Week 5 discussion

Medical Ethics
Accounts of

Ground-Breaking Cases
EIGHTH EDITION

Gregory E. Pence
University of Alabama at Birmingham

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MEDICAL ETHICS: ACCOUNTS OF GROUND-BREAKING CASES, EIGHTH EDITION

Published by McGraw-Hill Education, 2 Penn Plaza, New York, NY 10121. Copyright © 2017 by
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ISBN 978-1-259-90794-4
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Library of Congress Cataloging-in-Publication Data

Names: Pence, Gregory E., author.
Title: Medical ethics: accounts of ground-breaking cases / Gregory E. Pence,
 University of Alabama at Birmingham.
Other titles: Classic cases in medical ethics
Description: Eighth edition. | New York, NY: MHE, [2017] | Audience: Age:
 18+ | Editions 1-5 published under: Classis cases in medical ethics. |
 Includes bibliographical references and index.
Identifiers: LCCN 2016026704 | ISBN 9781259907944 (alk. paper)
Subjects: LCSH: Medical ethics–Case studies.
Classification: LCC R724 .P36 2017 | DDC 174/.2–dc23 LC record available at
 https://lccn.loc.gov/2016026704

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pen07945_fm_i_xxii.indd 2 09/12/16 8:52 PM

iii

This new edition retains in-depth discussion of famous cases, while providing
updated, detailed analysis of the issues those cases raise. Each chapter also focuses
on a key question that could be debated in class.

Unique to this text is a single, authorial voice integrating description of the cases
and their issues with historical overviews. The text is the only one that follows cases
over decades to tell readers what did and, often, what did not, happen. Written by
a professor who helped found bioethics and who has published in the field for 40
years, the text gives students a sense of mastery over this exciting, complex field.
After they have read the book, I hope that students will feel that they have learned
something important and that time studying the material has been well spent.

New to the 8th Edition
New research was added to each chapter, and a new list of topics to debate was
included on the inside cover of the book. Every chapter has been rewritten, tight-
ened, and augmented; issues have been clarified. Highlights of the new edition are
outlined here.

A NEW CHAPTER ON ALCOHOLISM (and addiction): Conflicting views on causes
of alcoholism: Alcoholics Anonymous, neuroscience, Kant, genetics, social sciences,
Fingarette. Focus on the famous case of Ernie Crowfeather.

A MAJOR NEW CASE: The Bucharest Early Intervention Project: Is it the Tuskegee
Study of neuroscience? Research on vulnerable human populations?

A MAJOR NEW SECTON on research on people with schizophrenia, including
cases of patients harmed by such research.

Discussion of Ebola and Zika virus in AIDS chapter: How it has resembled our
responses to AIDS?

Discussion on CRISPR, the revolutionary method of changing genes that almost
any geneticist can use to change a species and its progeny.

Update on the Patient Protection and Affordable Care Act: Why it’s working
and what are its latest problems?

Preface

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iv Preface

Death and Dying: The case of Brittany Maynard; the case of Jahi McMath.

Comas: Update on cases of Terri Schiavo, Belgian coma patient Rom Houben,
and minimally conscious states.

Abortion: Updates on death of Kenneth Edelin, declining numbers of abortion
in America. New topics: Telemedicine and early-stage self-abortions, the Planned
Parenthood video controversy, US Supreme Court decision limiting TRAP (Tar-
geted Regulation of Abortion Providers) laws.

Assisted Reproduction: Updates on the Gosselins, McCaughey septuplets, IVF
clinics, mistaken swaps of embryos, outsourced surrogates, and foreigners using
American surrogates; a sperm donor meets eight of his children, right-to-life
groups file in court to protect frozen embryos; state surrogacy laws, Snowflake
(embryo adoption and its high costs), brighter chances for infertile women aged
30–40 of having IVF baby on late tries.

Stem Cells, Cloning, and Embyros: Updates on stem cells, battles over embryos
among divorced couples and right-to-life friends, mitochondria-swapping to
cure genetic disease (“a child with three parents”); hucksterism in selling stem-
cell therapies; continuing problems in cloning primates.

Impaired Babies and Americans with Disabilities Act: Update on “Baby Jane Doe”
Keri-Lynn, Marlise Munoz case; UAB’s controversial SUPPORT study on
preemies, relevance to babies born with microcephaly from Zika virus.

Ethics of Research on Animals: Updates on the Great Ape Project, Edward Taub’s
work, legal protection for chimpanzees in research.

Transplants and Organ Allocation: Updates on numbers, costs, and outcomes,
especially for tracking bad outcomes of adult organ donors.

Genetics chapter: The pitfalls and promises of: personalized genetic testing and
Big Data, CRISPR, and testing for diseases with no treatments.

Chapter on Enhancement: New emphasis on relation of enhancements to people
with disabilities.

If you have suggestions for improvement, please email me at: [email protected]

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vii

Gregory E. Pence is professor and chair of the Department of Philosophy at the
University of Alabama at Birmingham. Between 1977 and 2011, he taught medical
ethics at the University of Alabama Medical School. He still directs its Early Medi-
cal School Acceptance Program.

In 2006, and for achievement in medical ethics, Samford University awarded
him a Pellegrino Medal. He testified about human cloning before committees of the
U.S. Congress in 2001 and the California Senate in 2003.

He graduated cum laude in Philosophy with a B.A. from the College of William and
Mary in 1970 and earned a Ph.D. from New York University in 1974, working mainly
under the visiting professor, Peter Singer.

In 2010, his UAB team was national champion of the Intercollegiate Ethics Bowl.
His teams won national championships of the Bioethics Bowl at Duke University in 2011
and Florida State University in 2015. At UAB, he has won both the Ingalls and President’s
Awards for excellence in teaching.

• He has written six trade books, including Who’s Afraid of Human Cloning?
(1998), Re-Creating Medicine: Ethical Issues at the Frontiers of Medicine (2000),
Designer Food: Mutant Harvest or Breadbasket of the World? (2002), Cloning
after Dolly: Who’s Still Afraid? (2004), How to Build a Better Human: An Eth-
ical Blueprint (2012), and What We Talk about When We Talk about Clone
Club: Bioethics and Philosophy in Orphan Black (2016).

• He has edited four books of general essays, Classic Works in Medical Ethics
(1995), Flesh of My Flesh: The Ethics of Cloning Humans (1998), The Ethics of
Food: A Reader for the Twenty-First Century (2002), and Brave New Bioethics
(2004).

• He has published over 60 op-ed essays in national publications: two each
in the New York Times, Los Angeles Times, Newsweek, and Chronicle of Higher
Education; one each in the Los Angeles Times, Atlanta Journal-Constitution,
and Philadelphia Inquirer; and 35 in the Sunday Birmingham News. His reader,
Brave New Bioethics, collects these essays from 1974 to 2002.

• A full list of books by Gregory Pence is available through Connect.

About the Author

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viii

Several people helped in preparing the 8th edition of this text.
Users of this text also improved the new edition with their suggestions and

corrections. In particular, Charles Cardwell, Pellissippi State Community College in
Tennessee, and Jason Gray, who taught bioethics at UAB for two years, spotted
many errors and made many helpful suggestions, as did my colleagues Josh May
and Matt King. My research assistant Karan Jani wrote helpful summaries of the
Bucharest Early Intervention Project and CRISPR. Lillian Chien provided amazing
proofing at the last stage.

The ansrsource developmental editing, lead by Anne Sheroff and Reshmi
Rajeesh were the perfect editors and helped me take this text to a higher level. I
also appreciate the following reviewers for the eighth edition:

Brendan Shea, Rochester Community and Technical College, Minnesota
Sarah Schrader, University of California, Santa Cruz, California

Acknowledgments

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ix

Chapter 1 Good and Bad Ethical Reasoning; Moral Theories and Principles  1

Chapter 2 Requests to Die: Terminal and Nonterminal Patients  19

Chapter 3 Comas: Karen Quinlan, Nancy Cruzan, and Terri Schiavo  57

Chapter 4 Abortion: The Trial of Kenneth Edelin  84

Chapter 5 Assisted Reproduction, Multiple Gestations, Surrogacy, and Elderly
Parents  109

Chapter 6 Embryos, Stem Cells, and Reproductive Cloning  132

Chapter 7 Impaired Babies and the Americans with Disabilities Act  157

Chapter 8 Medical Research on Animals  179

Chapter 9 Medical Research on Vulnerable Populations  196

Chapter 10 Ethical Issues in First-Time Organ Surgeries  221

Chapter 11 The God Committee  243

Chapter 12 Using One Baby for Another  264

Chapter 13 Ethical Issues in the Treatment of Intersex and Transgender
Persons  284

Chapter 14 Involuntary Psychiatric Commitment and Research on People with
Schizophrenia  299

Chapter 15 Ethical Issues in Pre-Symptomatic Testing for Genetic Disease: Nancy
Wexler, Angelina Jolie, Diabetes and Alzheimer’s  325

Chapter 16 Ethical Issues in Stopping the Global Spread of Infectious Diseases:
AIDS, Ebola, and Zika  346

Chapter 17 Ethical Issues of the Patient Protection and Affordable Care Act  367

Chapter 18 Ethical Issues in Medical Enhancement (and their effect on people with
Disabilities)  392

Chapter 19 Ethical Issues in Treating Alcoholism  405

Brief Contents

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x

PREFACE  iii

1. Good and Bad Ethical Reasoning; Moral Theories and Principles  1
Good Reasoning in Bioethics  1

Giving Reasons  1
Universalization  2
Impartiality  3
Reasonableness  3
Civility  4

Mistakes in Ethical Reasoning  4
Slippery Slope  4
Ad Hominem (“To the Man”)  5
Tu Quoque (Pronounced “Tew-kwoh-kway”)  5
Straw Man/Red Herring  5
Post Hoc, Ergo Propter Hoc (“After This, Therefore, Because of This”)  6
Appeal to Authority  6
Appeals to Feelings and Upbringing  7
Ad Populum  7
False Dichotomy (“Either-Or” Fallacy)  7
Equivocation  7
Begging the Question  8

Ethical Theories, Principles, and Bioethics  8
Moral Relativism  8
Utilitarianism  9
Problems of Utilitarianism  10
Kantian Ethics  11
Problems of Kantian Ethics  12
The Ethics of Care  12
Virtue Ethics  13
Natural Law  13

Contents

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Contents xi

Theories of Justice  15
Libertarianism  15
Rawls’s Theory of Justice  15
Marxism  16
Four Principles of Bioethics  16
Final Comment  18

Discussion Questions  18
Notes  18

2. Requests to Die: Terminal and Nonterminal Patients  19
The Case of Elizabeth Bouvia (1983–Present)  19

The Legal Battle: Refusing Sustenance  20
The Case of Larry McAfee (1985–1995)  24
The Case of Brittany Maynard (2013–2014)  26
Background: Perspectives on Dying Well  27

Greece and Rome  27
The Bible and Religious Views  28
Philosophers on Voluntary Death  28
The Nazis and “Euthanasia”  30
Hospice and Palliative Care  32
Dying in Holland  32
Jack Kevorkian  33

Dr. Anna Pou  34
Recent Legal Decisions  37

Oregon, 1994  37
Ancient Greece and the Hippocratic Oath  38
Ethical Issues  39

The Concept of Assisted Suicide  39
Misconceptions about Suicide  39
Rationality and Competence  40
Autonomy  41
Inadequate Resources and Poor Treatment  42
Social Prejudice and Physical Disabilities  43
Is Killing Always Wrong?  45
Killing versus Letting Die  46
Relief of Suffering  47
Slippery Slopes  48
Physicians’ Roles, Cries for Help, and Compassion  50
Mistakes and Abuses  50
Cries for Help  51

Further Reading and Resources  51
Discussion Questions  52
Notes  52

3. Comas: Karen Quinlan, Nancy Cruzan, and Terri Schiavo  57
The Quinlan Case  57

Pulling the Plug or Weaning from a Ventilator?  60
Substituted Judgment and Kinds of Cases  61

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xii Contents

The Cruzan Case  61
The Terri Schiavo Case  64

Enter Lawyers and Politicians  65
What Schiavo’s Autopsy Showed  68

Ethical Issues  69
Standards of Brain Death  69
Chances of Regaining Consciousness from Coma and PVS  70
Terri’s Chances of Re-awakening  72
Compassion and Its Interpretation  73
Religious Issues  74
Nagging Questions  74
Disability Issues  75
Some Distinctions  75
Advance Directives  77
The Schiavo Case, Bioethics and Politics  78

Further Reading and Resources  78
Discussion Questions  79
Notes  80

4. Abortion: The Trial of Kenneth Edelin  84
Kenneth Edelin’s Controversial Abortion  84
Background: Perspectives on Abortion  88

The Language of Abortion  88
Abortion and the Bible  88
The Experience of Illegal Abortions  90
1962: Sherri Finkbine  90
1968: Humanae Vitae  91
1973: Roe v. Wade  91
Abortion Statistics  92

Ethical Issues  92
Edelin’s Actions  92
Personhood  92
Personhood as a Gradient  93
The Deprivation Argument: Marquis and Quinn on Potentiality  94
Viability  95
The Argument from Marginal Cases  96
Thomson: A Limited Pro-Choice View  96
Feminist Views  97
Genetic Defects  97
God Must Want Me to Be Pregnant, or Else I Wouldn’t Be  98
A Culture of Life or a Culture of Death?  98
Abortion and Gender Selection  99
Abortion as a Three-Sided Issue  99
Antiabortion Protests and Violence  100
Live Birth Abortions and How Abortions Are Done  100
Fetal Tissue Research  101
Emergency Contraception  101
Maternal versus Fetal Rights  102

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Contents xiii

Viability  103
The Supreme Court Fine-Tunes Roe v. Wade  103
Partial Birth Abortions  104
States Restrict Abortion Clinics  104
Self-Administered Abortion by Telemedicine  105

Further Reading  106
Discussion Questions  106
Notes  106

5. Assisted Reproduction, Multiple Gestations, Surrogacy, and Elderly
Parents  109

The Octomom and the Gosselins  109
Louise Brown, the First Test Tube Baby  110

Harm to Research from Alarmist Media  112
Later Developments in Assisted Reproduction  112
Sperm and Egg Transfer  113
Freezing Gamete Material  114

Ethical Issues  115
Payment for Assisted Reproduction: Egg Donors  115
Payment for Assisted Reproduction: Adoption  115
Paid Surrogacy: The Baby M and Jaycee Cases  116
Multiple Births: Before the Octomom and Gosselins  117
Older Parents  118
Gender Selection  119
Unnatural  119
Physical Harm to Babies Created in New Ways  121
Psychological Harm to Babies Created in New Ways  122
Paradoxes about Harm and Reproduction  122
Wronging versus Harming  123
Harm by Not Knowing One’s Biological Parents?  124
Is Commercialization of Assisted Reproduction Wrong?  124
Screening for Genetic Disease: A New Eugenics?  125
Designer Babies?  126
Assisted Reproduction Worldwide  126
Time to Regulate Fertility Clinics?  127
Conclusion  128

Further Reading  128
Discussion Questions  128
Notes  129

6. Embryos, Stem Cells, and Reproductive Cloning  132
Background on Embryonic Research, Cloning, and Stem Cells  132
Ethical Issues about Reproductive Cloning  140

Valuable from Conception  140
Potential for Personhood  140
Slippery Slopes  141
Reductio ad Absurdum  141

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xiv Contents

The Interest View  142
Embryos and Respect  142
The Opportunity Cost of Missed Research  143
My Tissue  144
Moot?  144

Reproductive Cloning  144
Reproductive Cloning: Myths about Cloned Persons  144
Against the Will of God?  145
The Right to a Unique Genetic Identity  145
Unnatural and Perverse  146
The Right to an Open Future  146

Problems with Primate Cloning  147
The Spindle Problem   148
Inequality  149
Good of the Child  150
Only Way to Have One’s Own Baby  151
Stronger Genetic Connection  152
Liberty  152
A Rawlsian Argument for Cloning and Choice  153
Links between Embryonic and Reproductive Cloning  153

Further Readings  154
Discussion Questions  154
Notes  154

7. Impaired Babies and the Americans with Disabilities Act  157
1971: The Johns Hopkins Cases  157

1970s: Pediatric Intensivists Go Public  158
Ancient History  159

1981: The Mueller Case: Conjoined Twins  159
1982: The Infant Doe Case  160

1982–1986: The Baby Doe Rules  161
1983–1984: The Baby Jane Doe Case  162

1983–1986: Baby Jane’s Case in the Courts  163
Follow-up on Baby Jane Doe  164
Media Ethics and Bias  165

Ethical Issues  166
Selfishness  166
Personal versus Public Cases  167
Abortion versus Infanticide  168
Killing versus Letting Die with Newborns  169
Personhood of Impaired Neonates  169
Kinds of Euthanasia  170
Degrees of Defect  170
Wrongful Birth versus Wrongful Life  171
1984: Legislation  172
1992: The Americans with Disabilities Act (ADA)  173

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Contents xv

The Strength of Disability Advocates  174
Conceptual Dilemma: Supporting Both Choice and Respect  174
UAB’s Support Study on Premies  175

Further Reading  175
Discussion Questions  176
Notes  176

8. Medical Research on Animals  179
The Animal Research Front and Gennarelli’s Research  179

Evaluating the Philadelphia Study  181
PETA and Edward Taub’s Research on Monkeys  181

The Law and Animal Research  183
Numbers and Kinds of Animals in Research  184
Descartes on Animal Pain  184
C. S. Lewis on Animal Pain  185
Philosophy of Mind and Ethics  186
Peter Singer on Speciesism  186
Tom Regan on Animal Rights  188
Why We Need Animals in Research: The Official View  189
Critiquing the Official View  190
Chimpanzees and Research  192

Further Reading  192
Discussion Questions  193
Notes  193

9. Medical Research on Vulnerable Populations  196
Infamous Medical Experiments  196

William Beaumont  196
Nazi Medical Research  196
Josef Mengele  197
The Nuremberg Code  198
Questionable American Research  198

The Tuskegee Study (or “Study”)  200
Nature and History of Syphilis  200
The Racial Environment  201
Development of the Tuskegee Study  202

Ethical Issues in the Tuskegee Study  205
Informed Consent and Deception  205
Racism  206
Media Coverage  206
Harm to Subjects  207
Effects on Subjects’ Families  208
Kant and Motives of Researchers  208

Other Studies Like the Tuskegee Study  209
HIV Prevention in Africa: Another Tuskegee Study?  209
The Krieger Lead Paint Study  210
1946–1948: The Guatemalan Syphilis Study  211

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xvi Contents

Financial Conflicts and Twenty-First-Century Research  212
Toward International Standards of Research Ethics  213
The Collaborative Model  214
The Death of Jesse Gelsinger  215

The Bucharest Early Intervention Project (BEIP)  216
Further Reading  217
Discussion Questions  217
Notes  217

10. Ethical Issues in First-Time Organ Surgeries  221
The First Heart Transplant  221

Fame Cometh  224
The Post-Transplant Era: “Surgery Went Nuts”  224

Barney Clark’s Artificial Heart  225
The Implant  226
Post-Clark Implants  228

Limb and Face Transplants  229
Ethical Issues in First-Time Surgeries  232

The Desire to Be First and Famous  232
Concerns about Criteria of Death  234
Quality of Life  235
Defending Surgery  236
Cosmetic versus Therapeutic Surgery  237
Expensive Rescue versus Cheap Prevention  237
Real Informed Consent?  238
Conclusion  239

Further Reading  239
Discussion Questions  239
Notes  240

11. The God Committee  243
The God Committee and Artificial Kidneys  243

Shana Alexander Publicizes the God Committee; Starts Bioethics  245
The End Stage Renal Disease Act (ESRDA)  246
The Birth of Bioethics  247
Supply and Demand of Donated Organs  247

Ethical Issues in Allocating Scarce Medical Resources  248
Social Worth  248
Personal Responsibility for Illness and Expensive Resources  248
Kant and Rescher on Just Allocation  249
Wealth, Celebrities, Justice, and Waiting Lists for Organs  250
Retransplants  252
The Rule of Rescue  253
Sickest First, UNOS, and the Rule of Rescue  254
Living Donors  255
Costs and the Medical Commons  257

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Contents xvii

Non-Heart-Beating Organ Transplantation  257
The God Committee, Again  260

Further Reading  261
Discussion Questions  261
Notes  262

12. Using One Baby for Another  264
1984: Baby Fae  264
1987: Baby Gabriel and Baby Holc  266
1992: Baby Theresa  268
1993: The Lakeberg Case: Separating Conjoined Twins  269
Ethical Issues  270

Use of Animals as Resources for Humans  270
Alternative Treatments?  271
Babies as Subjects of Research  272
Informed Consent  273
The Media  274
Therapy or Research?  275
Ethics and Terminology: Infants as “Donors”  277
Anencephalics and Brain Death  278
Saving Other Children  280
Costs and Opportunity Costs  280
Conclusion  280

Further Reading  281
Discussion Questions  281
Notes  281

13. Ethical Issues in the Treatment of Intersex and Transgender Persons  284
David Reimer  284
Intersex People  287

Congenital Adrenal Hyperplasia  288
Fetal Dex  289

Ethical Issues  290
What Is Normal and Who Defines It?  290
Secrecy in the Child’s Best Interest  290
Ending the Shame and Secrecy  291
Transgender/Intersex and Civil Rights  292
Nature or Nurture, or Both?  292
An Alternative, Conservative View  293
Ken Kipnis’s Proposals  293
Medical Exceptions  294
The Dutch Approach: Delaying Puberty  294
Conclusion  295

Further Reading  295
Discussion Questions  295
Notes  296

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xviii Contents

14. Involuntary Psychiatric Commitment and Research on People with
Schizophrenia  299

The Case of Joyce Brown  299
The Legal Conflict  300
Ideology and Insanity  303
Patients’ Rights  303
Legal Victories for Psychiatric Patients  305
Deinstitutionalization  306
Violence and the Mentally Ill Homeless in the Cities  307

Ethical Issues  308
Paternalism, Autonomy, and Diminished Competence  308
Homelessness and Commitment  308
Psychiatry and Commitment  309
Suffering and Commitment: Benefit and Harm  310
Housing for the Mentally Ill as an Ethical Issue  311
Mass Shootings and the Mentally Ill  312

Ethical Issues in Research on People with Schizophrenia  312
Washout Period  312
Schizophrenia  313
Problems of Consent in Schizophrenia Research  315
Family Dilemmas  316
Drug Companies and Research on Schizophrenia  317
Researchers Defend Themselves  318
Harm to Subjects and the Kantian Ideal of Patient Care  319
Structural Critiques of Modern Psychiatric Research  319
The CATIE Study  320

Further Reading  321
Discussion Questions  321
Notes  322

15. Ethical Issues in Pre-Symptomatic Testing for Genetic Disease: Nancy
Wexler, Angelina Jolie, Diabetes and Alzheimer’s  325

Case 1: Angelina Jolie and Genetic Testing for Cancer  325
Background: Basic Genetics  326
Case 2: Nancy Wexler and Huntington’s Disease  326
The Eugenics Movement  328
Case 3: Testing for Diabetes  329
Case 4: Testing for Alzheimer’s Disease  330
Ethical Issues  331

Preventing Disease  331
Testing as Self-Interest  332
Testing Only to Hear Good News  333
Testing as a Duty to One’s Family  334
Testing One’s Family by Testing Oneself  335
Personal Responsibility for Disease  335
Testing and Sick Identities  336

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Contents xix

Preventing Suicide by Not Knowing  337
Testing Only with Good Counseling  338
Genetic Testing and Insurance  338
Premature Announcements and Oversimplifications  339
Caveat Emptor: Making Money from Genetic Testing  339
Preventing Genetic Disease  340
Embryos, Genetics, and CRISPR  342

Further Reading  342
Discussion Questions  343
Notes  343

16. Ethical Issues in Stopping the Global Spread of Infectious Diseases:
AIDS, Ebola, and Zika  346

Background: Epidemics, Plagues, and AIDS  346
A Brief History of AIDS  347
AIDS and Ideology  348
Transmission of HIV and Testing for HIV  350

Kimberly Bergalis’s Case  351
Two Ethical Issues in Stopping the Spread of AIDS  352

Homosexuality  352
HIV Exceptionalism  353

Stopping the Worldwide Spread Of HIV: Four Views  353
Educational Prevention  355
Feminism  355
Triage  357
Structuralism  357
Replies and Rebuttals  358
Progress  361
Ethical Issues in Preparing for Future Pandemics  362

Further Reading  363
Discussion Questions  364
Notes  364

17. Ethical Issues of the Patient Protection and Affordable Care Act  367
Rosalyn Schwartz  367

Universal Medical Coverage  368
1962 to Present: Canada  368
The National Health Service in England  369
The American Medical System: 1962–2012  369
1965: Medicare Begins  370
1965: Medicaid Begins  370
1997: CHIP  371
Tricare and VA Hospitals  371
1985: COBRA  372
1986: EMTALA  372
1996: HIPAA  372
1962–2012: Coverage at Work through Private Plans  372

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xx Contents

Blue Cross/Blue Shield and Kinds of Ratings  373
Oregon, Vermont, and Massachusetts Cover Everyone  375

2010: The Patient Protection and Affordable Care Act  376
For and Against the ACA  377

Opposing the ACA #1: Illegal Immigrants  377
Favoring the ACA #1: Illegal Immigrants  378
Favoring the ACA #2: Greater Efficiency  378
Opposing the ACA #2: Federal Bureaucracy Is Inefficient  379
Favoring the ACA #3: Making Medicine Rational  380
Opposing the ACA #3: Government Cannot Make Medical Finance Rational  380
Opposing the ACA #4: Health Care Is Not a Right  381
Favoring the ACA #4: Minimal Health Care Is a Right  381
Opposing the ACA #5: Health Care Is Not a Right  383
Favoring the ACA #5: Costs Can Be Controlled  385
Opposing the ACA #6: Intergenerational Injustice  386
Favoring the ACA #6: No Intergenerational Injustice  387
Update: Six Years of the Patient Protection and Affordable Care Act  387

Further Reading  389
Discussion Questions  389
Notes  389

18. Ethical Issues in Medical Enhancement (and their effect on people with
Disabilities)  392

Famous Cases of Enhancement  392
Oscar Pistorius and his Cheetahs  392
Tess and Prozac  392
Cycling and Doping  393
Ritalin, Adderall, and ADHD  393
Personal Body Shaping and Surgery  393

Ethical Issues of Medical Enhancement  394
What Counts as an Enhancement?  394
Positional Advantage  394
An Arms Race  395
End Secrecy; Legalize Enhancements  395
Inauthentic  396
Cheating  396
Not So Dangerous  398
Bad Effects of Legalization  400
The Role of Physicians  400
Disability and Enhancements  400
Conclusions  402

Further Reading  402
Discussion Questions  403
Notes  403

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Contents xxi

19. Ethical Issues in Treating Alcoholism  405
The Case of Ernie Crowfeather  405

Free Will  408
Is Alcoholism a Disease?  409
Sociologists on Alcoholism  410
Neuroscience on Alcoholism and Addiction  411
Geneticists on Alcoholism  412
Kant on Human Dignity, Free Will, and Alcoholism  413
Kant’s Critique of the Disease Model  414
Fingarette’s Research  416
Harm Reduction versus Moralism in Medicine  417
Compromises  418
Conclusion  419

Discussion questions  420
Further Reading  420
Notes  420

NAME INDEX  I-1

SUBJECT INDEX  I-5

BIOETHICS BOWL DEBATE TOPICS  B-1

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GOOD REASONING IN BIOETHICS

Giving Reasons

It is important to give good reasons for a position in ethics. More globally, giving
reasons partly explains what it means to justify a position in ethics. Justification is
a complex affair, but it is more than saying “I feel this” or “I was raised that way”
or “Most people think so.”

First, the reason given must be relevant to the position. For example, in discuss-
ing whether humans should be created by cloning, Smith might argue that origi-
nating people this way would not create zombies but just create delayed, identical
twins. In arguing this way, Smith did two things: first, attacked a relevant miscon-
ception about human cloning, and, second, offered an insight, comparing creation
by cloning to the process that occurs when human embryos twin. In this second
comment, Smith is saying that cloning is really not unnatural. Allegedly people
think that the unnaturalness of cloning is a good reason to object to it.

Besides relevance, good reasons often provide evidence for a position. Suppose
Martha favors in vitro fertilization (IVF) and someone objects that IVF produces
defective babies. Martha then replies that the rate of gene-linked defects in IVF
babies is only a bit higher than for all babies. (Chapter 5 discusses this claim.) That
fact is good evidence, and hence a good reason.

In arguing about abortion, an antiabortionist might claim as a premise that a
12-week-old embryo feels pain, and therefore, aborting such an embryo is wrong.
Then someone who is pro-choice might counter that the neural system is undevel-
oped at 12 weeks, so no one who can feel pain exists. The antiabortionist counters
that “pain is pain,” whether the being is a shrimp, rat, or human embryo. At this
point, claims will continue to be exchanged back-and-forth, but notice that all these
claims are evidence for and against the premise that the embryo feels pain at
12 weeks and so constitute good reasons.

C H A P T E R 1

Good and Bad Ethical
Reasoning; Moral Theories

and Principles

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2 Chapter 1 Good and Bad Ethical Reasoning; Moral Theories and Principles

Ideally, good reasons support a conclusion as an argument, that is, not a dispute
but a justified conclusion. Sometimes in an argument, a key premise is missing or
assumed, but it needs to be made explicit. This missing premise is called an
enthymeme. In the preceding argument, this premise is, “We should not cause pain
to embryos.” Without this premise, the argument doesn’t work.

Logic is the study of the formal properties of arguments. It distinguishes between
truth and falsehood, which govern how premises correspond or not to the world,
and validity, which concerns the formal relations between premises and conclusion.
In logic, an argument with true premises and a valid structure is called sound.

Another kind of good reason in bioethics appeals not to evidence but to a
principle. In the case where not everyone can get a scarce lifesaving machine, ques-
tions arise about how to choose who is saved. In 1962, distributing dialysis machines
raised just such a problem. One proposal was that, “Everyone should have an equal
chance to get a machine,” and to effect this, some advocated a lottery to select
recipients. Here, the principle of equal consideration counted as a good reason.

Consider also the debate in bioethics as to whether an alcoholic should be given a
liver transplant, a practice that some critics believe wastes a good organ. (This is dis-
cussed in detail in Chapter 11.) A proponent of including alcoholics as recipients could
argue from the principle of equal consideration that everyone should be able to get a
new liver, so past behavior should not matter. An opponent might cite different princi-
ples such as, “Good organs should not be wasted” and “People must be held responsi-
ble for their bad behavior.” In debating whether alcoholics should get livers, these
principles function as good reasons for and against the inclusion of alcoholics.

Finally, good reasons should not contradict each other but should be logically
consistent. For example, if someone favors not making human cloning illegal by
federal law, he might argue that it is not the business of federal government to tell
citizens how to produce new humans. He might cite Aldous Huxley’s novel Brave
New World as an example of what could go wrong when government controls repro-
duction. To be consistent, he should favor keeping government out of all human
reproductive decisions, including those about assisted reproduction, birth control,
abortion, adoption, and whether to have children.

Consistency in ethics also entails not making exceptions for one’s own case.
For example, with brain death and organ transplants, one would not endorse bend-
ing the traditional criteria of brain death to generate more organs unless one would
be willing to oneself be declared brain-dead by bending these rules. Or more com-
monly, we cannot consistently urge, “Everyone should volunteer to help the sick
and needy, but I don’t have the time to do so.”

Universalization

Most of us have been ethically challenged at some point in our lives by someone
who asked us, “What if everyone did that?” Such a challenge assumes that the rules
of ethics must be for everyone.

The idea of universalization often comes up in moral decisions. In bioethics, a
controversy exists as to whether normal people with two kidneys should be encour-
aged to altruistically donate one so that someone on lifelong dialysis could receive
a kidney and live a normal life. Here the question, “What if everyone did that?”

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Chapter 1 Good and Bad Ethical Reasoning; Moral Theories and Principles 3

has a good answer: Because most people will need only one kidney for their life, if
everyone agreed to donate a kidney (if they matched, were in good health, etc.),
then all kinds of good things would occur. In short, the practice seems morally
justified. Another way of putting this is that good reasons exist for altruistic dona-
tion of kidneys.

The twentieth-century ethicist R. M. Hare states this idea about universalization
nicely:

Universalizability means that, by saying “I ought,” he commits himself to agreeing
that anybody ought who is in just those circumstances. If I say “I ought, but there
is someone else in exactly the same circumstances, doing it to someone who is just
like the person I should be doing it to, but he ought not to do it,” then logically
eyebrows will be raised; it is logically inconsistent to say, of two exactly similar peo-
ple in exactly similar situations, that the first ought to do something and the second
ought not.1

Impartiality

One of the most important ideas in ethics is that we should not make special rules
for our own case, in other words, that we should not be partial to our own interests.
Similarly, we should not be partial to those in our own gender, ethnicity, or age
group. Instead we should be impartial, treating everyone the same.

Just how impartial we should be is an important question in ethical theory. Is it
permissible to put the boundary of impartiality at our national borders, or should
ethics be universal? For example, in research bioethics, should there be one standard
for informed consent in developed countries and another in developing countries?

Over time, the tendency in ethics has been to widen the scope of impartiality.
Thus in research bioethics today, there has been a movement to not have a double
standard for developed and developing countries but to treat both the same. (This
is discussed in Chapter 9.)

One important idea here in reasoning concerns onus of proof. Suppose someone
wants to apply a rule only to his own group, say, by arguing that cancer specialists,
to encourage hope, should not always tell patients the truth about their diagnosis.
Because it is now a norm in medicine to tell the truth and because most people
want to know the truth, the “onus” or burden of truth for nondisclosure should be
on cancer specialists. What this means is that this specialist needs especially good
reasons for his actions and if he cannot present such good reasons, his position is
unjustified.

Reasonableness

It is hard to exactly characterize what is meant by being reasonable in ethics, but
it is certainly composed of being open to other points of view. It is unlikely that
the way any of us was raised—in, say, a Southern culture as a Baptist—is the only
path to the truth about the universe. People raised in Jewish, Hindu, or Muslim
cultures might also have insights into the universe, as might people raised in non-
religious, secular households. Being open to other viewpoints is good for everyone,
at least for people who share an interest in truth.

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4 Chapter 1 Good and Bad Ethical Reasoning; Moral Theories and Principles

The same holds for other viewpoints on positions in bioethics. Most of us bring
to these issues a general orientation that predisposes us to a certain position. For
example, we might come from a culture that frowns on drinking alcohol and thus
condemns rewarding alcoholics with liver transplants. But it is important to con-
sider other points of view, for example, the theory that alcoholism is a disease over
which drinkers have no control. If that theory is correct, then alcoholics should be
blamed no more than people who get endocarditis from a virus.

Another quality of reasonableness is being fair-minded. This quality of intellec-
tual life differs from being open-minded because it goes further and includes a
willingness to try to see the best in the reasoning of other people. The opposite of
this is the fallacy of attacking a straw man, where the attacker is not fair, that is, does
not attack the best version of his opponent’s argument but instead attacks a weak
“straw man” who is easy to knock down.

Being unfair tends to generate hostility rather than goodwill. Being fair-minded
includes a willingness to admit problems with one’s own position, to admit good objec-
tions to it, and to admit that—given enough good reasons—one could even change one’s
mind. Most important, being fair-minded in discussing issues means trying to consider
the best argument on the opposing side. Sometimes this can be expressed by the trial
balloon, “If I understand what you are saying, you mean that . . . .” Such a tactic gives
the opponent a chance to refine or modulate his or her position and engenders a spirit
of mutual work toward discovering the best answer.

Civility

In the United States in the past decades, a tone of incivility has permeated debates
in public policy, including those in bioethics. This is unfortunate. Because of ada-
mant divisions between political parties, between social conservatives and social
liberals, and between liberal and conservative bioethicists, the tone of debate has
sometimes descended to scoring cheap points, to demagoguery, to painting one’s
opponents as spawn of the Devil, and, in general, to being nasty.

Being civil in discussions in bioethics improves everyone. Being uncivil
degrades us all, both in class, as citizens, and as future professionals. This is
juvenile, unprofessional behavior, and it is sad to see so many talk shows on
cable television promoting it (seeing people argue badly seems to promote good
ratings). It is important to realize that one can argue fairly and rationally without
being mean and without attacking opponents personally. Some of the fallacies
described in the following section involve cheap tricks in such mean-spirited
attacks.

MISTAKES IN ETHICAL REASONING

Slippery Slope

Often in bioethics, champions of the status quo argue that a small change in a
current medical practice will lead to terrible results. Although the small change
itself is not so bad, because there is no logical place to draw the line or because
something horrible is unleashed in human nature, soon bad things will occur. This

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Chapter 1 Good and Bad Ethical Reasoning; Moral Theories and Principles 5

is basically the idea of the slippery slope, which is one of the most famous ideas
in ethics. It is also called the “thin edge of the wedge”—or simply the “wedge”—
argument. Claims about it in bioethics figure prominently in debates about
physician-assisted dying, cloning, abortion, standards of brain death, and assisted
reproduction.

Slippery slope arguments metaphorically see society as teetering like a ball
perched atop a steep, greased slope and leaning downward, braced only by wedges
on the ground, preventing it from descending. Our basic moral principles are the
wedges.

For example, someone might invoke the slippery slope by claiming, “If we do
not ban students taking the MCAT from using Adderall or Ritalin, soon there will
be an arms race of mental enhancements by test-takers.”

The counterargument to the slippery slope is multifaceted: First, we can make
a small change without going all the way down the slope. If we see that a change
in a medical practice is bad, we can undo it. Second, not all change is bad; how
else would progress occur? Finally, one person’s “slope” is another’s “ascent.” Inte-
gration and equal voting rights may have seemed like the pit to white male suprem-
acists but not to everyone else.

Ad Hominem (“To the Man”)

Generally, it’s a mistake to make a personal attack on someone else, in part because
you may not know an opponent well. Suppose Gina argues for the moral superior-
ity of suicide for terminally ill patients because it gives patients control over their
lives, because it is justified by the principle of autonomy, and because, after all, “it’s
the patient’s body, not the doctor’s.” Her reasons are not affected by whether she
is terminally ill. An ad hominem fallacy would be committed if someone said, “I’ll
bet you would change your mind if you were dying.” This puts the focus incorrectly
on her personal life and not on the reasons she gave for her position.

Tu Quoque (Pronounced “Tew-kwoh-kway”)

Literally, “You, too.” The mistaken idea here is that two wrongs make a right. First
pharmacist: “You made an exception last week and let a 12-year-old girl buy emer-
gency contraception when the law says she must be 14.” Second pharmacist: “You
made a similar exception for your 13-year-old niece.”

“You, too!” resonates in ethics because when someone confronts us with wrong-
doing, we feel less ashamed if the other person has also done it. But saying some-
one else also acted wrongly doesn’t justify the first wrong.

Straw Man/Red Herring

This occurs when someone brings up irrelevant issues. The fallacy is committed
when someone focuses on a different issue than the one originally advocated,
because the different issue is easier to refute. Example: “We should reject Obamacare
because it will lead to death panels where people are forced to have advance direc-
tives before they know they are dying or know what their options are.”

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6 Chapter 1 Good and Bad Ethical Reasoning; Moral Theories and Principles

Getting universal coverage for medical care does not entail death panels,
but death panels sound scary and are easier to attack than universal medical
coverage.

It is also not fair-minded to attack a position that one’s opponent does not hold.
Doing so is destructive, not constructive, to rational debate in bioethics.

The red herring fallacy is a bit different from straw man and consists of dis-
tracting an opponent from the real argument by raising an irrelevant, but associ-
ated, issue. (In hunting with dogs, the red herring across the trail of the tracked
animal puts the dogs on the wrong path.) So in discussing abortion and whether a
fetus is a person, someone might object, “More African-Americans have abortions
as a percentage than white Americans.” Obviously, raising race as an issue is always
potentially controversial and, here, potentially distracting. The most important point
is that the statement bears no relevance on whether the fetus is a person. Both,
therefore, are fallacies of relevance.

Post Hoc, Ergo Propter Hoc (“After This, Therefore, Because
of This”)

The mistake in reasoning here confuses temporal priority with causality. An exam-
ple: “In the 1960s, women started working outside the home, and a few years later,
rates of divorce soared. Therefore, if we want to preserve the family, we should
prevent women from working outside the home.”

Just because one event occurred before another does not mean the first caused
the second. Why? Because when you think about it, everything in history came
before X. Consider an example from the best-selling Freakonomics: “Abortion was
legalized in 1973, and 15 years later, the crime rates went down. So if you want to
lower rates of crime in the future, encourage abortions.”

The problem here is the supposed causal links between abortion and crime
rates. What might be true is that with more abortions in certain neighborhoods,
there were fewer people 15 years later or fewer people between ages 15 and 25 who
could commit crimes. But more birth control pills might have had the same effect.
Also, it may be that better education and counseling started at the same time and
made a big difference.

Appeal to Authority

Reasons and arguments justify a position, not just any authority. Moreover, when
an authority is cited, it must be relevant to the topic in question.

Harvard professor E. O. Wilson is probably the world’s foremost authority on
ants. When Wilson wrote Sociobiology, he claimed that, in certain aspects, organi-
zations of ants and humans resembled each other. Quoting Wilson about sociobi-
ology is not erroneous but appropriate.

On the other hand, Wilson may have opinions about rock bands, but quoting
these opinions is irrelevant to whether a band is good. Wilson’s authority on ants
is not relevant to rock bands.

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Chapter 1 Good and Bad Ethical Reasoning; Moral Theories and Principles 7

Appeals to Feelings and Upbringing

How you feel about something or what you were brought up to believe doesn’t
count as a reason for it. Example: “I was brought up to believe that men were the
hunters and women were the hunted, so a woman should wait until a man finds
her and asks her out.”

Here is another example: “I was brought up to think being gay was repulsive,
so I’ve got to feel that way.” In this claim, we could substitute for “being gay” any
number of other qualities, such as religion, race, ethnicity, or looks.

Obviously, you can be brought up in the wrong way, and as a result, or for
other reasons, have irrational feelings as an adult. Again, reasons justify a position
in ethics, not feelings or upbringing.

Ad Populum

”Everybody does it.” Just because everyone does something does not justify it or
make it ethical. Most physicians may take free gifts from drug representatives who
push expensive, brand name drugs over generics, but that doesn’t mean it’s right
to take such gifts. The self-serving claim, “All the other physicians do it. Why
shouldn’t I take such gifts, too?” commits this fallacy.

False Dichotomy (“Either-Or” Fallacy)

This fallacy is a version of simplistic thinking. “Either you’re a liar or a completely
honest man.” The opponent presents an issue as if there are only two extreme,
opposed alternatives, with nothing in between—black, white, or gray. “Either we
ban cell phones, or people will use them while driving.” Consider also: “Either we’re
all nuts, or we’re all lucid.”

Another example: “Either God exists, or everything is permitted.” Counterar-
gument: Even if there’s no God, good people will still act virtuously. If there is a
God and people only act virtuously to please him, maybe they aren’t virtuous any-
way because only people who do the right thing because it is right are really virtuous.

Equivocation

We should be careful to define key terms and not let key words contain many
meanings. So we should clarify equivocal or ambiguous words with more than one
meaning. Example: “Sex offenders should only be allowed to live in certain areas,
so Alan Jones should not live here.”

But who is a “sex offender”? It turns out that as an 18-year-old Atlanta teenager,
Alan, had consenting sex with a girl who was one month shy of 18, so technically
he committed sodomy and was legally a sex offender in Georgia. But more com-
monly, the phrase is reserved for people who have nonconsensual sex with a minor
with a far greater age difference.

In bioethics, one of the most important terms is “person,” where this evaluative
term contrasts with “human” or mere biological membership in the human species.

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8 Chapter 1 Good and Bad Ethical Reasoning; Moral Theories and Principles

Some people consider eight-day-old human embryos to be persons, and hence,
intrauterine devices (IUDs), which prevent embryos from implanting, are instru-
ments of murder. Some people believe that victims of late-stage Alzheimer’s disease
are no longer persons, especially when they cannot recognize their children or
remember how to take a shower. On the expansionist side of personhood, some
bioethicists such as Peter Singer would include chimpanzees and great apes.

What is important in good reasoning is to define key terms such as “person.”
Sometimes, achieving clarity about such a definition is the major task at hand.
Certainly in bioethics, philosophers, bioethicists, and theologians have penned
untold volumes in trying to clarify the concept of personhood.

Begging the Question

Begging the question occurs when a conclusion that requires good reasons is
assumed without argument, so “begging” here means “assuming without proof.”
The end of the discussion in the previous section mentioned that Peter Singer
considers adult chimpanzees to be persons. Someone might retort, “No. Only
humans can be persons.” Singer would reply that such a stance begs the question
at hand, namely, whether only humans can be persons. That crucial point cannot
just be assumed at the start but must be backed up with good reasons. Indeed, that
is the whole purpose of justification here.

Question-begging mistakes are not always obvious because synonyms may dis-
guise the mistake. “I think everyone from the South is a racist.” Why? “Because
everyone who lives in states below the Mason-Dixon line is racist.” The person has
just said the same thing twice, both times assuming what should be argued for.

In bioethics and the abortion debate, an example of begging the question would
be if an antiabortionist began a debate by stating, “Abortion is murder.” This state-
ment begs at least two questions: that killing a fetus or embryo is the same as
killing a full person and that the kind of killing in abortion is, like murder, an
unjustified killing. (These claims are discussed in Chapter 4.)

