caregivers can easily
become depressed when their efforts can’t stop or even slow the disease process.
This is especially true when caregivers must routinely inflict painful treatments on
their charges or when the burdens of caregiving are unceasing, as when a parent
must suction the lungs of a child with cystic fibrosis hour after hour, day after day,
to keep the child from dying. Moreover, as this example suggests, caregivers also
often bear the enormous psychological burden of being directly responsible for
another person’s life. In fact, family caregivers are now expected to manage in the
home—often with little training or technical support—technology considered
too complex for licensed practical nurses to manage in hospitals. Finally, caregivers
of persons younger than themselves face anxieties about what will happen to their
charges if the caregivers die first.

Easing the Burdens of Caregiving

The problems faced by family caregivers have led to the development of new
organizations, new organizational structures, and a new occupation to ease the
burdens of caregiving. Two major organizations—the National Alliance for the
Mentally Ill (NAMI) and the National Alliance for Caregiving (NAC)—are now
devoted to family caregiving. Both organizations work to increase assistance to
family caregivers and improve access to community-based care, and NAMI also
fights to decrease the stigma of severe mental illness.

Both respite care and family leave programs also were developed to ease
the burdens of caregivers. The term respite care refers to any system designed to give

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237H E A LT H C A R E S E T T I N G S A N D T E C H N O L O G I E S

caregivers a break from their otherwise unrelenting responsibilities, including paid
aides who provide care in the home for a few hours, daycare centers for elderly
and disabled adults, and nursing homes that accept clients for brief stays. Unfor-
tunately, only California and Pennsylvania fund respite care programs. In all other
states, respite care is expensive and difficult to find; only 15% of those included in
the NAC and AARP (2015) survey had ever used respite care. Minimal data are
available on the quality of these services (Kitchener and Harrington, 2004).

Similarly, although federal law gives employees the right to as many as
12 weeks of unpaid leave from work yearly to care for family members, few can
afford to take unpaid leaves. In addition, the law does not apply to part-time work-
ers, temporary workers, or employees of small firms. The law is also problematic
because it reinforces the idea that caring for ill and disabled persons is the respon-
sibility of the family—which, in practice, usually means women relatives—rather
than the responsibility of society as a whole (Abel, 2000).

Finally, those who provide care to relatives or friends may turn for assistance
to paid caregivers with bathing, dressing, light housework, and other basic tasks.
Most paid home care is provided by home health aides, who typically have
no formal training, or registered nurses, who have received at least two years
of nursing training and passed national licensure requirements. Aides are over-
whelmingly minorities and women, and they are highly likely to be immigrants.
Few receive any job benefits, and most receive only minimum wage. Because the
growth in paid home health care is so new, little more is known regarding these
workers or their work.

HEALTH CARE TECHNOLOGIES

Doctors and other healers have always used technologies in their work. Two hun-
dred years ago, doctors used knives to cut veins and “bleed” patients of their ill-
nesses and used strips of cloth to bandage the wounds afterward. One hundred
years ago, doctors used mercury compounds and electricity in attempting to cure
patients of masturbation or syphilis. In modern medicine, health care technology
includes everything from Band-Aids to computerized patient record systems to
heart–lung machines.

The Nature of Technology

Technology refers to any human-made object used to perform a task. In addi-
tion, the term is often used to describe processes that involve such objects. For
example, the term technology can refer to both the overall process of kidney dialysis
and the equipment used in that process.

Although we often talk about technology as if it is inherently either good or
bad—“technology has made our lives easier” or “technology has depersonalized
medical care”—the reality is more complex (Heath, Luff, and Svensson, 2003;
Timmermans and Berg, 2003b). The nature of a technology does determine the
range of ways it might be used, but whether it is harmful, helpful, or both depends

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238 C H A P T E R 10

on who uses it and in which ways as “Contemporary Issues: Technology, Terror-
ism, and Public Health” illustrates. Electricity is helpful when used by doctors to
stimulate muscle healing and harmful when used by doctors who are poorly edu-
cated or who work as torturers in dictatorships. Fetal monitors can depersonalize
childbirth when nurses stare at the screens rather than pay attention to the preg-
nant woman. But ultrasound imaging of fetuses can personalize pregnancy when
fathers literally visualize their future children as real for the first time. In addition,
such technologies can create a setting in which fathers, mothers, and health care
workers can discuss the emotional aspects of pregnancy and child rearing.

Similarly, we often talk about technology as if it is either a blank slate that
lacks any inherent nature or a force outside of human control. Again, the reality is
more complex. For example, doctors and hospitals now face considerable pressure
to collect data on patients, using computerized medical databases in hopes that
doing so will help identify and thus reduce medical errors (Timmermans and
Berg, 2003a). Because these databases prompt doctors to ask patients a specific
set of questions in a specific sequence, they implicitly encourage doctors to focus
only on certain questions and to organize the answers they receive in certain ways.
At the same time, doctors quickly learn to regain some control over the databases
through how they ask their questions and record the answers. Similarly, although
doctors who use these databases may press patients to answer specific questions,
patients can assert control by instead addressing a different set of issues (Timmer-
mans and Berg, 2003a).