ETHICAL THEORIES, PRINCIPLES, AND BIOETHICS

In this section, some classic ethical theories are surveyed with emphasis on
bioethics.

Moral Relativism

Moral relativism is the theory that no universal truths exist across cultures but
instead, what is right or wrong must be defined in each society. Inside a particular
culture, some things are right, others wrong, but nothing is wrong across all.

This theory, popular in anthropology, initially seems attractive when students
study various peoples around the world and different times in history. But it also
has flaws, and medicine is one place where such flaws can be exhibited.

Consider that medicine under the Nazi regime in Germany was anti-Semitic,
racist, and contemptuous of people with disabilities. As a result, physicians led the

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Chapter 1 Good and Bad Ethical Reasoning; Moral Theories and Principles 9

movement to “cleanse” the Aryan race of undesirable, “useless eaters,” leading to
the Holocaust and deaths of 6 million people. As described in Chapter 9, Nazi
physicians also conducted horrible medical experiments on captives.

A moral relativist must accept the view that we cannot condemn Nazi physi-
cians for such actions. The trials at Nuremberg were a farce. Inside Nazi culture,
the Holocaust was not wrong but right. Only from an external, objective standard
of morality can such actions be condemned.

Utilitarianism

Utilitarianism was developed by philosopher-activists Jeremy Bentham and John
Stuart Mill in late-eighteenth-century England. It holds that right acts produce the
greatest amount of good for the greatest number of beings, which it called “utility.”
Its teachings can be summed up in four basic tenets:

1. Consequentialism. Consequences count, not motives or intentions.
2. Maximization. The number of beings affected by a consequence matters; the

more beings affected, the more important the result.
3. A theory of value (or of “good”). A definition of what counts as good

consequences.
4. A scope-of-morality premise. Each being’s happiness is to count as one unit of

happiness up to a certain boundary.

For utilitarians, right acts then contain four aspects, the greatest amount of good
consequences for the greatest number of beings of a certain kind.

One distinctive aspect of utilitarianism is that it is wholly secular and posits no
God or gods as the sources of morality. In this sense, it is naturalistic. In empha-
sizing consequences, it contrasts with deontology, such as Kantian ethics, which
emphasizes motives, and virtue ethics, which emphasizes traits of character.

Each of the four tenets can be controversial. In reverse order, consider tenet 4,
the scope of morality or who has “standing” in moral considerations. Bentham
emphasized that the meaning of tenet 4 was whether a being could suffer, not
whether it was human or animal. As such, many utilitarians include animals in their
calculations of the “greatest number.” This makes a big difference to research by
psychologists and physiologists on animals. If an ape is 90 percent a human in
interests and value and utilitarianism calculates utility this way, then very few exper-
iments on primates will be morally justified.

Some utilitarian thinkers such as Peter Singer take a large view of moral stand-
ing and hold that every being’s happiness on the planet matters, not just citizens
of America and not just humans. As such, they are more likely in bioethics to
emphasize what benefits the poor people of the world.

Virtue ethicists and Kantians (discussed later) regard a physician’s motives as
a sign of his character. The poor patient without medical coverage doesn’t care
whether the physician volunteering to treat him without payment is doing it from
a sense of duty or from guilt or to make others think him good. What matters is
that the physician is there for him. Utilitarians think motives count only insofar as
they tend to produce the greatest good.

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10 Chapter 1 Good and Bad Ethical Reasoning; Moral Theories and Principles

In medicine, does it matter whether a physician listens because she really cares
about patients or because she’s found that having satisfied patients is an effective
way to maximize income? A utilitarian might argue that if she is talented, whether
she really cares about her patients matters little; in either case, her behavior pro-
duces good consequences to real people. For a larger view, she may do more good
bringing clean water to a village than being a cameo medical missionary.

On the other hand, for virtue ethicists and Kantians, character and motives,
not results, are everything. Good people sometimes fail to achieve good results, but
if their motives are pure, they can’t be faulted for such failures. Do we really want
a physician who is faking compassion?

Utilitarianism also contains a theory of value (tenet 3), that is, a theory of
harmful and good consequences. Utilitarianism is associated with, but not the same
as, the harm reduction movement in medicine, which focuses not on changing
“immoral” behaviors such as IV-drug usage, prostitution, and gambling but on the
harmful results associated with them.

The most important claim of utilitarianism is that consequences matter in deter-
mining morality (tenet 1). Medicine can certainly live with that. When sick people
see a physician, they want results, not just good intentions. And even other ethical
theories, such as Kantian ethics and virtue theory, seem always to be indirectly
appealing to consequences in calculating right actions.

Problems of Utilitarianism

Maximization can be beneficial to utilitarianism, organizing it and giving it direc-
tion. If a surgeon can take a liver, a heart, skin, eyes, and bone marrow from a
brain-dead cadaver and give all to one patient or something to six, it is obvious that
it’s better to save six than one.

In the trolley problem, a runaway trolley careening down a steep hill will hit six
people unless bystander Jones flips a lever to switch it to the only side track, where
it will kill only one person. By flipping the switch, however, Jones does something
active, changing fate, but doing what maximization demands (in this case, maxi-
mizing utility by saving the most lives).

In medicine, maximization and utilitarianism are often applied in public health
ethics and situations of triage. Triage allocates scarce resources during emergencies
when not all will live. Because consequences count, utilitarian physicians should not
treat each patient equally but should focus on those who can be benefited. Rigorous
application of this principle gives utilitarianism its famous hard edge: Physicians
should abandon those who will die anyway and, just as ruthlessly, abandon those
who will live anyway. Physicians at the scene should help only those who waver
between life and death and for whom intervention can tilt the balance toward life.
The goal is always to save the maximal number of lives.

In these catastrophic situations, such as after a terrorist attack or tsunami, what
other theory could help? Similarly in medical research, such as that focused on cur-
ing cancer, researchers need to focus on the big picture, which is removing the
scourge of cancer from tens of millions of lives. Yes, individual cancer patients may
suffer in experimental trials of new drugs, but the goal is to help the huge numbers
of cancer victims of the future.

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Chapter 1 Good and Bad Ethical Reasoning; Moral Theories and Principles 11

Maximization (tenet 2) can get utilitarians into trouble. Wouldn’t utilitarianism
be willing to violate the traditional sanctity-of-life principle to save many people?
Wouldn’t utilitarianism permit the sacrifice of an innocent, healthy person to trans-
fer his organs to four patients who needed them to live?2 Aren’t four people alive
better than one? If consequences and numbers define morality, what’s wrong with
doing so? Yet, it’s wrong to chop up a patient like this.

Kantian Ethics

Immanuel Kant (1724–1804) lived during the Enlightenment, and he believed in the
power of reason to solve human problems. The distinctive elements of Kantian
ethics are these:

1. Ethics is not a matter of consequences but of duty. Why an act is done is more
important than its results. Specifically, an act must be done from the right
motive, and the right motive is the desire to do one’s duty. Indeed, there is
only one correct motive in Kantian ethics and that is the desire to be a good
person, to do what is right, to have a “pure will.”

Kant’s ethics celebrates duty (and is therefore called deontological, from
deontos, duty), because it emphasizes not having the right desires or feelings
but acting from obligation. We should praise only medical acts done from duty,
not from compassion. For Kant, the correct motive for treating a patient well
is not because a physician feels like doing so but because it is the right thing
to do. When we act morally, Kant says, reason must tell feelings what to do,
not the other way around, as in popular culture.

Kant says the only thing valuable in the world is a good will, the trait of
character indicating a willingness to choose the right act, simply because it’s
right. But how do we know what is right? What is our duty? Kant gives two
formulations.

2. A right act has a maxim that is universalizable. An act is right if one can will its
maxim or rule to be acted on by all others. “Lying to get out of keeping a
promise” cannot be so willed because if everyone acted this way, promise-
keeping would mean nothing.

3. A right act always treats other humans as “ends-in-themselves,” never as a “mere
means.” To treat another person as an “end in himself” is to treat him as having
absolute, infinite moral worth, not relative worth. His welfare cannot be sacri-
ficed to the good of others or to one’s own desires. So parents cannot create
one child to help another, as with savior siblings.

Consider the nurse who discovers a physician failed to tell patient Ruth an
important fact years ago. Now it is too late for the truth to help Ruth. A consequen-
tialist might argue that the nurse should not tell because Ruth won’t benefit. But
for Kant, Ruth must be told the truth. The only universalizable rule is, “Always tell
patients the truth.” Such a rule is the basis of trust and of treating patients as “ends
in themselves.” If the nurse were the patient, she would want to know. The nurse
may feel that she shouldn’t reveal the truth but reason will reveal her real duty.

4. People are free only when they act rationally. Kant would agree that much of how
we act is governed by our emotions as well as our biology. But controversially,

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12 Chapter 1 Good and Bad Ethical Reasoning; Moral Theories and Principles

Kant denies that we act morally when we do the right thing because we are
accustomed to it, because it feels right, or because our society favors the act.
We act morally only when we understand why certain rules are right and then
freely choose to bind our actions to them. Kant calls the capacity to act this
way autonomy. For him, it gives humans higher worth and dignity than animals.

It follows for Kant that one should not treat one’s own person as a thing.
That means one cannot think of oneself as a mechanical machine, subject only
to the laws of chemistry and physics. So, people are more than their bodies.
Hence, for Kant, alcoholism is not a disease of a body but a pattern of free
choices.

Problems of Kantian Ethics

Kantian ethics has several problems. First, it fails to tell us how to resolve conflicts
between competing maxims. Because most cases in bioethics involve many compet-
ing interests of different people, there will be competing, universalizable maxims.
In the preceding case about failing to tell a patient the truth, one maxim is, “Always
tell the truth” but another is, “Be kind and don’t inflict useless pain.”

Second, the ideal of treating each person as if he has infinite value is not always
practical: It does not tell us how to deliberate about trade-offs when some humans
will die in triage situations. Nor does it make sense in medicine when spending
$5 million on one patient may mean spending little on the next 10 patients.

Third, some of Kant’s ideas appear out-of-date. Why shouldn’t Kantians accept
an altruistic kidney donation? Why isn’t everyone better-off under such a maxim,
and why isn’t such a choice evidence of our best, free, rational natures?

Nevertheless, Kant provides useful insights to medical ethics. He would favor
using a lottery to distribute a lifesaving but scarce new drug. His emphasis on
people as “ends in themselves” explains the outrage that people have felt when
learning of research done by Nazi physicians. Finally, Kantian autonomy explains
why informed consent grounds participation in medical experiments. Also, when
combined with the political autonomy of citizens of democracies, Kantian autonomy
sets the stage for modern medical ethics.

The Ethics of Care

During the 1980s, feminist psychologists and philosophers questioned whether tra-
ditional ethical theories were too male-oriented, too abstract, too intellectual, and
too false to the experience of women, who valued trust, cooperation, nurturing, and
bonding.

Carol Gilligan claimed that women analyze ethical dilemmas differently than
men. Subsequent feminist theorists, who created the often-called Ethics of Care
theory, explored family relationships by promoting “female” virtues of caring,
nurturing, trust, intimate friendship, and love. Rather than focusing on atomistic
individuals, the theory emphasized the family, which too often drops out of bioethical
analysis. Overall, the Ethics of Care may be a useful corrective to abstract, semi-
legalistic concepts, such as rights.

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Chapter 1 Good and Bad Ethical Reasoning; Moral Theories and Principles 13

In criticism, the Ethics of Care does not tell us how to treat people we do not
know or, worse, people we do not care about. This is important because physicians
today often meet patients as strangers. Nor does it tell us how to resolve conflicts
among people we care about, such as when a physician is torn between checking
on a patient and being with his own daughter at childbirth.

Other feminists believe that only traditional gender roles make these virtues
female and that the Ethics of Care reinforces stereotypes. As one wit said, “The
ethics of care screams, ‘Mommy!’” It should also be emphasized that female bioeth-
icists often address concerns far beyond the family or their personal network of
caring, such as the plight of HIV-infected women around the world.

Virtue Ethics

In ancient Greek medicine, to know what made a good physician, we needed to
know the physician’s role. If that role was to heal the sick, then it required virtues
of compassion, knowledge of healing, and skill in human relations. Virtues, then,
were skills in performing a role well.

Socrates transcended role-defined ethics and asked about the virtues of a good
person. Ancient Greek philosophers believed that the four great human excellences
were human courage, temperance, wisdom, and justice, known as the cardinal
virtues.

So we should not only ask, “What virtues should a good physician possess?”
but also, “What virtues should a good person possess who happens to work as a
physician?”

Role-based ethics suffers problems when roles conflict or the wider society calls
into question whether the role has been properly defined. Greek virtues celebrated
Hellenistic culture, but this culture was blind to being built on slavery. Role-based
ethics still underlies the apprentice system in medical education, where medical
students gradually assume more responsibility.

Natural Law

When Rome conquered Greece, Greek culture in turn captured Rome. Rome’s Stoic
philosophers elevated one aspect of the Greek worldview to a higher level. Rules
for human beings, they argued, were so embedded in the texture of the world that
they were law for humans. These laws came to be known as “natural laws.” They
were apprehended by unaided reason, without Scripture or divine revelation.

The notion of a lawgiver lies behind natural law. In the eleventh century,
Thomas Aquinas synthesized Aristotelianism with Christian ideas to create his
Thomistic worldview. Aquinas then made explicit the connection between God and
natural laws: A rational God made the world work rationally and gave humans
reason to discover these laws. So, studying Thomistic ethics is a rational process of
discovering those rules. Correct descriptions of the world would yield correct pre-
scriptions about how to act. To act rationally is to act morally, which in turn is to
act in accordance with natural law.

These rules commanded humans to resist their feelings. St. Augustine taught
in the fourth century C.E. that sin contaminated human feeling: as such, lust, sloth,

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14 Chapter 1 Good and Bad Ethical Reasoning; Moral Theories and Principles

avarice, and pride infected humans. This was in stunning contrast to modern times;
for Aquinas, ethics was not about examining one’s feelings but about following the
natural rules laid down by God.

Natural law condemns homosexuality. Aquinas believed that God made two
sexes for procreation and that it was natural and rational for a man and woman to
mate to have children. On the other hand, for two people of the same gender
to have sex was contrary to natural law, and hence immoral.

One problem with natural law theory is that what is considered against natural
law may vary over the centuries. Many today do not consider homosexuality to be
unnatural, especially because it has been practiced since the beginning of human
history and because some great cultures, such as the ancient Greeks, celebrated it
as ideal.

For natural law theory, consider marriage and children. Natural law regards
loving, sexual relations between married man and wife as natural and good, and
the natural product of such sex is children. But many forms of assisted reproduction
today—IVF, egg transfer, surrogate mothers, and artificial insemination of donor
sperm—violate natural law because they don’t involve sex between husbands and
wives.

Natural law in bioethics tends to conflate “natural” with “primitive” or “tradi-
tional,” and hence, it has no way to accommodate change or progress, for example,
in helping infertile couples with assisted reproduction.

Natural law theory bequeathed to bioethics the famous doctrine of double effect.
This doctrine holds that if an action had two effects, one good and the other evil,
the evil effect was morally permitted (1) if the action was good in itself or not evil,
(2) if the good followed as immediately from the cause as did the evil effect, (3) if
only the good effect was intended, and (4) if there was as important a reason for
performing the action as for allowing the evil effect.

This doctrine justifies an exception to abortions with an ectopic pregnancy (an
embryo growing in a fallopian tube). This doctrine allows abortions only if the direct
intention was to save the life of the mother and if the other conditions listed are
followed.

This doctrine forbids physicians from assisting in executions, since it forbids an
intention to kill. On the other hand, it allows increasing dosages of morphine for
terminal patients, so long as the intention is to relieve suffering, not to kill the
patient. (This idea entered the case of Anna Pou, the New Orleans physician caught
by Hurricane Katrina—see Chapter 2).

The principle of totality also derives from natural law. It says that the human
body may be changed only to ensure the proper functioning of that body. The
underlying idea is that one’s body is not something that one owns but that one
holds in trust for God: “The body is the temple of the Lord.” So a gangrenous leg
may be amputated or a cancerous breast removed, because these diseases threaten
the body’s overall health.

According to this principle, we are given our bodies as they are for a reason
and we should not change our bodies for frivolous reasons. God wisely created
human bodies as they are, and humans shouldn’t meddle with these results.

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Chapter 1 Good and Bad Ethical Reasoning; Moral Theories and Principles 15

THEORIES OF JUSTICE

Many theories of justice exist. Most divide into retributive (about punishment) and
distributive (about how to allocate benefits and burdens). Here, three main theories
of distributive justice are discussed.

Libertarianism

Libertarians favor government for defense and for limited public works, perhaps
not even including national parks or a public interstate road system (we could have
private toll roads). They disfavor government programs such as Medicare, Medicaid,
disability insurance, food stamps, and welfare. Libertarians oppose forced taxation
by the government, especially when it redistributes property and income from rich
to poor. They champion the property rights of the status quo but tend to be silent
about how those enjoying the status quo acquired their property. Harvard philoso-
pher Robert Nozick saw forced taxation as equivalent to forced labor.

Accordingly, Libertarians oppose mandatory FICA taxes on workers’ pay and
taxes for Medicare and for the Hospital Insurance Trust Fund. Even though federal
programs such as Medicare have made American physicians rich, Libertarian
physicians would rather have no government control over their business. In a
Libertarian society, physicians would be reimbursed only in cash.

Critics say that in such a system, fewer hospitals would be built, elderly patients
would frequently forgo procedures for lack of money, and physicians would earn
far less income. In such a system, physicians would be controlled by few federal
regulations.

Rawls’s Theory of Justice

John Rawls, a philosopher of the twentieth century, believed that moral constraints
should be imposed on the social contract. He called his most important constraint
“the veil of ignorance”—in the hypothetical social contract, no one should know his
or her age, gender, race, health, number of children, income, wealth, or other
arbitrary personal information. Rawlsian contractarianism assumes that people are
self-interested and choose the basic institutions of their society in a social contract;
it is Kantian in imposing impartiality or fairness on the choosers by ruling out
arbitrary information on them.

Rawls argues that the only rational way to choose under his veil of ignorance
is as if, when the veil lifts, one might be the least well-off person in society. Because
you don’t know anything personal under the veil, you don’t know what place in
society you will occupy. This justifies the choice of his famous difference principle:
Choosers should opt for institutions creating equality unless a difference favors the
least well-off group.

So everyone should be trained in medicine unless training only a few is better
for the least well-off. Mandating the difference principle imposes the Golden Rule
on the structure of society.

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16 Chapter 1 Good and Bad Ethical Reasoning; Moral Theories and Principles

Rawlsian justice entails that every citizen should have equal access to medical
care unless unequal access favors the poor. It reduces the inequalities of fate; hence,
children and those with genetic disease must get good medical care as a matter of
justice.

Advocates of free markets favor private medical insurance plans in which the
healthy do not subsidize the unhealthy. Rawlsians see “healthy” and “unhealthy”
as arbitrary distinctions, more due to genetics than individual merit. Libertarians
would allow for-profit companies to practice experience rating, whereby citizens
with preexisting illness may be excluded. Rawlsians favor community rating,
whereby risk and premium rates are spread over all members of a large community,
such as a state or nation.

Marxism

Although both more and less than a theory of justice, Marxism is still an important
tool for understanding the world and bioethics. Marx saw history as a struggle
between the owners of the means of production (the rich) and the workers (the
poor). He thought the rich got richer by not paying workers their true worth (which
he called the “labor theory of value”). Workers are exploited and create “surplus
value” (i.e., unjustified value) for owners.

In bioethics, Marx’s most important insight may be to always understand how
money influences decisions in medicine. Although how people get reimbursed is
certainly not the only issue that should be considered in bioethical analysis, it is
also naïve to ignore how people get paid. For example, most services of physicians
in assisted reproduction or enhancement medicine are not covered by traditional
insurance plans, so these kinds of medicine are advertised aggressively in far dif-
ferent ways than, say, cancer surgery.

Marxist analysis may be more important than ever today, when the gap between
income/wealth over the first years of the 2000s has grown considerably in North
America and Europe. Moreover, a whole generation of young people may lack the
upward economic mobility of past generations and be trapped into paying exorbi-
tant taxes for medical care for seniors.

Four Principles of Bioethics

One modern method of analysis is to dissect a medical case in terms of four prin-
ciples. These principles are (patient) autonomy, beneficence, nonmaleficence, and
justice.

Autonomy refers to the right to make decisions about one’s own life and body
without coercion by others. It honors the value that democracies place on allowing
individuals to make their own decisions about whom to marry, whether to have
children, how many children to have, what kind of career to pursue, and what kind
of life they want to live. Insofar as is possible and to the extent that their decisions
do not harm others, individuals should be left alone to make fundamental medical
decisions that affect their own bodies and lives.

John Stuart Mill was a political theorist as well as an ethical theorist. In his
most famous work of politics, On Liberty (1859), he defended this ideal of autonomy

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Chapter 1 Good and Bad Ethical Reasoning; Moral Theories and Principles 17

against the growing powers of government. He there defends “one simple principle,”
his so-called harm principle: “that the only purpose for which power can rightfully
be exercised over any member of a civilized community, against his will, is to pre-
vent harm to others. His own good, either physical or moral, is not a sufficient
warrant. Over himself, over his own body and mind, the individual is sovereign.”

Autonomy rejects paternalistic ethics. During the patient’s rights movement in
the early 1960s in America, feminists scorned paternalistic physicians as sexist octo-
genarians who imposed their rigid ideas on a more enlightened, freethinking,
younger generation.

Beneficence, or helping others, grounds compassion. It grounds the moral dif-
ference between therapeutic and nontherapuetic experiments. If physicians intend
to help diabetics, beneficence justifies experiments on diabetics, but if they have
no such intent, the experiment may be unjustified.

Beneficence can be seen both as a principle and as a virtue for physicians.
Physicians receive special powers, income, and prestige from society and, in return,
are asked to help patients. Medical training requires this trait, as demands on a
student increase on a slope between premedical years and residency. Self-sacrifice
is part of medicine. Ideally, physicians should want to help others, but if the inter-
nal desire is lacking, they should act this way out of duty. The principle of benefi-
cence spells out this duty.

Beneficence may conflict with autonomy (as any of these principles may conflict
with each other). Consider the involuntary psychiatric commitment of homeless
people with schizophrenia. Is it better to let such people wander the cold streets of
a big city or to incarcerate and medicate them against their will? Should we let them
“die with their rights on” or inject them with sedatives and antipsychotic drugs “for
their own good”? Maybe we should do nothing at all and not risk making them
worse off. After all, who are we to say that it is beneficent to do so? Maybe home-
less people with schizophrenia want to stay as they are.

How beneficence and autonomy are balanced in particular cases is not easy to
understand. Indeed, when John Stuart Mill advocated both utilitarianism and per-
sonal autonomy, critics wondered whether he contradicted himself.

Nonmaleficence, not harming others, echoes an ancient maxim of professional
medical ethics, “First, do not harm.” Above all, this maxim implies that physicians
not technically competent to do something shouldn’t do it. So, medical students
should not harm patients by practicing on them without consent: Patients are there
to be helped, not to help students learn.

Patients should not leave encounters with physicians worse off than they were
before. This crucial principle of medical ethics prohibits corruption, incompetence,
and dangerous, nontherapeutic experiments. It explains why the 80,000 deaths per
year in American hospitals from mistakes horrify critics.

The principle of nonmaleficence also accords with Mill’s harm principle: The
state and society should not attempt to shape all citizens for the better. In a funda-
mental sense, the first obligation we have is to leave each other alone, especially
those who don’t want our help. That means that physicians should not harm patients
by unsolicited intrusions.

The last principle, justice, has both a social and a political meaning. Socially, it
means treating similar kinds of people similarly (this is the so-called formal element

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18 Chapter 1 Good and Bad Ethical Reasoning; Moral Theories and Principles

of the larger principle). A just physician treats each patient the same, regardless of
his or her insurance coverage.

Politically, the principle refers to distributive justice and, in medicine, to the
allocation of scarce medical resources. Because there are many theories of justice,
this principle is not self-evident. For example, Rawls’s theory of justice demands
that medicine serve the poorest people.

But another view equates justice with simple egalitarianism: Medicine is just if
it treats each patient equally. Of course, that goal would not be easy to achieve
either, and doing so would go a long way toward realizing Rawls’s ideal. At the
least, it would mean a guarantee of equal access to medical care for every citizen,
such that insurance coverage would not be a factor in selection of which patient
receives a liver transplant.

In the most minimal sense, justice requires physicians to treat patients impar-
tially, without bias on account of gender, race, sexuality, or wealth. Even in such a
minimal sense, justice requires a high standard of behavior among physicians.

Final Comment

And what, one might ask, is the point of studying ethics or bioethics in the first
place? As an answer, we might cite philosopher Richard Rorty’s answer to the
question, “How is the study of philosophy supposed to benefit someone?” To which
Rorty replied, “The point of reading philosophy is not to find a way of altering one’s
inner state, but rather to find better ways of helping us overcome the past in order
to create a better human future.”

DISCUSSION QUESTIONS

1. Cite three examples where utilitarians and Kantians disagree about issues in
bioethics.

2. Cite two examples where utilitarians and Kantians would advocate impartial
positions but the Ethics of Care would advocate a partialist position.

3. Cite three examples where definition of “person” is important in bioethics.
4. Discuss examples from recent political campaigns of some of the fallacies

discussed in this chapter.

NOTES

1. R. M. Hare and Louis Pojman, eds., Ethical Theory: Classical and Contemporary Readings, Wadsworth,
Belmont, CA, 2007, pp. 480–481.

2. P. A. Woodward, ed., The Doctrine of Double Effect: Philosophers Debate a Contro versial Moral Principle,
University of Notre Dame Press, Notre Dame, IN, 2001.

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This chapter discusses two kinds of cases involving dying: nonterminal patients
with unbearable conditions who want to die with a physician’s help and terminal
patients who also want to die with a physician’s help.

THE CASE OF ELIZABETH BOUVIA (1983–PRESENT)

In 1983, Elizabeth Bouvia’s father drove her from Oregon to Riverside General
Hospital in California, where psychiatrists admitted her as a voluntary suicidal
patient. Wanting “just to be left alone and not bothered by friends or family or
anyone else and to ultimately starve to death,” she had already attempted suicide
once.1 “Death is letting go of all burdens,” she claimed. “It is being able to be free
of my physical disability and mental struggle to live.”

Almost totally paralyzed from cerebral palsy, Elizabeth, then 25 years old, never
had the use of her legs, although her right hand could control a battery-powered
wheelchair and the use of that hand also enabled her to smoke cigarettes. She could
use her facial muscles to chew, swallow, and speak. She also had painful, severe
degenerative arthritis. As a California resident, her medical care was paid for by
Medi-Cal, a state–federal program.

She had a hard life. At five, her parents divorced. Afterward, her mother raised
her for five years but then abandoned her to a children’s home. The following
account comes from two physicians:

When Elizabeth turned 18, her father told her that he would no longer be able to
care for her because of her disabilities. She then tried to do the right thing and be
independent. She found state aid and lived on her own in an apartment with a
live-in nurse. She finished a high school degree and then graduated in 1981 from
San Diego State University with a bachelor’s degree in 1981. She entered a master’s
program at the university’s School of Social Work, and volunteered for eight months

C H A P T E R 2

Requests to Die: Terminal
and Nonterminal Patients

Elizabeth Bouvia, Larry McAfee, Brittany Maynard, Jack
Kevorkian, Anna Pou

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20 Chapter 2 Requests to Die: Terminal and Nonterminal Patients

in an associated program. In August 1982, she married an ex-convict, Richard
Bouvia, and conceived a child with him, but a few months later, it miscarried. After
being unable to find work or support from her parents, Richard abandoned her,
stating—according to pleadings in the case—that he “could not accept her disabilities,
a miscarriage, and rejection by her parents.” A few days after being abandoned,
Elizabeth Bouvia got a ride to Riverside General and entered its emergency room,
stating that she wanted to commit suicide.2

During her first four months at Riverside Hospital, the chief of psychiatry, Donald
Fisher, supervised her treatment. When he refused to let her starve, Elizabeth con-
tacted the American Civil Liberties Union (ACLU) and telephoned a reporter. Richard
Scott of Beverly Hills, both a physician and a lawyer, represented her free of charge.

The Legal Battle: Refusing Sustenance

In a hearing before California probate judge John Hews, Fisher testified that because
Elizabeth might change her mind, he would not let her starve and would force-feed her:
“The court cannot order me to be a murderer nor to conspire with my staff and employ-
ees to murder Elizabeth.”3 Elizabeth Bouvia asked the judge to block her force-feeding.

Habeeb Bacchus, associate chief of medicine at Riverside Hospital and Bouvia’s
second physician, argued that “being allowed to die when there’s no need for her
to die—this is a dangerous precedent. Patients might wonder, ‘Am I next slated to
be allowed to die?’”4

Advocates for the disabled feared that if Elizabeth died, other disabled people
might follow. A lawyer at the Law Institute for the Disabled asserted that Bouvia
symbolized a “social problem” of disabled people who are told they cannot be pro-
ductive and said, “She needs to learn to live with dignity.”5

At this point, the case escalated into a public debate:

Disabled individuals held vigils at the hospital to convince her to change her
mind. Bouvia’s estranged husband hitchhiked to Riverside from Iowa, retained
lawyers, and asked to be named her legal guardian. A convicted felon volunteered
to shoot her.6

Judge Hews allowed the force-feeding. Admitting Elizabeth’s rationality, sincer-
ity, and competence, he decided based on the “profound effect on the medical staff,
nurses, and administration of the hospital,” as well as the “devastating effect on
other . . . physically handicapped persons.”7 Bouvia’s lawyer said that Hews accepted
“the Chicken Little defense that the sky would fall if Ms. Bouvia wasn’t force-fed.”8
Judge Hews held that since the patient was not terminally ill and could live for
decades, “there is no other reasonable option.”

Columnist Arthur Hoppe thought otherwise:

I had the feeling that the judge, the doctor, and the hospital had found Elizabeth
Bouvia guilty—guilty of not playing the game. It was as though the Easter Seal Child
had looked into the camera and said being crippled was a lousy deal and certainly
nothing to smile about.9

Boston University law professor George Annas blasted Hews:

The judge’s decision begs the question: Is there a reasonable option? In the adver-
sary proceeding played out in California, no one seemed to search for reasonable

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Chapter 2 Requests to Die: Terminal and Nonterminal Patients 21

options. The county, in fact, consistently took the most extreme position.
It continually threatened to eject Ms. Bouvia from the hospital by force, and leave
her out on the front sidewalk, hoping someone would pick her up and take her
away. Almost from the beginning, the county and hospital made it clear that they
did not care whether she lived or died but, because of their own fear of potential
legal liability, would not let her die at Riverside Hospital.10

Elizabeth appealed but continued to be force-fed. When aides pushed plastic
tubing in her mouth, she bit through it. Thereafter, three attendants held her down,
while another inserted tubing through her nose into her stomach, pumping in a
liquid diet. Annas commented on this gruesome scene:

I do not believe competent adults should ever be force-fed; but efforts at persuading
the individual to change his or her mind, and offering oral nutrition should con-
tinue. If a court determines, however, that invasive force-feeding is required, . . .
then to [prevent] hospitals from becoming the most hideous torture chambers, some
reasonable limit must be placed on this “treatment.”11

Elizabeth Bouvia lost her first appeal and left Riverside Hospital in 1984. Indi-
vidual commentators interpreted differently what happened next. Two physicians
wrote in a medical journal:

The standoff continued until April 7, when Ms. Bouvia unexpectedly checked herself
out of the hospital. The hospital bill for the 217 days . . . was more than $56,000.
Ms. Bouvia went to a hospital in Mexico, known for amygdalin (Laetrile) treatments
for cancer. She believed the staff would help her die. Her new physicians, however,
became convinced that she wanted to live. Two weeks later, Ms. Bouvia left the
hospital, hired nurses, and moved to a motel. Three days later, with friends, a
reporter, and an intern from . . . at her side, she gave up . . . and took solid food.
Ms. Bouvia [then] said that she wanted treatment, . . . .12

This account emphasizes Elizabeth Bouvia’s unexpected departure from the hos-
pital, her costly hospital bills at the public expense, the agreement between Mexican
and American physicians in refusing to allow her to die, and her seemingly arbitrary
decision to give up starving herself.

In contrast, lawyer George Annas writes:

Two years ago, this column dealt with Elizabeth Bouvia’s unequal and doomed strug-
gle. . . . After losing both in the hospital and in the courtroom, Ms. Bouvia fled to
Mexico on April 7, 1984, to seek her death. She was soon persuaded that Mexican
physicians and nurses would be no more sympathetic to her plan than those at
Riverside, and so returned to California. Because of the brutal force-feeding she had
endured at Riverside, she was afraid to return there. Since no other facility would
admit her unless she agreed to eat, she resigned herself to eating and entered a
“private care” location. There she remained, without incident, for more than a year.13

An advocate for dignified dying, the Hemlock Society’s Derek Humphrey, wrote
even more sympathetically:

Her troubles multiplied. The graduate school where she had been studying refused
to readmit her, and her brother drowned in a boating accident. Not long after,
Elizabeth had a miscarriage, and she learned her mother was dying of cancer.

. . . Determined once again to be in charge of her fate, she asked her father
to take her to the county hospital in Riverside, near Los Angeles (an area where

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22 Chapter 2 Requests to Die: Terminal and Nonterminal Patients

she had friends), for an examination. She checked herself into the psychiatric ward
and told physicians she wanted to die by starvation. Elizabeth specifically asked
that, until she died, she be looked after normally and given painkillers when her
arthritis was troublesome.14

Disability advocate Paul Longmore offered a very different perspective on Bou-
via’s case, arguing that it reflected rank prejudice against the disabled. He wrote:

The very agencies supposedly designed to enable severely physically handicapped adults
like her to achieve independence . . . become yet another massive hurdle they must
surmount, an enemy they must repeatedly battle but can never finally defeat. . . .

[When she tried to go on internship,] the SDSU [San Diego State University]
School of Social Work refused to back her up. They wanted to place her at a center
where she would only work with disabled people. She refused. Reportedly, one of
her employers told her she was unemployable, and that, if they had known just
how disabled she was, they would never have admitted her to the program. . . .

The attorneys brought in three psychiatric professionals to provide an inde-
pendent evaluation. None of them had experience or expertise in dealing with
persons with disabilities. In fact, Elizabeth Bouvia had never been examined by a
psychiatric or medical professional qualified to understand her life experience. . . .

Her examiners prejudicially concluded that because of her physical condition
she would never be able to achieve her life goals, that her [physical] disability was
the reason she wanted to die, and that her decision for death was reasonable. . . .
[Judge Hews] too declared that Ms. Bouvia’s physical disability was the sole reason
she wished to die.15

Each account appeared in scholarly journals, implying objectivity, yet the
physicians portray her as irresponsible; Annas and Humphrey portray her as a
heroine fighting a cold bureaucracy; and Longmore portrays her as a victim of a
prejudiced system and of misguided, do-gooder lawyers. Physicians refer to her as
“Bouvia,” Humphrey calls her “Elizabeth,” and Longmore uses “Elizabeth Bouvia”
or “Ms. Bouvia.” The physicians say that “she got a ride” to Riverside, as if she
had hitchhiked to some arbitrary location; Humphrey says that her father took her
to a place “where she had friends.” Longmore emphasizes her desire to be inde-
pendent; Humphrey emphasizes her physical pain and social trauma. Longmore
suggests that society is prejudiced against disabled people and thus that Elizabeth
Bouvia’s disability is not so much her problem as society’s problem. Humphrey
writes from a point of view inside Elizabeth Bouvia; the physicians write from the
viewpoint of hospital staff members who deal with problematic patients. Long-
more critiques an inadequate system that forces terrible, desperate decisions.

In 1985, Elizabeth entered Los Angeles County–USC Medical Center, where
physicians installed a morphine pump to control pain caused by her worsening
arthritis. She promised to eat, so she was not force-fed.

After two months, physicians transferred her to nearby High Desert Hospital,
another public hospital. Although she ate there, her physicians decided that she
wasn’t eating enough and again force-fed her. They reasoned that “since she is occu-
pying our space, she must accede to the same care which we afford every other
patient admitted here, care designed to improve and not detract from chances of
recovery and rehabilitation.”16 Critics objected: Must all patients who occupy High
Desert hospital’s space do as they are told? Would the hospital want to market this
theme—”Enter High Desert Hospital and Do as We Say”?

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Chapter 2 Requests to Die: Terminal and Nonterminal Patients 23

Elizabeth petitioned courts to stop her forced feeding. At this time, she weighed
only 70 pounds. A consultant on nutrition noted that a weight of 75 or 85 pounds
“might be desirable.” Her physicians wanted her to weigh about 110 pounds.

At a hearing, Judge Warren Deering interpreted her low weight as “not moti-
vated by a bona fide right to privacy but by a desire to terminate her life.”17 He
said the right to privacy did not cover suicide by starvation and ordered force-
feeding, because “Saving her life is paramount.”

Elizabeth appealed and the California Court of Appeal ruled in her favor: “A desire
to terminate one’s life is probably the ultimate exercise of one’s right to privacy.”18 This
Court found “no substantive evidence to support the [lower] court’s decision.”

Judge Deering had been concerned that Elizabeth could live for decades, but
the Court dismissed that concern: “This trial court mistakenly attached undue
importance to the amount of time possibly available to her, and failed to give equal
weight and consideration for the quality of that life; an equal, if not more signifi-
cant, consideration.”

The appeals court concluded:

This matter constitutes a perfect paradigm of the axiom: “Justice delayed is justice
denied.” Her mental and emotional feelings are equally entitled to respect. She has
been subjected to the forced intrusion of an artificial mechanism into her body
against her will. She has a right to refuse the increased dehumanizing aspect of her
condition. . . . The right to refuse medical treatment is basic and fundamental. It
is recognized as part of the right of privacy protected by both the state and federal
constitutions. Its exercise requires no one’s approval. It is not merely one vote
subject to being overridden by medical opinion. . . .

[A precedent has been established that when] a doctor performs treatment in
the absence of informed consent, there is an actionable battery. The obvious corol-
lary to this principle is that a competent adult patient has the legal right to refuse
medical treatment. [Moreover,] if the right of the patient to self-determination as to
his own medical treatment is to have any meaning at all, it must be paramount to
the interests of the patient’s hospital and doctors. . . . The right of a competent
adult patient to refuse medical treatment is a constitutionally guaranteed right
which must not be abridged. . . .

In Elizabeth Bouvia’s view, the quality of her life has been diminished to the
point of hopelessness, uselessness, unenjoyability, and frustration. She, as the
patient, lying helplessly in bed, unable to care for herself, may consider her exist-
ence meaningless. She is not to be faulted for so concluding. . . . As in all matters,
lines must be drawn at some point, somewhere, but that decision must ultimately
belong to the one whose life is in issue.

The state appellate court held that competent adults could refuse medical treat-
ment: Building on prior decisions in other states,19 this state court said that a com-
petent adult patient had a constitutionally guaranteed right to refuse medical
treatment that must not be abridged. This court also had strong words about
force-feeding:

We do not believe it is the policy of this State that all and every life must be pre-
served against the will of the sufferer. It is incongruous, if not monstrous, for med-
ical practitioners to assert their right to preserve a life that someone else must live,
or more accurately, endure, for “15 or 20 years.” We cannot conceive it to be the
policy of this State to inflict such an ordeal upon anyone.

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24 Chapter 2 Requests to Die: Terminal and Nonterminal Patients

If nothing else, Elizabeth Bouvia, frail, small, alone, and barely able to move,
won a remarkable victory. Preceding the U.S. Supreme Court’s Cruzan decision by
five years, she wrested from the courts a victory about the right to die for competent
patients.

Of great importance, after her victory, Elizabeth did not kill herself. When some
caring people offered to help her die, she changed her mind. Most important, by
giving her control over her life, they gave her a reason to live.

A decade after her victory in court, she described her body as “gnarled and
useless.”20 In 1994, she lived in California on Medi-Cal, in a private hospital room
with 24-hour-day care at a cost of $300 a day. A morphine pump controlled her
pain, and she weighed 100 pounds. She said her life was “a lot of needles and bags,”
and she spent her time watching television. “I wouldn’t say I’m happy, but I’m
physically comfortable, more comfortable than before. There is nothing really to do.
I just kind of lay here.”

In 1992, Richard Scott, the physician and lawyer who represented Elizabeth
Bouvia and who battled depression most of his life, committed suicide. When he did,
Elizabeth Bouvia said, “Jesus, I wish he could have come in and taken me with him.”

In 1996, Elizabeth appeared on 60 Minutes on the 10th anniversary of a previ-
ous 60 Minutes story about her. Then she lived in Riverside County Hospital, but
in 1997, a new pro bono attorney Griffith Thomas, M.D., got her disability payments
put into a trust fund that allowed her to live in her own apartment with 24-hour-
a-day in-home assistants. Even though this cost far less than her hospital room, it
took a decade to accomplish.

Elizabeth, in 1996, still had pain each day and still needed morphine. She did
not intend to be alive for another story by 60 Minutes in 2006 and felt ambivalent
about her life. An obituary for a disability rights advocate in 2008 mentioned that
Elizabeth was still alive.21 In 2016, she seemed to be still alive, but no one had heard
anything about her.

THE CASE OF LARRY MCAFEE (1985–1995)

In 1985, an accident left 29-year-old Larry McAfee almost completely paralyzed
(a C-2 quadriplegic). While studying mechanical engineering at Georgia State Uni-
versity, he fell off of his motorcycle on a dirt road, snapped his head, and crushed
his two top vertebrae. Left with use only of his eyes, mouth, and head, he could
not clear his throat and sometimes choked. He needed a ventilator to breathe and
could not control his bladder and bowels. He was unmarried and could feel no
pleasure from sexual activity.

McAfee had a $1 million health insurance policy, and using it, he remained for
over a year at the expensive Shepherd Spinal Center in Atlanta, where the average
stay for C-1 to C-4 patients is 19 weeks. He then moved to an apartment in Atlanta,
where he insisted on certified nurses who were three times more expensive than
home health aides. After 16 months of such living, he exhausted his insurance. Not
wanting to be a burden, he refused his family’s offer of care.

With no resources, he became eligible for Medicaid, the fund in each state that
pays for medical care for the indigent. McAfee wanted Georgia Medicaid to pay for

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Chapter 2 Requests to Die: Terminal and Nonterminal Patients 25

his care in an apartment and refused to enter a state nursing home. Only a small
number of nursing homes in America admit ventilator-dependent patients such as
Larry McAfee. Even fewer take Medicaid patients, because Medicaid’s reimburse-
ment doesn’t pay for the staffing needed for such patients. Georgia officials even-
tually transferred him to a Medicaid nursing home in Ohio that could care for
respirator-dependent C-1 patients. This facility accepted McAfee on a temporary
basis until Georgia could find a bed for him.

In Ohio, Larry wouldn’t make appointments for vocational rehabilitation. The
administrator there said, “Larry was very demanding, wanted things precisely the
way he wanted them. . . . I had nurses toward the end who just couldn’t work with
him anymore because they were just extremely, extremely frustrated.”22 He noted
that McAfee’s family and friends all lived in Georgia.

McAfee claimed that he had been housed in Ohio with demented, senile,
and brain-damaged patients who were being cheaply warehoused with only one
or two staff for as many as 40 patients. The easiest way to warehouse such
patients is to keep them heavily sedated. McAfee said that he experienced intense
loneliness and received inadequate personal care. “You’re just a sack of potatoes,”
he said.23

After two long years, it became clear to Ohioans that McAfee had been dumped
on them, so officials angrily hustled him onto a plane and left him in the emergency
room at Grady Memorial Hospital in Atlanta.

There, Larry spent several miserable months in the intensive care unit. In 1989,
Briarcliff Nursing Home, in a suburb of Birmingham, Alabama, accepted him as a
patient, and he was transferred there.

Larry, one day, called the radio talk show of Russ Fine, a disability advocate
and director of the Injury Control Research Center at the University of Alabama at
Birmingham. According to Fine, McAfee’s treatment represented “everything that’s
wrong about the system that serves disabled people.”24

On first meeting with Larry, Fine found him lying in bed staring at the ceiling,
with no voice-activated telephone and no television. All he could do was stare “at
whatever happened to be in front of his face. From a quality of life standpoint, it
was a devastating commentary on a society with a very advanced health-care sys-
tem.”25

A reporter once arrived to find McAfee’s urinary catheter not connected to a
container and spilling urine on the floor. Fine says, “These facilities were not
equipped to take care of a patient such as Larry, with labor-intensive health-care
requirements.”26

In 1989, four years after Elizabeth Bouvia’s victory, Larry filed suit in federal
court to exercise his right to die. After a heart-wrenching 45-minute hearing in
Fulton County Superior Court, Judge Edward Johnson ruled in McAfee’s favor.
Because his ventilator had once dislodged accidentally, causing him to suffocate,
Larry did not want to experience such feelings again, so he asked to be sedated
before disconnection. Judge Johnson granted this, declaring that no civil or criminal
penalty would attach to any doctor who helped.

Everyone assumed that with his legal victory, McAfee would kill himself within
days. Like Elizabeth Bouvia, he did not. Behind the scenes, Russ Fine had convinced
McAfee to stay alive. But then Larry’s financial problems began.

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26 Chapter 2 Requests to Die: Terminal and Nonterminal Patients

Social Security, besides financing income for Americans over 62, provides
financial assistance to disabled people as Supplemental Security Income (SSI). In
2011, SSI payments averaged $700 a month and were paid to 10.6 million disabled
Americans.27 Larry qualified for SSI assistance.

In 1989, Russ Fine persuaded Birmingham’s United Cerebral Palsy to let Larry
live temporarily in its nine-person group home. Larry stayed there on-and-off until
late 1990, but because he required expensive nurses, he then had to find somewhere
else to live.

Federal regulations affecting Medicaid block using it to pay for disabled people
to live in group homes. This structural discrimination forces such people to live
either in public hospitals or be warehoused in huge public nursing homes. When
President George Bush refused a waiver of Medicaid to help Larry, the Georgia
legislature created an independent-living facility for him and for five other patients
as an exception to Georgia’s disability law and Medicaid plan. Larry then lived in
Augusta, near its medical school.

In 1993, his accident and fight were portrayed in The Switch, a CBS movie. To
keep his disability payments, McAfee could not accept any money from the movie.

A few months later, Georgia “forgot” to fund McAfee’s group home in its state
budget. Once again, Russ Fine held Georgia’s feet to the fire on Larry’s behalf,
pointing out that the cost per person in the group home was only $52 a day. Geor-
gia found funds to continue the home for another year.

In 1993, a kink in Larry’s urinary catheter caused urine to back up. Being
paralyzed, Larry could not feel what was happening; the backup caused toxicity
and high blood pressure. This caused two devastating strokes.28 Larry survived, but
the strokes injured his brain, and he was left with just a small amount of short-term
memory.

He had planned to leave the group home for his own apartment but instead
was transferred to a long-term nursing home. This was just the kind of place Larry
had wanted to avoid. Ten years after his accident, Larry died in 1995. He died not
by his own decision but after being comatose for many months.

THE CASE OF BRITTANY MAYNARD (2013–2014)

In April 2013, Brittany Maynard, a 28-year-old Californian, experienced intolerable
migraines that turned out to be glioblastoma, the worst kind of brain cancer.29
Maynard had earned a degree in psychology in 2006 from the University of
California, Berkeley and a master’s degree in education in 2010. Passionate about
travel, she visited many countries and taught at an orphanage in Nepal.

In January 2014, surgeons debulked her tumor, removing part of her temporal
lobe, a standard stopgap measure for gliomas. However, in April 2014, experts gave
her six months to live, because her cancer was still spreading inside her skull, where
it would soon cause her confusion, headaches, and, ultimately, death.

Because she could not die on her own terms in California, she and her husband
and her family moved to Oregon in June 2014, because Oregon had passed a right-
to-die law. When she made a video for Compassion and Choices, which millions
watched, Brittany became a national symbol of the right to die with dignity. She

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Chapter 2 Requests to Die: Terminal and Nonterminal Patients 27

hoped it would help California pass a similar law; although ultimately, California
did not.30

As her quality of life worsened with fatigue, headaches, and confusion, she
decided, with the drugs prescribed by a physician in Oregon, to end her life on
November 1, which she did. Before doing so, terminal patients urged her to recon-
sider. After her death, a Vatican official condemned her “suicide” and the National
Right to Life Committee claimed Compassion and Choices had exploited her. Brit-
tany’s mother retorted, “My 29-year-old daughter’s choice to die gently rather than
suffer physical and mental degradation and intense pain does not deserve to be
labeled as reprehensible by strangers a continent away. . . .31

BACKGROUND: PERSPECTIVES ON DYING WELL

Greece and Rome

Ancient Greek aristocrats strove not simply to live but to lead lives of nobility,
honor, excellence, and beauty. Believing that “the unexamined life is not worth
living,” they thought the “important thing is not to live but to live well.” They
thought that study of philosophy would provide wisdom to approach death (philos-
ophy means “love of wisdom”). Plato records Socrates as saying, “True philosophers
make dying their profession, and . . . to them of all men, death is least alarming. . . .
So if you see one distressed at the prospect of dying, it will be proof that he is a
lover not of wisdom but of the body.”32

Socrates died famously. Sentenced to die for his political beliefs, he could have
fled Athens but chose instead to drink hemlock, a poison. At his end, he discussed
death with a friend.

The friend argues that if one is convinced of life after death, it is easy not to
fear death, but what if the soul is “dispersed and destroyed on the very day that
the man himself dies [and] may be dissipated like breath or smoke, and vanish
away, so that nothing is left of it anywhere. . . . No one but a fool is entitled to face
death with confidence, unless he can prove that the soul is absolutely immortal and
indestructible.”

Socrates replies that the soul may be immortal, but if it is not, then death is
like a sleep from which one never awakes. If so, we should not fear it, because no
one will exist to feel pain or to miss life.

Hemlock acts as a poison by decreasing circulation at the extremities, creating
distal numbness and eventually stopping the heart. Hemlock began to work during
Socrates’s abstract discussion about death, moving up from his toes to his ankles.
As the discussion ends, the state poisoner finds that Socrates’s thighs are numb
and says that when the poison reaches the heart in minutes, Socrates will die.

As his friends begin to cry, Socrates says, “Calm yourselves and try to be brave!”
He dies moments later. His admiring follower, Plato, writes, “Such . . . was the end
of our comrade, who was, we may fairly say, of all those whom we knew in our
time, the bravest and also the wisest and most upright man.”

Centuries later in Rome, Emperor Marcus Aurelius wrote that suicide surpassed
undignified dying. These Roman Stoics defended the argument for the open door:

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28 Chapter 2 Requests to Die: Terminal and Nonterminal Patients

“If the room is smoky, if only moderately, I will stay; if there is too much smoke, I
will go. Remember this, keep a firm hand on it, the door is always open.”33

Another Stoic, Seneca, wrote about old age, “If it begins to shake my mind, if
it destroys my faculties one by one, if it leaves me not life but breath, I will depart
the putrid or the tottering edifice.”34

In the twentieth century, existentialist philosopher Jean-Paul Sartre revived the
argument for the open door.35 He emphasized that choice—even the choice of stay-
ing alive each day—is inescapable. He famously wrote, “Not to choose is always still
a choice.”

The Bible and Religious Views

The Bible does not explicitly prohibit suicide and even seems to condone the
suicides of Saul and Judas. During the fourth century, Augustine condemned sui-
cide, basing his condemnation on the sixth commandment, “Thou shalt not kill”
(Exodus 20:13).

Augustine distinguished between private killing and killing endorsed by divine
authority. Killing on one’s own authority is never right, but when God commands
it, humans should obey. So Abraham had to obey when God commanded him to
kill his son, Isaac. Individuals who so kill are instruments of God.

This reasoning underlies killing in capital punishment and just wars. The
worldly Ambrose had already said that Christians could kill in war, and Augustine
went further by condoning war against heretics. Frederick Russell in The Just War
in the Middle Ages says that through Augustine’s interpretation, “the New Testament
doctrines of love and purity were accommodated to the savagery of the Old Testa-
ment and pacifism was defeated.”36

The thirteenth-century philosopher Thomas Aquinas held that suicide is sinful
because it leaves no time for repentance; repudiates a gift from God; deprives the
community of talented people; deprives children of their parents; and is unnatural,
going against the instinct of self-preservation.

Philosophers on Voluntary Death

Michel de Montaigne in the sixteenth century concluded in “To Philosophize Is to
Learn How to Die” by saying, “If we have learned how to live properly and calmly,
we will know how to die in the same manner.”37 The Dutch philosopher Baruch
Spinoza wrote, “A free man, that is to say, a man who lives according to the dictates
of reason alone, is not led by the fear of death.”38 The English poet John Donne in
the seventeenth century wrote, “When the [terminal] disease would not reduce us,
[God] sent a second and worse affliction, ignorant and torturing physicians.”39

David Hume. In the eighteenth century, Scottish philosopher David Hume argued
that suicide “is no transgression of our duty to God.” Hume hated vanity and
observed, “The life of a man is of no greater importance to the universe than that
of an oyster.”40

In his “Essay on Suicide,” Hume disagreed with Augustine and Aquinas. For
dying patients, he argued, voluntary death is not a sin: “A house which falls by its

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Chapter 2 Requests to Die: Terminal and Nonterminal Patients 29

own weight is not brought to ruin by [God’s] providence.”41 Hume argued that if
God made the natural world through the laws of causality—the laws of biology,
medicine, and physics—then disease belonged to that world.

While Immanuel Kant argued that we have a station in life assigned to us by
God that we must not give up, Hume replied, “It is a kind of blasphemy to imagine
that any created being can [by taking his own life] disturb the order of the world.
Any suicide is insignificant to the workings of the universe and it is blasphemy to
think otherwise.”

Hume disputed Aquinas’s argument that suicide harms the community:

A man who retires from life does no harm to society; he only ceases to do good;
which, if it is an injury, is of the lowest kind. All our obligations to do good to
society seem to imply something reciprocal. I receive benefits of society, and there-
fore ought to promote its interests; but when I withdraw myself altogether from
society, can I be bound any longer? But [even] allowing that our obligations to do
good were perpetual, they have certainly some bounds; I am not obliged to do a
small good to society at the expense of a great harm to myself: when then should
I prolong a miserable existence, because of some frivolous advantage which the
public may perhaps receive from me?

Immanuel Kant. Hume’s contemporary, German philosopher Immanuel Kant,
opposed suicide. For Kant, first, an act is right if it derives from a rule that can be
universalized, and suicide also cannot be universalized because its motive is self-in-
terest (e.g., escaping pain). For Kant, self-interest can never justify moral decisions,
only respect for the moral law.

Second, a person “who does not respect his life even in principle cannot be
restrained from the most dreadful vices.” If I do not respect my own life, I will not
respect anything else. To respect the sacred value of the lives of others, I must
respect the sacred value of my own. Third, Kant wrote, “Human beings are sentinels
on earth and may not leave their posts until relieved by another beneficent hand.
God is our owner; we are His property.”42

Finally, suicide is immoral because people should always be treated as ends in
themselves, never as mere means. This entails recognizing one’s free will as an
absolute, rather than as a relative, value, but destroying oneself entails destroying
that freedom of will. “Man’s freedom cannot subsist except on a condition which
is immutable. This condition is that man not use his freedom against himself to his
own destruction.”43

In other words, Kant believed that each person must treat his body as an “end
in itself.” “To deprive oneself of an integral part of organ (to mutilate oneself), for
example, to give away or sell a tooth so that it can be implanted in another person,
or to submit oneself to castration in order to gain an easier living as a singer, and
so on, belongs to partial self-murder.”44

John Stuart Mill. In his 1859 essay, On Liberty, John Stuart Mill famously wrote:

One very simple principle [is] entitled to govern absolutely the dealings of society
with the individual in the way of compulsion and control, whether the means
used is physical force in the form of legal penalties, or the moral coercion of
public opinion. That principle is that the sole end for which mankind are

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30 Chapter 2 Requests to Die: Terminal and Nonterminal Patients

warranted, individually or collectively, in interfering with the liberty of action of
any of their number, is self-protection. That the only purpose for which power
can be rightfully exercised over any member of a civilized community, against his
will, is to prevent harm to others. His own good, either physical or moral, is not
a sufficient warrant. . . . The only part of the conduct of any one, for which he
is amenable to society, is that which concerns others. In the part which merely
concerns himself, his independence is, of right, absolute. Over himself, over his
own body and mind, the individual is sovereign.45

According to this principle, so long as others are not harmed, we can do what-
ever we want with our own lives and bodies.

Mill distinguished between self-regarding and other-regarding acts, arguing that
we may censure others only for other-regarding acts. Paradoxically, Mill’s analysis
can both support and condemn suicide. On one hand, taking one’s own life is
clearly self-regarding; suicide is often described as the ultimate personal issue. On
the other, suicide can affect others, especially when they believe they should have
prevented it. If a suicidal person desired to make others feel bad, then Mill’s prin-
ciple condemns the suicide.

The Twentieth Century. A century ago, only poor people without families went to
hospitals to die. The nature of deadly diseases has also changed. Before World War
II, most people died of sudden-onset, acute diseases such as pneumonia and chol-
era. Today, people live longer and die slowly from chronic diseases such as emphy-
sema, diabetes, dementia, cancer, and coronary artery disease. Such diseases slowly
erode the quality of life, and many people want to die before such quality becomes
too bad.

Before the Harrison Act of 1914, Americans could purchase heroin and
opiates to lessen the pain of terminal cancer and to die at home. Today, physi-
cians control such drugs, death has been medicalized, and most people die in
hospitals.

In 1935, American feminist Charlotte Perkins Gillman killed herself, writing
that she preferred “chloroform to cancer” and that “the record of a previously noble
life is precisely what makes it sheer insult to allow death in pitiful degradation. We
may not wish to ‘die with our boots on,’ but we may well prefer to ‘die with our
brains on.’ ”46

The Nazis and “Euthanasia”

Debates about dying often refer to German physicians during the Nazi era, when
such physicians, in the name of “euthanasia,” killed 90,000 patients with mental or
physical inferiority. This “Nazi argument” bears scrutiny.

First, Nazi physicians administered the Final Solution to the “problem” of how
to cleanse Germany of racially inferior non-Aryan peoples. Under this secret pro-
gram, physicians and the SS (Schutzstaffel) killed 6 million Jews, 600,000 Poles,
thousands of Gypsies, and hundreds of gay men and lesbians.

Physician Leo Alexander famously argued in 1949 that the killing programs
began with the belief that some people are better off dead than alive because their

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Chapter 2 Requests to Die: Terminal and Nonterminal Patients 31

quality of life is poor.47 In 1986, another New York psychiatrist, Robert Jay Lifton,
argued similarly, although his “first step” differed from that of Alexander:

The Nazis justified direct medical killing by use of the . . . concept of “life unwor-
thy of life,” lebensunwertes Leben. While this concept predated the Nazis, it was
carried to its ultimate racial and “therapeutic” extreme by them.

. . . Of the five identifiable steps by which the Nazis carried out the destruction
of “life unworthy of life,” coercive sterilization was the first. There followed the
killing of “impaired” children in hospitals, and then the killing of “impaired”
adults—mostly collected from mental hospitals—in centers especially equipped with
carbon monoxide. The same killing centers were then used for the murders of
“impaired” inmates of concentration camps. The final step was mass killing, mostly
of Jews, in the extermination camps themselves.48

People opposed to physician-assisted dying often cite Alexander and Lifton.
They also emphasize that Germany’s medical professors took the first dangerous
step down the slope.

J. C. Wilkes argued differently that the first step down the Nazi slope came
when physicians mercy-killed a few severely handicapped infants.49 Starting in 1937,
a father who killed his mentally retarded child received only a mild rebuke. Two
years later, Dr. Karl Brandt examined an infant named Knauer, born blind and
missing an arm and a leg. Hitler cleared him to kill Knauer and all similar infants.
Wilkes claims these two test cases led to the first phase of deaths in Germany in
which physicians killed as many as 6,000 disabled children.

Most German parents did not consent to these killings. Officials took the babies
and children out of the homes, and parents never heard from them again.

What about claims by Alexander, Lifton, and Wilkes about the first step that
led down the slippery slope? In rebuttal, many experts say this is just history. They
emphasize that Germany had been anti-Semitic since the time of the Crusades.
Instead of a subtle first step, Nazi physicians rode a tsunami that had been building
for centuries.

The Nazi “euthanasia” program also misleads in three ways: It had nothing in
common with (1) competent patients who are dying and who (2) voluntarily request
assistance in dying. Nazi “euthanasia” was also (3) not “good deaths” but despicable
murders.

Overall, the Nazi argument often contains many different claims, including:

1. Involuntary killings of people for medical reasons led to the Holocaust.
2. Involuntary killings of people by physicians led to the Holocaust.
3. Justifying medical killings of people for reasons of quality of life led to the

Holocaust.
4. Involuntary sterilization of retarded, psychotic, and demented people led to the

Holocaust.
5. The killing of impaired children led to the Holocaust.
6. Eugenics, the desire of Nazis to create a Master Race, led to the Holocaust.
7. Deep cultural racism and anti-Semitism led to the Holocaust.
8. Acceptance by physicians of a new role as killers led to the Holocaust.

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32 Chapter 2 Requests to Die: Terminal and Nonterminal Patients

Because all its victims died involuntarily, and because no terminal patients died
voluntarily, “playing the Nazi card” does not illustrate good reasoning. (Neverthe-
less, in any long discussion in bioethics, the possibility—especially on talk radio or
in letters to the editor—that someone will bring up the Nazis or Hitler approaches
100 percent, a fact often referred to as “Godwin’s Law.”)

Hospice and Palliative Care

Founded in the United States in 1980 by Derek Humphrey, the Hemlock Society
helped people with terminal illness die with dignity and advocated legalized physi-
cian-assisted dying. In 2005, it became Compassion & Choices.

In the 1960s, physicians Elisabeth Kübler-Ross, working in Chicago, and Cicely
Saunders, in Britain, emphasized making terminal patients comfortable, beginning
the hospice movement, which gives dying patients dignity and control over their final
months. Originally, hospices were residences, but the concept evolved to visiting
nurses treating patients at home.

Because of the work of these two women, physicians today better relieve pain
and better attend psychologically to dying patients than 60 years ago. In the United
States, Medicare pays for six months of hospice.

Around 1986, palliative care began as a medical specialty. For dying patients, it
strives to relieve of nausea, boredom, itching, suffocation, immobility, depression,
and pain. It forgoes experimental treatments.

Dying in Holland

In 1971, a Dutch physician killed her terminally ill mother, making Holland an
ethics laboratory for physician-assisted dying. Critics saw these physician-assisted
deaths as accelerating a growing culture of death. They claimed that this culture
began in 1973 with legalization of abortion. In 1973, the Dutch formed guidelines
for physician-assisted death: (1) Only competent patients can request death. (2)
Requests must be repeated, non-ambivalent, unpressured, and documented. (3) Phy-
sicians must consult another physician. (4) Patients must be in unbearable pain or
suffering, without likelihood of improvement.50

Holland has universal medical coverage, including long-term nursing home
care. Dutch patients see physicians who have known them for years.

So did Holland’s mercy killings create a slippery slope into barbarism? In 1990,
its Remmelink Commission reported that between 1973 and 1990, Dutch physicians
had killed a thousand incompetent patients, a direct violation of the guidelines.51 All
patients were terminally ill. Most had cancer or AIDS and, when competent, had
asked to have physicians help them die. So voluntary euthanasia did spread to the
killing of incompetent patients. Nevertheless, some limits exist. Without prior dis-
cussion with a physician or an advance directive, comatose patients like Terri Schi-
avo cannot be legally assisted to die in Holland.

Some cases pushed the limits, such as when a physician killed a woman in her
20s who had suffered a decade of severe anorexia. In 1993, a physician killed a
woman after the death of her two children and the failure of her marriage left her
depressed.

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Chapter 2 Requests to Die: Terminal and Nonterminal Patients 33

In 2001, after 30 years of semi-legalization, physician-assisted dying became com-
pletely legal in Holland, having the support of 90 percent of Dutch citizens. Dutch
law now includes the right of patients in the early stages of dementia
or amyotrophic lateral sclerosis to sign advance directives to be killed at a later date.

In early years, Dutch physicians rebuffed 66 percent of patients who requested
death. By 2005, and in a pattern also seen in the American Northwest, the number
of patients rejected had dropped to 12 percent, with another 13 percent changing
their minds and another 13 percent dying before the physician could assist.52

In 2002, the Dutch Parliament extended its previous euthanasia legislation to
competent adolescents aged 16 to 18 and, with consent of parents, teenagers aged
12 to 16. The Groningen protocol began in March 2006 where children under age 12,
and especially babies, could be killed with parental consent. Two physicians had to
agree that the child was terminally ill with no prospect of recovery and suffering
great pain.53 This protocol legalized previously secret euthanasia in babies in Dutch
hospitals, especially for babies with spina bifida.

In 2002, Belgium legalized physician-assisted dying for adults, Luxembourg did
so in 2011, and also in 2011, Switzerland legalized some kinds of physician-assisted
dying. Nevertheless, despite the hysteria of conservative critics, physician-assisted
dying has been slow to be accepted by other developed countries.

Jack Kevorkian

In the 1990s, retired pathologist Jack Kevorkian created an ethical firestorm by
helping over 100 American patients to die.

The son of Armenian immigrants, he grew up in Michigan and graduated from
medical school in 1953. After residency, he worked from 1969 to 1978 in Detroit at
Sarasota Hospital as director of laboratories. In the mid-1980s, he retired and lived
on his savings and Social Security, $550 a month. He lived simply in a tiny, two-
room apartment near his two sisters.

Compassion did not originally motivate Kevorkian. Instead, he wanted to
increase organs for transplantation. This failed because most terminal patients are
unsuitable donors. Always a loner, he scorned membership in medical societies.
“Instinctively, as a student, I thought they were corrupt,” he says. “I’ve been inde-
pendent all my life.” Afraid to fly and hating to drive far, his patients had to come
to him. He also accepted no money from the patients whom he helped to die.

In 1990, he helped 54-year-old Oregonian Janet Adkins to die, setting off a
national debate. In 1988, Adkins had become frustrated by her inability to remem-
ber. She had early Alzheimer’s disease, the fourth-largest killer of Americans. At
the time, assisted suicide was not illegal in Michigan. When Adkins arrived in
Michigan in 1990, Kevorkian and his sister interviewed her for two hours. Nobody
thought she was depressed or that she could be helped by medicine. She signed
documents and made videotapes to prove she knew what she was doing.

The next day, June 4, 1990, Adkins met Kevorkian alone and the two drove
away in his rusty Volkswagen van to a park in Oakland County, where inside his
van, he had Janet, a cot, and a device.

The simple device consisted of three intravenous (IV) bottles hung from an
aluminum frame; Kevorkian called it the Mercitron. At the park, he connected an

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34 Chapter 2 Requests to Die: Terminal and Nonterminal Patients

IV line to Janet Adkins and started a saline solution for fluid volume. Then she
pushed a switch that stopped the saline and released thiopental, a powerful seda-
tive. The switch started a six-second timer that activated a drip of potassium chlo-
ride. Thiopental rendered Janet Adkins unconscious, and about a minute later,
potassium chloride killed her. Kevorkian said that Janet had in effect “a painless
heart attack while in deep sleep.” The process took less than six minutes.

The local district attorney prosecuted Kevorkian for murder. Because no law
prohibited assisted suicide in Michigan, a local judge dismissed the case but ordered
Kevorkian not to use his Mercitron again (although the judge had no legal basis for
his order).

In 1991, Kevorkian assisted in the death of a woman with chronic vaginal- pelvic
pain. An autopsy showed no physical cause of her pain. With Kevorkian again
indicted for murder, a judge dismissed the charges, again because of the absence
of a Michigan law. However, authorities did suspend Kevorkian’s medical license.

Without a license, Kevorkian couldn’t obtain sodium pentothal or potassium
chloride, so he began using carbon monoxide (CO). He claimed the gas “has no
color, taste, or smell; and it’s toxic enough to cause rapid unconsciousness in rela-
tively low concentration. Furthermore, in light complexioned people it often pro-
duces a rosy color that makes the victim look better as a corpse.” He taught patients
to attach one end of a plastic tube to a canister of CO and the other to the kind of
small plastic mask used in hospitals for oxygen therapy. When he turned on the
gas and the patient breathed, death occurred within five minutes. In 1992, he
helped another victim of multiple sclerosis, who donned a mask to breathe CO.

Most bioethicists and physicians denounced him. Kevorkian responded, “Why
should I care what brainwashed ethicists and non-thinking physicians say?”54 Nor did
he worry about violating the Hippocratic Oath; he called physicians who followed it
“hypocritic oafs.” He regarded himself as a Socratic gadfly and saw his struggle in
heroic terms, comparing himself to Mahatma Gandhi and Martin Luther King, Jr.

In 1995, he opened a suicide clinic in Michigan, but the building’s owner
evicted him. By 1998, he had assisted 100 patients in committing suicide and had
been acquitted in three trials involving five of those deaths.

In 1998, the Michigan legislature passed a law making physician-assisted dying
illegal. Kevorkian then assisted in the videotaped death of ALS (Amyotrophic Lat-
eral Sclerosis) patient Thomas Youk. The videotape offered irrefutable evidence at
Kevorkian’s trial that he had deliberately broken the law.

After serving eight years of his sentence, Kevorkian struck a deal in exchange
for his release from prison. He promised not to help in assisting terminal patients
to die and was granted his freedom at age 79. He died in 2011 at age 83.

DR. ANNA POU

In a dark, humid hospital that had been damaged when Hurricane Katrina struck
New Orleans in 2005, physician Anna Pou stood her post, caring for dozens of
critically ill patients who had been abandoned by other physicians. With overflow-
ing toilets, no fresh water, no electric power, a flooded first floor preventing deliv-
ery of supplies, and temperatures above 100 degrees Fahrenheit, Dr. Pou felt

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Chapter 2 Requests to Die: Terminal and Nonterminal Patients 35

responsible for several patients who could not be evacuated. Should she leave them
to die horribly or ease them out of existence?

The seventh floor of Memorial Hospital had been leased privately to LifeCare
as a long-term care facility for senior citizens with multiple medical problems. Anna
Pou, then 51 years old and a native of New Orleans, worked as a cancer surgeon
there, supervising residents at Louisiana State University School of Medicine.55

Memorial Hospital lies three miles southwest of the French Quarter in New
Orleans, a city that is essentially a big bowl around which, high above, mighty
waters flow behind levees. Historically, during hurricanes, local residents had fled
to Memorial Hospital for shelter. When a nearby levee broke, water surrounded the
hospital, trapping everyone inside.

After Hurricane Katrina made the hospital unlivable, most physicians fled. Call-
ing her a hero for remaining, Dr. Pou’s fellow physicians described her as hardwork-
ing, dedicated, and exerting a “huge presence.”56

Helicopters on Tuesday began to evacuate the sickest patients at the hospital.
On Thursday, an important date to remember, someone informed Dr. Pou that
further evacuations might not happen. Meanwhile, thousands of survivors in New
Orleans had fled into the Super Dome, begging for rescue from the appalling
conditions.

According to Dr. Pou, at that point, “when we realized that help was not immi-
nent . . . the standard of rescue changed to that of reverse triage. It was recognized
that some patients might not survive, and priority was given to those who had the
best chance of survival. On Thursday morning, only category 3 patients [the most
gravely ill] remained on the LifeCare unit.” That left nine patients there, all of whom
eventually died.

Shocking conditions prevailed at Memorial Hospital after Hurricane Katrina.
Over 2,000 people had sought shelter there—neighbors, family members, family of
staff, and previous outpatients—crowding the hallways and draining the hospital of
food, water, and clean toilets. Staff rushed by people sprawled on the floor, crying
out for water and help. Desperate people, some criminal and some with severe
mental illness, attempted to enter the hospital to get drugs or food.

On the top floor, conditions for the last nine patients worsened each day. One
paralyzed 61-year-old person weighed 380 pounds, but seemed alert, oriented, and
interactive. Others could breathe only on ventilators; some had chronic, non-healing
wounds that required intensive nursing. All sweltered in rooms as hot as 105 degrees.
Another aspirated food and suffered a heart attack but was resuscitated.

(The following facts are in contention between Sheri Fink, M.D., and Anna Pou,
M.D. Because Fink essentially accuses Pou of legal murder and because there is no
statute of limitations on bringing charges of murder, these facts may always be
contested. There is no goodwill between these two female physicians.)

The remaining staff met on Thursday and believed that no further evacuation
or help was coming to them. According to Fink, who was not there, they may have
then decided to euthanize the remaining nine patients by sedation; Dr. Pou may
have administered the drugs to euthanize them, a motive Dr. Pou denies.

Unknown to Dr. Pou, the parent organization of LifeCare, which leased a floor
that housed these nine patients, had hired private contractors to remove the patients.
In addition, all other critically ill patients had been successfully removed from

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36 Chapter 2 Requests to Die: Terminal and Nonterminal Patients

Memorial Hospital, including two 300+-pound men who could not walk, patients
from intensive care units, and tiny, premature babies.

Bioethicist Alto Charo notes, “From her perspective, these patients are now
terminal . . . and they’re terminal under particularly terrifying conditions: extreme
discomfort, [probably] panic, and the prospect of being abandoned while helpless.
[If Pou could not save them] her next obligation would seem to be . . . to give them
enough medicine that they’re not in any pain and they’re not in any panic and it
may or may not hasten their deaths.”57

At her trial, like Kevorkian, Dr. Pou insisted she did not intend to kill her
patients but only intended to relieve their pain. The grand jury agreed with her.

In 2009, investigative reporter and M.D./Ph.D. Sheri Fink won a Pulitzer Prize
for Five Days at Memorial, her story on what happened at Memorial Hospital after
Hurricane Katrina.58 Based on four years of research, Dr. Fink discovered that, first,
patients who had signed DNR (Do Not Resucitate), orders were judged to be the
last to be evacuated because they were judged by Dr. Pou to have the least to lose;
second, some patients on the LifeCare floor were DNR and some were not; third,
all were patients in rehabilitation on electricity-dependent ventilators but were not
terminally ill, but patients who, with excellent care, could have left the hospital.

When electricity failed, nurses and Dr. Pou at first kept some patients breathing
by manually pumping airbags, but by Thursday, they became physically exhausted
and stopped, so these patients died.

Among the 41 dead bodies analyzed by forensic pathologists, Pou was charged
with killing 9 patients. The cadavers of these nine contained high levels of morphine
and midazolam, drugs not justified by any previous symptoms. According to Fink,
the coroner testified that all nine patients died within three-and-a-half hours of each
other, timing that could not have occurred naturally.

In case-based bioethics, details matter a lot, and in new interviews, Dr. Fink
discovered that two of LifeCare’s patients on the seventh floor died on Wednesday,
but that the other nine made it through the night to Thursday. On Thursday morn-
ing, Dr. Pou allegedly told some staff that the nine patients were not going to make
it and would not be evacuated. Other physicians agreed and thought that when
everyone left Memorial, these nine patients might be subject to degradation at the
hands of vandals looking for drugs inside the evacuated hospital.

Emmett Everett was one of the nine remaining patients. He was a 380-pound
Honduran hospitalized for a colostomy to relieve his bowel obstruction. He was not
terminal, had no DNR order, and had pleaded, “Please don’t leave me behind.”
According to one staff member in Fink’s account, Dr. Pou and others concluded that
Everett weighed too much to be carried down five flights of stairs to where helicopters
were airlifting the last patients away. This is despite the fact that Rodney Scott, weigh-
ing more than 300 pounds, had been taken to the helipad and evacuated on Thursday.

In interviews years afterward, Fink claimed allegations by a staff member or
two that Anna Pou and John Thiele, a pulmonary physician, administered large
dosages of morphine and midazolam to the nine remaining patients, including Alice
Hutzler, a 90-year-old woman with bedsores and pneumonia, and Emmett Everett,
as well as to Wilda McCanus, who had a blood infection, and 90-year-old Rose
Savoie, who suffered from bronchitis and kidney problems. These last two women,
described late Thursday morning as alert and stable, both died that day.

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Chapter 2 Requests to Die: Terminal and Nonterminal Patients 37

Emmett Everett did not die immediately from the injection of drugs, but—
according to Fink—required staff to cover his face with a towel for a minute to stop
his breathing. By the time Dr. Pou, Dr. Thiele, and two nurses left, all nine patients
on the seventh floor of Memorial Hospital were dead.

Dr. Thiele and one of the nurses died by 2011. Dr. Pou in 2010 constructed a
website to counter the “lies” in Fink’s book. Steve Miles, a leading physician and bio-
ethicist, testified as an expert witness that results of drug tests were invalid for autop-
sies of bodies that had decomposed over many days in heat in excess of 100 degrees.
Miles did not believe it possible to prove that drug overdoses killed the nine patients.

RECENT LEGAL DECISIONS

Oregon, 1994 

After intense battles, Oregonians in 1994 and 1997 by referendum approved the
Oregon Death with Dignity Act, forcing the act into law beginning in 1998.

The act had draconian restrictions: Patients had to (1) be clearly competent, (2)
have less than six months to live, and (3) wait 15 days before filling prescriptions
to avoid impulsive decisions. Physicians could not administer the fatal dosage, only
prescribe it.

Most Oregonians die at home. Oregon has the lowest in-hospital mortality rate
in America, suggesting many referrals for home health care and respect for advance
directives.59 Under its groundbreaking Oregon Health Plan, all its previously unin-
sured, terminally ill citizens could utilize hospice programs.60

What about the State pushing early death to save money? Well, hospice and
palliative care are not cheap. A 1998 study showed that physician-assisted death
might make a difference in only one-half of 1 percent of costs at the end of life.61
Nevertheless, critics charge that state-run plans encourage early death.

Although doctors cannot be forced to participate in such deaths, they also cannot
abandon patients. Doctors who object to participating in the death “must transfer care
so that the needs of the patient can be met” and “must not hinder the transfer.”62

In the 22 years that assisted death has been legal in Oregon, about 60 to 90
terminal patients a year requested prescriptions, and about 30 to 50 used such
prescriptions to die.63 So a third of patients who use this act do not kill themselves.
Why? Because they either die before the waiting period is over or die without using
the pills. Most just want the control that having the pills gives them. Over 10 years,
only 670 of about 100,000 dying Oregonians requested terminal drugs.64

Finally, here is a tip for all of us who want to avoid undignified dying and loss
of control in an impersonal hospital. When patients really are dying, the urge to
eat disappears. In such a state, fasting becomes easy. Although patients must be
determined, such dying can be peaceful. One study in 2003 discovered that more
Oregonians died by ceasing food and water than by asking physicians to give them
drugs, and most died at home.65

U.S. Supreme Court Decisions. In 1994, a federal judge struck down a law in
Washington state, banning assisted suicide, holding that the equal protection of

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38 Chapter 2 Requests to Die: Terminal and Nonterminal Patients

liberty guaranteed in the Fourteenth Amendment covered a terminal patient’s right
to physician-assisted dying.66 However, the U.S. Supreme Court later disagreed.

One appeal alleged discrimination against dying patients, because only some
patients could decide to die by removal of a ventilator or feeding tube. If physicians
could legally kill by withdrawing treatment, it argued, why not by more direct
means? The highest Court answered that “the distinction between assisting suicide
and withdrawing life-sustaining treatment, a distinction widely recognized and
endorsed in the medical profession and in our legal traditions, is both important
and logical; it is certainly rational. . . .”67

In the second appeal, the same Court accepted the American Medical Associa-
tion’s claim that legalization of physician-assisted dying threatened the medical pro-
fession’s integrity as well as claims that physician-assisted dying would hurt the
disabled and poor. It also found “ample concern” for a slippery slope from increased
acceptance of physician killings.

These decisions held that a fundamental right to die did not exist in the Con-
stitution, such that state laws banning assisted suicide would violate it. The decisions
left the door open for states such as Oregon to legalize physician-assisted dying. They
mirrored what Cruzan said, that is, states could, but need not, pass this kind of law.

ANCIENT GREECE AND THE HIPPOCRATIC OATH

The Hippocratic Oath, considered the origin of medical ethics, forbids physicians
to kill patients. Originating in ancient Greece at the time of Socrates, Hippocrates
did not represent the views of most ancient Greek physicians, because he followed
the mathematician Pythagoras, who developed the famous theorem, worshipped
numbers as divine, and held that all life was sacred.

The Hippocratic writings do represent the work not of one man named “Hip-
pocrates” but of his followers. These practitioners “possessed no legally recognized
professional qualifications” and competed with gymnastic instructors, drug sellers,
herbalists, midwives, and exorcists.68

Many people today misunderstand this Oath, which makes physicians promise:

. . . that I will . . . hold him who has taught me this art as equal to my parents and
to live my life in partnership with him, and if he is in need of money, to give him
a share of mine, and to regard his offspring as equal to my brothers in male lineage,
and to teach his art—if they desire to learn it—without fee and covenant; . . .

I will apply dietetic measures for the benefit of the sick according to my ability
and judgment; I will keep them from harm and injustice.

I will neither give a deadly drug to anybody if asked for it, nor will I make a
suggestion to this effect. Similarly, I will not give to a woman an abortive remedy.
In purity and holiness, I will guard my life and my art. I will not use the knife, not
even on sufferers of stone, but will withdraw in favor of such men as are engaged
in this work.

Whatever houses I visit, I will come for the benefit of the sick, remaining free
of all intentional injustice, of all mischief and in particular of sexual relations with
both female and male persons, be they free or slaves.

What I may see or hear in the course of the treatment or even outside of the
treatment in regard to the life of men, which on no account one must spread
abroad, I will keep to myself holding such things shameful to be spoken about.

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Chapter 2 Requests to Die: Terminal and Nonterminal Patients 39

If I fulfill this oath and do not violate it, may it be granted to me to enjoy life
and art, being honored with fame among all men for all time to come; if I transgress
it and swear falsely, may the opposite of all this be my lot.69

With this oath, Hippocratic physicians solidified their membership against com-
peting healers, such as surgeons or sophistic physicians who charged for teaching.
Note that the oath refers only to teaching males and forbids those who swear by it
from performing surgery, abortions, or giving deadly drugs.

Ordinary Greek physicians thought that life had natural limitations, beyond
which only fools extended life. The concept of a natural limit infused Greek culture,
especially in architecture and theater. To attempt to go beyond such limits was
hubris and invited the gods to strike one down. So most ancient Greek physicians
helped their patients die.

ETHICAL ISSUES

The Concept of Assisted Suicide

One question raised by the cases of Elizabeth Bouvia and Larry McAfee is what to
call their intended action: suicide, rational suicide, assisted suicide, euthanasia, vol-
untary death, or self-deliverance? Let us clarify some terms here.

First, euthanasia usually means the killing of one person by another for merciful
reasons. The preceding cases do not involve euthanasia, because, in each case, death
would be initiated by the person him- or herself.

Second, a terminally ill patient who forgoes medical treatment doesn’t really
“commit suicide.” We should distinguish between (1) cases where an underlying
disease is incrementally leading to death and by choosing not to do everything
possible, the patient accepts death and (2) cases where a competent adult without
a terminal illness causes his or her own death. The second kind of case is appro-
priately called “suicide.” The Bouvia and McAfee cases are therefore best called
cases of assisted suicide. Neither Elizabeth Bouvia nor Larry McAfee had a terminal
disease, but they also could not easily kill themselves, hence they needed assistance.

One reason to make this distinction is that life insurance companies do not pay
benefits for suicides. Another reason is that in all states it is illegal to assist in
suicides.

Why didn’t Elizabeth Bouvia and Larry McAfee simply kill themselves? Surpris-
ingly, the answer is that it’s difficult to kill yourself painlessly, aesthetically, and
with certainty. When you’re disabled, it’s almost impossible to do so by yourself.

Misconceptions about Suicide

Whenever a suicide is botched, people infer ambivalence, but this is often mistaken.
Emergency medicine contains many stories of bizarre survivals.70 The hand holding
the gun wobbles a fraction of an inch and leaves the would-be suicide a drooling
zombie. Because drugs taken for courage also relax muscles and thus soften impact,
some jumpers survive falls from the Golden Gate Bridge. One jumper hit a parked
car, did not die, and did not lose consciousness.71

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40 Chapter 2 Requests to Die: Terminal and Nonterminal Patients

Although suicide attempts by teenagers increased 300 percent between 1967
and 1982, only 1 in 50 succeeded.72 The elderly succeed one in three times. Women
attempt suicide more than men but succeed less. Men use violent means (such as
guns); women use drugs.

Attempted suicides present a grim picture. People take lorazepam and benzo-
diazepines in insufficient quantities to cause death, often ending up merely coma-
tose. In 1987, National Security Advisor Robert McFarlane took 35–45 10-mg tablets
of Valium. When he didn’t die, people inferred he didn’t want to die. An equally
plausible explanation is that he didn’t know how to kill himself. Even physicians
don’t. In 1985, physician Robert Rosier didn’t know how much morphine to give
his terminally ill wife to help her die.73

People using other methods may not die but awake in the ER (Emergency
Room). CO poisoning may not work because the car can stall or run out of gas;
the CO may not concentrate enough to produce death, so the person ends up with
half his former intelligence.

Slitting wrists in a warm tub is not easy: The cuts are painful and must be made
deep and in the right place. Nor is this method certain: In the time between uncon-
sciousness and death, the arm may move out of the water and the blood may coag-
ulate. One ER physician observes, “Most slashers just get a trophy: a claw hand.”

Some people who don’t kill themselves wake up with a nasogastric tube down
their throat, into which syrup of ipecac is pumped to induce vomiting. ER physi-
cians then inject saline solution and start gastric lavage—alternate flooding and
suctioning of the stomach—and then pump granulated charcoal to absorb remaining
toxins.

If they want to spare the feelings of others or be found in a dignified state,
suicides should avoid certain methods. A drug overdose not only decreases respi-
ration but also relaxes bowels and bladders. Jumping off a building or shooting
oneself in the head leaves a crushed body. Hanging is difficult to do correctly
because the neck may not break and the victim, kicking in agony as he or she
partially asphyxiates, may not die. Men who do die in this way are found with an
erection and may have lost control of their bladder and bowels.

Rationality and Competence

In Elizabeth Bouvia’s case, psychiatrist Nancy Mullen testified that because Eliza-
beth was suicidal, she could not rationally make decisions about her life. Mullen
said that she could conceive of no situation where people could make competent
decisions to take their own lives.74 Carol Gill, a professor of occupational therapy
who used a wheelchair, criticized the ACLU for backing “a handful of medical
experts” who found that Bouvia was competent.75

Mullen and Gill may have begged the question of rational suicide. A question
is begged when the answer is assumed to be true rather than proved. In these cases,
the question is whether a decision to die is irrational: whether it indicates misin-
formation or faulty reasoning. Just assuming that a decision to die is always irratio-
nal begs that question.

This is not to say that a decision to die is always rational. Elizabeth Bouvia may
have been depressed, and psychological tests might have shown this. But Mullen

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Chapter 2 Requests to Die: Terminal and Nonterminal Patients 41

and Gill did not base their arguments on such tests. They were not Elizabeth’s
therapists and were not treating her. Mullen and Gill reacted to the content of
Elizabeth’s decision rather than to psychological tests. Indeed, three psychiatric
professionals who actually tested Elizabeth found her competent.76

In America a patient is legally competent until proven otherwise and proven
so in a legal hearing. No patient can be held in a hospital against her will without
having been proven legally incompetent. In practice, hospitals sometimes break
such laws.

Autonomy

At the start of bioethics in the 1970s, autonomy fueled the patient rights movement.
Applied to the right to die, an autonomous person who has not been proved incom-
petent and who is terminally ill always has a right to end his or her life.

But not everyone glorifies autonomy in bioethics. Critics argued that Bouvia
and McAfee did not want to die because they made dramatic demands on public
institutions, “acting out” and pleading for attention. In such cases, critics argue,
physicians must not accede to wishes of unstable patients. Only fools would assist
every distraught patient who come to an ER wishing to die.

The Roman Catholic Church opposes autonomous suicide. In 1990, Father
Kevin O’Rourke argued that humans are not in control of their lives.77 O’Rourke
argued that God has a plan for each person and it never includes suicide.

One problem with uncritical acceptance of autonomy is the famous SUPPORT
study (Study to Understand Prognoses and Preferences for Outcomes and Risks
of Treatments). It discovered that competent people do not accurately predict what
they will later find unacceptable as quality of life.78 People who predicted that
they would rather die than go on a ventilator most often did not choose to die
but chose life on a ventilator. It’s one thing to say abstractly that one would “rather
be dead than live like that,” but when actually faced with death, most people
decide to live.

Moreover, in rehabilitation medicine there is the equally famous adaptation
effect, in which after six months or so, patients like Larry McAfee who were disabled
in accidents, adapt their views about acceptable quality of life. What they once
considered unacceptable then becomes acceptable. For most patients, it may take
six months or more for this effect to occur.

Supporters of assisted suicide argue that providing such assistance continues
good medical care, even if a patient is not terminally ill. When quality of life dimin-
ishes, the fact that a patient does not have a terminal disease is irrelevant. The real
issue is whether a quality of life is acceptable to the person who must endure it,
and that is an evaluative judgment that can be made only by that person.

If physicians ignore autonomy, patients can be flogged to death with unneces-
sary tubes, surgery, and radiation. Such barbaric end-of-life treatment differs little
from involuntary commitment of competent people in psychiatric wards.

So the key question was not whether Elizabeth Bouvia was demonstrably com-
petent or incompetent, but where the onus of proof should lie. For rugged individ-
ualists and Libertarians who abhor the growing powers of government and
physicians, this onus should be on those who would take away autonomy.

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42 Chapter 2 Requests to Die: Terminal and Nonterminal Patients

As we shall see in Chapter 3, in 1990, the U.S. Supreme Court decided in its
Cruzan decision that no state may pass a law limiting the right of competent patients
to decline medical treatment, even if declining treatment would hasten death. Cru-
zan built on the Bouvia and McAfee decisions and was a victory for the right of
competent adults to control how they died.

Autonomy raises some questions about risks: Who is best qualified to assess
the danger of dying too soon? What degree of risk is acceptable? Who should
determine acceptability? How does the risk of dying too soon compare with the
risks entailed by alternatives?

Physicians usually believe that they are best qualified to assess risk, and they’re
right as far as statistical risk is concerned. But acceptable risk is evaluative as well
as statistical, and many patients want the right to make their own judgments about
what is acceptable risk.

When terminal patients make such evaluations, their concern is more than just
fear of pain. Derek Humphrey of the Hemlock Society has written, “It isn’t just a
question of pain. It is a question of dignity, self-control, and distress. If you can’t
eat, sleep, or read, and the quality of life is so bad, and there is a certainty that
you are dying, it is a matter of dignity” to be able to end your life.79

In order to evaluate acceptable risk, patients need information. Margaret Battin
holds that physicians rarely discuss options with dying patients.80 She believes that
patients’ informed consent should be sought not only for medical research but also
for ways of dying. Especially when experimental drugs and surgery are involved,
terminal patients should be informed about different outcomes and different ways
of dying so that they can choose the least worst death. Alas, few patients get such
information and are allowed to make such choices.