For these reasons, we need to understand not only the nature of a given
technology but also the cultural system that determines how a technology will be

CONTEMPORARY ISSUES

Technology, Terrorism, and Public Health

Since the events of 9/11, it has been hard to ignore the risks that terrorism can pose
to nations and to public health—and the ways in which beneficial technologies
can be used for deadly purposes. We now recognize that genetic technologies can
be used to increase crop yields or wipe out crops and to create safe vaccinations
or increase the deadliness of viruses. Similarly, our sanitary water system, which
for generations has protected millions, could be poisoned by terrorists and spread
deadly disease, while attacks on nuclear power plants could spew nuclear radiation.

Obviously governments need to invest in security to protect against these and
other terrorist threats. But no security system is foolproof. As a result, it is also crucial
to invest in public health systems (Levy and Sidel, 2007). Among other things, our
health systems need to stockpile antibiotics, antiviral drugs, antitoxins, vaccinations,
and other essential drugs. We also need to invest in epidemiological surveillance:
strengthening the systems we use to identify new diseases and epidemics from the
start so they can be attacked quickly. In the United States, the Centers for Disease
Control and Prevention (CDC) has primary responsibility for these activities, as
do similar units in each state (Centers for Disease Control and Prevention, 2018).
Unfortunately, many political leaders are now focused more on lowering taxes
than on bolstering government services, no matter how vital; the CDC’s budget was
slashed in 2018, and may see further cuts in future (Newkirk, 2018).

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239H E A LT H C A R E S E T T I N G S A N D T E C H N O L O G I E S

used, by whom, and for what purposes. In addition, we must study not only how
society and social actors shape the use of technology but also how technology
shapes society and social actors.

In this section, we look at how technologies develop and gain acceptance.
We also consider how different groups within the health care world interact with
technology—and with each other.

The Social Construction of Technology

In the same way that we talk about the social construction of illness, we can talk
about the social construction of technology: the process through which groups
decide which potential technologies should be pursued and which should be ad-
opted. This concept in turn leads us to question who promotes and who benefits
from the social construction of any given technology.

Like the social construction of illness, the social construction of technology is
a political process that reflects the needs, desires, and relative power of various so-
cial groups. These groups can include manufacturers, physicians, the government,
and consumers. As a result, harmful technologies are sometimes developed and
adopted, and needed technologies sometimes are not.

The history of cardiopulmonary resuscitation (CPR) offers a fascinating example
of the social construction of technology. The purpose of CPR is to restore life to those
whose hearts and lungs have stopped working. In earlier times, the very notion of such
resuscitation would not have made sense to doctors or the public. Death was consid-
ered to be in God’s hands, and dead was dead. But since the rise of modern medicine,
doctors have struggled to find ways to restore life to those who die suddenly.

At the same time, doctors have grown increasingly able to understand the
slow trajectory of dying associated with cancer. And with the rise of the hospice
movement (described earlier in this chapter), both doctors and the public have
come to hold as an ideal the “good death” in which an individual comes to terms
with his or her dying, makes peace with family and friends, and receives appropri-
ate terminal care to minimize physical and emotional suffering.

None of this, however, applies to the sudden—and common—deaths caused
by stroke or heart disease. In his award-winning book Sudden Death and the Myth
of CPR, sociologist Stefan Timmermans (1999) argues that CPR and associated
resuscitation techniques have become part of American medical culture because
they appear to offer a “good death” in these circumstances. Innumerable television
dramas portray heroic doctors who save apparently dead patients through CPR,
and millions of dollars have been spent in teaching the general public to perform
CPR and outfitting community emergency response teams and hospital emer-
gency rooms with resuscitation equipment (Lidhoo, 2012). Yet CPR almost never
succeeds except when healthy individuals drown or are struck by lightning. The
typical person who receives CPR has at best a 1% to 3% chance—and probably
much less—of surviving, at an estimated cost of $500,000 per survivor. Moreover,
“survival” may be brief and may be accompanied by severe neurological damage
(Warraich, 2017). As a result, surveys suggest, almost no doctors want CPR per-
formed on them if their hearts should stop (Periyakoil et al., 2014).

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240 C H A P T E R 10

Why, then, has CPR become so widely adopted? Timmermans argues that
the widespread use of CPR reflects modern Americans’ discomfort with death.
The real benefit of CPR, according to Timmermans, is that it “takes some of the
suddenness of sudden death away” (1999:110). CPR allows families and friends
to believe they have done everything possible by getting their loved ones to treat-
ment as fast as possible. It also gives families and friends time to gather and to
recognize that death may be imminent, and it gives medical personnel a sense of
technical accomplishment as they fight to keep their patients’ bodily organs func-
tioning as long as possible. The use of C