Anna Pou’s patients did not seem to ask to die. At least one of them seems to
have been oriented and alert and could have been asked. Maybe she thought asking
was moot, as no rescue was coming and conditions were worsening. Nevertheless,
this lack of consent is a serious charge against Dr. Pou.

Inadequate Resources and Poor Treatment

Although every decision to die is not irrational, some suicidal people suffer from
treatable depression. Patients who have experienced devastating injuries may want
to die. While in the throes of depression, these people do not understand how much
better they can later feel. Antidepressants can lift mood and should be given to all
nonterminal patients who wish to die.

A different clinical issue concerns relief of symptoms. One physician in pallia-
tive care always asks his patients, “What is the chief symptom that makes you want
to die now?”81 That answer is often not what outsiders predict. One patient suffered
obviously from air hunger but most missed going to a public park in his trailer, so
volunteers quickly arranged such visits. With good coverage, almost any symptom
can be controlled, including pain, air hunger, itchiness, fatigue, and boredom.

End-of-life care varies considerably across developed countries. A survey by a
charity ranked Britain best for such care, followed by Australia and New Zealand,
then the United States.82 One nagging worry is that some historians think that the
ultimate reason for the rise of Nazi Germany was economic. After losing World War

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Chapter 2 Requests to Die: Terminal and Nonterminal Patients 43

I, the Germans were made to pay huge war reparations, which caused great harm
to the German economy and created much ill will. Since World War II, and espe-
cially in the past decades, North America has experienced an unparalleled economic
boom. What will happen when times turn bad and families must choose between
grandma’s care and a child’s college tuition?

Most patients and families are shielded from the true costs of long-term cover-
age at the end of life. What might be truly dangerous is to give physicians incentives
to curtail care at the end of life while ethical bulwarks against physician-assisted
dying are weakened. That could easily become not just a wave but a tsunami, espe-
cially during a major depression and intergenerational war over who should pay the
medical costs of an aging population.

Opponents of legalization claim that physician-assisted deaths botch 25 percent
of cases in Holland and therefore it should be illegal.83 This is a strange argument,
because it complains about the “how to” part of the legalization. In other words,
physicians at present aren’t good enough to guarantee death.

Of course, death for some patients will not be easy. Some AIDS patients who
were IV drug users and who attempted suicide at dosages recommended by the
Hemlock Society had high tolerances to central nervous system depressants. Instead
of dying, they sometimes became comatose.

To avoid this possibility, the patient needed to ask a friend to be present to
possibly help at the end by attaching a large plastic bag over the patient’s head and
securing it with duct tape, such that the patient could suffocate to death. (Called
the “Exit Bag” by critic Nat Hentoff, this refers to the efficient, self-administered
form of it with Velcro straps that once could be ordered from the Hemlock Soci-
ety.84) The use of Exit Bags subjects friends to charges of murder. It leaves dying
patients faced with the dilemma of dying alone and botching the attempt or asking
a friend to be present, assist, and risk prosecution for assisting in suicide.

This is why Oregonian physicians may attend the deaths of terminal patients.
If something goes wrong, they can adjust medications or deal with unexpected
complications. In short, this argument is not an argument for no physician-assisted
dying, but for more of it.

Social Prejudice and Physical Disabilities

For disability advocate Paul Longmore, who was a ventilator-dependent professor
with quadriplegia, Bouvia’s case shows how a prejudiced system destroys the inde-
pendence of disabled people.

By creating intolerable conditions, society paints people with disabilities into a
corner, leaving them with only one autonomous decision consistent with their for-
mer selves: to decide to die. Professionals who keep them passive and dependent
make every other decision for them. In Longmore’s words:

Given the lumping together of people with disabilities with those who are termi-
nally ill, the blurring of voluntary assisted suicide and forced “mercy” killing, and
the oppressive conditions of social devaluation and isolation, blocked opportunities,
economic deprivation, and enforced social powerlessness, talk of their “rational” or
“voluntary” suicide is simply Orwellian newspeak. The advocates of assisted suicide
assume a nonexistent autonomy. They offer an illusory self-determination.85

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44 Chapter 2 Requests to Die: Terminal and Nonterminal Patients

To see Bouvia or McAfee simply as cases of a right to die is to miss a much
bigger issue. Elizabeth Bouvia wanted to die because of centuries of prejudice
against people who are physically disabled—prejudice that society expresses daily—
prejudice that idealizes youth, beauty, sex, athleticism, fitness, and wealth.

Longmore despises films that encourage disabled people to view killing them-
selves as a rational response to their miserable conditions. He cites Annie Hall,
Elephant Man, and especially Whose Life Is It Anyway? He claims that watching the
latter depressed Elizabeth Bouvia. He could have also cited the 2004 film Million
Dollar Baby.

Longmore sees Bouvia as one who slipped through the cracks of an impersonal
system. She was tragic not because of her physical situation but because of her social
situation. Even as a hospitalized patient, she remained sadly alone. It was this
aloneness that underlay her fierce desire to tear herself away from life.

In 1990, the Americans with Disabilities Act (ADA) became federal law. This
legislation represents one of the most sweeping changes in American life and was
intended to integrate Americans with disabilities into normal life. Despite it being
passed over two decades ago, many institutions do not comply with it because of
its high costs.

Raising the issue of inadequate resources puts physicians in an awkward place.
On one hand, they do not want to torture disabled people who want to die. On
the other hand, they do not want to kill disabled people because a prejudiced soci-
ety is too cheap to help their patients.86

As a result of childhood polio, Professor Longmore’s arms were paralyzed, his
spine was curved, and he used a ventilator as much as 18 hours a day.87 As a pro-
fessor of history at San Francisco State University, his success would have been
impossible without his ability to live on his own, which required home health care
aides. Fortunately, California’s generous Medicaid program paid for his domestic
aides ($15,000 a year) and Medicare disability paid for his ventilator ($12,000 a
year). Had he lived in Georgia, Longmore, too, might have wanted to die, where
he would not have been able to find a group home and where, as he said, “proba-
bly would have found my life unendurable.”

Longmore maintained that Elizabeth Bouvia’s problems resulted in part because
she did not receive her maximum payments and because her county is notorious
for its stingy benefits to disabled people.

When a disabled person takes a job or marries, officials reduce his or her ben-
efits. California’s In-Home Supportive Services program allowed Elizabeth to man-
age her own life at home only while she was single; when she married, however,
her husband was expected to care for her. Given these circumstances, it is no
wonder that Bouvia later divorced or that she did not complete her training for a
job. Longmore concludes:

This is a woman who aimed at something more significant than mere self-sufficiency.
She struggled to attain self-determination, but she was repeatedly thwarted in her
efforts by discriminatory actions on the part of the government, her teachers, her
employers, her parents, and her society. Contrary to the highly prejudiced view of
the appeals court, what makes life with a major physical disability ignominious,
embarrassing, humiliating, and dehumanizing is not the need for extensive physical
assistance, but the dehumanizing social contempt toward those who require such aid.

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Chapter 2 Requests to Die: Terminal and Nonterminal Patients 45

University of Alabama at Birmingham professor Russ Fine believes that McAfee’s
desire to die also resulted from his inadequate care. Public officials control costs by
requiring patients to live in the most cost-effective facilities, but McAfee said that if
he couldn’t live in his own apartment, he would rather die. According to Fine, McA-
fee “was very vocal about inferior nursing care, which was the rule, not the excep-
tion, in these marginal health-care facilities that had accepted these contracts.”88

Once, Fine had brought McAfee to a Thanksgiving dinner and the two were
watching a televised football game while waiting for McAfee’s family to arrive for a
visit. Fine was drowsing in an armchair when he suddenly realized that McAfee had
stopped breathing. Aides soon got Larry breathing and Fine then saw tears streaming
out of his eyes. “He didn’t really want to die,” Fine concluded. “He was just terrified.”89

It should be noted that McAfee, like Bouvia, wanted to work, but getting paid
for working would have made him ineligible for publicly funded assistance in hous-
ing or for Medicaid.

During the past decades, people with disabilities increasingly resisted discrim-
ination, asserting their right to 24-hour-a-day attendants, public transportation, and
good housing.90 They asserted that they had a condition, not an illness. For them,
“Disability Culture” is not bad but a source of identity. Indeed, the disabled com-
munity is the only minority that one may join at any time.

People with disabilities demonstrated against Princeton bioethicist Peter Singer,
whose views on quality of life, they fear, will allow society to easily kill the disabled.
They hectored the director of Compassion and Choices, Faye Girsh, for being sym-
pathetic to the assisted death of nonterminal patients. Girsh testified on behalf of
Canadian Robert Latimer, who in 1993 killed his 12-year-old daughter who was
afflicted with cerebral palsy. Disability groups accused her (and most bioethicists)
of siding with rich autonomous elites.

Cases such as those of Bouvia and McAfee suggest that we often give severely
disabled people three grim choices: to become a burden on their families, to live
miserably in a large public institution, or to kill themselves. Getting better access
to public facilities for people with disabilities and especially not allowing young
people with disabilities to languish in nursing homes for the elderly have become
major issues about justice in medicine.91

Is Killing Always Wrong?

Arguments often either claim that something is directly, or intrinsically, wrong or indi-
rectly wrong because it leads to bad consequences. One direct argument against physi-
cian-assisted dying is that such actions wrongly kill vulnerable humans. It is always
wrong to kill humans under all circumstances, and just because a human is dying, no
exceptions can be made. Evil occurs when one human ends the life of another.

This argument does not claim that what is wrong about killing is that it can
become uncontrollable after a few justified cases, for that would be appealing to a
slippery slope. Instead, it claims that all killing is intrinsically wrong, no matter what
the circumstances.

Whether or not an afterlife or God exists, once a person is dead, he or she’s
not coming back. Without an afterlife, this life is all a person has, and to take it
away is to take away all values because the valuer is gone.

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46 Chapter 2 Requests to Die: Terminal and Nonterminal Patients

For many decisions, such as transplanting a kidney, if mistakes occur, there is
backup, for example, hemodialysis. But mistakes in killing have no backup. Once
a person is dead, that’s it.

For this reason, killing must not be taken lightly. Life must not be cheapened.
The ultimate power on earth is to take away life. All life should be valued, not just
some in the right circumstances. Life is precious, no matter how low its quality. Of
all values in medicine, this one must reign supreme.

The most ancient justification of the direct argument is based on religious meta-
physics: that God exists, that Scripture correctly reveals his laws for humans, and
that one such law is for humans never to kill another human. Based on this view,
some Christians and some orthodox Jews prefer death to self-defense, refuse war
and the draft, and will never kill.

One should note that Scripture really bans “unjustified” killings, and hence
allows just wars and the death penalty for murderers. The question here concerns
whether helping terminally ill patients die is “unjustified killing.” After all, God
presumably allows us to get terminal illnesses, so in one sense, dying for each of
us is His Will.

More important, the background conditions need to be examined about the
rule against killing. In the past, most people have wanted to live as long as possible,
but that fact is less true today. Why? Because medicine has cured acute diseases
and left us with the disability and dysfunction that come with chronic diseases.

Now consider the rule against killing and physician-assisted dying. When you
help me accomplish what I want to do, you do a good thing, and morality encour-
ages you to help me. When you prevent me from doing what I want to do, you hurt
my interests, and your actions may be immoral. Whether or not dying assisted by
physicians is good or bad may depend, not on what has been traditionally been
judged moral or immoral but on the wishes of the patient.

Of course, critics can object that helping me do what I want to do is not always
a good thing, such as if I want to steal my neighbor’s car. And, they say, helping
people die is immoral.

But why should we allow this objection? Why should we accept the underlying
premise that “helping dying people die is immoral” unless some further reason is
given? To simply assert this as an objection is to beg the question. It is not an
argument against a position to assume that it is wrong.

Killing versus Letting Die

For several decades, bioethicists have debated whether killing differs from letting
die. A 1997 survey by the American Hospital Association found that 70 percent of
deaths in hospitals involve some decision by a physician or relative to cease treat-
ment.92 However, intentional termination of a dying patient’s life is still illegal in
most states.

A leading physician in medical ethics once admitted, “I have had occasion to
give a patient pain medication we both knew would shorten her life.”93 Does this
differ from killing her?

In palliative care, physicians practice terminal sedation, which stands on the
doctrine of double effect where the physician must not intend death but merely the

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Chapter 2 Requests to Die: Terminal and Nonterminal Patients 47

relief of pain. Does such sedation differ from killing the patient? Is the difference
only semantic?

In 1975, philosopher James Rachels attacked the distinction between active
and passive euthanasia in a famous article in the New England Journal of Medi-
cine.94 Rachels argued that this distinction, though still dominant in modern med-
icine and law, has no inherent moral value, and when it is taken for anything
more than a pragmatic rule, it leads to decisions about death based on irrelevant
factors.

Rachels’s logic cuts two ways: First, letting a vegetative patient die is just as
bad (or good) as killing him or her; second, killing a vegetative patient is just as
good (or bad) as allowing him or her to die. There is nothing moral or immoral in
the act of passive or active euthanasia itself; instead, morality or immorality is
determined by motives and results in the context of that act. Focusing on whether
an act is active or passive, he argued, may confuse our judgments, leading us to
think that passively allowing people to die slowly and horribly is morally superior
to actively bringing about a quick, painless death.

Rachels caused controversy. Is intending death by removing a respirator equiv-
alent to suffocating a patient with a pillow? If a patient is allowed to die, isn’t that
patient killed by the disease? But if someone acts directly to bring about dying, isn’t
that human agent the cause of death? One critic argued:

What is the difference between merely letting a patient die and killing that patient?
Does it depend upon activity or passivity? Does it depend on an agent’s intentions?
I think that neither of these factors are relevant. What is relevant is the cause of
death. When the cause of death is the underlying disease process, the patient is
simply allowed to die.95

So after Hurricane Katrina, diseases didn’t kill Anna Pou’s patients, Anna
Pou did.

Philosopher Bonnie Steinbock argues that Rachels confuses ceasing treatment
with killing or “intentionally letting die.”96 The former may stem from rights of
protection against unwanted interference and medical standards of appropriate
treatment. The latter connotes a different motive, wanting a life to end soon.

In support of Rachels, it can be argued that in practice the line between active
and passive is hard to draw. In some cases, not acting can be considered active.
This does not entail that killing and assisted dying do not differ; as Jean Davies
argued, just as “rape and making love are different, so are killing and assisted
suicide.”97

Relief of Suffering

One of the most persuasive arguments for physician-assisted dying is the appeal to
mercy. Anna Pou probably saw panicked patients suffering in terrible heat, dehy-
dration, and discomfort. Observing another human being in untreatable pain howl-
ing like a wounded animal should move us to tears. We do this for our pets; why
can’t we do so for humans? Moreover, the suffering of terminal patients is not
confined to physical pain, as bad as that is; it also involves helplessness, stress,
exhaustion, and terror.

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48 Chapter 2 Requests to Die: Terminal and Nonterminal Patients

A big issue here has to do with relief of pain. Is it possible to relieve all pain
and make dying patients completely comfortable? Cicely Saunders, who founded
St. Christopher’s Hospice in London, said her dying patients never needed to suffer
pain. She gave them Brompton cocktails, a powerful brew of morphine, heroin,
alcohol, and cocaine.

On the other hand, Derek Humphrey of the Hemlock Society argued that “it
is generally agreed that 10 percent of pain cannot be controlled. That is a lot of
people.”98 Margaret Battin and Timothy Quill acknowledge that even with excellent
palliative care, 2–5 percent of terminal patients experience pain that is uncontrol-
lable.99 It is also true that not everyone experiences pain in the same way, and a
condition that would be acceptable to some might be intolerable to others.

A second question concerns what the cost of relief might be and what costs are
acceptable. In this context, we are not talking about financial costs: The issue is the
cost to the patient’s well-being. Powerful narcotics such as Brompton cocktails numb
consciousness and make patients mostly unconscious.

Dying patients must make a trade-off between consciousness and relief of pain,
and not every patient considers that trade-off acceptable. For some patients, being
conscious and able to talk to relatives and friends is more important than avoiding
pain. Here again, autonomy becomes relevant. What counts as a benefit or a harm
must be defined within each patient’s own value system, and who else but patients
can make such judgments?

Ethics and medicine commonly distinguish between pain and suffering. Pain is
physical; suffering is a broader and more personal matter. Pain covers one aspect of
suffering, but relieving pain does not necessarily relieve suffering.

Pieter Admiraal, a physician and one of the leaders of assisted dying in the
Netherlands, agrees that uncontrollable pain is rarely the only reason for death:

There is severe dehydration, uncontrolled itching and fatigue. These patients are
completely exhausted. Some of them can’t turn around in their beds. They become
incontinent. All these factors make a kind of suffering from which they only want
to escape. . . .

And of course you are suffering because you have a mind. You are thinking
about what is happening to you. You have fears and anxiety and sorrow. In the end,
it gives a complete loss of human dignity. You cannot stop that feeling with medical
treatment.100

In Dr. Pou’s case, one could argue that her nine patients were suffering badly
and it was unlikely that they would be saved. Gravely ill with many medical prob-
lems, lying in hot, humid rooms with no fresh water—it is hard to imagine a more
uncomfortable place to be.

Slippery Slopes

One of the most famous ideas in ethics is the slippery slope, also called the “thin
edge of the wedge argument.” It figures prominently in ethical debates, as we saw
in decisions by the U.S. Supreme Court.

Two kinds of slippery slopes exist: empirical and conceptual.101 Claims about
empirical slopes assert that taking the first step unleashes something bad in human

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Chapter 2 Requests to Die: Terminal and Nonterminal Patients 49

nature. As Leo Alexander says, “The destructive principle, once unleashed, is bound
to engulf the whole personality and to occupy all its relationships.”102

A conceptual slippery slope asserts that once a small change is made in a moral
rule, other changes will soon logically follow. Why? Because reason demands consistency
in treating similar cases similarly. Alexander also claims this kind of slope occurred:

The beginnings at first were merely a subtle shift in emphasis in the basic attitude
of the physicians. It started with the acceptance of the attitude, basic in the eutha-
nasia movement, that there is such a thing as life not worthy to be lived. This
attitude in its early stages concerned itself merely with the severely and chronically
sick. Gradually the sphere of those to be included in this category was enlarged to
encompass the socially unproductive, the ideologically unwanted, the racially
unwanted and finally all non-Germans. But it is important to realize that the
infinitely small wedged-in lever from which this entire trend of mind received its
impetus was the attitude of the nonrehabilitable sick.103

With conceptual slopes, once physicians kill one kind of patient because qual-
ity of life makes “life not worthy to be lived,” they not only can but will use the
same reasoning to kill in similar cases.

Consider this example of a conceptual slope: first we will allow abortion of a
fetus because of Down syndrome and then we will let a newborn with Down syn-
drome die. Notice that in conceptual slopes, it is always the demand of reason to treat
similar cases similarly that expands the initial change.

Another example: at the time of the Karen Quinlan case in 1976 (see next chapter),
disability advocate James Bopp said that if you “accept quality of life as the standard,”
then “first you withdraw the respirators, then the food and then you actively kill peo-
ple. It’s a straight line from one place to the others.”104 Bioethicist Daniel Callahan
then said that the logic of the case for euthanasia would inevitably lead to its extension
far beyond terminally ill competent adults. If relief of suffering is critical, Callahan
said, “[W]hy should that relief be denied to the demented or the incompetent?”105

As an example of an empirical slope, consider Michael Swango, charged and
convicted in 2000 with killing three patients in New York State. Upon investigation,
Swango was found to have killed at least 60 patients, possibly hundreds, starting
in Zimbabwe in the early 1980s and moving around the world. His diary revealed
that he killed for the thrill of the power to kill and “the sweet, husky, close smell
of an indoor homicide.”

Critics fear that such malice will be unleashed with legal, physician-assisted
deaths. Law professor Yale Kamisar says, “Not all people are kind, understanding,
and loving.”106

After four patients under her care died suspiciously, Anna Pou was charged
with second-degree murder.107 The Louisiana Attorney General alleged that they
died of overdoses of morphine and midazolam. Although the grand jury declined
to indict Dr. Pou, it may have done so in part because other physicians abandoned
the hospital while she heroically stayed, because the four patients might well have
died anyway, and because she seemed compassionate. But it still may be true that,
given the changing ethical climate about physician-assisted killing in America, she
felt freer to do this than she would have decades ago. To that degree, and under
those circumstances, perhaps some slippage has occurred.

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50 Chapter 2 Requests to Die: Terminal and Nonterminal Patients

Contrasts may be made among the two kinds of slope claims. The empirical
claim is a prediction about consequences if some moral change occurs, whereas the
conceptual claim refers to a linkage in reasoning once particular premises are
accepted. Where the empirical slope says one small change will create many others
because of something bad in humans, the conceptual slope says the same kind of
change can occur because of something higher—reason’s need to treat similar cases
similarly.

In 1975, columnist Nat Hentoff predicted that the Quinlan decision would bring
on an empirical slippery slope. In 1992, he felt vindicated in describing Jack Kevork-
ian’s actions and the decriminalization of physician-assisted dying in the Netherlands,
all of which he called a “reckless cheapening of life.”108 Yet it took 22 years after the
Quinlan decision before the first terminal patient legally died with the help of a phy-
sician in Oregon in 1998, and the Schiavo case (see next chapter) showed us how far
we are from readily accepting the deaths of incompetent, comatose patients.

In Oregon, physician-assisted deaths average less than 100 a year. In Holland,
a real expansion of cases occurred. Teenagers and psychiatric patients are killed
with their consent, as well as newborns suffering with terminal conditions. Callah-
an’s prediction has come true, but the Dutch regard it not as a descent but as a
moral elevation: The Dutch agree that if it’s justified to kill a consenting 64-year-old
with terminal cancer, why isn’t it also justified to kill a consenting 16-year-old with
terminal cancer?

Physicians’ Roles, Cries for Help, and Compassion

Some physicians argue that “physicians should not kill” and should always be heal-
ers. This statement assumes incorrectly that physicians can always heal. That is
false. Everyone will eventually die. No human has ever been “healed” of death. To
simplistically assert that “physicians should not kill” begs the key question at issue.

More than one way exists to be a compassionate physician to dying patients.
A good physician makes sure his or her patient isn’t depressed and doesn’t choose
death because of treatable symptoms. The short interviews by Dr. Kevorkian and
his layperson sister, of his patients who arrived in town the day before they were
killed, did not meet the highest standards of humanism in medicine.

Mistakes and Abuses

Physicians make mistakes. Surgeon Christiaan Barnard recalled a young woman
with ovarian cancer who repeatedly begged him to kill her painlessly with mor-
phine.109 Being aware that she was terminal—and hearing her screams at night—Bar-
nard decided to help her. When he came into her room with a syringe loaded with
morphine, she was quiet, and he thought that she was in too much pain even to
scream. Then he realized that she was semiconscious, beyond pain, and changed
his mind. The next morning, she felt better; soon she was in remission and lived
another few months.

As for Anna Pou, her role drew mixed reactions. On one hand, if it was a triage
situation, she acted mercifully. But what if it wasn’t a true situation of triage, because

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Chapter 2 Requests to Die: Terminal and Nonterminal Patients 51

unknown to her, help was on the way? What if the definition of a “triage situation”
is more subjective than it first appears?

What if she had waited one more day? Some of her patients would have lived.
In Holland, critics claim that physicians often misdiagnose “intractable and unbear-
able” suffering.

Let us put this point differently. In bioethics, many discussions begin with a
phrase like “If a patient has a terminal illness . . . .” Notice the word “if.” In pre-
sumably terminal illnesses, few claims are absolute until the patient’s last days.
Before then, how “terminal”—how close to death—the patient is may depend on
many factors that are not easy to assess: the patient’s attitude, the family’s attitude,
the attitude of staff members, the quality and level of care, and so on. Some termi-
nal patients were misdiagnosed and recovered. Physician-assisted dying allows a
mistaken diagnosis to become a death sentence.

Israeli physician Seymour Glick once revealed a dirty little secret of medicine:
Every physician has some patients whom he dislikes. Some illnesses are messy,
some families are intolerable, and some physicians make mistakes and harm
patients. In such cases, physicians want the patients to “go away.”

Cries for Help

Joanne Lynn, a physician who cared for 1,000 hospice patients, believes that most
terminal patients who request physician-assisted death are actually seeking atten-
tion, control, dignity, relief of symptoms, or relief from depression.110

Terminal patients are often bored, depressed, and lonely: people avoid them.
This is why it is a duty to visit dying patients. People who once did important
work now have nothing to do. People who never watched television now watch it
all day long.

Bioethicist Margaret Pabst Battin and physician Timothy Quill argue that phy-
sician-assisted dying should be an option of last resort after all resources are
exhausted of excellent palliative care.111 They stress that such physician-assisted
dying should not substitute for great palliative care.

FURTHER READING AND RESOURCES

Nonterminal Patients Who Want to Die:

“Elizabeth Bouvia: 10 Years Later,” 60 Minutes Special, www.cbs.com.
Pat Milmore McCarrick, “Active Euthanasia and Assisted Suicide,” Scope Note 18, Kennedy

Institute of Ethics Journal, no. 1 (March 1992).
James Rachels, The End of Life, Oxford, U.K.: Oxford University Press, 1986.

Physician-Assisted Suicide:

Sheri Fink, Five Days at Memorial, Crown, New York, NY, 2013.
Kathleen M. Foley and Herbert Hendin, eds., The Case Against Assisted Suicide: For the Right

to End-Of-Life Care, Johns Hopkins University Press, 2002.
Timothy Quill and Margaret Pabst Battin, eds., Physician-Assisted Dying: The Case for Palliative

Care and Patient Choice, Baltimore, MD: Johns Hopkins Press, 2004.

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52 Chapter 2 Requests to Die: Terminal and Nonterminal Patients

DISCUSSION QUESTIONS

Nonterminal Patients Who Want to Die:

1. Can decisions be justified by their outcomes? What if, when they had the oppor-
tunity, Bouvia or McAfee had killed themselves? Would that mean the physi-
cians who prevented their earlier deaths were wrong?

2. How do you know when you’ve really properly treated depression and “debil-
itating symptoms” when a patient has sustained a terrible accident or is dying?
Isn’t that a Catch-22, where you only know you’ve successfully treated it when
the patient decides to live?

3. Is the right to die glamorized in movies? What if the paralyzed fighter, portrayed
by actress Hillary Swank in Million Dollar Baby, had to suffocate slowly for 20 min-
utes in dying? What if her reflexes kicked in and her body resisted? She lost bowel
and bladder control? It didn’t work and she was left comatose or brain-damaged?

4. Right now, society seems to exalt young bodies, sexiness, athleticism, and
wealth. Do these images set young people up for failure? As most people can’t
have these traits, what message do these images send to people who are the
opposite? Is this a good set of values to live by?

5. How do diversity and autonomy go together or not? Will some ethnic groups
be more interested in autonomy in medicine than others? Is autonomy more
meaningful to some than others? Should autonomy be defined as a check or
balance against the power of the medical establishment over the individual?

Physician-Assisted Dying:

1. If you were Anna Pou and believed no rescue was coming for your nine patients,
would you have done the same?

2. Almost all the patients who died in Oregon and Washington were white and
educated. Why do you think other kinds of people didn’t use the law?

3. If physicians were on salary rather than being paid per procedures, would more
terminal patients be killed more quickly?

4. Do views about physician-assisted killing depend on whether you think humans
are basically selfish and sinful or good and compassionate?

5. Does the doctrine of terminal sedation (double effect) make sense? Can anyone
really know what is in someone else’s mind?

NOTES

1. Associated Press, October 16, 1983.
2. Robert Steinbock and Bernard Lo, “The Case of Elizabeth Bouvia: Starvation, Suicide or Problem

Patient?” Archives of Internal Medicine 146 (January 1986), p. 161.
3. Quoted in George Annas, “When Suicide Prevention Becomes Brutality: The Case of Elizabeth

Bouvia,” Hastings Center Report 14, no. 2 (April 1984), p. 20.
4. Associated Press, in Birmingham Post-Herald, December 14, 1984, p. A2.
5. Quoted in Arthur Hoppe, San Francisco Examiner, December 20, 1983.

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Chapter 2 Requests to Die: Terminal and Nonterminal Patients 53

6. Steinbock and Lo, “The Case of Elizabeth Bouvia,” p. 161.
7. Bouvia v. County of Riverside, California Superior Court, December 16, 1983.
8. Richard Scott, in “Patient’s Suicide Wish Troubles Hospital MDs,” American Medical News, Janu-

ary 20, 1984, p. 5.
9. Arthur Hoppe, San Francisco Examiner.
10. Annas, “When Suicide Prevention Becomes Brutality,” p. 46.
11. George Annas, “Elizabeth Bouvia: Whose Space Is This Anyway?” Hastings Center Report 16, no. 2

(April 1986), p. 20.
12. Steinbock and Lo, “The Case of Elizabeth Bouvia,” p. 162.
13. George Annas, “Elizabeth Bouvia,” pp. 24–25.
14. Derek Humphrey and Ann Wickett, The Right to Die: Understanding Euthanasia, Harper and Row,

New York, 1986, p. 150.
15. Paul Longmore, “Elizabeth Bouvia, Assisted Suicide, and Social Prejudice,” in Issues in Law and

Medicine, no. 2 (Fall 1987), p. 158.
16. The hospital’s rationale in its brief to Judge Deering is quoted in Annas, “Elizabeth Bouvia,” p. 24.
17. Bouvia v. Glenchur, Los Angeles Superior Court, California Reporter 225 (1986), pp. 296–308.
18. Bouvia v. Superior Court (Glenchur), California Reporter 297, California Appellate 2 District, 1986.
19. In Bartling v. Superior Court (1984), California court recognized the constitutional right of a competent

patient to refuse life-sustained treatment, as it did in a 1983 criminal case, Barber v. Superior Court. A
Florida court in 1978 recognized a competent patient’s right to remove a life-sustaining device in Satz
v. Perlmutter 362 So.2nd 160. Thanks to Bonnie Steinbock and Alicia Ouellette for these references.

20. Jeff Wilson (AP), “Precedent-Setter Lives On after Plea to Die,” Indianapolis Star, December 19, 1993,
p. H7.

21. Elaine Woo, “Obituary: Harlan Hahn; USC Professor Fought for Disability Rights, Sued University
to Improve its Access,” May 10, 2008, Los Angeles Times.

22. B. D. Colen, “His Life, to Take or Not,” Newsday, September 25, 1989, pp. 5–19.
23. Susan Schindehette and Gail Wescott, “Deciding Not to Die,” People, January 18, 1993, p. 86.
24. Ibid.
25. Russ Fine, UAB Report, September 4, 1992, p. 4.
26. Ibid.
27. Associated Press, “Thousands Retiring without Social Security,” February 16, 1993.
28. Russ Fine, personal communication to author, May 16, 1994.
29. Egan, Nicole Weisensee,”Terminally Ill 29-Year-Old Woman: Why I’m Choosing to Die on My Own

Terms”. People October 6, 2014. http://www.people.com/article/Brittany-Maynard-death-with-dignity-com-
passion-choices

30. Slotnik, Daniel E. (November 3, 2014). “Brittany Maynard, ‘Death With Dignity’ Ally, Dies at 29”.
The New York Times.

31. https://www.compassionandchoices.org/2014/11/18/brittany-maynards-mother-responds-to-vatican-
other-critics-of-her-daughters-end-of-life-choice/

32. Quotations are from Phaedo, in E. Hamilton and H. Cairns, eds., Plato: The Collected Dialogues,
Princeton University Press, Princeton, NJ, 1961.

33. Epictetus, Dissertations, 1.9, p. 16. Quoted by James Rachels, “Euthanasia,” in T. Regan, ed., Matters
of Life and Death, 3rd ed., McGraw-Hill, New York, 1993, p. 35.

34. Seneca, De Ira, quoted by Rachels, “Euthanasia.”
35. Jean Paul Sartre, Existentialism Is a Humanism, Philosophical Library, New York, 1947.
36. Frederick Russell, The Just War in the Middle Ages, Cambridge University Press, Cambridge, England,

1975.
37. Quoted in James Gutman, “Death and Dying in Western Culture,” Encyclopedia of Bioethics 1, Free

Press, New York, 1978, p. 240.
38. Baruch Spinoza, Ethics, William White and Amelia Stirling, trans., Hafner, New York, 1949.

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54 Chapter 2 Requests to Die: Terminal and Nonterminal Patients

39. Quoted in Derek Humphrey and Ann Wickett, The Right to Die: Understanding Euthanasia, Harper
and Row, New York, 1986, pp. 8–9.

40. David Hume, “On Suicide” (1755), in Eugene Miller, ed., Collected Essays of David Hume, Liberty
Classics, Indianapolis, IN, 1986.

41. Ibid.
42. Immanuel Kant, “On Suicide” (1755–1780), Lectures on Ethics, L. Enfield, trans., Harper and Row,

New York, 1963, pp. 148–154.
43. Ibid.
44. Immanuel Kant, The Metaphysical Principles of Virtue, J. Ellington, trans., Bobbs-Merill, Indianapolis,

IN, 1959, p. 84.
45. John Stuart Mill, On Liberty (1859), Appleton-Century-Crofts, New York, 1974.
46. Quoted in Humphrey and Wickett, The Right to Die, p. 16.
47. Leo Alexander, “Medical Science under Dictatorship,” New England Journal of Medicine 42 (July 14,

1949), pp. 39–47.
48. Robert Jay Lifton, The Nazi Doctors, Basic Books, New York, 1986.
49. J. C. Wilke, Assisted Suicide and Euthanasia: Past and Present, Hayes Publications, Cincinnati, Ohio,

1998, p. 9. I am indebted to Stephen W. Poff, M.D., for this reference and for points made in this
paragraph.

50. Johannes J. M. van Delden et al., “The Remmelink Study: Two Years Later,” Hastings Center Report
23, no. 6 (November–December 1993), p. 24.

51. http://www.nytimes.com/1986/09/21/magazine/german-doctors-and-the-final-solution.html?
pagewanted=all

52. Tara Burghart, Associated Press, “1 in 18 Opt Out of Assisted Suicide,” August 18, 2005, Birmingham
News, p. A11.

53. Veronica English et al., “Ethics Briefings,” Journal of Medical Ethics, 32 (2006), pp. 371–372.
54. Isabel Wilkerson, “Physician Fulfills a Goal: Aiding a Person in Suicide,” New York Times, June 7,

1990.
55. Susan Okie, “Dr. Pou and the Hurricane: Implications for Patient Care during Disasters,” New

England Journal of Medicine 358, no. 1 (January 3, 2008), pp. 1–5.
56. Susan Okie, “Dr. Pou and the Hurricane,” p. 1.
57. Alto Charo, quoted by Susan Okie, “Dr. Pou and the Hurricane,” p. 4.
58. Sheri Fink, “Deadly Choices at Memorial,” New York Times Magazine, August 27, 2009. Copublished

with “ProPublica: Journalism in the Public Interest.” See also, Sheri Fink, Five Days at Memorial,
Crown, New York, 2013.

59. Susan Tolle, “Care of the Dying: Clinical and Financial Lessons from the Oregon Experience,” Annals
of Internal Medicine 128, no. 7 (April 1, 1998).

60. Ibid.
61. Ezekiel Emanuel and Margaret Battin, “What Are the Potential Cost-Savings of Legalizing Physi-

cian-Assisted Suicide?” New England Journal of Medicine 339 (1998), pp. 167–172.
62. Susan Tolle et al., “Oregon’s Low In-Hospital Death Rates: What Determines Where People Die and

Satisfaction with Decisions on Place of Death?” American College of Physicians- American Society
of Internal Medicine (1999), pp. 681–685.

63. J. Prokopetz and L. Lehmann, “Redefining the Physicians’ Role in Assisting Dying,” New England
Journal of Medicine 367, no. 2 (July 12, 2012), p. 98.

64. Seventh Annual Report on Oregon’s Death with Dignity Act, Office of Disease Prevention and Epide-
miology, Department of Human Services, State of Oregon, March 10, 2005, 800 N.E. Oregon Street,
Portland, OR 97232.

65. Dave Parks, “Study: Ill Oregonians Refuse Food to Die, Rejecting Suicide Law,” Birmingham News,
July 24, 2003, p. A12.

66. Judge Says 14th Amendment Guarantees Right to Die,” NBC News, May 17, 1994, https://archives
.nbclearn.com/portal/site/k-12/flatview?cuecard=3283

67. “Excerpts from Court’s Decision,” New York Times, June 27, 1997, p. A18.

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Chapter 2 Requests to Die: Terminal and Nonterminal Patients 55

68. Ludwig Edelstein, Ancient Medicine: Collected Essays of Ludwig Edelstein, O. Temkin and L. Temkin,
eds., Johns Hopkins University Press, Baltimore, MD, 1967.

69. G. E. R. Lloyd, Hippocratic Writings, J. Chadwick and W. N. Mann, trans., Penguin, New York, 1950,
p. 13.

70. Art Kleiner, “Life after Suicide,” High Wire, Summer 1982, p. 30.
71. Tad Friend, “Jumpers,” New Yorker, October 13, 2003.
72. H. Hendin, “Suicide in America,” Miami News, August 30, 1982, p. B1.
73. T. Woody, “Was His Act of Mercy Also Murder?” New York Times, November 7, 1988.
74. Quoted in Humphrey and Wickett, The Right to Die, p. 152.
75. Ibid., p. 155.
76. Ibid., p. 154.
77. Kevin D. O’Rourke, “Value Conflicts Raised by Physician-Assisted Suicide,” Linacre Quarterly 57, no.

3 (August 1990), pp. 38–49.
78. SUPPORT Principal Investigators, “A Controlled Trial to Improve Care of Seriously Ill Hospitalized

Patients. The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment
(SUPPORT), Journal of the American Medical Association 274 (1995), pp. 1591–1598.

79. Quoted in Barnard White Stack, “Doctors Divided Over the Very Ill,” Pittsburgh Post Gazette, June 11,
1990.

80. Margaret Battin, “The Least Worst Death,” Hastings Center Report 13, no. 2 (April 1983), pp. 13–16.
81. John Shuster, talk at UAB Medical School, August 14, 1995.
82. “Federal Judge Says Ban on Suicide Aid is Unconstitutional,“ The Economist, July 17, 2010, p. 65.
83. Timothy Egan, “Assisted Suicide Comes Full Circle” NY Times Oct. 26, 1997.
84. Nat Hentoff, “The Coat Hanger of Assisted Suicide,” Washington Post, December 12, 1997.
85. Paul Longmore, column in Electric Edge, January/February 1997.
86. Paul Longmore, “Elizabeth Bouvia, Assisted Suicide, and Social Prejudice,” in Issues in Law and

Medicine 2, no. 2 (Fall 1987), p. 158.
87. “Paul Longmore, Advocate for the and Disabled, Dies,” http://www.npr.org/sections/health-

shots/2010/08/11/129127432/paul-longmore-historian-and-advocate-for-disabled-dies
88. Fine, UAB Report, p. 12.
89. Ibid., p. 4.
90. Douglas Martin, “Disability Culture: Eager to Bite the Hands That Would Feed Them,” New York

Times, June 1, 1997, p. A1.
91. Tara Lagu et al., “The Axes of Access—Improving Care for Patients with Disabilities,” New England

Journal of Medicine 370, no. 19 (May 8, 2014), pp. 1847–1852; Melissa Marino, “Too Young to Be
Forgotten,” Monash University Magazine, June 2014, p. 1014.

92. Gina Kolata, “ ‘ Passive Euthanasia’ in Hospitals Is the Norm, Doctors Say,” New York Times, June
28, 1997, p. A1.

93. Christine Cassell, quoted in Michael Specter, “Suicide Device Fuels Debate,” Washington Post, June
8, 1990.

94. James Rachels, “Active and Passive Euthanasia,” New England Journal of Medicine 29 (January 9, 1975),
pp. 78–80.

95. Baruch Brody, “Ethical Questions Raised by the Persistent Vegetative Patient,” Hastings Center Report
18, no. 1, March 1988, p. 35.

96. Bonnie Steinbock, “The Intentional Termination of Life,” in B. Steinbock, ed., Killing and Letting Die,
Prentice-Hall, Englewood Cliffs, NJ, 1980.

97. Jean Davies, “Raping and Making Love Are Different Concepts: So Are Killing and Voluntary Eutha-
nasia,” Journal of Medical Ethics 14 (1988), pp. 148–149.

98. Quoted in Barnard White Stack, “Doctors Divided Over the Very Ill,” Pittsburgh Post Gazette, June
11, 1990.

99. Timothy Quill and Margaret Pabst Battin, “Excellent Palliative Care as the Standard, Physician –
Assisted Dying as a Last Resort,” in Timothy Quill and Margaret Pabst Battin, eds., Physician-Assisted

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56 Chapter 2 Requests to Die: Terminal and Nonterminal Patients

Dying: The Case for Palliative Care and Patient Choice, Johns Hopkins Press, Baltimore, MD,
pp. 323–330.

100. Quoted in Alan Parachini, “A Dutch Doctor Carries Out a Death Wish,” Los Angeles Times, July 5,
1987, sec. 6, p. 9.

101. Douglas Walton, Slippery Slope Arguments, Oxford University Press, New York, 1992.
102. Alexander, “Medical Science under Dictatorship,” p. 47.
103. Ibid., p. 44.
104. Michael Specter, “Suicide Device Fuels Debate,” Washington Post, June 8, 1990.
105. Quoted in Peter Steinfels, “Dutch Study Is Euthanasia Vote Issue,” New York Times, September 20,

1991.
106. Yale Kamisar, quoted by Earl Ubell, “Should Death Be a Patient’s Choice?” Parade Magazine, February 9,

1992, p. 27.
107. T. Curiel, “Murder or Mercy? Hurricane Katrina and the Need for Disaster Training,” New England

Journal of Medicine, 355, no. 20 (November 16, 2006), p. 2067.
108. Nat Hentoff, “The Deadly Slippery Slope,” Village Voice, September 1, 1987.
109. Christiaan Barnard, One Life, Macmillan, New York, 1965.
110. Joan Teno and Joanne Lynn, “Voluntary Active Euthanasia: The Individual Case and Public Policy,”

Journal of the American Geriatrics Society 39 (1991), pp. 827–830.
111. Quill and Battin, “Excellent Palliative Care,” p. 325.

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Built on previous cases of Nancy Cruzan and Karen Quinlan, the famous case
of Terri Schiavo exploded in 2005. All three cases involved incompetent adults and
whether their medical treatment could be stopped. The Quinlan case started in 1975
in New Jersey courts. Fifteen years later in 1990, the U.S. Supreme Court decided
the landmark case of Nancy Cruzan. The Schiavo case started then and lasted
another 15 years, until 2005.

THE QUINLAN CASE

In April 1975, just after turning 21, perky, independent Karen Quinlan became
comatose from drinking alcohol after taking either barbiturates or benzodiazepines,
or both. (How Karen became comatose is controversial. See references in endnote
for this claim.)1 Karen had also been dieting, and at hospital admission, she weighed
only 115 pounds.

Benzodiazepines—antianxiety drugs such as Valium, Librium, Ativan, and
Xanax—act on specific nerve receptors in the brain and are considered safer than
barbiturates. The latter have been around since 1912, when physicians first used
phenobarbital.

Both benzodiazepines and barbiturates intensify with alcohol, an effect called
synergism. Alcohol potentiates (intensifies) the effects of these drugs, and an empty
stomach also increases the effects. Actor River Phoenix unintentionally killed
himself in 1993 by mixing barbiturates, alcohol, and benzodiazepines.

Karen lost her brain from a synergistic reaction of barbiturates, benzodiazepines,
and alcohol taken on an empty stomach. These drugs suppressed her breathing,
caused loss of oxygen to her brain, and, after 30 minutes, destroyed her higher brain.

At St. Clare’s Hospital, a Catholic institution in New Jersey, a small ventilator,
also called a respirator, kept Karen breathing. It also prevented aspiration of vomit,
which could cause pneumonia.

Ventilators began to be used in medicine during the 1960s and by 1975 had
become common in cases of emergency and trauma. The ventilator’s use in this
case showed that the criteria of death needed clarification. Because the brain must

C H A P T E R 3

Comas: Karen Quinlan, Nancy
Cruzan, and Terri Schiavo

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58 Chapter 3 Comas: Karen Quinlan, Nancy Cruzan, and Terri Schiavo

have a fresh supply of oxygenated blood to function, lack of such oxygenated
blood (anoxia) quickly damages the brain and over time destroys it. The traditional
definition of death—where the body stops breathing and the person is declared
dead—indirectly assumed brain death to be inevitable, but now a ventilator pre-
vents this.

Karen’s appearance shocked her sister, who said:

Whenever I thought of a person in a coma, I thought they would just lie there very
quietly, almost as though they were sleeping. Karen’s head was moving around, as
if she was trying to pull away from that tube in her throat, and she made little
noises, like moans. I don’t know if she was in pain, but it seemed as though she
was. And I thought—if Karen could ever see herself like this, it would be the worst
thing in the world for her.2

Sometimes Karen would choke, sit bolt upright with her arms flung out and her
eyes wide open, appearing to be in intense pain. Eventually her breathing stabi-
lized, but even then she didn’t breathe deeply enough to sigh. Without such
breathing, the lower sacs of her lungs risked infection. Hence, she was put on a
larger ventilator for a “sigh volume.” This larger ventilator required a tracheotomy
(a hole cut surgically in the throat or trachea) to which her mother, Julia Quinlan,
reluctantly agreed.

This more powerful ventilator altered her appearance. At a later hearing in
September 1975, her lawyer testified about Karen:

Her eyes are open and move in a circular manner as she breathes; her eyes blink
approximately three or four times per minute; her forehead evidences every notice-
able perspiration; her mouth is open while the ventilator expands to ingest oxygen,
and while her mouth is open, her tongue appears to be moving in a rather random
manner; her mouth closes as the oxygen is ingested into her body through the
tracheotomy and she appears to be slightly convulsing or gasping as the oxygen
enters the windpipe; her hands are visible in an emaciated form, facing in a praying
position away from her body. Her present weight would seem to be in vicinity of
70–80 pounds.3

Karen Quinlan was in a coma, of course, but what does that mean? The word
“coma” is vague. Despite popular belief in 1975, under New Jersey law, Karen was
not brain-dead, which required all of her brain not to be functioning.

Karen Quinlan lay in a serious form of coma called persistent vegetative state
(PVS). PVS is a generic term covering a type of deep unconsciousness that, if it
persists for a few months, is usually irreversible. In this case, her eyes were discon-
jugate, that is, they moved in different, random directions at the same time. Despite
eye movements, she was also thought to be decorticate: Karen’s brain could not
receive input from her eyes. She had slow-wave—not isoelectric or “flat”—electroen-
cephalograms (EEGs).

At one time, a patient in such a condition would simply starve to death; but in
the late 1960s, crude intravenous and nasogastric feeding tubes began to be used.
Initially, an intravenous tube fed Karen, but as her condition persisted, the rigidity
of her muscles made it difficult to insert and reinsert such a tube into her veins.
Five months after her admission, in September 1975, she required a nasogastric
feeding tube.

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Chapter 3 Comas: Karen Quinlan, Nancy Cruzan, and Terri Schiavo 59

The Quinlans never allowed a realistic picture to be taken of Karen in PVS,
with a shaved head and on a ventilator and feeding tube.

In October 1975, deciding that Karen would never regain consciousness, the
Quinlans decided to remove the ventilator and let her body die. They had no idea
that their decision would be the easy part.

The Quinlans averred that Karen had twice said that if anything terrible
happened to her, she did not want to be kept alive as a vegetable on machines.
But was she really a “vegetable”? We now know that a rare patient may recover
from PVS.

The Quinlans asked the physicians of record, Robert Morse, a resident in inter-
nal medicine, and Arshad Javed, a fellow in pulmonary medicine, to disconnect
Karen’s ventilator. These physicians balked. Why?

First, in 1975, the American Medical Association (AMA) seemed to equate with-
drawing a ventilator for death to occur with euthanasia and then equated that with
murder. Back then, no federal or state court had clarified the rights of competent
dying patients, much less the rights of incompetent patients.

Second, the physicians feared that the Quinlans might later change their minds
and sue them for malpractice. One common definition of malpractice is “departure
from normal standards of medical practice in a community,” and in 1975—when
most physicians continued treatment until the last moments of life—assisting in the
deaths of comatose patients would have been such a departure.

At a legal hearing, Dr. Morse testified that no medical precedent allowed him
to disconnect Karen’s ventilator. Neurologist Julius Korein described Karen as
having no mental age at all and as being like “an anencephalic monster.”4 (Today,
this seems like a prejudicial way to describe Karen’s state.) Neurologist Fred Plum
described Karen as “lying in bed, emaciated, curled up in what is known as
flexion contracture. Every joint was bent in a flexion position and making one
tight sort of fetal position. It’s too grotesque, really, to describe in human terms
like fetal.”5

Because Karen had never written down her wishes in an advance directive, the
judge did not know what she would have wanted, so he decided that her ventilator
must continue. He ruled that her parents’ testimony about her wishes would not
be final, because it entailed her death. He also ruled that he could find no right to
die in the U.S. Constitution.

Several weeks later, the New Jersey State Supreme Court heard the case on
direct review. Physicians testifying there surprised these justices by distinguishing
between disconnecting a ventilator and not starting it. They argued that once they
accepted patients, they had an absolute duty to continue treatment indefinitely,
such that they could never cause death. But neurologist Julius Korein counter-testi-
fied that physicians privately used “judicious neglect” to let terminal patients die.

The justices pressed the hospital’s lawyers about the physician–patient rela-
tionship. Why couldn’t Morse and Javed allow Karen to be transferred to another
hospital, where other physicians could disconnect her? St. Clare’s lawyers hemmed
and hawed but finally said it would be immoral. The justices found this reasoning
“rather flimsy.”

In 1965, the U.S. Supreme Court cited a right to privacy in Griswold v. Con-
necticut, when it found state laws unconstitutional that banned physicians from

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60 Chapter 3 Comas: Karen Quinlan, Nancy Cruzan, and Terri Schiavo

giving contraceptives to married couples. Griswold found this kind of right in Okla-
homa v. Skinner in 1942, which noted a fundamental right to reproduction and
control of one’s body and thus blocked a law allowing involuntary sterilization of
habitual criminals. Griswold said that banning contraception violated a couple’s
fundamental liberty to lead its personal life as it saw fit, which the U.S. Constitution
assumed throughout.

In 1973, the U.S. Supreme Court strengthened the right to privacy in Roe v.
Wade (see Chapter 4), deciding that this same right included the right of a woman
to decide whether she would remain pregnant or abort her fetus.

In January 1976, the New Jersey Supreme Court ruled unanimously for the
Quinlans. The right to privacy allowed the family of a dying incompetent patient
to let her die by disconnecting her ventilator. The Supreme Court of the United
States had not yet made a comparable decision about the end of life, so the New
Jersey Supreme Court’s decision helped define a family’s right to let an incompetent
patient die based on the right to privacy (liberty).

The New Jersey court allowed Joseph Quinlan to become Karen’s guardian, gave
legal immunity to Morse and Javed for disconnecting Karen’s life support, and
suggested (though it did not require) ethics committees of laypeople in hospitals to
help in future cases.

Pulling the Plug or Weaning from a Ventilator?

In April 1976, four months after the higher-court decision, a ventilator helped Karen
Quinlan’s body breathe. By then, decubitus ulcers had eaten through her flesh,
exposing her hip bones.

But why was Karen still alive four months later? This is the least understood
and most controversial aspect of this case.

According to the Quinlans, Morse resisted implementing the decision of the
New Jersey Supreme Court, because “this is something I will have to live with for
the rest of my life.”6 The head nun at St. Clare’s lectured Mrs. Quinlan more bluntly,
“You have to understand our position, Mrs. Quinlan. In this hospital we don’t kill
people.”7 To this, Julia Quinlan replied, “Why didn’t you tell me ten months ago? I
would have taken Karen out of this hospital immediately.”

The nuns saw the Quinlan decision as another step down a slippery slope
that had started three years earlier with Roe v. Wade. During the trial, a Vatican
theologian criticized the Quinlans, “A right to death does not exist. Love for
life, even a life reduced to ruin, drives one to protect life with every possible
care.”8 A pulmonologist in Rome said removal of the ventilator “would be an
extremely dangerous move by her doctors, and represents an indirect form of
euthanasia.”9

Instead of simply disconnecting Karen’s ventilator, Morse and Javed weaned her
from it. “Weaned” means that, by building up different muscles, they gradually
trained her body to breathe without the ventilator. The tired, confused Quinlans
did not understand what this meant and its real implications would become pain-
fully clear over the next 10 years. Eventually, Javed had Karen off the ventilator for
4 hours and then, after intensive work over many weeks, for 12 hours. By late May
1976, Karen was off the ventilator altogether.

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Chapter 3 Comas: Karen Quinlan, Nancy Cruzan, and Terri Schiavo 61

This weaning confused the public: Some people took it to mean that Karen had
gotten better. Others thought that Karen’s physicians had “pulled the plug,” but a
miracle had prevented her death. Both impressions were false.

St. Clare’s Hospital now wanted Karen transferred, and in June 1976, New
Jersey’s Medicaid office forced a nursing home to accept her. At this point, Karen
had been in PVS for 14 months.

After more than 10 years in the nursing home, Karen Quinlan’s body expired
in June 1986. For several months before that, Karen had had pneumonia and the
Quinlans at the time declined antibiotics to reverse it.

Substituted Judgment and Kinds of Cases

The Quinlan decision used the standard of substituted judgment according to which
relatives or friends could say what they believed to be the wishes of the incompetent
patient.

But this standard has two major problems. First, substituted judgment is noto-
riously subjective.10 It presumes that decisions made by a patient’s family will reflect
what the patient him- or herself would have wanted. In the Quinlan case, like the
later Cruzan and Schiavo cases, no one know whether these women had really
expressed a wish not to have their lives prolonged or whether the families just
wished it so.

Second, how did a family’s right to exercise substituted judgment derive from
Griswold? Critics felt that the New Jersey Court had jumped too quickly from married
people’s right to control their own reproduction to some parents’ right to decide that
an adult, comatose incompetent child wanted to die—especially because few interven-
ing decisions had been made about whether competent, terminal adults could refuse
medical treatment. Given that quick, big jump, critics wondered what was next. Giv-
ing parents the right to make life-or-death decisions for never-competent patients?
For brain-damaged babies?

Quinlan also ran two different kinds of cases together.11 As noted, the Court based
its decision partly on the right to privacy, a right that in medical contexts would pre-
sumably apply only to competent patients. In brief, the right to privacy most obviously
applies to competent patients and their rights to determine their own medical destinies.
Ideally, the U.S. Supreme Court would have first laid out these rights and then tackled
incompetent patients. But life is messy and it didn’t happen that way, so the Quinlan
decision tackled incompetent patients first. It took 15 more years before things were
straightened out, when the U.S. Supreme Court finally brought closure in Cruzan.

THE CRUZAN CASE

The Cruzan case led to a landmark decision by the U.S. Supreme Court in June
1990.12 Before this decision, 20 states had recognized the right of competent patients
to refuse medical life support, and all these states (with the exception of New York
and Missouri) had recognized the right of surrogates to make decisions for incom-
petent patients.13 Although other decisions by lower courts had come to similar
conclusions, this was the first U.S. Supreme Court declaration that a competent

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62 Chapter 3 Comas: Karen Quinlan, Nancy Cruzan, and Terri Schiavo

patient could decline all medical treatment to die as his or her definitive constitu-
tional right.

On January 11, 1983, 24-year-old Nancy Cruzan lost control of her car at night
on a lonely, icy country road in Missouri.14 Thrown 35 feet from the car, she landed
face down in a water-filled ditch. Paramedics found that her heart had stopped.
Injecting a stimulant into her heart, they restarted it, but because her brain had
been anoxic for 15 minutes, Nancy did not regain consciousness.15

Over seven years, Nancy’s body became rigid, her hands curled tightly, and her
fingernails became clawlike. Like Karen Quinlan, Nancy could take nothing by
mouth and somebody turned her every two hours to prevent ulcers. She drooled
much of the time, wetting her hair, pillow, and sheets. Her care cost the state of
Missouri $130,000 a year.

Where the Quinlan case focused on withdrawal of a ventilator, the Cruzan case,
like the Schiavo case 15 years later, focused on withdrawal of a feeding tube. Because
she could not swallow, Nancy could not be fed by mouth. Loss of ability to swallow
signals a key decision in the care of incapacitated patients, especially those with
dementia or neurological damage. As mentioned, before feeding tubes began to be
used in the 1960s, such patients naturally died by starvation.

Artificial feeding can be done in three basic ways: (1) by a temporary nasoga-
stric tube run up the nostrils and down into the gastrointestinal tract; (2) by a
permanent intravenous feeding line, surgically attached to one of the major veins
of the chest; and (3) by a surgically implanted gastrostomy (PEG) tube. All feeding
tubes carry the risk of infection; with permanent tubes, the large volume of fluids
over time may cause other problems.

Morally, the question arose in the Cruzan case of whether a PVS patient is
owed food and water forever. Karen Quinlan’s parents thought so; they never
withdrew the nutrition that kept her body alive. Nancy’s parents, Joe and Joyce
Cruzan, thought otherwise: They sought permission in court to disconnect her
feeding tube.

In discussing the Cruzan case, it is necessary to understand different standards
of legal evidence. The minimum standard is preponderance of evidence; a more rig-
orous standard is clear and convincing evidence; the most rigorous standard—the stan-
dard used for serious felonies—is beyond a reasonable doubt.

Preponderance of evidence simply means that there is more evidence one way
than another; in some cases, this simply means there is a bit of evidence rather
than none. Clear and convincing denotes something more rigorous and, with dying,
requires an advance directive (living will) or durable power of attorney. Finally,
beyond a reasonable doubt requires the most evidence and is used in trials of homicide
to establish guilt and where the accused is presumed innocent.

The Cruzans won their case in lower (probate) court, but upon direct review,
the Missouri Supreme Court reversed, and its reversal had to do with the standard
of clear and convincing evidence. Because Nancy had no advance directive and
because only her parents and a sister testified about her alleged wishes, the Cruzans
did not provide “clear and convincing” evidence about Nancy’s wishes.

Missouri felt it had a duty to protect an incompetent adult child against par-
ents who might be merely seeking financial and emotional closure. The Missouri
Supreme Court agreed and concluded that the state had an interest in preserving

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Chapter 3 Comas: Karen Quinlan, Nancy Cruzan, and Terri Schiavo 63

life, regardless of quality of life, and no matter how strongly the family felt oth-
erwise, that before medical support could be withdrawn from an incompetent
patient, the family had to meet the higher standard of clear and convincing
evidence.

Now for the Cruzan decision by the U.S. Supreme Court, which declared three
things. First, it recognized a right of competent patients to decline medical treatment,
even if such refusal led directly to their death.

Second, the Supreme Court found that withdrawing a feeding tube did not
differ from withdrawing any other kind of life-sustaining medical support. Some
state laws, which permitted forgoing or withdrawing ventilators but not artificial
nutrition, were hence unconstitutional.

Third, with regard to incompetent patients, the Supreme Court held in Cruzan
that a state could, but need not, pass a statute requiring the clear and convincing
standard of evidence about what a formerly competent patient would have wanted
done. Because Missouri had such a standard, its law was constitutional. Because the
Cruzan family had not met that standard, Nancy’s feeding tube could not be removed.

Cruzan said nothing about never-competent patients, such as people with pro-
found mental retardation. Because of past abuses, it is reasonable to expect that in
these cases, the Supreme Court could require the standard of beyond a reasonable
doubt.

Legal commentators mocked the previous legal standard of substituted judgment
“[leading] us to pretend that we are merely complying (however reluctantly) with
the wishes of the patient. . . . Almost any evidence is deemed sufficient to establish
a preference for death over PVS and/or families are empowered to express patient
preferences for death-with few questions asked.”16

The case of Nancy Cruzan illustrates this problem. Nancy’s father, Joe, said that
because Nancy was strong-willed and a fighter, she wouldn’t want to exist in PVS.
But others might infer a different conclusion that as a fighter, she might have fought
for any chance to return to normalcy.

Consider another standard used in such cases, the best interests of the patient.
So in the Cruzan case, would the best interests of Nancy be to live on in such a
state? Some people would say no, although this judgment is not open-and-shut,
especially as Missouri argued that Nancy’s best interests entailed continued feeding,
as activists argued in the later Schiavo case.

A different kind of reaction came from physicians who worked with families of
vegetative patients. The late neurologist/bioethicist Ronald Cranford of Minnesota,
who would later testify in the Schiavo case, predicted that “many families will expe-
rience the utter helplessness of the Cruzans.” Allowing the standard of clear-and-con-
vincing evidence placed “an enormous burden on society, which will spend hundreds
of millions of dollars each year for a condition that no one in their right mind would
ever want to be in.”17

Hospice physician Joanne Lynn lamented that in Missouri and New York, “the
suffering of the patient and family, the costs, the kind of life that can be gained,
are all to count for nothing. If life can be prolonged, then it will have to be.”18

Divorced just before her accident, some of Nancy’s old friends knew her only
by her married name, Davis. When her case first became known, they had not
realized who she was. After great publicity, the case was reheard in a lower court

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64 Chapter 3 Comas: Karen Quinlan, Nancy Cruzan, and Terri Schiavo

and Nancy’s old friends testified. The court then decided that Nancy Cruzan’s par-
ents had now met the clear-and-convincing standard.19 So five months after the
Supreme Court decided Cruzan, on December 14, 1990, physicians legally removed
Nancy Cruzan’s feeding tube, and her body died.

THE TERRI SCHIAVO CASE

While the U.S. Supreme Court justices deliberated Cruzan, another coma case began
on February 25, 1990. Terri Schiavo, a 27-year-old woman, went into a coma possi-
bly because of anoxia, a lack of oxygen to her brain, perhaps from a heart arrhyth-
mia caused by extreme hypoalkemia (an imbalance of potassium in her body),
causing severe hypoxic ischemic encephalopathy (brain damage).20

Before her heart attack, Terri Schiavo seemed anorexic. People with anorexia
may suffer from an imbalance of potassium. According to documents filed in a
malpractice suit by her family, a three-stage imbalance of potassium led to Terri’s
heart attack, which led to anoxia and subsequent brain damage.

To keep her alive, physicians inserted a percutaneous endoscopic gastronomy
(PEG) feeding tube. When a patient lacks the reflex to swallow, surgeons place PEG
tubes through the abdominal wall into the stomach, through which flows a nutri-
tious, slushy mixture. Doctors sometimes insert PEG tubes after an emergency to
buy time, assuming they may be temporary.

Yet once attached, feeding tubes can be difficult for families to remove. Years
later, removal of her feeding tube became the legal focus of Terri’s case.

In April 1990, husband Michael Schiavo transferred Terri from the hospital to a
rehabilitation center. In May, and with no objection from her parents, Robert and Mary
Schindler, Michael became Terri’s legal guardian. Later, her parents took her to their
home for care but, overwhelmed by the task, they returned her to the center. Michael
also flew Terri once to California for a two-month experiment with a “thalamic stim-
ulator implant” in her brain. After that experiment failed, Terri returned to the Medi-
plex Rehabilitation Center in Brandon, Florida, and for months 13–18 into her coma,
three shifts of workers worked 24 hours a day, trying to rehabilitate her.

In July 1991, Terri went to Sable Palms, a skilled care facility, where neurologists
continued to test her and where speech, occupational, and physical therapists
worked on her for three more years, until 1994. At this point, Terri had received
nearly five years of intensive efforts to return her to consciousness.

Michael Schiavo and Terri’s parents stopped living together in May 1992. That
August, Michael received a settlement from the malpractice case against Terri’s
obstetrician for failing to diagnose a potassium imbalance. He got $750,000 from
the hospital for a trust fund specifically set up for Terri’s care and $300,000 for loss
of her companionship.

The three adults allegedly then fought over money. The Schindlers believed they
were entitled to part of the $300,000 for loss of spousal companionship, but Michael
disagreed. After this dispute, their relationship soured.

Based on what several physicians told Michael, at this point Terri had no chance
of meaningful recovery. Michael agreed to a “Do Not Resuscitate” order for Terri,
but her parents violently disagreed and he later rescinded the order.

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Chapter 3 Comas: Karen Quinlan, Nancy Cruzan, and Terri Schiavo 65

The Schindlers then tried to remove Michael as Terri’s guardian, but a court –
appointed special guardian investigated and determined that Michael had acted
appropriately toward Terri, which the court accepted.

Three years passed, during which Terri’s condition did not improve. During this
time and in order to help care for Terri, Michael became certified as a licensed
respiratory therapist.21

In May 1998, eight years after Terri’s heart attack, Michael asked a court to
allow removal of the PEG tube so that Terri could die. Michael testified that, while
watching television many years before, Terri had once remarked that she wouldn’t
want to live in a vegetative state. The Schindlers retorted that their daughter wanted
to live.

Nearly two years after Michael Schiavo’s request to have Terri’s feeding tube
removed, Judge George Greer in 2000 approved the request. He ruled that clear
and convincing evidence existed that Terri would not have chosen to live under
such circumstances. Legally, this ruling seemed wanting, because Terri’s parents
disputed the claim and because Terri had no advance directive.

The Schindlers appealed, which took a year, but they lost. They appealed again,
this time to the Florida Supreme Court, which in 2001 denied their appeal.

Over the next few years, the Schindlers began to allege that Michael caused
Terri’s condition, perhaps because of domestic abuse. An autopsy after her death
proved that no such abuse occurred. Moreover, if Terri had arrived at an emergency
room with this kind of trauma, Michael would have been reported—as required by
law—to authorities for domestic violence, battery, or possible manslaughter. More-
over, if such evidence had existed, the hospital and its physicians would not have
settled a malpractice case nor allowed Michael to become Terri’s guardian.

The Schindlers testified that, even if Terri had asked them to do so, they would
not remove Terri’s feeding tube under any circumstances. They said that even if she
developed gangrene and all her limbs had to be amputated, they would still keep
her alive.22

A year later, in the fall of 2003, having exhausted all appeals in Florida, the
Schindlers appealed in federal court to prevent removal of Terri’s feeding tube. The
Schindlers also appealed to the public through the media, and several physicians
publicly joined their side, including a pathologist and a physician who hoped to try
exotic “coma stimulation” therapies.

Enter Lawyers and Politicians

Governor Jeb Bush, a Catholic, filed a brief on the side of the Schindlers; he praised
the parents in the media for defending their daughter’s right to life. President
George W. Bush praised his brother’s stand. The Advocacy Center for Persons with
Disabilities filed a lawsuit claiming that removal of Terri’s feeding tube would abuse
a person with disabilities. The antiabortion group, Life Legal Defense Fund, helped
the Schindlers hire lawyers, eventually paying bills of $300,000.

Three neurologists, including neurologist Ronald Cranford, testified that Terri
was in PVS (Cranford substituted “permanent” for “persistent” to emphasize the
irreversibility of her condition). The Schindlers cited Terri’s ability to swallow saliva

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66 Chapter 3 Comas: Karen Quinlan, Nancy Cruzan, and Terri Schiavo

as evidence that she was not in PVS; Cranford testified that primitive functions in
her brain stem controlled such swallowing.

Physicians William Mayfield and William Hammesfahr, champions of hyper-
baric oxygenation therapy (HBOT), claimed HBOT would benefit Terri.23 Neurolo-
gist Ronald Cranford retorted, “Increase the blood flood to dead tissue, and what
do you get? Dead tissue.”24 Others found Hammesfahr unprofessional and noted
that he required advance cash for his treatments and never documented successes.

These physicians disagreed about what Terri’s movements meant. Ability to
respond to a squeeze or pinch is consistent with PVS. In the Cruzan case, when
neurologist Cranford examined Nancy, her lawyer William Colby described what
happened:

Cranford next grabbed hold of Nancy’s stiff right leg and tried to bend it straight.
Nancy grimaced. Then he reached for the soft skin on the inside of the upper part
of her right arm, and held the pinch. Slowly, as if she were a robot, Nancy’s head
lifted off the bed and turned. Her face locked on her father’s for about ten seconds,
before she lowered just as slowly to the pillow.25

Despite being there and witnessing this phenomenon in this case, Dr. Cranford
insisted that Nancy Cruzan’s biography was over, that no one was conscious within
the reflexes of her body, and that further treatment was futile.

In the fall of 2003, the Florida legislature passed a special bill, Terri’s Law, which
allowed Governor Jeb Bush to issue a one-time stay of a judge’s order to remove a
feeding tube in certain cases where a patient is in PVS. After its passage, Governor
Bush immediately issued the stay.

Michael and the American Civil Liberties Union appealed in state court and
won, but Governor Bush appealed to a mid-level appellate court, lost, and appealed
again to the Florida Supreme Court.

On September 23, 2004, Florida’s Supreme Court ruled 7–0 that Terri’s Law
was unconstitutional. It based its decision upon two constitutional canons: the sep-
aration of powers and the unlawful delegation of authority. “It is without question
an invasion of the authority of the judicial branch for the Legislature to pass a law
that allows the executive branch to interfere with the final judicial determination
in a case,” wrote Chief Justice Barbara Pariente.26

About two months later, the top U.S. Court let stand without comment the
decision by the Florida Supreme Court against Terri’s Law.27 Activists predicted
Terri’s imminent “brutal murder” and claimed that she was a “purposefully inter-
active, alert, curious, lovely young woman who lives with a very serious disability.”28

Much of these claims came from an edited video, clips of which cable television
often showed (because such stories need visual background). These pro-Schindler
clips can be easily seen on YouTube or by searching for videos on Terri Schiavo.

At the end of February 2005, 15 years after the case began, the Schindlers filed
a variety of desperate motions in Judge Greer’s court, but he still ordered the feed-
ing tube removed. The Schindlers appealed, but a Florida appellate court rebuffed
them.

Extraordinary events ensued, of a kind never before seen in the history of
modern bioethics. As the Schindlers lost in court, they became desperate; they
turned to the media, encouraging their son and daughter to appear on television.

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Chapter 3 Comas: Karen Quinlan, Nancy Cruzan, and Terri Schiavo 67

Catholic priests dressed in robes of monastic orders appeared with them. People
flooded Florida legislators with emails and calls.

Activists and the Schindlers then turned to the U.S. Congress. First, House
leaders tried to compel Terri to appear before a House committee as a witness and
fall under protection of the federal program that protects witnesses. Judge Greer
ignored this subpoena.

Senator Bill Frist, a physician who planned to run for president in 2008, wanted
to align himself with the culture-of-life constituency that had helped George
W. Bush narrowly win. So Frist worked to get Congress to pass a federal version of
Terri’s Law, having President Bush fly back during a congressional recess to sign a
bill passed at midnight.29

Some critics said that Senator Frist crossed a dangerous line and committed
virtual malpractice by declaring—merely by watching the edited video clip and never
actually visiting or examining Terri—that Terri “did not seem to be” in a persistent
vegetative state. As one critic fumed, “It’s quackery. It’d be hilarious if it weren’t so
grotesque, how his presidential ambition and pandering to the right wing is clash-
ing with his life’s work.”30 Congressman Dave Weldon, a physician and also a pro-
life Republican, agreed with Frist. These high-ranking politician-physicians publicly
contradicted the fellow physicians who had actually examined Terri and whose area
of expertise covered PVS and comas.

Congressmen Frist and Weldon had one problem here: The federal government
cannot order a physician to insert a feeding tube. The only thing it could do is order
a federal judge to review the case again, which it did. Judge James Whittemore
reviewed the whole case over two days and concluded, like two dozen appellate
judges before him, that nothing was amiss, that Terri had no chance of recovery,
that Michael was properly motivated, and that previous courts had made no errors.
An appeal to the U.S. Court of Appeals for the 11th Circuit in Atlanta, a conserva-
tive group, produced the same conclusions.

During March 2005, media exposure escalated, producing what Newsweek later
called “a public spectacle airing nonstop on cable and playing on front pages around
the world.”31 Terri’s supporters traveled to Pinellas Park, Florida, to hold prayer
vigils, while others threatened to kill Michael and his lawyer, George Felos. Various
members and friends of both sides went on cable television shows and endlessly
discussed the family’s problems.

A juggernaut for Terri ensued: Soon four Schindlers, plus recovered coma
patients, shady physicians, activist monks, Patrick Mahoney, director of the Chris-
tian Defense Coalition, and antiabortion activist Randall Terry campaigned on tele-
vision, radio, and the Internet against Michael Schiavo, who was media shy and
had only his brother, Scott, and lawyer, George Felos, to help him.

Barbara Weller, an attorney working for the Schindlers, went from lawyer to
witness, swearing that she had personally seen Terri trying to talk. Protestors called
Judge Greer a “judicial murderer” and Republicans blasted the “imperial judiciary.”
The Reverend James Kennedy urged Governor Jeb Bush to ignore the federal judges
the way Alabama’s Governor George Wallace did in defying federal orders to inte-
grate the University of Alabama.32 The FBI arrested a man offering $250,000 to kill
Michael Schiavo and $50,000 to do the same to Judge Greer. Police arrested two
others trying to break into the hospice.

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68 Chapter 3 Comas: Karen Quinlan, Nancy Cruzan, and Terri Schiavo

Terri was said to be “suffering terribly” by starving, even though physicians in
palliative care repeatedly denied that when feeding tubes are removed, terminal
patients suffer and that in this case, any person still existed to suffer.33

The case showed the limitations of television and the Internet because what
made great visuals (people praying and screaming outside Terri’s hospice), great
drama (the Schindlers crying on television), and great tension (various people claim-
ing that Michael was evil) distorted the facts. What had been a private family
dispute became a take-no-prisoners war on national television.

On March 18, the last appeal failed to the U.S. Supreme Court (which had
already twice refused to the review) and physicians removed Terri’s feeding tube.
Palliative care physicians predicted it would take two weeks for the body to die and
emphasized that it would not be painful. Opponents outside decried “murder by
starvation.” After 13 days, while protestors prayed and rallied outside, Terri’s body
expired on March 31, 2005.

What Schiavo’s Autopsy Showed

Chief Medical Examiner for Pinellas County, Florida, Jon Thogmartin, M.D., released
Terri’s autopsy on June 13, 2005. It answered some questions and left others as
mysteries.

The big surprise of the autopsy was that “Mrs. Schiavo’s heart was anatomically
normal without any areas of recent or remote myocardial infarction. Her heart
(including the cardiac valves, conduction system and myocardium) was essentially
unremarkable. . . .” That was a surprise because, although people debated the cause
of her heart attack, few doubted that she had had one.

We will never know exactly what happened to Terri’s heart. Two crucial pieces
of evidence are that she may have consumed as much as one gram of caffeine a
day and that she had hypoalkemia. Perhaps this combination, after the extreme
weight loss, stressed her heart too much.

On the night of her original collapse, no other drugs were found in her system.
Another surprise was that the autopsy showed no clinical evidence of bulimia,

especially the kind of wear on the enamel of the back teeth that is often caused by
this condition. Despite the fact that the malpractice suit was settled on the assertion
that Terri had an undiagnosed eating disorder, the coroner’s report showed no
physical evidence of it.

However, it still was true that 15 years before, she had seemed anorexic. Cer-
tainly her low potassium level, the fact that her weight dropped more than 100
pounds in a few months, combined with her drinking gallons of iced tea, give
evidence to this hypothesis.

The autopsy by coroner Thogmartin also implied that Terri Schiavo was not in
(what later would be called) “a minimally conscious state.” It said that she had
massive brain damage. “Mrs. Schiavo’s brain showed global anoxic-ischemic enceph-
alopathy resulting in massive cerebral atrophy. Her brain weight was approximately
half of the expected weight. Of particular importance was the hypoxic damage and
neuronal loss in her occipital lobes, which indicates cortical blindness. Her remain-
ing brain regions show severe hypoxic injury and neuronal atrophy/loss. No areas
of recent or remote traumatic injury were found.”34

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Finally, without the PEG feeding tube, she would have died. “Oral feedings in
quantities sufficient to sustain life would have certainly resulted in aspiration,” accord-
ing to the coroner Thogmartin. Aspiration of food in such patients is a serious, even
lethal, complication, causing infection, choking, and possible suffocation.

ETHICAL ISSUES

Standards of Brain Death

People have always feared being declared dead prematurely and buried alive. In the
eighteenth century, gruesome stories circulated about exhumations discovering
scratches on the inside lids of coffins. In the nineteenth century, some legislatures
required delays before burial, and in 1882, an undertaker named Kirchbaum
attached periscopes to coffins and put cowbells inside, so people waking up inside
could signal for help.35

This whole-body standard became inappropriate when ventilators allowed respi-
ration of brain-damaged patients. Before them, heart-lung machines could maintain
immobilized patients. In 1967, when Christiaan Barnard transplanted Denise Dar-
vall’s heart into a dying patient named Louis Washkansky (discussed in Chapter 10),
the question arose whether Denise Darvall had really been dead before Barnard
removed her heart. Because Barnard needed a healthy heart for transplantation,
Denise obviously hadn’t been declared dead by the whole-body standard. So medi-
cine needed a new standard of death, specifically of brain death, to determine when
organs could be removed.

Shortly after that event, an ad hoc committee at Harvard Medical School devel-
oped the Harvard criteria of brain death.36 The Harvard criteria operationally defined
brain death as behavior that indicated unawareness of external stimuli, lack of bodily
movements, no spontaneous breathing, lack of reflexes, and two isoelectric (nearly
flat) electroencephalogram (EEG) readings 24 hours apart. These criteria required loss
of virtually all brain activities (including the brain stem and hence breathing).

The Harvard criteria personify caution: No one declared dead by them has ever
regained consciousness. (One could say, “If you’re Harvard dead, you’re really
dead.”) Its extreme conservatism disappoints people waiting for organ transplants:
during the past half-century, it has covered relatively few patients.

Another standard of brain death is the cognitive criterion. This criterion identi-
fies a philosophical core of properties of persons and assumes that without such a
core, a human body is no longer a person; the core properties commonly include
reason, memory, agency, and self-awareness. For example, neurological disorders
such as Alzheimer’s or Lewy body dementia destroy brain cells at a high rate so
that over a decade, none of the higher person remains.

The cognitive criterion has the greatest potential to generate organs for trans-
plantation. So far, however, it has been too controversial and too vague to be
adopted by any state, although countless families use it to cease treatment to speed
a body’s death.37

A third standard of brain death is irreversibility, and it falls between the Harvard
and cognitive criteria. According to it, death occurs simply when unconsciousness is
irreversible. Operationally, this judgment would be made by a neurologist and another

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physician. The irreversibility standard would allow PVS patients to be declared dead
after several years (perhaps, in some cases of anoxia, after several months).

In popular culture, some people believe that a metaphysical event with physical
manifestations marks death, perhaps the counterpart of a similar event at the begin-
ning of life. Some people would describe this event as the entrance and departure
of a soul. But the occurrence of such metaphysical events seems to have no physical
manifestations, and as such, cannot be proven.

So in medical reality, the definition of death is often not so much a discovery
as a decision that families and physicians make—not an event—but a process.38 Unfor-
tunately, many families lack preparation to make such decisions and find it easier
to believe that physicians “discover” that a patient has died.

The phrase “brain death” is misleading. Newspapers commonly refer to some-
one as being “brain-dead” for months until “life-support” is removed, after which
the patient “expires.” Bioethicist Lance Stell argues that such terms incorrectly
imply that a patient could be dead in two different ways, such that there are degrees
of being dead and that someone might die more than once. For Stell, it’s better to
write about “death by neurological criteria.” A being that meets these criteria, he
says, “is not a patient but a cadaver.”39

Proposals to redefine brain death create controversy. On the one hand, reform-
ers want to end public uncertainty over brain death, expand the number of organs
available for transplantation, save the medical system money by not maintaining
comatose patients, and help families move on after the death by having a universally
accepted practical definition. On the other hand, advocates for vulnerable patients
want to give them every chance of recovery.

For example, in 2013, after a tonsillectomy had gone wrong, a 13-year-old
African-American from Oakland, California, Jahi McMath, choked on blood and
was declared dead by neurological criteria. Her parents refused to accept the dec-
laration and moved her ventilator-dependent body to New Jersey, which is the only
state requiring hospitals to maintain breathing, brain dead patients when their fam-
ily’s religious beliefs opposed the declaration. There, her body could live for decades.

Chances of Regaining Consciousness from Coma and PVS

The question of whether the movements of PVS patients are intentional behavior
or merely reflexes raises philosophical as well as medical issues. Intentional behavior
indicates an organism seeking a goal, such as freedom from pain, and might indi-
cate awareness. As the seventeenth-century philosopher René Descartes noted, we
infer consciousness in others from outward behavior. We cannot directly observe it.

Permanent lack of consciousness is also an inference. So are shrimp conscious?
Probably not, which we infer from their behavior and anatomy.

Consider four surprising cases of long-term unconsciousness. First, after an
automobile wreck in Arkansas, Terry Wallis emerged from a coma after 19 years,
regained awareness, and lives today. Neurologist Joseph Fins believes that doctors
misdiagnosed Wallis, who really was in minimally conscious state (MCS).40 Second,
in 1996, police officer Gary Dockery of Tennessee emerged out of his coma of
eight years to talk for a few hours to his family, after which he returned to a coma-
tose state and died a year later in April.41 Third, Patricia White Bull became coma-

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Chapter 3 Comas: Karen Quinlan, Nancy Cruzan, and Terri Schiavo 71

tose while giving birth to her fourth child and could not speak, swallow, or move
much, but suddenly awoke 16 years later to full consciousness on Christmas Eve,
1999. Fourth, after a car accident, Sarah Scantlin of Kansas went into a coma and
emerged 19 years later.42 Comas in all four cases were caused by trauma, not anoxia.

Ethically, the fact that anyone at all comes out of a long-term coma is crucial
because it changes the prognosis from certainty to probability. Families who want
emotional closure prefer to hear physicians say that the patient has “no” chance of
recovery. The emotional weight changes when a patient has a “tiny” chance.

A review of these cases reveals an interesting conceptual disagreement among
neurologists. Some claim that any patient who emerges from PVS was not really in
PVS. But this is a non-falsifiable, circular argument: If you awaken, you weren’t in
PVS. If you never awaken, you were in PVS.

In 1994, in a then-definitive study in the New England Journal of Medicine by the
Multi-Task Force on PVS, 7 of 434 adults with traumatic head injuries who were in
PVS for more than a year made good recoveries and regained consciousness, some
with normal quality of life.43 Should traumatic PVS befall some people, they might
want this 7/434th chance of recovery. Several other studies have shown that,
although few patients ever emerge from PVS, some people do within the first year,
and once in a thousand times after three years.44 Again, all these patients suffered
traumatic injuries, not anoxia.

In a 1995 study of 19 patients with severe head injuries and persisting post –
traumatic unawareness, 58 percent (11 patients) recovered within the first year and
5 percent (1 patient) within the second.45 In a 1996 study of 34 patients with anoxic
coma, 2 patients with “malignant EEGs” (the worst classification, where patients
were expected to die based on lack of brain wave activity) eventually made a “good
recovery.”46

Some patients emerge, especially in the first few months, after coma caused by
trauma, but rarely in coma caused by anoxia. “It’s the difference between taking a
blow to the brain, which affects a local area—and taking this global, whole-brain
hit,” asserted New York bioethicist Joseph Fins in explaining the difference.47

In 2005, some neurologists, including Fins, after working with brain-damaged
patients at several facilities around New York City, advocated for a new category of
MCS, which is a state above PVS and with some chances for recovery utilizing
deep-brain stimulation. MCS is a category between the previous ways of classifying
coma patients as either comatose or vegetative.48

Alan Shewmon, a famous pediatric neurologist, called the new category “an
inaccurate name for an invalid concept.” Shewmon argues that there is no scientific
way to distinguish between minimal consciousness and full consciousness, implying
that consciousness is something one either has or does not have, like saying you
can’t be a little bit pregnant.

But why can’t a lightbulb be, not on or off, but bright or dim? Why can’t con-
sciousness be a gradient? Terri’s defenders retort that people are minimally con-
scious all the time—in sleep or after injury—and what is important is the potential
for recovery of consciousness. If it’s impossible to prove any difference between
minimal consciousness and consciousness, it also must be impossible to disprove a
difference. So if Terri was in MCS, she might at times feel something. After all,
brains do not get injured in neat taxonomic lines.

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72 Chapter 3 Comas: Karen Quinlan, Nancy Cruzan, and Terri Schiavo

By 2007, neurologists such as Fins focused not on ability to recover from
anoxia-caused PVS as on patients classified as in PVS but misdiagnosed. In a 1996
study in England, one researcher estimated that 17 of 40 patients in PVS had been
so misdiagnosed. Another study in 2010 claimed that 40 percent of disorders of
consciousness are misdiagnosed.49 Could Terri Schiavo have been misdiagnosed?

An important study in 2007 by Adrian Owen noted that,

The assessment of patients with disorders of consciousness, including the vegeta-
tive state, is difficult and frequently depends on subjective interpretations of the
observed spontaneous and volitional behavior. . . . However, it is becoming
increasingly apparent that in some patients damage to the peripheral motor sys-
tem may prevent overt responses to command although the cognitive ability to
perceive and understand such commands may remain intact. Recent advances in
functional neuroimaging suggest a novel solution to this problem: in several cases,
so-called activation studies have been used to identify residual cognitive function
and conscious awareness in patients who are assumed to be in a vegetative state
yet retain cognitive abilities that have evaded detection using standard clinical
methods.50

In this study, researchers asked a PVS patient to imagine playing tennis and walk-
ing. Every time they asked her about playing tennis, her brain lit up, whereas it did
not when they asked her about walking.

The latest claims focus on MCS, fMRI scans, and deep-brain stimulation of
supposed PVS patients. Through an intense program with probes that stimulated
the thalamus, a deep part of the brain, they enabled one or two patients to return
to MCS. Using fMRI scans of blood flow to the brain, physicians have identified
dozens of patients with this potential and improved one or two remarkably.51 Yama-
moto treated 21 of 103 vegetative patients with deep-brain stimulation and 8 of the
21 recovered enough to understand verbal commands.52

In 2009, Belgian researcher Steven Laureys awoke Rom Houben, who for 23
years had been conscious, unable to move, and falsely diagnosed in PVS. “Once
someone is labeled as being without consciousness, it is very hard to get rid of
that,” Laureys said.53 Someone later claimed Houben was writing a book about his
23 years, but that turned out to be hoax.54

In conclusion, patients who are stimulated during the first six months after
injury and who became comatose through trauma rather than anoxia or global isch-
emia are most likely to recover. Also, the potential for recovery diminishes as the
years increase, but—as the cases show at the beginning of this section—is rarely zero.

Terri’s Chances of Re-awakening

No case exists of anyone emerging from PVS of three years’ duration. Toward the end
of Terri Schiavo’s life, when activists shouted the contrary at cameras, she had been
in PVS for 15 years, and hence, according to clinical evidence, had no chance of
returning to normal consciousness. Physicians who have seen her CT scan said that
her brain, instead of being filled with normal brain tissue, then contained only cere-
brospinal fluid, an indication of gross neurological damage and vegetative status.55

Terri’s EEG was flat and her CT scan showed severe atrophy in her cerebral
hemispheres. Schindler-friendly physicians suggested vasodilators, but the autopsy

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Chapter 3 Comas: Karen Quinlan, Nancy Cruzan, and Terri Schiavo 73

showed what professional neurologists claimed: Nothing would have helped her
regain consciousness.

Dartmouth neurologist James Bernat agreed but understood why laypeople ral-
lied behind Terri. “Just looking at a videotape of someone propped up in bed, with
their eyes blinking and so on, it look’s like they’re aware,” he said.56 They are
awake, he said, but not aware. With an intact brain stem, their eyes can still follow
things but only slightly to the left or right.

Compassion and Its Interpretation

In cases like that of Karen Quinlan or Nancy Cruzan, the Golden Rule might imply:

If I ended up in a condition like Karen’s or Nancy’s, I would want to die, and I hope
that those around me would be merciful enough to let me die. If I could somehow
possibly be “conscious” in such a state, I wouldn’t want to go on. I wouldn’t want
to be imprisoned in such a body for months or years, which would be worse than
being buried alive. Mercy requires us to make dying humane, not an endless torture.

Such a thought illustrates how the Golden Rule can be interpreted in different ways.
Some people might want a chance to recover, even if it is very slight. “Doing what-
ever someone else wants” must take into account that people differ in their person-
alities and wants.

The Quinlans and the Cruzans did argue that allowing Karen and Nancy to die
would be merciful. The issue of mercy is relevant in these and similar cases because we
can’t know for certain that such patients do not feel—we cannot be certain that they do
not experience sensations such as pain and discomfort; we may not even be certain that
they do not experience distress, fear, frustration, loss, or other tormenting emotions.

Eventually, the cases of Karen Quinlan and Nancy Cruzan came to symbolize
mercy as an issue for both patients and families. These cases seemed to represent
an inversion of values in medicine: instead of doing what families wanted, medicine
did what bureaucracies required; instead of a dignified death, breathing machines
and feeding tubes maintained existence; instead of a quick death, there was slow
withering of an emaciated body over a decade. On top of all that, the chance that
a shell of a person might still exist in pain was too much for most people. For many
people, the long dying of these two patients lacked mercy.

Would not most people abhor such a life? Abhor the thought of inhabiting a
body for 15 years in which they could not scratch an itch, express a wish, or perform
any human act? No one knows what might be going on in such a mental remnant.
Whatever destroyed the original mind might have left it in disarray, such that Terri’s
mental life had become an endless nightmare.

If Terri Schiavo could have awakened for 15 minutes and could have understood
her condition, what she looked like, and what the case was doing to her family, can
anyone think that this shy, weight-conscious woman would have wanted her
brain-damaged, disfigured body exhibited to the world this way? If emotional revul-
sion is going to count in ethics, what about her revulsion?

Her parents saw this differently. They felt she would have wanted to live, even
in such diminished circumstances. This shows the problem with simplistic interpre-
tations of the Golden Rule or substituted judgment.

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74 Chapter 3 Comas: Karen Quinlan, Nancy Cruzan, and Terri Schiavo

Religious Issues

As we saw, in 1976, the Catholic Church opposed withdrawal of a ventilator for
Karen Quinlan. Over the next 40 years, Catholic hospitals softened their opposition
to such withdrawals and indeed became models of compassionate dying, routinely
removing feeding tubes from comatose patients.

But in 2004, during the Schiavo case, Pope John Paul II said that removal of
feeding tubes from patients in PVS was “euthanasia by omission.”57 Although not
delivered ex cathedra, the Pope’s remark cast doubt on that practice.

In contrast, Father Kevin O’Rourke, one of the leading Catholic medical ethi-
cists in North America, argued that feeding tubes were extraordinary care and
should not be used to prolong the life of PVS patients. He noted that both Catho-
lic ethicists working in hospitals, as well as doctors and nurses there, routinely
allowed removal of life support from patients in PVS. Father John Paris, a leading
Jesuit bioethicist and professor of ethics at Boston College, noted that the Pope’s
remarks targeted a specific audience and predicted they would have little impact in
America. “I think the best thing to do is ignore it, and it will go away,” Paris said.
“It’s not an authoritative teaching statement.”58

After the Schiavo case, Catholic hospitals could remove life-sustaining care
under very few conditions.59 The case also had other effects. In 2013, in Washington
State, as Catholic hospitals merged with other hospitals, big political issues emerged
whether the new Catholic-controlled entity would perform abortions, allow assisted
reproduction or removal of ventilators and feeding tubes, or recognize rights of
same-sex couples.60

Nagging Questions

Not everything in the Schiavo case adds up. First, as attorney general William Web-
ster for Missouri said about the case of Nancy Cruzan, “We generally don’t allow a
life to be ended on hearsay.”61 He was referring to statements by Nancy’s father and
sister that they thought they remembered her saying she wouldn’t want to live on a
feeding tube.

Michael Schiavo’s very late recollection of a comment by Terri years before to
the same effect seems ad hoc, that is, remembered for the purpose at hand. Regard-
less of its veracity, it simply does not meet the standard of clear and convincing
evidence, especially when directly contradicted by both Schindler parents and
her brother, Bobby. Three-to-one against doesn’t add up to clear-and-convincing
evidence for.

Second, why not relinquish guardianship to the Schindlers? Michael’s position
was that, first, he had long ago exhausted all the money on her care, and second,
she had died long before. But if that were so, why not let her parents care for her
body? After a few years, they would probably come to agree, as Karen Quinlan’s
mother did, but why not let them get closure that way? If Terri was already dead,
she couldn’t be harmed anymore.

Third, although the coroner’s report closed some questions, it opened others:
How did she lose so much weight so fast? Just by drinking iced tea? That doesn’t
add up. Why did she suddenly stop breathing? If not a heart attack, then what?

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Disability Issues

As interest grew in the Schiavo case, advocates for disabled people began to take
notice. While the Quinlan and Cruzan cases had never been conceptualized as
involving discrimination against disabled persons, the last decades have witnessed
the growing influence of disability culture.

Advocates for Terri Schiavo claimed that this severely, cognitively impaired per-
son was a victim of discrimination against the disabled. Since passage of the Americans
with Disabilities Act (ADA) in 1990, denial of medical resources to a disabled person
because he is disabled violates federal law. However, the ADA has never specified
end-of-life cognitive deterioration (which also would include Alzheimer’s disease)
as a covered disability.

Groups such as Not Dead Yet, the World Association of Persons with
Disabilities, the National Spinal Cord Injury Association, and Joni and Friends
opposed removal of Terri’s feeding tube. Of course, to claim that Terri Schiavo
is a victim of discrimination against disabled persons assumes that she is still a
person. That is exactly what disability advocates claimed. Given the increasing
acceptance that a patient in PVS for a decade cannot revert back to conscious-
ness, Terri’s advocates thus increasingly claimed that she is not in PVS but in a
minimal consciousness state.

Charleston disability rights lawyer Harriet McBryde Johnson charged that, “Ms.
Schiavo has a statutory right under the Americans with Disabilities Act not to be
treated differently because of her disability. Obviously, Florida law would not allow
a husband to kill a non-disabled wife by denying her nourishment. Because the state
is overtly drawing lines based on disability, it has the burden under the ADA of
justifying those lines.”62

Some Distinctions

Futile versus Non-Futile Care. In December 1991, Helga Wanglie, age 87, had
been in PVS for eight months, sustained by a ventilator and a feeding tube, at
Hennepin County Hospital in Minneapolis, Minnesota.63 At the hospital, the phy-
sicians (who included Ronald Cranford) decided to withdraw treatment. Helga’s
husband refused permission for discontinuation of her ventilator and feeding tube,
and he went to court.

The Wanglie case surprised for two reasons. First, since Helga’s insurance
covered her hospitalization, the hospital lost money by withdrawing artificial
life support. Second, the case involved a philosophical dispute about whether a
relative could force the medical team to continue care it regarded as futile. When
Helga died unexpectedly, the legal case ended.64

In 1989, in Massachusetts, physicians were sued for removing medical support
that they unanimously believed to be futile. Even though the jury agreed that
Caroline Gilgunn would have wanted to remain on life support, the physicians won
because the jury agreed that patients could not force physicians to render futile
treatment.

In the 1990s, some physicians believed that medical futility was a descriptive
concept that could help physicians and families easily make decisions about

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76 Chapter 3 Comas: Karen Quinlan, Nancy Cruzan, and Terri Schiavo

treatment at the end of life. Today, most bioethicists believe that medical futility is
not entirely descriptive and contains the evaluative assumption that continued treat-
ment is “not worth it.”65

The Schiavo case is a good example: Competent neurologists unanimously
agreed that, after three years, further treatment was futile for Terri, yet some staff,
her parents, and rogue neurologists disagreed, claiming it could be worthwhile.

Most American patients and their families now decline treatment when their
physicians advise them that further treatment is futile. A study in 1994 that followed
over 4,000 patients whose condition was diagnosed as life threatening or terminal
found that only 14 percent of them were resuscitated after being near death. This
figure was far less than most physicians predicted and far less than it would have
been a decade earlier, when most of those patients would have been resuscitated.66

Extraordinary versus Ordinary Treatment. In 1957, a group of anesthesiologists
asked Pope Pius XII what they owed dying patients. The Pope said that they need
not take heroic steps to keep such patients alive: Patients were owed merely ordi-
nary, but not extraordinary, treatments. However, “extraordinary” is equivocal and
has meaning across the end points of a continuum that shifts with medical progress.
In 1967, when Christiaan Barnard first transplanted a human heart, his heart-lung
bypass machine was extraordinary. That machine was the forerunner of the large,
bulky ventilator that kept Karen Quinlan breathing. Today, miniaturized ventila-
tors—some small enough to be used with premature babies—are used everywhere in
medicine. Yesterday’s extraordinary treatment becomes today’s ordinary treatment,
rendering the distinction less helpful than it was a half-century ago.

Artificial Nutrition and Hydration. In the 1980s, some people believed that what-
ever might be said about extraordinary and ordinary care in the future, providing
food and water would always be considered ordinary and humane medical care. They
felt that such basic care was morally owed to PVS patients. This issue arose in the
Schiavo case.

The reality of feeding a chronically vegetative patient is not like spooning
chicken soup into the mouths of patients who are simply weak. Most vegetative
patients have no swallowing reflexes, so they cannot be fed by mouth. Therefore,
an artificial liquid diet must be mechanically pumped into their bodies.

The chicken-soup image can distort people’s impression of a PVS case. Karen
Quinlan’s sister, for example, thought that her comatose sister would look like
Sleeping Beauty and was shocked by the emaciated figure she saw. By the time of
Nancy Cruzan’s case in 1990, improvements in artificial feeding would create the
opposite effect: Because of retention of fluids, PVS patients now had the rotund
“Porky Pig” face seen in Terri Schiavo. Moreover, with many kinds of feeding tubes,
patients must be tied down to avoid dislodging the line. A restrained, bald woman
with a “porky” face is not how most people visualize PVS patients.

As said, neither dehydration nor starvation distresses semiconscious, dying
patients. Patients near death not on nutritional support seem more comfortable than
patients on whom such support is forced. One important national commission
noted in 1983 that loss of appetite is “almost the norm in the latter stages of ter-
minal illness” and concluded, “Only rarely should a dying patient be fed by tube

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Chapter 3 Comas: Karen Quinlan, Nancy Cruzan, and Terri Schiavo 77

or intravenously.”67 Indeed, such feeding may actually make the patient suffer and
thus harm him or her.

Shaky arguments abounded in the 1980s against withdrawing nutrition and
hydration. Some states allowed removal of ventilators but not of feeding tubes, and
champions of a sanctity-of-life worldview saw removal of feeding and hydration tubes
as the immediate cause of death and hence as mercy killing. One philosopher argued
in 1983 that providing food and water to PVS patients is the ordinary care “that all
human beings owe each other”; another argued at about the same time that such
feeding involves “the most fundamental of all human relationships,” and that “to
tamper with, or adulterate, so enduring and central a moral emotion” is “a most
dangerous business.”68

By the 1990s, most physicians had come to feel that artificial IV feeding lines
for PVS patients compared to ventilators: both were advanced medical technology.
The Cruzan decision in 1990 agreed.

Withdrawing and Forgoing Treatment. During the last 40 years, a central moral
debate has concerned the degree to which a physician may hasten deaths of dying
patients. One cause of this debate was a declaration by the AMA in 1973 (two years
before Quinlan):

The intentional termination of the life of one human being by another—mercy
killing—is contrary to that for which the medical profession stands and is contrary
to the policy of the American Medical Association.

. . . The cessation of the employment of extraordinary means to prolong the
life of the body when there is irrefutable evidence that biological death is imminent
is the decision of the patient and/or immediate family.69

In this statement, the word “extraordinary” is ambiguous, and AMA policy did not
clarify it. Are all patients on ventilators receiving extraordinary care? Is a physician
who withdraws a dying patient’s ventilator or feeding tube guilty of mercy killing?

Concern about mercy killing led some physicians to forgo the use of ventilators
and artificial feeding. Since withdrawal of such care might be seen as mercy killing, it
was far easier to just forgo support. This reasoning created an odd situation, in which
physicians would forgo the same treatment that they would not otherwise withdraw.

Others believed that because outcomes are never certain, patients were owed
treatment on a trial period—perhaps both a ventilator and artificial feeding—to see
if they could recover.

In 1975, Karen Quinlan’s physicians, Morse and Javed, upheld the official position
of AMA: that withdrawing medical support from a patient was “active euthanasia.”
In 1986, the AMA decided that an ethical physician, after consulting with the family,
could withdraw ventilators and feeding tubes from irreversibly comatose patients.

This new AMA policy did not say that being irreversibly comatose meant being
brain-dead. Criteria for ethical removal of medical support differ from criteria of
brain death.

Advance Directives

The Quinlan case caused written advance directives to become popular in various
forms. A living will informs physicians about conditions under which a person would

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78 Chapter 3 Comas: Karen Quinlan, Nancy Cruzan, and Terri Schiavo

not want medical support. A values inventory specifies what a person values in life
and may be useful to a patient’s family and physicians if they must make decisions
for that person. A durable power of attorney assigns to someone else the right to make
financial and life-and-death medical decisions if the signee becomes incompetent.

Cruzan emphasized that such a document would be crucial in meeting the “clear
and convincing” standard required by New York and Missouri. After the Schiavo
case, many Americans rushed to sign such directives (which may be downloaded
at the Caring Connections website). In 1991, the Health Care Financing Adminis-
tration required all American hospitals to ask incoming patients if they wanted to
create an advance directive.

Advance directives contain two major problems. First, as the SUPPORT study
showed, most people do not accurately predict their own future preferences.70 Sec-
ond, evidence has grown that spouses designated as legal proxies do not accurately
predict the wishes of previously competent but now incompetent spouses.71 As
frequently as they wrongly predict a desire for mere palliative care, they just as
frequently wrongly predict desires for aggressive treatment.72

Advance directives often do not cover nonterminal, though permanently coma-
tose, patients. As such, advance directives should specify whether food and water
are included under unwanted medical treatment or name a specific person to be a
proxy for an incompetent patient. Because such directives are requested of patients
only upon admission to hospitals, most people under 30 do not have one.

The Schiavo Case, Bioethics and Politics

Outsiders made things worse in the Schiavo case. Not understanding the history of
the false report of abuse and trauma on the 1991 bone scan, outside experts guessed
that something malevolent had happened to Terri, making her advocates suspect a
cover-up by Terri’s husband and the courts. Outside physicians, pushing their own
exotic, for-profit schemes, exploited gullible parents and friends.

When Terri’s parents went to national media, especially in an age of fierce
competition among cable news stations for sensational topics, the floodgates opened.
And because politicians on the national scene love media attention, and as Florida
Senator Mel Martinez predicted, U.S. senators, congressmen, and even the presi-
dent got involved. Ten years after Terri’s death in 2005, Michael Schiavo is still
bitter, saying that Jeb Bush “put me through hell.”73

Since 1997 when scientists announced the cloning of the lamb Dolly (see
Chapter 6), bioethics has become increasingly politicized, with social conservatives
extolling the personhood of human embryos and opposing all forms of cloning. The
Schiavo case landed on this pedigree and exploded. Whether it’s good for bioethics
to be covered all evening on cable news outlets remains to be seen.

FURTHER READING AND RESOURCES

William Colby, The Long Goodbye: The Deaths of Nancy Cruzan, Carlsbad, CA: Hay House,
2002.

Joseph Fins, Rights Come to Mind: Brain Injury, Ethics and the Struggle for Consciousness,
New York: Cambridge University Press, 2015.

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Chapter 3 Comas: Karen Quinlan, Nancy Cruzan, and Terri Schiavo 79

Mark Fuhrman, Silent Witness: The Untold Story of Terri Schiavo’s Death, New York: William
Morrow, 2005.

Joseph and Julia Quinlan, with Phyllis Battelle, Karen Ann: The Quinlans Tell Their Story, New
York: Doubleday, 1977.

Michael Schiavo, and Michael Hirsh, Terri: The Truth, New York: Dutton Adult Books, 2006.
Robert and Mary Schindler, with Suzanne Schindler Vitadamo and Bobby Schindler, A Life

that Matters: The Legacy of Terri Schiavo, New York: Time Warner Books, 2006.
Between Life and Death: The Terri Schiavo Story, A&E films. This excellent 45-minute summary

of the case, made by CBS News, has good pictures of Terri in various stages of her life
and pictures of Patricia White Bull and Terry Wallace (coma patients who awakened
after many years).

DISCUSSION QUESTIONS

1. If you had only a 1 percent chance of coming out of a long-term coma or PVS,
would you want physicians to keep treating you, or would you rather want they
let you die?

2. In the above case, what burdens or benefits would continued treatment place
on your family and loved ones?

3. Many elderly people will succumb to coma-like states in their final years as they
decline into neurological conditions such as Alzheimer’s disease. Can society afford
long-term care for millions of such people? Is there a morally relevant difference
between such care for a 90-year-old with dementia and a 25-year-old in PVS?

4. If families won’t or can’t make decisions about death, is it permissible for
physicians to act as if they’ve discovered that death has occurred in a relative,
to help out the family? Is this a white lie? Would Kant approve?

5. Are worries about a slippery slope legitimate in the coma cases of this chap-
ter? If society starts triaging such marginal people, will it lead to a “culture
of death” rather than a “culture of life”? What will happen if society faces
a great financial crisis over paying for medical care for cognitively impaired
patients and we don’t have a strong culture of life? Will society fail this
new test?

6. James Rachels argues that it’s morally irrelevant whether physicians withdraw
or forgo ventilators and feeding tubes, but the two actions certainly feel different
to families and physicians. Are these feelings relevant to accessing the morality
of letting die?

7. How do expanded definitions of death by neurological criteria depend on great
trust in the integrity of the transplant community not to abuse such
definitions?

8. What is the proper role of state and federal government in cases like Nancy
Cruzan and Terri Schiavo? Should it protect vulnerable patients and assume
the worst of families or should it assume the best of families and give them
wide latitude to decide?

9. Given the SUPPORT study, would it help to avoid family disputes if most people
had an advance directive? What are the limitations of such directives and
hospital ethics committees to resolve these cases?

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80 Chapter 3 Comas: Karen Quinlan, Nancy Cruzan, and Terri Schiavo

10. Is it fair to conceptualize the cases in this chapter as “disabled people” needing
protection under the Americans with Disabilities Act? If we do so, what problems
arise?

11. In the Schiavo case, did Michael Schiavo meet the standard of clear and convincing
evidence for removal of Terri’s feeding tube? Why didn’t he turn the case over
to her parents and let them take care of her, as they volunteered to do?

NOTES

1. Robert Morse, in In the Matter of Karen Quinlan: The Complete Legal Briefs, Court
Proceedings, and Decisions in Superior Court of New Jersey, vols. 1 and 2, University
Publications of America, Frederick, MD, 1982, p. 236 (hereafter, Proceedings 1,
Proceedings 2). The later court transcript contradicts itself about the exact drugs
Karen consumed. Attending physician Robert Morse testified that “she had some
barbiturates, which was normal, 0.6 milligrams; toxic is 2 milligrams, and the
toxic dose is about 5 milligrams percent” [sic]. Julius Korein, in Proceedings 1,
pp. 34–35. Consulting neurologist Julius Korein, whom the Quinlans hired, tes-
tified that Karen’s drug screen “was positive for quinine, negative for morphine,
barbiturates and other substances. A subsequent test for Valium and Librium
was positive.”3 (No one else mentioned Librium.) Court prosecutor George Dag-
gett testified that Karen had taken tranquilizers with alcohol shortly before
becoming unconscious.4 George Daggett, New York Times, September 20, 1975,
New Jersey sec. The Quinlans denied that the drug screen showed barbiturates:
“The early urine and blood samples, taken on the day Karen was brought to the
hospital, revealed only a ‘normal therapeutic’ level of aspirin and the tranquilizer
Valium in her system.”5 Joseph and Julia Quinlan with Phyllis Battelle, Karen
Ann: The Quinlans Tell Their Story, Doubleday Anchor, New York, 1977, p. 22.

2. Joseph and Julia Quinlan with Phyllis Battelle, Karen Ann: The Quinlans Tell Their
Story, Doubleday Anchor, New York, 1977, p. 27.

3. Daniel Coburn, in Proceedings 1, p. 17. (Robert Morse, in In the Matter of Karen
Quinlan: The Complete Legal Briefs, Court Proceedings, and Decisions in Superior
Court of New Jersey, vols. 1 and 2, University Publications of America, Frederick,
MD, 1982.)

4. Julius Korein, in Proceedings 1, p. 329.
5. Fred Plum, in Quinlan and Quinlan, Karen Ann, p. 198.
6. Robert Morse, in Quinlan and Quinlan, Karen Ann, pp. 188–189.
7. Quinlan and Quinlan, Karen Ann, pp. 272–273 (the nun is not named).
8. Gino Concetti, quoted in Quinlan and Quinlan, Karen Ann, p. 284.
9. Quoted in Quinlan and Quinlan, Karen Ann.
10. Nat Hentoff, “The Deadly Slippery Slope,” Village Voice, September 1, 1987.
11. Ibid.
12. Cruzan v. Director, Missouri Dept. of Health, 110 S. Ct. 2841, 1990.
13. George Annas, “Nancy Cruzan and the Right to Die,” New England Journal of

Medicine 323, no. 10 (September 6, 1990), p. 670.

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Chapter 3 Comas: Karen Quinlan, Nancy Cruzan, and Terri Schiavo 81

14. “Love and Let Die,” Time, March 19, 1990, pp. 62ff.
15. Andrew M. Malcolm, “Nancy Cruzan: End to Long Goodbye,” New York Times,

December 29, 1990, p. A3. See also, “A Conversation with Mr. and Mrs. Cruzan,”
Midwest Medical Ethics: The Nancy Cruzan Case 5, nos. 1–2 (Winter/Spring 1989).

16. John Robertson, “Cruzan: No Rights Violated,” Hastings Center Report 20
no. 5 (September-October 1992), p. 7.

17. Ronald Cranford, lecture at UAB Medical School, January 19, 1991.
18. Joanne Lynn and Jacqueline Glover, “Cruzan and Caring for Others,” Hastings

Center Report 20, no. 5 (September–October 1992), p. 11.
19. Annas, “Nancy Cruzan and the Right to Die,” p. 672.
20. Timothy E. Quill, “Terri Schiavo—A Tragedy Compounded,” New England Journal

of Medicine 352 (April 21, 2005), pp. 1630–1633.
21. According to Kenneth Goodman, M.D., of the Department of Bioethics at the

University of Miami. Personal communication, November 14, 2004.
22. Arian-Camp-Flores, “The Legacy of Terri Schiavo,” Newsweek, April 4, 2005, p. 26.
23. Stephen Barrett, M.D., “Judge Criticizes Hammesfahr and Maxfield Testimony in

Schiavo Case,” CaseWatch, http://www.casewatch.org/civil/schiavo.shtml
24. Arian-Camp-Flores, “The Legacy,” p. 26.
25. Quoted from William Colby, The Long Goodbye: The Deaths of Nancy Cruzan, Hay

House Publishing, Carlsbad, CA, 2002.
26. Manuel Roig-Franzia, “Florida High Court Overrules Governor in Schiavo

Case,” Washington Post, September 24, 2004, p. A3.
27. Manuel Roig-Franzia, “Court Lets Right-to-Die Ruling Stand,” Washington Post,

January 24, 2005, p. A12.
28. Ibid.
29. Charles Babington and Mike Allen, “Congress Passes Schiavo Measure,” Wash-

ington Post, March 2, 2005, p. A1.
30. Democrat Jim Jordan, quoted by Charles Babington, “Viewing Videotape,Frist

Disputes Fla. Doctors’ Diagnosis of Schiavo,” Washington Post, March 20, 2005,
p. A3.

31. Tamara Lipper, “Between Life and Death,” Newsweek, March 28, 2005, p. 30.
32. Manuel Roig-Franzia, “Schiavo’s Parents Take ‘Final Shot’ to Keep Her Alive,”

Washington Post, March 26, 2005, p. A4.
33. Nancy Weaver Teichert , “Experts: Lack of Food, Water, Does Not Cause Pain for

Dying,” Sacramento Bee, March 28, 2005; Birmingham News, March 29, 2005, p. A6.
34. “Report of Autopsy,” Medical Examiner, District Six, Pasco and Pinellas Counties,

10900 Ulmerton Road, Largo, FL 33778, Autopsy date: April 1, 2005. p. 8.
35. President’s Commission for the Study of Ethical Problems in Medicine and

Biomedical and Behavioral Research, Defining Death, Superintendent of
Documents, Washington D.C., 1981, p. 14.

36. Ad Hoc Committee of the Harvard Medical School to Examine the Definition
of Brain Death, “A Definition of Irreversible Coma,” Journal of the American
Medical Association 205, no. 337 (1968).

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82 Chapter 3 Comas: Karen Quinlan, Nancy Cruzan, and Terri Schiavo

37. The characteristics listed by the philosopher Mary Anne Warren in Chapter 4
(with regard to whether an aborted fetus is a person) might be used in a sim-
ilar way to define the higher person standard: If all these characteristics are
lacking we do not have a person.

38. Robert Morrison, “Death: Process or Event?” Science 173 (1971), pp. 694–698.
39. Lance Stell, “Let’s Abolish ‘Brain-Death,’ ” Community Ethics (University of Pitts-

burgh Center for Medical Ethics) 4, no. 1 (Winter 1997).
40. Joseph Fins, Rights Come to Mind: Brain Injury, Ethics, and the Struggle for Con-

sciousness, Cambridge University Press, 2015, New York, NY, pp. 65–71.
41. Associated Press, “Policeman Who Briefly Emerged from Coma-Like State in

‘96 Dies,” Birmingham News, April 16, 1997, p. 7A.
42. Benedict Carey, “Inside the Injured Brain, Many Kinds of Awareness,” New York

Times, April 5, 2005.
43. Multi-Society Task Force on PVS, “Medical Aspects of the Persistent Vegetative

State,” parts 1 and 2, New England Journal of Medicine 330, no. 22 (May 26, 1994;
June 2, 1994), pp. 1572–1579.

44. S. I. Dubroja et al., “Outcome of Posttraumatic Unawareness Persisting for More
than a Month,” Journal of Neurological Neurosurgery Psychiatry 58, no. 4 (1995),
pp. 465–66; R. Chen et al., “Prediction of Outcome in Patients with Anoxic
Coma: A Clinical and Electrophysiologic Study,” Critical Care Medicine 24,
no. 4 (April 1996), pp. 672–678; Associated Press, “Policeman Who Briefly
Emerged from Coma-Like State in ‘96 Dies.”

45. Dubroja et al., “Outcome of Post-traumatic Unawareness Persisting for More
than a Month.”

46. R. Chen et al., “Prediction of Outcome in Patients with Anoxic Coma: A Clinical
and Electrophysiologic Study,” Critical Care Medicine 24, no. 4 (April 1996),
pp. 672–678.

47. Carey, “Inside the Injured Brain.”
48. Carl Zimmer, “What If There’s Something Going On in There?” New York Times

Magazine, September 29, 2003.
49. M. Monti et al., “Willful Modulation of Brain Activity in Disorders of Conscious-

ness,” New England Journal of Medicine 362, no. 7 (February 18, 2010), pp. 579–590.
50. Adrian Owen, “Using Functional MRI Imaging to Detect Covert Awareness in

the Vegetative State,” Archives of Neurology 64, no. 8 (August 2007), p. 1098.
51. Morgan Peck, “Brain-Wave Test Challenges Vegetative-State Diagnosis,” IEEE

Inside Technology Spectrum, August 1, 2008, p. 1. http://spectrum.ieee.org/bio-
medical/diagnostics/brainwave-test-challenges-vegetativestate-diagnosis.

52. Kate Connolly, The Guardian, November 23, 2009.
53. Takamitsu Yamamoto et al., “Deep Brain Stimulation for the Treatment of Veg-

etative State,” European Journal of Neuroscience, Vol. 32, pp. 1145–1151, 2010.
54. “Story of Book-Writing Coma Patient Debunked,” National Public Radio,

February 17, 2010.
55. Her CT scan can be seen at: http://theness.com/neurologicablog/index.php/

schiavo-and-the-persistent-vegetative-state/.

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Chapter 3 Comas: Karen Quinlan, Nancy Cruzan, and Terri Schiavo 83

56. Rita Rubin, “Doctors Work to Understand Vegetative States,” USA Today, March 21,
2005, p. 3A.

57. Cathy Lynn Grossman, “Pope Declares Feeding Tubes a ‘Moral Obligation,’ ”
USA Today, April 2, 2004, p. A1.

58. John Paris, quoted by Lisa Greene, “At Pope’s Word, New Schiavo Cases?” St.
Petersburg/Tampa Bay Times, May 1, 2004, http://www.sptimes.com/2004/05/01/
Tampabay/At_pope_s_word__new_S.shtml.

59. Manuel Roig-Franzia, “Catholic Stance on Tube-Feeding Is Evolving,” Washington
Post, March 27, 2005, p. A7.

60. Kirk Johnson, “Hospital Mergers Resent Abortion-Access Battle,” New York
Times, May 12, 2013, p. A1.

61. William Webster, quoted from “The Cruzan Right-to-Die Case,” Face-to-Face with
Connie Chung, (NBC television show), September 3, 1990

62. Harriet McBryde Johnson, “Overlooked in the Shadows,” Washington Post,
March 25, 2005.

63. Lisa Belkin, “As Family Protest, Hospital Seeks End to Woman’s Life Support,”
New York Times, January 10, 1991, pp. A1–2.

64. Steven Miles, “Interpersonal Issues in the Wanglie Case,” Kennedy Institute of
Ethics Journal 2, no. 1 (March 1992), pp. 61–72.

65. For a review of these cases, see Law, Medicine, and Health Care 20 (1993),
pp. 310–315.

66. R. Knox, “Americans’ New Way of Dying: Don’t Fight It,” Boston Globe, June 5,
1994.

67. Ibid., app. B, p. 288.
68. Daniel Callahan, “On Feeding the Dying,” Hastings Center Report 13, no. 5

(October 1983), p. 22; Gilbert Meillander, “On Removing Food and Water:
against the Stream,” Hastings Center Report 14, no. 6 (December 1984),
pp. 11–13.

69. American Medical Association, Opinions of the Judicial Council, Chicago, IL,
1973.

70. SUPPORT Principal Investigators, “A Controlled Trial to Improve Care of
Seriously Ill Hospitalized Patients. The Study to Understand Prognoses and
Preferences for Outcomes and Risks of Treatment (SUPPORT),” Journal of the
American Medical Association 274 (1995), pp. 1591–1598.

71. R. F. Uhlmann, R. A. Pearlman, and K. C. Cain, “Physicians and Spouses’
Predictions of Elderly Patients’ Treatment Preferences,” Journal of Gerontology
43 (1988), pp. 115–121.

72. Rick Weiss, “Patients’ Surrogates Often Wrong about Preferred Treatment,”
Washington Post, March 14, 2006, p. A3.

73. “Jeb ‘Put Me through Hell,’ “ POLITICO Magazine, January 29, 2015.

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This chapter discusses abortion and its history prior to its legalization by the U.S.
Supreme Court in 1973 in Roe v. Wade. It also discusses the controversial case of
Kenneth Edelin, who aborted a late-term fetus; experiments on fetuses, fetal and
fetal-tissue research; and emergency contraception (Plan B).

KENNETH EDELIN’S CONTROVERSIAL ABORTION

In January 1973, just nine months before Kenneth Edelin aborted a fetus in Boston
in October, the U.S. Supreme Court had legalized abortion. Edelin served as chief
resident in obstetrics at Boston City Hospital.

Over those nine months, researchers at this hospital had performed experiments
on to-be-aborted fetuses and reasoned this way: Since the aborted fetuses were going
to die anyway, why not use them in experiments to help other fetuses?

What about this reasoning? If unclaimed, runaway pets will be killed after three
days in the pound, why not use them in medical experiments to help other dogs?
If terminal patients will die anyway, why not test new drugs or procedures on them?
If Jews are going to die anyway in concentration camps, why not use them—as Nazi
physicians reasoned—in medical experiments? (These claims illustrate reductio ad
absurdum reasoning.)

The research at this hospital studied which drugs crossed the placenta and,
hence, which might harm the fetus. Physicians gave women undergoing abortions
the antibiotics clindamycin and erythromycin, later examined the aborted fetuses,
and found that these drugs concentrated in livers of fetuses.

In another study in 1973, researchers tried to develop an artificial placenta.
Eight fetuses, weighing between 300 and 1,000 grams, were obtained by hys-
terotomy. A hysterotomy is abortion by caesarean surgery that involves cutting
through the lower abdominal wall. When researchers placed the largest of them in
a warm saline solution that mimicked the amniotic sac, it gasped frantically and
moved its limbs as it died.1 In another experiment on the effect of lack of glucose
to the brain, researchers severed heads of 12 nonviable fetuses after stopping their

C H A P T E R 4

Abortion: The Trial of
Kenneth Edelin

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Chapter 4 Abortion: The Trial of Kenneth Edelin 85

hearts but before anoxia damaged their brains. The researchers successfully
maintained the fetal brains with artificial replacements for glucose.2

An article describing the first experiment appeared in June 1973 in the New
England Journal of Medicine, a publication edited in Boston.3 Someone mailed a copy
to several Boston Catholics.

Protestant theologian Paul Ramsey called such experimentation “unconsented-
to research on unborn babies” and exploitation of a “tragical case of dying” babies.4
These experiments outraged Americans. After publicity about them in 1975, Con-
gress banned all federally funded research involving fetuses. Because it did not
know where to draw a line, it also banned funding of research involving human
embryos.

A councilman held a hearing in September 1973 to investigate the experiments
on fetuses. Antiabortionists packed the auditorium and heard Mildred Jefferson, an
African-American assistant professor of surgery at Boston University, speak of her
opposition to abortion.

At Edelin’s trial, Jefferson would later testify that some women undergoing
abortion in studies at Boston City Hospital were too young to consent legally and
had not consented in writing. If this were true, researchers could be charged with
“grave robbing,” that is, illegally procuring bodies for medical experimentation.

As a result of these hearings, nothing happened to the researchers or to Boston
City Hospital, which continued to experiment. But Catholic Bostonians festered
about legalized abortion. In this milieu in October 1973, Edelin performed a con-
troversial abortion.

In 1973, Kenneth Edelin was 35 years old. The son of a postman, he grew up
poor in Washington, D.C. Graduating with a B.S. from Columbia University, he
received his M.D. from the historically black Mcharry Medical College, and then
served three years as a U.S. Air Force physician. In 1971, he began his residency at
Boston City Hospital, known as the public hospital for poor people and the model
for the television show St. Elsewhere. When the case occurred, Edelin was the first
African-American chief resident in OB/GYN in the hospital’s history.

“Alice Roe” is a pseudonym for a 17-year-old African-American student from
Roxbury, a poor suburb of Boston, whom Edelin (decades later) called “Evonne.”
Edelin’s faculty supervisor, Hugh Holtrop, examined Evonne, estimating her to be
22 weeks pregnant. Enrique Giminez, a first-year resident from Mexico, estimated
her to be 24 weeks pregnant (Giminez later testified against Edelin); a third-year
medical student, Steve Teich, who assisted during the abortion, agreed with Giminez’s
estimate. At the time, the underfunded hospital had no ultrasound machine and
couldn’t make a more precise estimate.

Even though Holtrop had admitted Evonne, and even though the fetus to be
aborted was late-second trimester, Holtrop delegated third-year resident Edelin to
perform the abortion. Like most attending physicians, Holtrop had a private prac-
tice and spent little time at this hospital, so third-year residents normally did such
operations.

To complicate matters, Holtrop had obtained Evonne’s and her mother’s per-
mission for another fetal experiment, this time to see if aminoglutethamide increased
the hormone output of the placenta. Accordingly, Holtrop gave Evonne

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86 Chapter 4 Abortion: The Trial of Kenneth Edelin

aminoglutethamide intravenously and analyzed her urine over the next 24 hours.
His study took place on October 1–2, 1973.

Edelin planned to abort the fetus by injecting saline solution into the amniotic
sac, but the next day, when he inserted a needle to sample her amniotic fluid, he
drew blood. This indicated that Evonne had an anterior placenta, attached to her
uterine front wall, with the fetus behind it (the placenta normally develops near
the spine with the fetus near the abdomen). Saline injected into the placenta could
travel into her bloodstream, where it could be lethal to Evonne.

So Edelin rescheduled Evonne for a hysterotomy the next day. Instead of
Giminez, Edelin chose Teich, the third-year medical student, as his assistant. Unin-
vited, Giminez watched the hysterotomy from a distance.

What happened next is controversial. Giminez later testified that Edelin made
the cesarean section, reached in, cut the placenta from the abdominal wall, waited
three minutes, and then removed a dead fetus. If such a wait took place, it is
important because a baby cannot breathe on its own inside the uterus: It begins
breathing only when brought outside. Edelin would soon be charged with man-
slaughter for not immediately removing the baby, causing it to suffocate.

Afterward, someone took the fetus to the morgue, and—as required by hospital
policy for aborted fetuses weighing more than 600 grams—preserved it in formalin.
This meant that the district attorney had a body for the crime and photographs to
show a jury.

A grand jury indicted Edelin. Newman Flanagan, a competent, tough, and
showy district attorney, prosecuted Edelin. William Perkins Homans, Jr., a wealthy
Boston lawyer who often defended unpopular causes, defended Edelin; Judge James
McGuire presided.

Flanagan charged Edelin with manslaughter, defined in Massachusetts as “wanton,
reckless” omission or commission of an act that causes death; Massachusetts law fur-
ther defined “wanton, reckless” conduct as “the legal equivalent of intentional conduct”
and as “disregard of the probable consequences to the rights of others.” Judge McGuire
told the jury, “The essence of wanton or reckless conduct is the doing of an act or the
omission to act where there is a duty to act, which commission or omission involves
a high degree of likelihood that substantial harm will result to another.”5

Massachusetts did not pass an abortion law until August 1974 (19 months after
Roe v. Wade), and in the absence of a specific state law, Judge McGuire instructed
the jury that Roe v. Wade was “absolutely controlling.” Since Roe v. Wade equated
personhood with viability, the jury thought it had to determine whether Evonne’s
fetus had been viable.

The Supreme Court had said only that viability is “usually” placed at 24 to
28 weeks, not that viability necessarily falls within that range. It had not specified
how to determine the viability of a late-term fetus. If Evonne’s fetus wasn’t viable,
no person had been killed; and if no person had been killed, no manslaughter
charge could be brought.

Edelin testified that his operation on Evonne had seemed long to Giminez
because her thick abdominal wall had not yet stretched enough to sever easily.
Considered safer than vertical incisions and to leave less scarring, Edelin made a
Pfannenstiel (“bikini”) incision. Surgeon William Nolen wrote that making such an

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Chapter 4 Abortion: The Trial of Kenneth Edelin 87

incision could not take three minutes.6 Edelin testified that Giminez confused his
initial abdominal incision with his second incision to detach the placenta.

Flanagan showed the jury a picture of the fetus. Homans objected angrily,
arguing it would inflame the jury and prove nothing about viability. Judge
McGuire allowed it, but charged the jury with not viewing it “from any emotional
point of view.”7

Flanagan concluded that when Edelin cut the placenta, the fetus had been
viable and hence was a person; Edelin had waited three minutes and this delay
constituted “wanton, reckless conduct”; finally, the goal of legal abortion was not
to produce a dead fetus but merely to end a pregnancy, so Edelin should have saved
the viable fetus before cutting its placenta.

Judge McGuire instructed the jury that an unborn fetus was not a person and
could not be the subject of a manslaughter indictment. Such an indictment could
refer only to a person, defined by Massachusetts law as a baby—a fetus that has been
born. Because birth was critical, Judge McGuire instructed the jury, “You must be
satisfied beyond a reasonable doubt . . . that the defendant caused the death of a
person who had been alive outside the body of his or her mother.”

So the jury had to decide: (1) Had Evonne’s fetus been alive outside Evonne’s
body? (2) If so, did the baby die as a result of “wanton, reckless conduct” by Edelin?
The jurors said “yes” to both points and convicted Edelin of manslaughter.

Judge McGuire sentenced Edelin to a year of probation. If this conviction had
stuck, Edelin would have lost his medical license. While Edelin appealed, Boston
City Hospital immediately offered him a permanent position.

In 1976, three years after Evonne’s surgery, the Massachusetts Supreme Court
overturned Edelin’s conviction, declaring that the district attorney had presented
no evidence of criminal negligence and writing, “In the comparative calm of appel-
late review, the essential proposition emerges that the defendant had no evil frame
of mind, was actuated by no criminal purpose, and committed no wanton or reck-
less act in carrying out the medical procedures on Oct. 3, 1973.”8 The Court did
not require a new trial but simply acquitted Edelin.

Upon hearing of his acquittal, Edelin was “jubilant.” He said, “It’s great to be
able to smile again after two-and-a-half years.”9 Television anchor Walter Cronkite
that evening triumphantly announced that Edelin had been acquitted of “man-
slaughter by abortion.”10

William Nolen, a surgeon who examined the case in his book The Baby in the
Bottle, concluded that the fetus had not been outside the womb, so it had not been
born and thus no manslaughter charge had been warranted.11 Nolen’s conclusion
was made not only as a surgeon but also as someone who opposed abortion.

For the ethics of abortion, Nolen believed that Edelin had intended to abort a
late fetus and once he had opened Evonne, he was surprised to find her fetus viable.
Nolen doesn’t say that Edelin suffocated the fetus, but he does say that whether a
newborn has a will to live can be known only if the physician takes it out of the
womb, slaps it, and helps it to breathe:

What is disturbing in the Roe case is that, by his own admission, Edelin made no
attempt to see if the child had that spark. As [Jeffrey] Gould [another physician
who testified] said, the will to live isn’t always immediately apparent; it becomes

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obvious only if “the physician will try to stimulate, will try to give a little bit of
oxygen, and look for a favorable response.” . . .

The Roe baby wasn’t given this bit of provocation that might—just might—have
shown it had the will to live. Why? The answer is distressingly simple. No one
wanted the Roe baby to live.12

For the next three decades, both Newman Flanagan and Edelin worked in
Boston: Newman, as one of the longest serving district attorneys in America; Edelin,
as chair of OB/GYN at Boston City Hospital and associate dean at Boston University
School of Medicine. He later became Chairman of the Board of Planned Parenthood
Federation of America. As an adult, he learned that his grandmother had once
needed to terminate a pregnancy and that she had obtained the abortion “some-
where in the woods of Washington, D.C., lying on the ground.”13

In 2013, another African-American physician, Kermit Gosnell was sentenced to
life in prison for the death of a patient under his care and the deaths of seven
newborns said to have been born alive after attempted abortions.14

BACKGROUND: PERSPECTIVES ON ABORTION

The Language of Abortion

This book will use medically accepted terms for the stages of a human life. When
sperm meets egg, conception starts an embryo; after nine weeks and until birth,
this being is a fetus and at birth is a baby.

Definitions of these terms have legal and ethical consequences. For example, a
baby can be the subject of a homicide charge but not a fetus. Critics of abortion
object to the connotation of “fetus” as a being containing less value than a baby
and refer to the growing fetus as a “baby.”

Abortion and the Bible

Without interpretation, the Bible or the Torah do not explicitly forbid abortion. In
this regard, Paul Badham, a British professor of church history, writes:

The Bible certainly teaches the value of human life, and forbids the murder of
any human being (Psalm 8). But life, in biblical terms, commences only when
the breath enters the nostrils and the man or woman becomes a “living being”
(Genesis 2:7). . . . Consequently in biblical terms the fetus is not a person. This
is brought out clearly in the laws relating to murder. . . . For whereas “whoever
hits a man and kills him shall be put to death” (Exodus 21; 12), “. . . if some men
are fighting and hurt a woman so that she loses her child, but is not injured in
any other way, the one who hurt her is to be fined.” . . . And this absence of
concern for the fetus is also implied by the imposition of the death penalty on
women who conceive out of wedlock, without any consideration being given
to the fact that this killed both the fetus and the woman (Deuteronomy 22:21,
Leviticus 21:9, Genesis 38:24).15

Jesus never explicitly speaks about abortion anywhere in the Gospels.16 If the Old
Testament or the Gospels do not explicitly condemn abortion, why do so many

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conservative Christians condemn abortion today? An answer comes from the
development of Church doctrine.

The Old Testament took its final form during the fifth century Before the Com-
mon Era (B.C.E.) and the New Testament was finalized around the year 200 of the
Common Era (C.E.)—when Christianity began as an organized religion. As an orga-
nized religion, Christianity always opposed abortion, but its view of abortion has
changed over 1,800 years.

By the fourth century C.E., Christian teaching about sex was in crisis. Christi-
anity idealized celibacy, but if too many Christians were celibate, Christianity would
die out (as the Shakers did). Practically, most people could not practice perfect
celibacy. Consequently, Augustine revised Christian teaching in the fourth century
to allow sexual intercourse in marriage, but only if the couple intended to have chil-
dren.17 It follows for Augustine that abortion is sinful, because it thwarts the only
justification for having sex: to produce a child.

In the twelfth century, Christian doctrine began to separate abortion from homi-
cide by distinguishing between “formed” and “unformed” embryos. The concept
had to do with the soul rather than with physical development.

In the thirteenth century, St. Thomas Aquinas held that God ensouled male
embryos at day 40 of gestation, female embryos at day 90. Aborting a male embryo
after day 40 was punished more severely than aborting a female embryo at the same
age, since the male was formed but the female was not. Although abortion at any
time was sinful, penalties increased when the fetus was formed.18

During the nineteenth century, scientific evidence discredited the Thomistic concept
of ensoulment. Microscopes revealed life at tiny stages, including human life. Around
1850, popes began denouncing abortion in increasingly absolutistic terms. During this
time, Catholicism came close to teaching that personhood began at conception, a view
called immediate animation. (Over the last 30 years, the Church has moved closer to
immediate animation, especially with its emphasis on the value of the human embryo.)

In 1870, Pope Pius IX resisted the growing power of science by convening the
First Vatican Council. It declared that his edicts and those of future popes would
be infallible.19 From 1869 to 1900, the Church encouraged veneration of Mary
(which had been neglected), supported Creationism against geological explanations
of the origins of the earth, emphasized miracles (Fatima was recognized shortly
afterward), and vigorously attacked Darwinism.

In Catholic ethics, the doctrine of double effect allowed abortions for two cases:
ectopic pregnancy and uterine cancer (in which the uterus and fetus must be removed
together). According to this doctrine, an action having two effects, one good and the
other evil, is morally permissible under four conditions: (1) if the action is good in
itself or not evil; (2) if the good follows as immediately from the cause as from the
evil effect; (3) if only the good effect is intended; and (4) if there is a proportionately
grave cause for performing the action as for allowing the evil effect.

Historical Catholic doctrine was stricter than the law. During the seventeenth
century, European common law did not indict women for aborting even a quickened
fetus. Finally, in 1803, an English statute made abortion of a quickened fetus a
capital crime.

From the seventeenth through the nineteenth centuries, American law followed
English common law: Abortion before quickening was only a misdemeanor. In 1973,

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in its Roe v. Wade decision, the U.S. Supreme Court reviewed the legal background
of abortion and concluded:

It is thus apparent that at common law, at the time of the adopting of our Consti-
tution, and throughout the major portion of the nineteenth century, . . . a woman
enjoyed a substantially broader right to terminate a pregnancy than she does in
most States today. At least with respect to the early stage of pregnancy, and very
possibly without such a limitation, the opportunity to make this choice was present
in this country well into the 19th century.20

This leniency changed after the Civil War, when most states criminalized abortion.
The American medical profession opposed abortion from 1870 to 1970.

Historians argue that this opposition stemmed from paternalism, misogyny, and
protection of professional turf by male physicians: “Anti-abortion legislation was
part of an anti-feminist backlash to the growing movement for suffrage, voluntary
motherhood, and other women’s rights in the nineteenth century.”21

Before the Civil War, midwives delivered most babies, and in doing so, they
competed with physicians. After this war, male physicians took over deliveries. So
bans on abortions both drove out midwives and helped medicalize birth.

The Experience of Illegal Abortions

Before the Supreme Court legalized abortion in 1973, women undergoing abortions
had it bad. Physicians performing abortions usually did so only for money; some
demanded sex. Others lectured women on their promiscuity.

Though abortion is painful, abortionists didn’t use anesthesia. Abortionists
didn’t explain to women beforehand what would happen or why. If damage occurred,
women had no legal recourse. Women usually didn’t know the names of abortionists,
who forbade further contact. Illegal abortions cost a lot, condemning poor women
to unwanted children. (And still may be costly: In 2009, a legal abortion at 10 weeks
of gestation cost an average of $450, with 60 percent of women paying for it with
cash or credit card and not including costs of getting there; 28 states require a
woman to wait 24 hours between being informed of risks of the procedure, increas-
ing costs for women traveling from other areas.22)

Despite these conditions, during the 1950s and 1960s, hundreds of thousands
of American women had illegal abortions. Some died as a result: 193 died in 1965
alone, and over 1,000 during the 1960s.23 In contrast and in 2007, the most recent
year for the Centers for Disease Control reporting data, abortion clinics reported
that only six women died from consequences of legal abortions.24

Because what they had done was illegal, victims of botched abortions entered
emergency rooms only at the last moment. Some died of widespread abdominal
infections, and those who recovered often were sterile. Poor women of color ran
the greatest risks; in 1965, 55 percent of abortion-related deaths were among them.

1962: Sherri Finkbine

In 1962, Sherri Finkbine, living with her husband and their four children in Phoenix,
Arizona, became pregnant with a fifth child.25 During her second month of

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pregnancy, she took thalidomide, an antinausea drug (also marketed in Germany as
a sedative). It was just becoming apparent then that thalidomide is a teratogen (“mon-
ster former”) that produces babies with missing arms or legs. (Thalidomide had been
tested on animals but not on pregnant animals. The tragedies it caused made the FDA
(Food and Drug Administration) test all future drugs on pregnant animals.)

Sherri Finkbine requested an abortion at a local hospital, ostensibly for her
health, but really to abort a fetus likely to be born without arms or legs. However,
the district attorney threatened to prosecute the abortion, so she flew to Sweden,
where therapeutic abortion had been legal since 1940. Swedish physicians then
aborted her fetus, which was severely deformed.

The case caused many people to demand legalized abortion. In the years pre-
ceding Roe v. Wade, 18 states liberalized laws about abortion. Hawaii began in 1970,
followed by Colorado, North Carolina, and California. Governor of California, Ron-
ald Reagan, signed its bill into law.

1968: Humanae Vitae

In 1968, five years before Roe v. Wade, Pope Paul VI issued his encyclical Humanae
Vitae that declared use of birth control to be a sin. The edict startled liberal Catholics
and drove them to defy church teachings. A quarter of a century later in 1993, Pope
John Paul II vigorously defended Humanae Vitae and its ban on birth control.26

The 1968 encyclical had an unintended effect: When they were not allowed to
teach about contraception at Catholic University in Washington, D.C., Catholic
priests Warren Reich, Albert Jonsen, William Curren, and Paul Tong, who later
married Rosemarie Putnam, current bioethicist Rosemarie Tong, left the priesthood
and Catholic universities. These apostates became founders of bioethics, a field that
tries to teach both sides of moral issues.

1973: Roe v. Wade

The decision of the U.S. Supreme Court in Roe v. Wade (1973) concerned “Jane Roe”
(Norma McCorvey) from Dallas, Texas. Wade was Henry Wade, district attorney of
Dallas County. When this case began in 1970, Norma wanted a safe, legal abortion
and could not get one in Dallas County, so she challenged the Texas law. (She later
recanted, becoming antiabortionist.)

The Supreme Court had already decided in Griswold v. Connecticut (1965) that
the Constitution’s implied right to privacy or liberty allowed couples to receive birth
control pills. The Court also saw this entitlement in 1942 in Oklahoma v. Skinner,
which noted a fundamental right to reproduction and control of one’s body in
blocking a law allowing involuntary sterilization of habitual criminals.

In Roe v. Wade, it decided that the same liberty included the right of a woman
to decide whether she wanted to stay pregnant or to abort her fetus, or, put differ-
ently, whether a state could pass a law prohibiting such abortions, which most had
previously done.

This new right was not unqualified. A woman’s right to abort her fetus was
balanced against the rights of the fetus to live, which expanded as its gestational
age increased. The Court decided that the state’s interest in protecting unborn life

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becomes compelling at viability, such that after that point, their interest in protect-
ing unborn life allows states to pass laws banning most abortions.

In 1973, in Roe v. Wade, the Court used a trimester system to mark viability,
where viability divided the second from the third trimester of fetal development.
The Court defined viability as the point when a fetus is able to live outside the
mother’s womb. It placed viability between 24 and 28 weeks. A later decision by
this Court ignored the trimester system but retained viability as the key marker.

Note two things: first, a state may forbid abortion during the third trimester,
but need not. Second, even if states pass laws forbidding abortions in that trimester,
exceptions must be allowed to preserve the life or health of the mother.

Antiabortionists argue that this permission constitutes a loophole justifying any
abortion. Two physicians can often be found who will say that continuing the preg-
nancy would endanger the mother’s health.

Abortion Statistics

After abortion became legal, American women had about 1.5 million abortions per
year, a figure that remained steady for a decade.27 During the past decades, the
number has steadily dropped. The exact number of abortions per year is controver-
sial. The Centers for Disease Control is required by federal law to track this number
and states that in 2012, the figure in America had dropped to slightly less than
700,000.

ETHICAL ISSUES

Edelin’s Actions

Edelin waited a long time before he removed Evonne’s fetus. Even if he was inno-
cent of any legal charge, were his actions ethical? As Nolen said, all he had to do
was remove it, slap it on the bottom, and it would have lived. If it had trouble
breathing, he could have given it oxygen or technical assistance.

The baby may have been healthy and someone may have adopted it. If Evonne
had wanted the baby and the baby had been born premature at this time, Edelin
certainly would have done everything to keep it alive. Should a life be so precari-
ously valued merely because a teenage mother doesn’t want it? Because a physician
won’t take it out of the womb and slap its bottom?

Personhood

What is a person? With abortion, some philosophers draw a distinction between a
person and a human being. They argue that although a fetus is human, it does not
meet certain criteria of personhood and that since a fetus is not a person, it does
not have a right to life. In this sense, human is a factual term, whereas person is an
evaluative term.

The late Mary Anne Warren defends a cognitive criterion of personhood.28 Accord-
ing to her, to be a person is to be able to think, to be capable of cognition. What
separates a person from a rat is certain capacities—for reasoning, self-awareness, use

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of language, agency, and consciousness. Warren claims that none of these capacities
alone is sufficient for cognition; rather, these capacities as a group define the core
criterion. A being lacking all of these capacities fails to be a person. So a first tri-
mester fetus (when most abortions are done) for her is not a person.

The cognitive criterion may be both too broad and too narrow. It seems to admit
some beings that we don’t traditionally regard as persons: Some chimpanzees com-
municate, are conscious, may reason, and may be self-aware, yet we don’t ordinarily
consider them persons. (Perhaps, though, we are prejudiced against chimpanzees
and the cognitive criterion should make us reconsider our views.)

The cognitive criterion may also be too broad if it implies that society should
not protect human beings in the late stages of Alzheimer’s disease, permanently
comatose patients, or anencephalic babies. Philosophers such as Peter Singer argue
that such beings are not persons and do not deserve special protection.29

Personhood as a Gradient

Why does personhood have to be all-or-nothing? In practical reasoning, the all-or-
nothing fallacy consists of treating complex issues as if they have only two simplistic,
extreme answers when in fact there are many compromises in between. Often,
practical solutions reside not on opposite poles but in areas in the middle.

Biologically, we know that the human embryo develops by degrees during the
first trimester into a fetus, and then over the next trimester, the fetus grows into
viability, and finally, during the last trimester, into a baby. No single event or day
along this nine-month journey marks the day of personhood. The most accurate
view is that personhood accumulates by degrees over time.

On this view, a 2-year-old is more of a person than a newborn baby, and a
26-year-old at the height of his or her powers and health is more of a person than
a 2-year-old. If personhood depends on capacities, then a human at maximal capac-
ities is more of a person than a human with few capacities.

At the end of life, people lose personhood by degrees, especially with diseases
that rob them of their minds. A 90-year-old man who once had an IQ of 140 is only
“half the man he once was” at age 90 with initial Alzheimer’s and an IQ of 70.

We think of personhood as all-or-nothing for two reasons. First, some people
believe that a metaphysical event occurs in which human bodies get ensouled or
where a soul departs. Before that event, there is no personhood and no moral value,
and after that event, there is.

Second, people confuse personhood with moral concern. If granddad with Alz-
heimer’s at 90 is only half the person he once was, that does not mean we owe him
only half of our previous concern. Indeed, humans who have lost their former
capacities may need more concern than those at maximal capacity. Who is a full
person differs from whom we care about.

That’s also true for nonhuman animals. Some of them may function in families
as only semi-persons, but they may be as high on our scale of concern as are our own
children.

In biology, humans evolved on a gradient by degrees from other primates, and
primates in turn from lesser organisms. In biology, all life is an evolving continuum,
connected by common ancestors and by degrees, not huge leaps.

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Nevertheless, the gradient may raise as many problems as it solves. If end-stage
Alzheimer’s patients have lost 99 percent of their cognition, should they be killed?
If baboons share 99 percent of their genes with humans, should they be protected
as persons?

The Deprivation Argument: Marquis and Quinn on Potentiality

If we accept the cognitive criterion, a problem arises. If cognition makes people
valuable, is it wrong to deprive beings of potential cognition?

Philosophers Don Marquis and Warren Quinn argue this way. They start with
two premises: first, what is wrong about killing a person—such as a college student—
is depriving him of future cognitive experiences; second, what is wrong about killing
an adult matches what is wrong about killing fetuses.30

This deprivation argument is an interesting one, and many people accept their
first premise. Other explanations of why it is wrong to kill persons—that killing
violates peoples’ rights, for instance, or that killing is against God’s will—beg the
question: Phrases such as “violation of rights” and “against the will of God” are
simply other ways of saying that killing is wrong.

As for the second premise, it does seem that what is wrong with killing a com-
petent, adult human is depriving an adult who strongly desires to go on living.
Assume his family strongly desires this too. Killing him thwarts the desires of all
these people. Moreover, because almost everyone in society wants to continue liv-
ing, the murder of anyone threatens us all, making us fear for our lives.

But let’s analyze the second premise: Can a being like an early fetus, without
an already existing self or identity, have a personal future of which to be deprived?
Marquis’s and Quinn’s second premise may be vulnerable.

Consider an analogy: Imagine an omnipotent deity—God—who creates a uni-
verse and considers creating a second parallel universe but then decides against it.
Now imagine a powerful evil force—Satan—who wants to destroy the existing uni-
verse. It seems that destruction of the existing world by Satan would be wrong; but
it does not seem wrong for God to refrain from creating a second world. Although
God has disallowed a vast amount of cognitive experiences in the parallel universe,
he has neither done any wrong nor wronged any person in not creating it. In the
same way, failing to allow the potential cognition of a human 10-week embryo to
come into existence wrongs no existing person.

Could you imagine yourself as an embryo and feel sad because you have had
been aborted and not come into existence? No, that is not fair. It puts one’s self
erroneously into the picture when, by definition, that self will never exist.

What about contraception or masturbation? This objection is intended as a
reductio ad absurdum of the idea that we should bring into existence beings with
future cognitive experiences. As either of these prevents potential persons from
coming into existence, are they wrong? Probably not. They seem to be a straw
man—a false opponent, too easily refuted. No antiabortionist wants to produce bil-
lions of extra people and once conception occurs, things do seem different as a
distinct human life has started.

Indeed, pro-life champions see each particular person as valuable from concep-
tion. Federal Judge John Noonan advocates a genetic criterion of personhood and

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Chapter 4 Abortion: The Trial of Kenneth Edelin 95

argues that when sperm and egg meet and merge genes, a genetically unique
individual is created. The resulting embryo has all the potential in its DNA to be a
full person, provided that it finds a nurturing uterus.31 This seems to be the root
idea behind the objection to using human embryos in medical research or using
them as little factories to make embryonic stem cells (see Chapter 6).

But is potential to become a person the same as being a person? What about the
thousands of frozen embryos stored around the world? If some woman doesn’t
adopt them and implant them in her uterus, they will eventually deteriorate and
die. Do we allow thousands of “persons” to die by not adopting them?

Another problem with the genetic criterion is that it collapses the distinction
between being human and being a person—as we realize when we consider that a
brain-dead human has a unique set of genes. Moreover, through human cloning,
99.9 percent of his genes could be replicated one day, and would that imply that
he has been 99.9 percent resurrected? That’s unlikely, because what most of us want
by immortality is not for our genes to continue but for ourselves to do so, that is,
our memories and our present desires that exist in that bundle of perceptions we
call “ourselves.” So these implications seem to be a reductio ad absurdum of the
genetic criterion.

A third possible criterion for personhood might be called the neurological crite-
rion. This minimal version of the cognitive criterion defines a person as a human
being with a detectable brain wave. This simple standard applies to many issues of
medical ethics; it recognizes as persons both quasi-anencephalic babies and adults
in persistent vegetative states. The neurological criterion would consider a fetus a
person after it develops brain waves at about 25 weeks.

Viability

The concept of viability is vague. A vague concept is one with no sharp boundaries,
for example, baldness. When does viability begin? In Roe v. Wade, the Supreme
Court said only that viability is “usually placed” at about 28 weeks, but “may occur
earlier, even at 24 weeks.”

In Edelin’s trial, District Attorney Newman Flanagan seized on this vagueness
and tried to establish that Evonne’s fetus had been viable. One antiabortion physi-
cian testified that a 12-week-old fetus could live outside the womb. But for how
long? Only a few minutes, the physician answered.

The defense attorney, William Homans, countered by asking the physician how
he defined viability; the witness replied, [viability is the] “capacity to survive [out-
side the womb] even for a second after birth.” Homans got several obstetricians to
admit that they had never known a fetus to survive for even a few days outside the
womb before 24 weeks of gestation.

Remember that legally, viability didn’t matter in this case. Even if Evonne’s fetus
was viable, if it didn’t exist outside the womb, no charge of manslaughter could be
brought.

On the other hand, legality isn’t ethics. Viability matters a lot to ethics. It’s one
thing to abort a tiny fetus at 13 weeks with no chance of living on its own; it’s quite
another at 24 or 26 weeks when continued life is possible. That’s one reason why
many physicians refuse to perform late-stage abortions.

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Edelin’s critics knew exactly what was meant by viability: the ability to survive
independently of the mother. In reality, some fetuses that are born early are not
viable: They will die no matter how hard physicians try to keep them alive. Others
will survive and will do so only if given the chance.

To Edelin’s opponents, the point was that he had never tried to determine via-
bility. His supporters replied that he had not tried because the whole point of abortion
is to kill a fetus. The point is not to look inside the uterus, see if the fetus is viable,
and if it is, rescue it.

The Argument from Marginal Cases

In the Edelin case, one question that arose was, “Where do you draw the line?”—that
is, the line between fetuses which may and may not be aborted. Reasoning based
on this kind of question is called the argument from marginal cases, and it is one of
the most widely used ideas in ethics.

With abortion, the argument from marginal cases is as follows: Beings at the
margins of personhood cannot be nonarbitrarily distinguished from those at the
core. If it’s wrong to kill a newborn baby, it’s wrong to kill it the day before it’s
born, and so on, being wrong to kill the growing being anytime after conception.

This argument can be used against the gradient of personhood. Where pro-
choice advocates say an embryo is not a baby, antiabortionists point to the smooth
continuum and say there is no place to draw the line. No matter what week of
gestation we consider, it is arbitrary to make that week the marker of personhood,
because the fetus of a week earlier has almost the same qualities. Whatever time or
marker is chosen, someone can always ask: Why not choose the week before or
after? (This reasoning also drives conceptual slippery slopes.)

Is the argument from marginal cases a good one? Consider an analogy with the
color spectrum: Although each shade in the spectrum resembles the shades next to
it, we can distinguish widely separated colors. Similarly, a full-grown oak tree differs
from an acorn, even though an acorn becomes an oak by continuous growth. Sim-
ilarly, we can distinguish an 8-cell human embryo from a newborn baby. Marginal
cases do not make distinctions impossible.

In Roe v. Wade, the Court said that in the first two trimesters, the interests of
competent adults to control their bodies outweigh the growing interests of fetuses
to live. But it could have equally stressed a continuum of development from embryo
to birth, such that fetuses have some rights in the second trimester, such that only
very strong reasons justify abortions then. Especially with abortions available now
in the first trimester, and with genetic screening available then for many common
conditions, late-second trimester abortions seem less justified, especially as the fetus
has more of those qualities that make it a person.

Thomson: A Limited Pro-Choice View

Suppose we admit that the fetus in the Edelin case was a person. Does it follow
that killing it was immoral? Philosopher Judith Jarvis Thomson says, “No.”32

Imagine you have been admitted to a hospital for an operation and awaken to
find yourself hooked up to a famous violinist. His kidneys have failed and his blood

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is entering and leaving your body through tubes. Without your permission, your
kidneys have been used to keep the violinist alive.

Thomson famously argues that it is immoral for the hospital to force you to keep
the violinist alive. Although it would be saintly of you to agree to stay, you are not
obligated to do so. Why? You did not consent to have your body burdened this way;
no one else has a right to force you to use your body to keep another person alive.

Just as the violinist cannot demand as his right that you keep him alive by
allowing your kidneys to be used, so a fetus has no right to demand that a woman
keep it alive. For Thomson, the most telling case is rape, because a rape victim has
not consented to sexual intercourse or conceiving a child. She thinks a similar
argument applies when a woman has used contraception responsibly but it fails.

Thomson’s argument is an example of reasoning by analogy. The violinist’s
dependence on the other patient is analogous to the fetus’s dependence on the
mother. In analogical reasoning, the closer the fit between the two things compared,
the stronger the inferred conclusion is supported.

Philosopher Frances Kamm objects to Thomson’s analogy. Kamm argues that
the dialysis patient can simply detach herself and that such detachment is not like
killing a fetus. Since something active must be done to end a fetus’s life, for a proper
analogy, Kamm says, imagine the violinist blocking the patient’s way out of the
room so that the patient could escape only by cutting up the violinist.33

The above arguments suggest abortion as self-defense. In the sixteenth century,
theologian Thomas Sanchez used Augustine’s doctrine of just war to identify an
unwanted embryo growing in a fallopian tube as an unjust aggressor against the
mother’s life. So Sanchez maintained that a mother could kill such a lethal embryo
in self-defense.34

Feminist Views

One feminist writer argues that the key question about abortion is whether women
should be forced to bear children in a way in which men are not. If an embryo is
a person who has a right to life at the mother’s expense, then women will always
be potential slaves of biological reproduction:

With all the imperfections of our present-day attitudes, I’m still a lot better off in
terms of the sexual choices I have than women of my mother’s generation. I was a
lot better off after the sixties than I was before then. What sexual freedom I now have
has been very hard-won. I wouldn’t give it up for anything. . . . There is a larger crisis,
one that has to do with the tensions between feminism and the backlash against it.
On the one hand, society is encouraging sexual freedom; on the other hand, it’s
punishing people for indulging in it and not emotionally preparing them for it. Both
women in general and teenagers in particular are caught in the middle.35

Genetic Defects

Genetic testing of embryos and fetuses can reveal worrisome future genetic condi-
tions in babies, such as cystic fibrosis, Tay-Sachs disease, sickle cell anemia, Down
syndrome, and spina bifida. Medicine now allows testing in the first trimester of
fetal development, allowing abortions at the usual time after a positive result.

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98 Chapter 4 Abortion: The Trial of Kenneth Edelin

Some people regard such a result as the most legitimate reason for abortion;
others fear that such results will create a stealth eugenics movement.

God Must Want Me to Be Pregnant, or Else I Wouldn’t Be

Some people believe that each human pregnancy happens for a reason. Each human
embryo that has been conceived and survived to implant itself in the uterine wall
was meant by God to have been created at this place and time. Any interference
with the growth of that embryo would thwart God’s plans. As one sometimes hears,
“God must mean for me to be pregnant, or else I wouldn’t be.”

Two replies can be made to this view. First, how does a woman know God’s
will about a particular pregnancy? Unless God speaks to her directly, how can she
just assume that planning when to have children is not God’s will for her? How does
she know that God does not want her to do what she believes will be best for her,
now and in the future?

Second, such a view is fatalistic in one’s personal relation to God. It seems
reasonable to ask, “Why must I accept everything that happens? If everything comes
from God, doesn’t the choice to have an abortion also come from Him? Why make
the fatalistic assumption that one can follow God’s will only by accepting preg-
nancy? Why can’t a reasoned choice to have an abortion also reflect God’s will?”

A Culture of Life or a Culture of Death?

By 2016, after 43 years of legalized abortion, and with at least 700,000 abortions on
average a year, American women had aborted at least 54 million human fetuses.
Worldwide, the figure is probably a billion. Pro-life champions argue that such a
tsunami of abortions has created a “culture of death,” one that has encouraged the
legalization of assisted suicide for terminally ill patients in several states.

As noted in earlier chapters, it is easy to push a false autonomy that masks
underlying scarcities for the disabled or lack of treatment of symptoms for the
dying. Too often, death seems the easy way out. Is this true, too, with abortion?

Take the Edelin case. The doctor did not have to produce a dead baby. He could
have saved the viable fetus and Evonne could have given it up for adoption. She
had a right to end her pregnancy, not to a dead fetus.

Since World War II, America has had no great crisis such as a world war or
a great depression, but that may change in the future. Is our culture ready? If
millions of baby boomers need long-term care, will the culture help them or urge
them to take an early final exit? Has society’s pendulum swung too much toward
death?

Suppose, for the last 50 years, no opposition to abortion had existed. What might
have happened? Abortion would be much more easily available, with perhaps every
small city having a clinic and competition bringing down prices. Instead of 54 million
abortions, we might have had 300 million. Would that have been a good thing?

Catholicism, conservative Protestantism, Islam, and Orthodox Judaism oppose
the easy availability of abortion. Are they not right to say, “This involves who we
are and we must oppose this?” Aren’t hospitals affiliated with such religions within
their rights not to provide abortions? As such, shouldn’t they oppose abortion as
good citizens? Just as Jews are horrified that so many stood by passively when

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Chapter 4 Abortion: The Trial of Kenneth Edelin 99

6 million Jews went to death in concentration camps, shouldn’t others be horrified
that 54 million fetuses never got a chance to live?

On the other hand, perhaps all these should be seen in a wider context. The
world is overpopulated. Extra people pressure the environment with more mouths
to feed, more cars emitting noxious gases, and more consumption of scarce water.
Suppose contraception was still banned. Then 1 billion more people would exist.
Would that be a good thing? All unchosen, unwanted? Yes, contraception and abor-
tion prevented many people from coming into existence—prevented, as Marquis and
Quinn would say—many future cognitive experiences from existing, but is that really
all bad?

Abortion and Gender Selection

Gender selection-plus-abortion has been a problem in countries such as China, the
Republic of Korea, and India. For centuries, parents there have seen females as less
desirable than male children. Using sonograms, many families aborted female
fetuses to try again for a male child.

Because X chromosomes weigh more than Y chromosomes, a flow cytometer can
separate heavier from lighter sperm, producing accurate results 90 percent of the
time. Although intended for use in pre-implantation genetic diagnosis, this technol-
ogy may be used to select male babies, making gender selection cheap and easy.

Despite laws that ban testing for sex in India and China, at least 160 million
females there are missing. After decades of such practices, in China, in 2012,
never-married men outnumbered their female counterparts 124 to 100.36 In 2016,
1 million excess Chinese males cannot marry. Both Northern India and China con-
tain large bands of young men who will never marry, leading to social discontent
in societies where marriage, family, and children are highly valued.

Sex selection is sexist and leads to imbalances of the sexes in the population. Iron-
ically, this has led existing Chinese women to be very selective about who they marry.

Abortion as a Three-Sided Issue

Many people living in a tolerant democracy, where individual liberties are res-
pected, fail to understand how they got where they are or to understand the larger,
worldwide picture. In the United States, they forget that our modern policy of
individual rights and personal liberty represents a hard-won victory that citizens of
many other countries never achieved.

For instance, in China, if they become pregnant before their mid-20s or after
they already have a child, beginning in 1979—when the government imposed a limit
of one child per family—thousands of women underwent forced abortions—a prac-
tice that continued until 2015. In Romania, dictator Nicolae Ceaușescu (1965–1989)
denied millions of women contraception or abortions wanting a larger population
but resulting in thousands of unwanted babies dumped into state orphanages (more
about this in Chapter 9 on Medical Research on Vulnerable Populations).

Perhaps this ignorance explains why the media frame abortion as an issue with
only two sides: antiabortion versus pro-choice. In fact, the global picture of abortion
is three-sided, with two extremes and a compromise: forced birth versus forced abor-
tion, with individual choice as the middle ground.

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Antiabortion Protests and Violence

During the 1980s, two Texans attacked several abortion clinics in Florida. In 1984,
protestors bombed or burned 24 abortion clinics, including one in Pensacola that
took place on Christmas morning and was described by one conspirator as a “birth-
day present to Jesus.”37

By 1990, public opinion had turned against antiabortion violence. As a result,
the antiabortion movement turned to Operation Rescue, an organization founded
by Randall Terry in 1988. Modeling themselves on the nonviolent demonstrations
in the South during the Civil Rights Movement, protesters practiced civil disobedi-
ence in front of abortion clinics. During the 1990s, they picketed the homes of
physicians who performed abortions.

Some killed to stop abortions. They killed physician David Gunn in 1993 as he
left an abortion clinic in Pensacola. In 1994, antiabortionist Paul Hill, a former
minister, killed physician John Britton and his security escort as they left an abor-
tion clinic in Pensacola. In 2003, Florida executed Hill for the murder.

In January 1998, an explosion rocked the campus at the University of Alabama
at Birmingham. Across the street at Ronald McDonald House and a block away
from a dorm, windows shook from the blast. When touched, a package outside the
small abortion clinic exploded, the dynamite inside causing hundreds of nails to
ricochet off a steel plate inside into the face, torso, and legs of Emily Lyons, a nurse
at the clinic, and killing Robert Sanderson, an off-duty Birmingham policeman. Due
to intense efforts a few blocks away at UAB hospital, Lyons survived.

An alert UAB student spotted Eric Rudolph leaving the scene and copied the
license number of his truck. Police searched for Rudolph for five years in the hills
of North Carolina. Arrested in 2003, he confessed in 2005 to bombing abortion
clinics in Birmingham and Atlanta, to bombing gay/lesbian nightclubs, and to
bombing the Centennial Olympic Park during the 1996 Olympics, where he killed
three people and injured 111 others. He is now serving life in a federal prison in
Colorado.

In 1998, antiabortionist James Koop crouched behind the backyard fence with
a high-powered rifle and shot Dr. Barnett Slepian through his kitchen window.
During the previous four years, snipers shot and wounded three Canadian physi-
cians. In 2009, physician George Tiller was killed in his church in Wichita, Kansas.
Both Slepian and Tiller had been targeted by antiabortion groups for decades and
had vowed not to stop providing abortions.

Live Birth Abortions and How Abortions Are Done

Attempts to abort late-term fetuses have sometimes resulted in live births. In 1977,
physician Ronald Cornelson testified in a California criminal court that after a
botched saline abortion resulted in a live-born 2.5-pound baby, his colleague William
Waddill had choked the infant and suggested injecting it with potassium chloride
to kill it.38 Tried twice for murder, both juries deadlocked on convicting Waddill. In
1979, at the University of Nebraska Medical Center, after an attempted abortion,
another 2.5-pound baby was born alive; purposefully left unattended, it died after
a few hours.

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Chapter 4 Abortion: The Trial of Kenneth Edelin 101

Because of such cases, physicians today rarely abort a fetus after 23 weeks. They
also rarely use prostaglandins to induce abortion because, although safer than suc-
tion or surgical techniques, they result in 30 times more live births.

For first-trimester abortions, the most typical technique was formerly injection
of saline or urea, followed by dilatation and curettage (scraping, a technique called
D&C), but D&C has been replaced by suction curettage or uterine aspiration. Phy-
sicians do most abortions in the first trimester.

For late-term abortions, dilatation and evacuation (D&E) is used: The fetus is
cut into parts and removed piecewise. To ensure that all the pieces have been
removed—since any fragments left behind would produce infection in the mother—
the dismembered fetus must be reassembled outside the womb. Late-second tri-
mester or third trimester abortions use hysterotomy, as in the Edelin case.

Because abortion is controversial, residency programs in obstetrics sometimes
offer no training in performing abortion. Some residents in obstetrics have demanded
such training.39

In 2005, a review of several hundred scientific papers concluded that nerve con-
nections in the fetal brain are not developed enough before 29 weeks for the fetus to
feel pain.40 As such, the authors concluded, aborting a fetus before this point caused
it no pain and no anesthesia need be used to spare the fetus pain.

Fetal Tissue Research

Tissue from aborted fetuses may help patients with neurological disorders such as
Parkinson’s disease. The tissue required for such neurological research must be adre-
nal tissue producing dopamine, and it must be obtained from fetuses whose gesta-
tional age is 8 to 11 weeks, since after 12 weeks the tissue begins to differentiate into
the normal cells of the brain and loses its elasticity. Treatment consists of dopamine
delivered as fetal cells: In the operation, a small hole is drilled through the patient’s
skull and fetal cells are dripped directly into the devastated area of the brain.

A panel of the National Institutes of Health studied this issue and concluded
that even if abortion were immoral, fetal tissue obtained from abortions could be
used for research if the woman’s decision to donate tissue was separated from, and
came after, her decision to abort.41 In 1993, President Clinton lifted the four-year
ban on fetal tissue research.

Emergency Contraception

In America, the traditional approach to preventing pregnancy has been either absti-
nence or contraception, with abortion as a backup. A middle ground exists between
these extremes, emergency contraception or “the day after pill.”

Emergency contraception has been used without publicity for 50 years in
America. It consists of taking a double dose of birth-control pills within 72 hours
after an act of unprotected sex, followed by a second dose 12 hours later.42 When
the first dose is taken within 72 hours after unprotected sex, emergency contracep-
tion reduces the risk of pregnancy by 75–90 percent.

Such pills contain estrogen and/or progesterone and block the release of the
egg from the ovary, block the movement of the embryo down the fallopian tube,
or prevent implantation of the embryo in the endometrium.

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102 Chapter 4 Abortion: The Trial of Kenneth Edelin

Emergency contraception requires a woman either to have birth control pills on
hand or to be able to obtain them 72 hours after unprotected sex. A woman cannot
wait for a pregnancy test because her urine changes chemically only after embryonic
implantation.

In 2006, the FDA approved Plan B, a progestin-only form of emergency contra-
ception, for over-the-counter sales to women over 18. In 2009, a federal judge
ordered the FDA to approve the same for 17-year-old women.

The American Medical Association defines pregnancy as beginning when the
embryo implants on the uterine wall. Others believe that pregnancy begins with
conception in the fallopian tubes, and as such refuse to prescribe IUDs (Intrauterine
Devices), which interfere with implantation.

In 2005, pharmacists at a Walgreens store in Illinois refused to fill prescriptions
for Plan B, considered to be an abortion agent.

Women physicians successfully sued Walgreens to make Plan B available at all
its pharmacies. Walgreens then fired pharmacists who refused to fill prescriptions
for Plan B, igniting a debate about conscientious refusal. This debate became moot
in 2013 when the FDA approved sale of Plan B without prescription for any woman
regardless of age. In 2015, birth control became available for women in Oregon over
the counter, and by the same year, half of American women with medical insurance
could get birth control without a co-payment.

Maternal versus Fetal Rights

In her 20s in 1989, Nancy Klein went into a coma at an early stage of her pregnancy.
Her physicians wanted to abort her fetus to increase her cerebral blood volume and
to awaken her. They were also reluctant to give Nancy certain drugs that might
injure a fetus brought to term. Antiabortionists went to court to block the abortion,
while Nancy Klein’s husband, Martin, pressed for it. Martin prevailed and physi-
cians aborted her fetus while protestors chanted outside. After 11 months, Nancy
emerged from the coma and now lives a normal life.

In 1985, Angela Carder in Washington, D.C., dying of a rare form of cancer, requested
chemotherapy and resisted a cesarean section to save her 26-week-old fetus. The baby
was delivered alive anyway, but died two hours later. Angela died two days later.43

Both cases raised the issue of who was the patient, the mother or the fetus.
Legally, the answer is clear. A fetus inside the womb is not a baby and not a person,
but the mother is a person, so her wishes rule. But ethically, things become murky if
either the mother is going to die or if the fetus is going to be born. But these “ifs”
are difficult to know in advance.

A flashpoint for maternal–child conflict concerns pregnant mothers using alco-
hol or illegal drugs. Fetal alcohol syndrome causes the most mental retardation in
children.44 Between 1987 and 1992, 160 women in 24 states were charged with
injuring a fetus during pregnancy by taking drugs such as cocaine.45

In 1993, the law tried to force Comelia Whitner to stop using cocaine for the good
of her fetus, forcing her to choose between mandatory drug rehabilitation and jail. The
South Carolina Supreme Court upheld the law in Whitner v. South Carolina (1997).

Critics said the law prosecuted pregnant African-American women using cocaine,
but not pregnant white women drinking alcohol, and claimed that prosecutors

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Chapter 4 Abortion: The Trial of Kenneth Edelin 103

exaggerated harm to fetuses during gestation from cocaine. The law’s defenders esti-
mated that 70,000 American women used cocaine while pregnant and agreed that
pregnant women abusing alcohol, whether Caucasian or African-American, should
also be prosecuted. Some wanted to prosecute smoking during pregnancy.

Viability

In 1983, Justice Sandra Day O’Connor predicted that medicine would push viability
“further back toward conception” and that the trimester system established in Roe v.
Wade would be on a collision course with itself. Her prediction has not come true.

Although medicine has made intense efforts to treat premature babies more
effectively, the consensus in neonatology is that “before 23 or 24 weeks, [the fetus]
simply cannot survive. And nothing that medical science can do will budge that
boundary in the foreseeable future.”46 The unsolvable problem is that even with a
respirator, the lungs are too immature to function earlier than at 23 or 24 weeks of
gestation, and certain essential organs, such as the kidneys, do not develop early
in pregnancy. This has also blocked development of an artificial womb.

This recently acknowledged fact weakens one argument against abortion.
Clearly, the argument from marginal cases must lose some of its force, since lung
viability has served for over 43 years as a practical indicator of viability and as a
mark of when a state can outlaw abortion.

In 1979, in Colautti v. Franklin, the Supreme Court made its major decision
about viability. It said that “the determination of whether a particular fetus is viable
is, and must be, a matter for the judgment of the responsible attending physician,”
thus precluding another case like Kenneth Edelin’s.

The Supreme Court Fine-Tunes Roe v. Wade

In the decades since Roe v. Wade, abortion-rights advocates have pressed for broader
protection and antiabortion forces have mounted legal challenges to the original
decision. All of these came to a head in 1992 with the Supreme Court’s decision in
Planned Parenthood v. Casey. The Court reaffirmed the “essential holding” of Roe v.
Wade, including “the right of a woman to choose to have an abortion before viability
and to obtain it without undue interference from the State.”47 This decision appeared
to say, “Here we stand on abortion, and we will hear no more cases challenging it.”
Since then, the Court turned down cases aimed at challenging Roe v. Wade. How-
ever, over the past decades, it has fine-tuned Roe v. Wade.

In 1976, in Planned Parenthood v. Danforth, the Court invalidated state laws
requiring a woman to get consent for an abortion from either a matrimonial or a
biological father. The Court held that such consent amounted to giving these men
a veto over the woman’s decision.

The Danforth decision also said that a state couldn’t pass a law giving parents
of teenage girls an absolute veto over a decision to have an abortion. Two later
decisions allowed a state, before a teenager’s abortion, to require the minor to
obtain the consent of one or both parents or required the clinic to notify one or both
parents. By 2006, 34 states had laws requiring a parent’s consent or notification
when minors sought abortions, although nine of those states did not enforce their

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104 Chapter 4 Abortion: The Trial of Kenneth Edelin

laws.48 Such laws had to have an escape clause where the minor could appeal to a
judge for an exception to parental notification or consent.

In Harris v. McRae (1980), the Court held that, although a woman has a right
to an abortion, she does not have a right to one at government expense. Congress
passed laws banning use of public funds for abortions for women unable to afford
them, and many states followed suit. Webster (1989) said that states may ban public
employees or public hospitals from performing abortions.

In Casey in 1992, the Court ruled that informed consent and a 24-hour waiting
period did not constitute an “undue burden” on women seeking abortions. Anti abor-
tionists said this change brought abortion into line with informed-consent requirements
for other surgical procedures. Pro-choice advocates pointed out that many surgical pro-
cedures would not occur if hospitals enforced a similar 24-hour waiting period.

As said, Casey signaled a pivotal affirmation of “the essential holding” of Roe v.
Wade that the right to abortion is grounded in the Constitution and a majority of
justices repeated what a previous Court had said in Eisenstadt v. Baird, “If the right
of privacy means anything, it is the right of the individual, married or single, to be
free from unwarranted governmental intrusion into matters so fundamentally affect-
ing a person as the decision whether to bear or beget a child.”

Partial Birth Abortions

Critics define as a “partial birth abortion” one that is performed in the third tri-
mester or especially just before birth. The phrase connotes the advanced state of
the fetus, and how, even on the gradient view, it is almost a person.

The rights of late-term fetuses arise in murders of pregnant mothers (e.g., Lacy
Peterson) and abortions in the late-third trimester. Killing a pregnant woman and
her child is a heinous crime, and to inflict greater punishments, people advocate
for a charge of double homicide. Similarly, few reasons justify killing a fetus after
eight months of gestation, and the methods to do so are grim and surgical.

Opponents of abortion hope that everyone can agree to protect fetuses from such
acts and push for changes to do so. Pro-choice advocates oppose such legal changes,
fearing a slippery slope to protecting the fetus from abortion at earlier stages.

State legislatures frequently have passed bills making such changes, but federal
courts have struck them down 18 out of 19 times.49 Why? Because a long legal
tradition has defined a baby as created at birth, not before, with only a criminal
charge being capable of being made against a baby, and courts have been reluctant
to overturn that tradition. To do so would be to go into territory where there is no
logical stopping point until before viability.

States Restrict Abortion Clinics

Faced with 35 years of defeats in federal courts, antiabortion activists focused on
state courts and state legislatures in closing abortion clinics. Activists pressured for
physicians performing abortions to have admitting privileges at a local hospital, an
almost impossible condition for clinics to fulfill because the physician performing
the abortions almost always does not live in the area (to avoid people picketing his
house or trying to shoot him). Many clinics closed in Alabama, Mississippi, North

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Chapter 4 Abortion: The Trial of Kenneth Edelin 105

Carolina, Pennsylvania, and especially in politically conservative “red” states, forc-
ing pregnant women to travel long distances to get an abortion, to wait 24 hours
and stay overnight to watch movies of movements of second-trimester fetuses, and,
in general, to make it more costly and emotionally traumatic to get abortions. Citing
the Kermit Gosnell case, opponents of abortions advocated Targeted Regulation of
Abortion Provider (TRAP) laws in 21 American states to try to force clinics out of
existence. Mississippi requires the doctor to be a board-certified OB/GYN.

In 2015, a group seeking to outlaw abortion, the Center for Medical Progress
(CMP), released videos that it secretly recorded using actors posing as representing
a biotechnology company interested in acquiring tissue from aborted fetuses and
talking to staffers from Planned Parenthood (PP). CMP alleged the videos showed a
“criminal conspiracy to make money off of aborted baby parts.” PP condemned CMP’s
allegations as false. The media extensively showed the videos and they featured prom-
inently in the fall 2015 debates among candidates for the Republican nomination for
president. In 2015, PP announced it would no longer accept reimbursement for fetal
tissue donations. On November 27, 2015, Robert Dear attacked a PP clinic in Colorado
Springs, killing a policeman and two civilians, wounding five other police officers and
four civilians, citing the video and calling himself “a warrior for the babies.”

Self-Administered Abortion by Telemedicine

Dutch physician Rebecca Gomperts used her Women on Web website to help the 40%
of women who live in countries (Latin America, Africa, Asia, and the Persian Gulf)
where abortion is either banned or almost impossible to get. In 2008, the World Health
Organization estimates that over 21 million unsafe abortions took place worldwide,
resulting in 47,000 deaths. Over 2,000 women a month email Gomperts and her staffers
at her telemedicine office in Amsterdam to find out how to end their pregnancies.

Gomperts helps women order pills of mifepristone and misoprostol from India
for $5 and sends them to the women with a tracking number, plus exact instructions
for taking the pills over 24 hours, with Dutch physicians monitoring everything that
happens via Skype and email. Female staffers help women taking the pills recognize
signs of trouble and tell them when, in emergencies, to seek medical help in their
own countries. (Treatment is the same as for a spontaneous miscarriage.)

In America, self-administered abortion-by-pills is growing in states that drive abor-
tion clinics out of business through TRAP (Targeted Regulation of Abortion Providers)
laws. After a brief, successful trial of telemedicine abortions in Iowa, Iowa Right to Life
got Republican governor Terry Blanshard in 2013 to shut it down. In 2014, the Amer-
ican Congress of Obstetricians and Gynecologists reviewed the evidence, concluding
that medical abortion by telemedicine could be “safely and effectively used.” With Plan
B now available in most American states without prescription for even teenage girls,
getting support while taking such pills with supportive women via the Internet may
create a wave of do-it-yourself abortions in the privacy of women’s residences.

In June 2016, the U.S. Supreme Court struck down Texas TRAP laws, ruling
5 to 3 that the laws were not intended to protect the health of women but to deter
women from getting abortions. As such, Justice Ruth Ginsburg wrote, TRAP laws
often constituted an “undue burden” on women seeking abortions and hence were
unconstitutional.50

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106 Chapter 4 Abortion: The Trial of Kenneth Edelin

FURTHER READING

Emily Bazelon, “The Dawn of the Post-Clinic Abortion,” New York Times, August 28, 2014.
Kenneth Edelin, Broken Justice, Martha’s Vineyard, MA: Pond View Press, 2007.
Rachel Benson Gold and Elizabeth Nash, “TRAP Laws Gain Political Traction while Abortion

Clinics—and the Women They Serve—Pay the Price,” Guttmacher Policy Review, vol. 16,
no. 2, Spring 2013.

Frances M. Kamm, Creation and Abortion, New York: Oxford University Press, 1992.
Don Marquis, “Why Abortion Is Immoral,” Journal of Philosophy, vol. 86, 1989, pp. 183–202.
Warren Quinn, “Abortion: Identity and Loss,” Philosophy and Public Affairs, vol. 13, 1984,

pp. 24–54.
Michael Tooley, Abortion and Infanticide, New York: Oxford University Press, 1983.
Mary Ann Warren, Moral Status: Obligations to Persons and Other Living Things, New York:

Oxford University Press, 1997.

DISCUSSION QUESTIONS

1. In the Edelin case, if the fetus had slipped out during the procedure and been
outside the womb, even attached to an umbilical cord, would it have been
illegal to kill it? Should that matter ethically?

2. How should “pregnancy” be defined? By formation of a unique embryo in the
fallopian tubes or by implantation of an embryo in the uterus?

3. How can anyone ever truly know what’s in the mind of another to judge some-
one by the doctrine of double effect? Someone may say he’s trying to save the
life (or health) of a pregnant mother, not desiring to end the life of fetus, but
who can tell? Isn’t this a fault of the doctrine?

4. Fetal sonograms are now being used to give pregnant women vivid pictures of
their fetuses in the first and second trimesters. Some women viewing such
pictures reverse their decisions to have abortions. Given that fact, should all
women planning abortions be required to view such live images?

5. Some women regret having abortions. What weight should we give such regrets
in public policy about abortion?

6. Is a fetus necessarily a person at birth? What’s so magical about birth? Maybe,
even on a gradient view, we should not declare personhood until much later,
say, six months.

7. “God must want me to be pregnant or I wouldn’t be.” Is this a fair view?

NOTES

1. Maggie Scarf, “The Fetus as Guinea Pig,” New York Times Magazine, October 19,
1975, pp. 194–200.

2. Ibid.
3. A. Philipson et al., “Transplacental Passage of Erythomycinan Clindamycin,”

New England Journal of Medicine 288, no. 23 (June 7, 1973), pp. 1219–1221.

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Chapter 4 Abortion: The Trial of Kenneth Edelin 107

4. Paul Ramsey, The Ethics of Fetal Research, Yale University Press, New Haven,
CT, 1975.

5. William Nolen, The Baby in the Bottle, Coward, McCann, and Geoghegan, New
York, 1978, p. 203.

6. Ibid.
7. Ibid.
8. Commonwealth v. Kenneth Edelin, Massachusetts Supreme Court 359, N.E.

2d, 1976.
9. Kenneth Edelin, quoted in Ob. Gyn. News, January 1, 1977, p. 1.
10. Quoted from Ramsey, p. 94.
11. Nolen, The Baby in the Bottle, p. 174.
12. Ibid.
13. Emily Langer, “Physician Kenneth Edelin, Noted Physician in Abortion Case,

Dies at 74,” Washington Post, January 1, 2014.
14. John Hurder and Trip Grabrial, “Philadelphia Abortion Doctor Guilty of Murder

of Late-Term Procedures,” New York Times, May 13, 2013.
15. Paul Badham, “Christian Beliefs and the Ethics of In Vitro Fertilization,” Bioeth-

ics News 6, no. 2 (January 1987), p. 10.
16. Michael Luo, “On Abortion, It’s the Bible of Ambiguity,” New York Times,

November 13, 2005, Ideas and Trends Section, p. 1, 3.
17. Paul Johnson, A History of Christianity, Atheneum, New York, 1983, Ch. 3.
18. John Connery, “Abortion: Roman Catholic Perspectives,” Encyclopedia of Bioeth-

ics 1, Macmillan, New York, 1978.
19. Robert W. Mulligan, S. J., Jesuit Community at St. Louis University, personal

letter to author.
20. Roe v. Wade, Supreme Court Reporter 93, 410 U.S. 151, pp. 709–762.
21. Barbara Ehrenreich and Deirdre English, For Her Own Good: 150 Years’ of Experts’

Advice to Women, Doubleday, New York, 1987, pp. 319–320.
22. Alan Guttmacher Institute, http://www.guttmacher.org/statecenter/spibs/spib_

MWPA.pdf.
23. Alan F. Guttmacher Institute, Abortion and Women’s Health, New York and

Washington, D.C., 1990, p. 27.
24. Centers for Disease Control, http://www.cdc.gov/mmwr/preview/mmwrhtml/

ss6015a1.htm?s_cid=ss6015a1_w.
25. A Private Affair, a 1992 movie about this case, starred actress Sissy Spacek as

Sherri Finkbine.
26. Peter Steinfels, “Papal Birth-Control Letter Retains Its Grip,” New York Times,

July 29, 1993, p. A1, 13.
27. Fact Sheet: Abortion Surveillance, June 7, 2002, Centers for Disease Control,

Atlanta, GA. For updates, see www.cdc.gov/mmwr/preview/mmwrhtml/
ss5407a1.htm.

28. Mary Anne Warren, “On the Moral and Legal Status of the Fetus,” Monist 57
(1973), pp. 43–61.

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108 Chapter 4 Abortion: The Trial of Kenneth Edelin

29. Peter Singer, Rethinking Life and Death: The Collapse of Our Traditional Ethics, Text
Publishing, Melbourne, Australia, 1994.

30. Don Marquis and Warren Quinn, “Why Abortion Is Immoral,” Journal of Phi-
losophy 86 (1989), pp. 183–202.

31. John T. Noonan, Jr., “An Almost Absolute Value in History,” in John T. Noonan,
Jr. ed., The Morality of Abortion: Legal and Historical Perspectives, Harvard Uni-
versity Press, Cambridge, MA, 1970, pp. 51–59.

32. Judith Jarvis Thomson, “A Defense of Abortion,” Philosophy and Public Affairs
1, no. 1 (Fall 1971), pp. 47–66.

33. Frances Kamm, Creation and Abortion, Oxford University Press, New York, 1992.
34. Connery, “Abortion: Roman Catholic Perspectives,” pp. 9–13.
35. Ellen Willis, “Harper’s Forum on Abortion,” Harper’s Magazine, July 1986, p. 38.
36. Ross Douthat, “160 Million and Counting,” New York Times, June 27, 2011,

p. A10; “Gendercide,” The Economist, March 6, 2010, p. 13.
37. “Explosions over Abortion,” Time, January 14, 1985, p. 17.
38. Jeff Lyon, “Doctor’s Dilemma: When Abortion Gives Birth to Life, Physicians

Become Troubled Saviors,” Chicago Tribune, August 15, 1982, Sec. 12, p. 1, 3.
(A 2.5-pound baby may be viable; jockey Willie Shoemaker, born prematurely,
weighed this much and was kept warm in a shoebox in an oven.)

39. Linda Villanova, “Newest Skill for Future OB/GYN’s Abortion Training,” New
York Times, June 11, 2002.

40. Susan Lee et al., “Fetal Pain: A Systematic Review of the Literature,” Journal of
the American Medical Association 294 (2005), pp. 947–954.

41. Consultants to the Advisory Committee to the Director, National Institutes of
Health, Report of the Human Fetal Tissue Transplantation Research Panel, 1,
National Institutes of Health, Bethesda, MD, 1988.

42. For costs and various kinds of pills, Google “Planned Parenthood” and “Emer-
gency Contraception.”

43. Kenneth Jost, “Mother versus Child,” American Bar Association Journal, Vol. 75,
No. 4 (April 1989), p. 86.

44. E. Abel and Robert Sokol, “Fetal Alcohol Syndrome Is Now the Leading Cause
of Mental Retardation” (letter), Lancet 8517, November 22, 1986, pp. 898–899.

45. Associated Press, “Mother Gets 6 Years for Drugs in Brest Milk,” New York
Times, October 28, 1992, p. A11.

46. Harold Morowitz, “Roe v. Wade Passes a Lab Test,” New York Times, November
25, 1992, p. A13.

47. Planned Parenthood v. Casey, excerpts quoted from New York Times, June 30,
1992, p. A8.

48. “Restrictions on Young Women’s Access to Reproductive Services,” Center for
Reproductive Rights, June 2006, Item F010, www.crlp.org/tools.

49. Hadley Arkes, “Courts Strike Down Laws against Partial-Birth Abortion,” Wall
Street Journal, December 17, 1998, p. A31.

50. Whole Women’s Health v. Hellerstedt 579 U. S. Supreme Court, (2016).

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Between 1978, which saw the world’s first test tube baby, and 2008, which saw
“Octomom” Nadya Suleman add to her brood of test-tube-produced kids, assisted
reproduction raised many ethical issues. This chapter discusses cases spanning over
40 years, including Louise Brown’s birth, surrogate mothers, buying eggs of younger
women, the McCaughey septuplets, and older women having children (such as
Carmen Bousada, who died at age 69 after giving birth at 66).

THE OCTOMOM AND THE GOSSELINS

Nadya Suleman, 32 years old of Whittier, California, in 2008 had six embryos left
over from previous in vitro fertilization (IVF) treatments with fertility physician
Michael Kamrava. She did not want the remaining embryos destroyed and under-
went another cycle of IVF to have all of them implanted. Two of the six embryos
split into twins, resulting in a total of eight embryos. When sonograms in the first
trimester revealed at least five fetuses, Suleman refused reduction and on Janu-
ary 26, physicians delivered eight babies.

Much criticism focused on Dr. Kamrava, who implanted Suleman not once but
twice with six embryos. He certainly breached the guidelines of the American Society
for Reproductive Medicine, which recommends implantation of ideally just one
embryo and permissibly two. Because Nadya already had children from previous
cycles of IVF, and because two of these children were disabled, for Kamrava to implant
six more embryos was unethical and likely created even more disabled children.

The year 2009 also saw another bad situation involving Kate and Jon Gosselin
in suburban Pennsylvania. A labor-and-delivery nurse and a network engineer, the
two married in 2001. The Gosselins had a family of twin girls (born in 2001 from
artificial insemination by husband or “AIH”) when sextuplets (three girls and three
boys) were born to them in 2004. Fertility doctors started the sextuplets by injecting
Kate with drugs to stimulate her ovaries and afterward introduced Jon’s sperm.
Informed of six pregnancies, the Gosselins chose not to reduce and all six babies
were delivered by caesarean in 2004.

C H A P T E R 5

Assisted Reproduction, Multiple
Gestations, Surrogacy, and

Elderly Parents

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Jon & Kate Plus 8 filmed the controlled chaos of this family of 10 and became
a hit show in 2007 on cable television. Putting the kids on television also glamorized
having multiple babies. Shortly after birth, a plastic surgeon did free plastic surgery
to correct the distortion of Kate’s stomach from gestating six babies.

In 2009, after both had extramarital affairs, the Gosselins divorced. Thereafter,
Jon seemed to abandon his responsibilities as a father. Both parents seemed imma-
ture and not focused on the best interests of their eight children. Kate went on
television in 2010 on Dancing with the Stars and had the kids on new reality TV
shows, Twist of Kate plus updates called Kate Plus 8, but in 2011, low ratings sank
the shows and, in subsequent years, Kate scrambled as a single mother to find the
money to raise eight kids. Kate returned to television in 2015 for a reunion but still
feuded with Jon over custody of their children. The September 5, 2016 issue of
PEOPLE magazine featured a story on the 10-year anniversary of the original show
on the Discovery Health Channel in May, 2006. The article revealed for the first
time that Colin has special “educational and social challenges” and attends a sepa-
rate school for special-needs children. (Documenting the outcomes in famous cases
is a hallmark of this text—outcomes that often cannot be known until many years
later.)

Meanwhile, Nadya Suleman wanted her own reality show, but it didn’t happen.
She began to work occasionally in the adult entertainment industry. In 2012, she filed
for personal bankruptcy; authorities auctioned her $1 million home; her children lived
on public assistance; and she spent a month in rehab for addiction to Xanax.

LOUISE BROWN, THE FIRST TEST TUBE BABY

Test tube conception is the popular name for IVF. (“In vitro” means “in glass.”) It
involves fertilization outside the womb, in a Petri dish.

Lesley Brown, the mother of the first child conceived in vitro, had damaged
fallopian tubes from ectopic pregnancies. For her IVF, scientists removed one of her
eggs and placed it in a Petri dish, where they mixed her husband John’s sperm to
form an embryo. With the embryo returned to her uterus, Lesley then carried it to
normal gestation.

In such development, sperm move up the vagina, through the uterus, and into
one of the narrow fallopian tubes. The two tubes, the size of the lead in a mechan-
ical pencil, can each carry an egg from an ovary to the uterus.

A woman has all her eggs at birth, but only one egg is normally primed for
conception each month. Drugs such as Clomid and Pergonal stimulate the ovaries
to release more than one egg, a process called superovulation.

In at least 40 percent of pregnancies, and possibly as many as 70 percent, the
embryo fails to implant on the wall of the uterus, often because of genetic irregu-
larities. More commonly, the mix of hormones is not quite correct.

After one year of trying, about 1 married couple in 11 cannot conceive a child.
Infertility stems from many factors, including a woman’s age, damage from pelvic
inflammatory disease, previous abortions, uterine abnormalities, and low sperm
count or low sperm motility. Infertility is often blamed on the woman, but men
account for 50 percent of it.

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Chapter 5 Assisted Reproduction, Multiple Gestations, Surrogacy, and Elderly Parents 111

Two decades of research by Robert Edwards, a physiologist at Cambridge Uni-
versity, preceded the first IVF birth. Edwards’s work with mice in the 1950s had
taught him how to precisely balance hormones to induce ovulation.

In 1965, 13 years before the birth of Louise Brown, Edwards created a human
embryo after adding his own semen to a ripe human egg in a Petri dish.1 Edwards
thereby fulfilled one of the great fears about scientists: Lone scientist late at night in
his lab artificially creates human life, stealing mystery from creation. Perhaps Edwards
realized people would be frightened by his feat, so he destroyed the embryo. Later,
he tried to repeat it but could not. Nor did he announce to others what he had done.

In his research, Edwards needed to create many embryos and returned only the
healthiest to the uterus. To do so, he needed eggs from female volunteers. Entered
Patrick Steptoe, a gynecologic surgeon practicing in a small hospital near Manches-
ter, who became Edwards’ partner. Steptoe used a newly created laparoscope (a long
thin tube containing a lens with a light) to remove the eggs.

Over the next decade, the duo attempted IVF many times. In the first phase,
they implanted an embryo 41 times in a fallopian tube, but each time, it failed to
go farther. In the next phase, they recruited 100 infertile female volunteers and
implanted an embryo directly into the uterus of each. Their 102nd attempt resulted
in Louise Brown.

In 1977, Dr. Steptoe told Lesley she was pregnant. Before this, some women
had had eggs successfully fertilized in vitro, but all had lost the embryo. Lesley
made it to five months, and her amniocentesis showed a normal pregnancy (if it
had been abnormal, Steptoe would have aborted it). She spent the last month of
her pregnancy at Oldham Hospital under siege by the media.

Steptoe delivered the baby, a girl, by cesarean section on July 25, 1978. In order
to avoid reporters, he operated around midnight with only a few people present.

The Browns called the normal, 5-pound, 12-ounce girl Louise Joy, who the father
said was “beautiful, with a marvelous complexion, not red and wrinkly at all.”2 Imme-
diately after the birth, John Brown said, “For a person who’s been told he and his
wife can never have children, the pregnancy was ‘like a miracle.’ I felt 12 feet high.”

For Louise Brown’s birth, London newspapers ran huge banner headlines, “it’s
a girl!” “the lovely louise!” “baby of the century! joy to the world!”

One competitor who had hoped to be first to deliver an IVF infant dismissed
Steptoe’s achievement as a “cheap stunt.” Another criticized Steptoe for not reveal-
ing how many failures had preceded his success and for giving “false hope to mil-
lions of women.”3 But they missed the point: Louise Brown mattered not because
of her improbability, but because she proved that IVF could succeed.

Patrick Steptoe died at age 74 in 1988, a week before Queen Elizabeth II was
to have knighted him at Buckingham Palace. The same week, Robert Edwards
became a Fellow of the Royal Society, a great honor in the English scientific
community.

Louise Brown’s mother chose to have a second child, Natalie, by IVF in 1982.
In 1993, the three female Browns appeared on American television to support
research in assisted reproduction. At age 15, Louise was a chubby girl whose friends
teased, “How did you ever fit into a test tube?” In 2004, she married, with Edwards
attending her wedding. Her naturally conceived son was born on December 20,
2006. Robert Edwards died at age 87 in 2013.

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112 Chapter 5 Assisted Reproduction, Multiple Gestations, Surrogacy, and Elderly Parents

Harm to Research from Alarmist Media

New ways of making babies have always fascinated the media, whose approaches
to this subject have ranged from alarmist to naively uncritical.

Warren Kornberg, editor of Science News, wrote in a 1969 op-ed in the Los
Angeles Times that questions about assisted reproduction, cloning, and human genet-
ics raised questions “more important” than those raised by nuclear weapons.4

In his early years, Edwards worked on infertility at the National Institute
for Medical Research in London. A television show on IVF opened with pictures
of an exploding atomic bomb and the institute then suspended his funding.
Edwards claims that his scientific supervisor, who had also frozen sperm, flatly
told him his work was “unethical”; when asked “Why?” she only replied, “Because
it is.”5

Edwards left for Cambridge University, where he worked on a Ford Foundation
grant to study population control and fertility. Because his work offended some
people, the Ford Foundation stopped funding him in 1974.

The press incorrectly called Louise Brown a “test tube baby.” This term implied
something bizarre—that a baby had been created without egg or sperm. When Les-
ley first took her baby outside, neighbors expected to see a little monster.

The press equated means of overcoming infertility with genetic manipulation
and, as with cloning later, predicted creation of mindless slaves or dangerous super-
humans. The London Times equated IVF with state-controlled eugenics. In contrast,
John Brown saw IVF as “helping nature along a bit.”

Newspapers and television shows constantly compared IVF to Aldous Huxley’s
1932 novel Brave New World. Yet most had not read the book: The controls that
Huxley feared stemmed from psychological conditioning. Brave New World worries
about behaviorism, a school of psychology then as poorly understood as IVF was in
1978. Although Huxley wrote Brave New World to oppose taking away choice from
citizens, people cited his novel as advocating taking away choice.

Later Developments in Assisted Reproduction

The first IVF baby in America, Elizabeth Carr, was born in 1981. In America, in
2013, Centers for Disease Control and Prevention (CDC) says 467 clinics created
68,000 live-born infants, stemming from 191,000 cycles of assisted reproduction
technology (ART) and as of July 2014, over 5 million babies worldwide.6

Only 5 percent of babies today conceived by ART result from IVF. Less dramatic
techniques create most ART babies, such as egg stimulation and injection of con-
centrated sperm.

Unfortunately, for most of the past three decades, about 75 percent of couples
who pay for cycles of IVF spend from $12,400 per cycle for several cycles and go
home without a baby. In 2002, fertility clinics claimed that about 23 percent of
attempts at IVF allowed couples to have a baby, although the actual figure may be
more like 20 percent.7 Chances worsen for women over 40 and drop with each
unsuccessful attempt, from 13 percent on the first to 4 percent on the fourth.8 At
age 43, chances drop to almost zero. We read a lot about successful IVF, but hardly
anything little about couples for whom it fails.9

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Chapter 5 Assisted Reproduction, Multiple Gestations, Surrogacy, and Elderly Parents 113

Sperm and Egg Transfer

Sperm. Around 1850, physician J. Marion Sims, while practicing in Montgomery,
Alabama, artificially inseminated 55 infertile women with their husbands’ sperm
(AIH).10 He produced one pregnancy, though it later miscarried. Condemnation of
his work by other physicians forced him to stop. In the 1890s in America, critics
vilified Dr. Robert Latou Dickinson for practicing AIH, accusing him of abetting
“adultery.”11

It took another century for people to accept artificial insemination of sperm.
Had Sims paid his first sperm donor, his critics would have been legion. The net
result? Hundreds, maybe thousands, of couples in America and Europe remained
infertile, blaming each other for being barren, going childless not by choice but by
fate.

Today, most people accept insemination of sperm. Indeed, Americans have gone
from accepting (1) artificial insemination (AI) of a husband’s (AIH) sperm into the
wife’s womb, to (2) insemination of another donor’s (AID) sperm into a woman’s
womb, to (3) paying a man for use of his sperm to create a pregnancy, to (4) insem-
ination of anonymous donor sperm into unmarried women wishing to become preg-
nant, to (5) selection of sperm from a catalog of pictures of men listing their
achievements. Today, couples and single women can select sperm from men at
about 400 sperm banks, where sperm donors receive between $50 and $75 per visit
or where they have donated their sperm free.

Eggs. Australia’s Carl Wood in 1983 created the first human pregnancy from an
egg transfer. In the next 15 years, 6,000 middle-aged women gave birth using eggs
from young women.12

In the 1980s, scientists began gamete intrafallopian transfer (GIFT), which unites
sperm and egg not in a Petri dish but inside a fallopian tube, approximately where
normal conception takes place. A Belgian group in 1993 succeeded in using a single
sperm to fertilize an egg, a process called intracytoplasmic sperm injection (ICSI),
making it possible for one sperm to be used to achieve a pregnancy.13

The world’s first IVF child conceived with a young woman’s egg occurred in
California in 1984, but then eggs had to be removed cumbersomely under anesthe-
sia. The end of that decade saw another technological breakthrough when a thin
needle guided by ultrasound retrieved the eggs by going through a vaginal wall.14
That 10-minute procedure under light anesthesia could be done in offices, not oper-
ating rooms of hospitals, and changed the industry. By 1990, with a new supply of
young eggs, doctors showed that older women could gestate embryos.15

Because of assisted conception of twins to celebrities such to Celine Dion at 42,
Geena Davis at 48, Jane Seymour at 44, Holly Hunter at 47, and singletons in their
30s to Christie Brinkley and Angelina Jolie, today’s young women too often believe
they can wait to become mothers until their 30s. Most celebrities don’t disclose
their use of egg donors or how many failed IVF cycles they had (Celine Dion had
five before her twins). Only 8 percent of women at age 43 will have children with
their own eggs, because 90 percent of their eggs will be abnormal.16

But a woman over 40 can gestate embryos created from eggs of younger women,
giving the older woman a biological connection to the baby, creating a biogenetic

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114 Chapter 5 Assisted Reproduction, Multiple Gestations, Surrogacy, and Elderly Parents

child, one connected biologically and genetically to two different females. About 10
percent of IVF attempts today use such eggs. This works for women who have severe
genetic diseases in their families, who have eggs damaged by chemotherapy or
poisoning, who have had several miscarriages, or who suffer from premature
menopause.

Scientists once thought age of sperm or age of gestational mothers caused infer-
tility, but these can be overcome. The absolute barrier to successful gestation is age
of the egg, with rapid drop-offs as eggs deteriorate in women over age 31. As said,
an even bigger drop-off occurs for women over age 43.

Young eggs in older surrogates make a big difference. Using egg transfer, the
success rate for taking a baby home jumps to 60–80 percent and, more important,
40 percent regardless of the age of the female gestator, making egg donation the great
hope for many infertile couples.

Freezing Gamete Material

In 1997, the first birth using previously frozen human embryos occurred at an
Atlanta clinic run by Bruce Tucker.17 In 1990, two embryos were created from dif-
ferent eggs at a California clinic.18 One was implanted and became a baby; the other
remained frozen. Seven-and-a-half years later, doctors implanted the second embryo
and it became a male fraternal twin to his 7-year-old brother. Emma Davis was an
IVF baby born in Britain in 1989; her sister, Niamh, also created as an embryo in
1989, was born 16 years later in 2006.19 The record for such siblings created together
by IVF but born apart is 21 years.

In 2002, a California clinic began to freeze eggs of young women about to
undergo hysterectomy but who wanted to later bear children with surrogates.20 In
2007, other clinics froze ovarian tissue for women in order to preserve or delay
childbearing.21 Questions remain about how viable these eggs/tissue will be after
thawing.

When scientists store embryos and sperm, mishaps can occur. In the 1990s,
a white Dutch couple had nonidentical twins, one of them black. In 2002, a white
couple in London had black twins, because scientists implanted the wrong embryos.
(We’ll never know how many embryos got mixed up between same-ethnicity
couples.)

Stories abound about clinics implanting the wrong embryo in the wrong woman.
In 2009 in Ohio, technicians implanted someone else’s embryo into Carolyn Savage,
which also happened to “Anna” (who was granted anonymity), in Rome in 2014,
who carried twins. In 2013, Rifaat Salem allegedly implanted the wrong embryo
into Melissa Pineda, then aborted it by D&C without her permission. Such women,
often pro-life and desperately wanting a baby, then struggle with whether to gestate
a baby for someone else.

Freezing embryos costs $10,000 initially and then $500 per year for storage and
can create ethical dilemmas.22 Some couples do not want their embryos destroyed
and also do not want to donate them to other couples or to have them used for
research. Right-to-life groups in 2016 filed friend-of-court briefs in some cases, argu-
ing that conflicts should be resolved not in favor of gametic donors but under the
standard of best interests of the embryo.

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Chapter 5 Assisted Reproduction, Multiple Gestations, Surrogacy, and Elderly Parents 115

IVF pioneer physician Cecil Jacobson of Fairfax, Virginia, wrongly used his own
sperm instead of the intended fathers’ to create as many as 75 embryos throughout
the 1980s. In 1992, he went to jail for this. In the mid-1990s, Dr. Ricardo Asch at
University of California, Irvine, switched donor eggs around without women’s con-
sent and fled the country to avoid prosecution.

In 2013, scientists began to invent the EmbryoScope, allowing them to use
high-resolution photos to monitor development of individual embryos day-by-day,
enabling them to pick the best for implantation. An English study showed that
EmbryoScopes raised success rates by 50 percent.23

ETHICAL ISSUES

Payment for Assisted Reproduction: Egg Donors

Originally, young volunteers supplied eggs for older women, but altruism didn’t
meet the demand. Paying for eggs is euphemistically called “egg donation,” and in
America in 2016, clinics in New York City paid egg donors $8,000 per cycle.

Egg retrieval is more complicated than obtaining sperm. A woman takes drugs
daily for a month or more to induce superovulation, after which eggs are aspirated
as previously explained. Some people claim that the drugs increase risk of some
cancers over the life of the woman, but no long-term data support this claim.

In 1999, a famous ad ran in newspapers at Princeton and Yale universities,
stating that an anonymous couple would pay $50,000 for the eggs of a “woman over
six feet tall and with SAT scores over 1450.”24 Payment also runs high for donors
of Jewish or Asian background, because they donate less frequently.

Critics rarely complained when clinics paid males to donate sperm, even though
genetically sperm and eggs are both gametes and contain the same amount of
genetic information. Critics mainly condemn payment of women for eggs.

Payment for Assisted Reproduction: Adoption

Because roughly 1 out of 11 couples in North America is infertile after a year of
trying to conceive, and because IVF works for only 20 couples out of 100, infertile
couples create high demand for healthy, adoptable babies. Because most adopting
couples in North America are white and want a white child, demand for such babies
has skyrocketed.

Because of this demand, the average couple in 2015 seeking to adopt a baby
paid private agencies $28,000. In their quest for a healthy toddler, some couples
paid $100,000. Other couples paid on average more for an Asian baby and $1,000
for a black baby through an adoption program.25

Like transfer of eggs or organs, agencies do not technically sell babies, which
is illegal. But a new industry has sprung up that connects couples to pregnant
women who might put their babies up for adoption. According to one investiga-
tive journalist, “That has left only the thinnest line between buying a child and
buying adoption services that lead to a child.”26 The doubling of licensed child
placement has increased adoptions in North America in the last few years to
nearly 2,000.

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116 Chapter 5 Assisted Reproduction, Multiple Gestations, Surrogacy, and Elderly Parents

In 1993, Russia had no foreign adoptions, but in 2001, it placed more children
in America than any other country (990). Because of alleged abuse of adoptees,
including claims by an 18-year-old adopted teenager who returned after five years,
Russia in 2013 banned adoption by Americans, creating a scarcity of adoptable
babies. In 2011, the other top countries for adoption (and number adopted) were
Ethiopia (448), South Korea (280), China (278), Taiwan (88), Congo (48), and
Columbia (41).27

Although black critics have recently decried the lesser payments that seem to
demean black babies, virtually no one has condemned payment itself. No one has
criticized “pregnancy counseling centers” that encourage pregnant girls to give up
their babies for adoption, while charging $30,000 to couples who adopt those
babies.

Paid Surrogacy: The Baby M and Jaycee Cases

Fertilization of embryos outside the womb made it possible for another woman to
gestate an embryo to birth, creating so-called surrogate mothers, either for pay or
altruistically. For short, we’ll call them surrogates.

By 1986, several hundred women had helped infertile women gestate babies
when biochemist Bill Stern and pediatrician Elizabeth Stern hired Mary Beth White-
head for $10,000 to gestate an embryo created by his sperm and Whitehead’s egg
through artificial insemination. Giving birth on March 27, 1986, in Monmouth
County Medical Center in Long Branch, New Jersey, Mrs. Whitehead claimed to
have bonded with the Baby M, aka Melissa Stern, and refused to give her to the
Sterns. When Mr. Stern threatened legal action, Mrs. Whitehead fled to Florida with
Melissa but was discovered and returned to New Jersey. Whitehead’s case is called
traditional surrogacy. Today, most surrogates are only gestational surrogates and do
not contribute eggs.

At a trial in 1987, Judge Harvey Sorkow upheld the contract, said it wasn’t baby
selling, required Whitehead to hand over the baby, awarded her $10,000, and said
the baby should never see Mrs. Whitehead again. The New Jersey Supreme Court
in 1998 unanimously reversed his decision, declared Mrs. Whitehead the legal
mother with full visiting rights, and invalidated surrogacy contracts. Mrs. White-
head later became a well-known critic of surrogacy. Melissa graduated from George
Washington University and then wrote a master’s thesis on children of surrogacy
at King’s College in London, where she now lives.

Jaycee Buzzanca, aka “the child with five parents,” was born in 1995 from a
paid surrogate but became embroiled in a divorce between the would-be parents.
Jaycee was also conceived from sperm and egg other than from the parents who
hired the surrogate. A California Appeals Court ruled in 1998 that the parents who
hired the surrogate had to be responsible for Jaycee.

Critics commonly object to paid surrogacy as it is not best for the child. Paying
for gestation creates a confused identity for a child who has at least three, and
maybe five, parents. On the other hand, most cases of surrogacy do not involve so
many parents.

In 2013, surrogate Crystal Kelley refused to abort a fetus with severe heart
defects, a cleft palate, and a cyst in its brain.28 After multiple surgeries after birth,

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Chapter 5 Assisted Reproduction, Multiple Gestations, Surrogacy, and Elderly Parents 117

surgeons told the prospective parents that the baby would have only about a
25 percent chance of a normal life. This couple had contracted to pay Kelley $22,000
for the surrogacy and the contract contained a clause requiring abortion in case of
gross defects of fetus. They offered her $10,000 to abort, but Kelley refused. Then
the donors sued to get their already-paid $8,000 back and refused to be the legal
parents of a born-child. Kelley continued the pregnancy. Kelley gave birth in Mich-
igan, where surrogacy contracts cannot be enforced. Her baby at birth had holopros-
encephaly, where the brain fails to completely divide into distinct hemispheres, and
heterotaxy, where many organs develop in the wrong places. A Michigan couple
adopted the baby, who has had multiple surgeries, paid for by Medicaid at the
University of Michigan Medical Center. In 2016, states had vastly different laws
about surrogacy, with 21 having no law, nor case decision about surrogacy. Califor-
nia had the most permissive laws. Feminists, fearing exploitation of surrogates,
teamed up with right-to-life groups, who in turn feared the lack of protection for
extra embryos. They did this cooperatively in order to push through their common
goal of blocking laws in states that allow surrogacy. In 2016, Illinois’ law might be
a model, which accepts the reality of the practice, and requires psychological screen-
ing of all parties, a minimum age of 21 for surrogates, and an embryo created from
either egg or sperm of the would-be parents (and bans Baby M-type cases, where
surrogates supply the egg). By 2014, over 2,000 babies a year were being gestated
by surrogates in the United States.

Multiple Births: Before the Octomom and Gosselins

Although the Octomom and Gosselins made news in 2009, multiples and their
problems have had a sad history.

Births of multiples have been growing steadily since the birth of Louise Brown
in 1978. For most couples without reimbursement for IVF, taking the drug Clomid
is the easiest way to overcome infertility, and if that doesn’t work, Pergonal or
Metrodin is taken to stimulate the ovaries to release many eggs. However, introduc-
tion of sperm can fertilize one, two, or eight eggs, resulting in unwanted twins,
triplets, or bigger multiples.

IVF, in contrast, allows physicians to control how many embryos they implant,
with the ideal being implantation of one embryo per cycle.

In 1985, a Mormon couple, Patti and Sam Frustaci, conceived septuplets but
refused to have a reduction; four of their seven babies died and the three survivors
had severe disabilities, including cerebral palsy. In 1987 and with the help of
Pergonal, Ron and Roz Helms of Peoria, Illinois, had quintuplets, born 11 weeks
premature. One child spent a year in a neonatal intensive care unit (NICU),
another had seizures, and a third had cerebral palsy. The quints’ medical bills for
their first decade topped $3 million, paid for mostly by the Children’s Miracle
Network.

Multiple-birth babies are usually premature (each may weigh less than two
pounds), three times as likely to be severely handicapped at birth, and often spend
months in NICUs.

During gestation, nutrients and oxygenated blood in the womb are scarce (a
uterine lifeboat, if you will); thus, not all seven fetuses will likely emerge healthy.

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To prevent disabilities resulting from uterine deprivation, physicians recommend
selective reduction of all but one or two embryos.

In 1996 in England, after taking Merton and Pregnyl for two days, Mandy
Allwood released seven eggs, had sex, and all of her eggs were fertilized. A London
tabloid offered her big money for rights to her story but only if all her embryos
made it to term. This began the media’s exploitation of such mothers. Mandy went
and lost all seven.

In 1997, an Iowa couple, Bobbi and Kenny McCaughey in Iowa, used Pergonal
to superovulate Bobbi and introduced Kenny’s sperm, conceiving seven embryos,
refused to reduce, and chose to risk having disabled babies, claiming any bad results
were God’s will.

At their fourth birthday in 2001, the McCaughey septuplets lagged in develop-
ment and were not all potty trained. Joel suffered seizures; Nathan had spastic
diplegia, a form of cerebral palsy requiring botox injections (to paralyze spastic
muscles) and orthopedic braces. Alexis had hypotonic quadriplegia, a cerebral palsy
that causes muscle weakness. After two major orthopedic surgeries, at age 7, Nathan
still could not walk. For four years, Alexis had an indwelling feeding tube. Although
they homeschooled, the McCaugheys in 2006 began to send Nathan and Alexis to
a public school for developmentally challenged children. In 2014, five of the children
approached graduation from high school. Nathan and Alexis managed in
special-needs schools with cerebral palsy.29

In 1997, Jacqueline Thompson had sextuplets in Washington, D.C. After the
death of one child, the mother struggled to raise five teenagers.30 Unlike the
McCaugheys’, this single black mother’s story drew no offers of television appear-
ances or reality shows and few donations.

In 1998, octuplets—six girls and two boys—were born to Nigeria-born American
citizens Nkem Chukwu, age 27, and Iyke Louis Udobi, 41. In 2009, the Chukwus
tried to tour the world with their eight 10-year-old children under their theme,
“Promote Healthy Families,” but their tour did not garner fame and donations like
that of the Gosselins, the Octomom, or the McCaugheys.

The probability of an impaired baby varies directly with the number of embryos
allowed to gestate. In other words, if six are implanted, one is almost certain to be
born with cerebral palsy or blindness. Unfortunately, the chance of having any baby
at all with assisted reproduction also varies directly with the number of embryos
implanted—hence, the ethical dilemma of how many embryos should be implanted.

Older Parents

As said, by using eggs of younger women and ICSI, older people can create their
own children. In 1980, Carl Wood accepted a 42-year-old woman as his first IVF
candidate because of her increased chances of birth defects. She had a normal baby.

In 1993, a 59-year-old Englishwoman gestated twins from embryos fertilized by
her husband’s sperm and eggs donated by a young woman. In 1998 and at age 57,
American Judy Cates did the same.31

In 1990, one-third of American assisted reproduction (AR) clinics excluded
women over 40. By 1998, the practice of using eggs of younger women had moved
such limits to age 55.

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Several births pushed this debate into public consciousness. In 1997, after lying
about her age, 63-year-old Arceli Keh gave birth to a healthy baby girl. In 2005,
66-year-old Adriana Iliescu gave birth to a healthy baby daughter in Romania. In
2004, two 57-year-old women, Aleta Saint James, unmarried, and Rosee Swain, a
great-grandmother, gave birth to twins using IVF and eggs from younger women.

In 2006, at age 67 and after having lied about her age at a fertility clinic in Los
Angeles, Maria Carmen del Bousada gave birth to twins in Barcelona, Spain. Two
years later, she died of cancer, leaving two orphans. In 2008, an Indian woman who
claimed to be 70 gave birth to twins in Uttar Pradesh, India.

Should society encourage seniors to have children when they may be dead
before their children reach 18? In 1968, at age 66, Senator Strom Thurmond married
a 22-year-old former Miss South Carolina and had four children with her (he died
at age 100 in 2003). Actor Tony Randall fathered a daughter in 1997 at age 77 (he
died at age 89 in 2005). Should fertility clinics place restrictions on women that
they don’t place on men?

One answer focuses on the best interests of the children. Regardless of whether
it’s a man or a woman, is it in a child’s best interest to be a newborn of a parent
approaching 70? How likely is it that the elderly parent will be around for the child’s
grade school graduation, let alone the senior prom? Certainly being orphaned at
age 2 is not ideal for the Bousada twins, and Adriana Iliescu will be unlikely to see
her daughter’s 18th birthday. Moreover, raising children takes energy and vigor,
qualities that diminish rapidly in the senior years.

Given these facts, are 70-year-old seniors vain in having children? Or selfish,
in wanting something to cherish and carry on one’s name? Should we make it illegal
for them to have children?

Gender Selection

Because X chromosomes weigh more than Y chromosomes, Microsort, a modified
flow cytometer, can separate heavier from lighter sperm, producing accurate results
90 percent of the time.32 Although intended for pre-implantation genetic diagnosis,
Microsort may be used to select male babies.

Gender selection is an issue in China, the Republic of Korea, and India. For
centuries there, parents saw females as less desirable than males. Using sonograms,
many families aborted female fetuses to try again for a male child.

Despite laws that ban testing for sex in India and China, at least 60 million
females are missing. After decades of such practices in China, in 2016, 20- to
44-year-old never-married men outnumber available females two-to-one, allowing
single Chinese women to be very choosy about whom they decide to marry. By
2020, 1 million excess Chinese males will seek to marry.33

Sex selection is sexist and leads to imbalances of the sexes in the population,
as happened in China. Perhaps it should be banned.

Unnatural

In 1978, the year of Louise Brown’s birth, the Vatican condemned IVF and has not
changed its position since. Its Instructions of 1987 equated IVF with “domination”

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and “manipulation of nature.”34 In 2008, in “Dignity of the Person,” it emphasized
that children should be created only through sexual intercourse of a married cou-
ple.35 The document bans IVF, freezing embryos, and screening them genetically.

Paul Ramsey, a socially conservative Protestant theologian at Princeton Univer-
sity, in 1970 equated IVF with genetic manipulation, predicting societal horrors to
such a practice. He implied that if physicians could find a tiny egg and fertilize it,
why couldn’t they alter its genes?36 He predicted that if they could, they would, and
he held that if they did, it would be sinful. Forty-six years later, his predictions may
come true with CRISPR (see Chapter 15).

Ramsey came up with some provocative phrases suggesting vague but disturbing
harms to society: “test tube babies,” “dial-a-baby,” “playing God.” He created brilliant
neologisms for rhetorical effect: “mercenary gestation,” “supermarket of embryos,”
“spare-parts man” (a hypothetical cloned twin grown for this purpose), “celebrity
seed” (sperm banks), and “human species suicide” (eliminating genetic diseases).

When Lesley Brown was several months pregnant, at the invitation of Sargent
Shriver, Robert Edwards attended a symposium on the ethics of IVF at Washington’s
Kennedy Institute for Bioethics. While senators, national columnists, and other sci-
entists listened, Ramsey condemned IVF. Edwards, the scientist, listened and
described what he heard:

He had to be seen and heard to be believed. I had to endure a denunciation of our
work as if from some nineteenth-century pulpit. It was delivered with a Gale 8 force,
and written in a similar vein a year later in the Journal of the American Medical
Association. He doubted that our patients had given their fully understanding con-
sent. We ignored the sanctity of life. We carried out immoral experiments on the
unborn. Our work was, he thundered, “unethical medical experimentation on pos-
sible future human beings and therefore it is subject to absolute moral prohibition.”
I was as much surprised as made wrathful by this impertinent scorching attack. He
abused everything I stood for.37

Ramsey condemned IVF not based on its possible harmful consequences to the
child, to the parents, or to society, but rather, and in a view that resurfaced 20 years
later, from the idea of wronging the embryo-person. IVF is wrong in itself, Ramsey
held, because it is “unconsented-to experimentation” on a person, the embryo.38

During the 1970s, then Episcopal priest Joseph Fletcher defended IVF against
the claim that it was unnatural:

It is depressing, not comforting, to realize that most people are accidents. Their
conception was at best unintended, at worst unwanted. There are those who are so
bemused and befuddled by a fatalist mystique about nature with a capital N (or
“God’s will”) that they want us to accept passively whatever comes along. Talk of
“not tinkering” and “not playing God” and snide remarks about “artificial” and
“technological” policies is a vote against both humanness and humaneness.39

For Fletcher, each kind of case should be considered on its own merits to see
if it would help or hurt humanity; society must not be locked into antiquated reli-
gious prohibitions that take no account of consequences. Religion is best when it
is “pro people,” not when it worships abstract “thou shall not’s”:

The real choice is between accidental or random reproduction and rationally willed
or chosen reproduction . . . . Laboratory reproduction is radically human compared

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to conception by ordinary heterosexual intercourse. It is willed, chosen, purposed
and controlled, and surely those are among the traits that distinguish Homo sapiens
from others in the animal genus, from the primates down.40

In part because he disagreed so much with the views of conservative Christianity,
Fletcher gave up the priesthood around 1980 and became a secular thinker, becom-
ing one of the first secular bioethicists.

Physical Harm to Babies Created in New Ways

Many people predicted that the first baby born from IVF might be defective. This
is understandable because in the 1940s, an Italian researcher named Petrucci falsely
claimed to have fertilized a human egg in vitro, grown it for 29 days, and then
destroyed it because it was “monstrous.”41

At Louise Brown’s birth, one obstetrician emphasized that “the potential is
there for serious anomalies should an unqualified scientist mishandle an embryo.”42
Another obstetrician said, “What if we got a cyclops? Who is responsible? The par-
ents? Is the government obligated to take care of it?”43

Leon Kass, later chair in 2002 of George W. Bush’s Bioethics Commission,
warned, “It doesn’t matter how many times the baby is tested while in the mother’s
womb,” he averred, “they will never be certain the baby won’t be born without
defect.”44

Some Nobel Prize winners condemned experimental methods of conception.
James Watson feared that deformed babies would be born and need to be raised in
custodial homes or killed.45 (Watson later recanted.) Max Perutz, who won a Nobel
in chemistry, agreed:

I agree entirely with Dr. Watson that this is far too great a risk. Even if only a single
abnormal baby is born and has to be kept alive as an invalid for the rest of its life,
Dr. Edwards would have a terrible guilt upon his shoulders. The idea that this might
happen on a larger scale—new thalidomide catastrophe—is horrifying.46

In 1977, in Who Shall Play God? alarmist Jeremy Rifkin began four decades of
opposition to new reproductive techniques. Rifkin decried AR as evil “genetic engi-
neering,” which he defined as “artificial manipulation of life.”

Socially conservative, pioneering bioethicist Dan Callahan argued that the first
case of IVF was “probably unethical” because no one could guarantee that Louise
Brown would be normal, though scientists could ethically proceed after Louise’s
healthy birth.47

What these critics overlooked was that no reasonable approach to life can avoid
all risks. A highly unlikely result, even if that result is bad, still represents a small
risk.

Over the last 40 years, we learned a few things about actual physical harm to
IVF babies. Babies conceived through IVF have approximately twice the normal rate
of birth defects, around 4 percent overall—instead of the norm of 2 percent.48 IVF
children are at greater risk for Beckwith-Wiedemann syndrome, which causes
enlarged organs and cancer in children, and five to seven times more likely to
develop retinoblastoma, a rare cancer of the eye.49 Another study found that 9 per-
cent of babies conceived through IVF or ICSI had birth defects versus 4.2 percent

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122 Chapter 5 Assisted Reproduction, Multiple Gestations, Surrogacy, and Elderly Parents

of those naturally conceived. Another American study found that babies conceived
through IVF were three times more likely than normal babies to be born under-
weight and premature.

One possible cause of these defects may be subtle change in expression of genes
caused by IVF that in turn may cause serious genetic damage.50 Researchers have
suggested an IVF registry to track such problems.51

A 2012 Australian study suggested that AR itself might pose no extra risk and
that the increase in defects associated with it were really caused by infertile women
previously taking Clomid, having previously conceived embryos with defects, or
other factors associated with infertility.52

The concept of absolute versus relative risk matters here. Given that the absolute
risk of an abnormal child overall is small, a slightly increased relative risk from IVF
conception doesn’t matter that much, so couples having IVF babies still have small
risks of serious problems.

Psychological Harm to Babies Created in New Ways

Jeremy Rifkin first raised the issue not of physical harm but of psychological harm by
having a new kind of origin, a claim later raised about children created by cloning:

What are the psychological implications of growing up as a specimen, sheltered not
by a warm womb but by steel and glass, belonging to no one but the lab technician
who joined together sperm and egg? In a world already populated with people with
identity crises, what’s the personal identity of a test-tube baby?53

Psychological trauma could also come from badly motivated or immature parents,
an issue discussed later in connection with the children of Nadya Suleman and the
Gosselins.

Paradoxes about Harm and Reproduction

Can children be harmed by in vitro conception? Theologian Hans Tiefel wrote, “No
one has the moral right to endanger a child while there is yet the option of whether
the child shall come into existence.”54 But can a “being” be harmed when it may
not exist?

Call this the paradox of harm, the seemingly self-contradictory idea that someone
can be harmed by being born. This idea appears to be paradoxical because, first, it
seems queer to say that we can harm a being by bringing it into existence; but
second, it seems equally odd to say that a mother, who could have prevented harm
to her child but did not, did no wrong.

A paradox results when two different meanings of a key term are used simulta-
neously. Paradoxical statements are dissolved by carefully specifying the different
meanings of each term and deciding which meaning applies to each. With the
paradox of harm, we must distinguish between different meanings of “harm.” Like
“good,” “harm” covers a broad range of meanings. In law school, one of the major
courses, torts covers its meanings.

Let’s distinguish two ways of thinking about harm. In the first, both a baseline
and a temporal component are necessary so that a change occurs that makes

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someone worse off. In this baseline harm, harm requires an adverse change in
someone’s condition. With the baseline concept, someone who doesn’t yet exist
cannot be harmed, because there is no baseline from which change can occur.
(Consider the old Yiddish joke: 1st—“Life is so terrible! Better to have never existed.”
2nd—”True, but who is so lucky? Not one in a thousand.”)

In the second way of defining harm, harm involves comparing a present defi-
cient condition with what normally would have been. In this abnormal harm, some-
one can be harmed by being brought into existence with some defect that could
have been avoided by taking reasonable precautions. With abnormal harm, the
event or omission that causes the defect is the cause of harm. The abnormality
concept underlies the belief that women should do everything possible to have
healthy, unimpaired babies, that anything less than the maximal effort is blame-
worthy, and that it is wrong for a woman to take risks with a future person’s intel-
ligence or health. To sum up these two concepts of harm:

Baseline Harm. Requires a starting point (baseline) from which an adverse change
is plotted; that is, it requires an existing being who is made worse off.
Abnormal Harm. Requires a norm of development that is not met, for example,
because of a doctor’s actions or omissions while a woman is carrying a fetus.

In wrongful life cases in the courts, it is claimed that the lives of some children
are so miserable that their very existence is a tort. In wrongful birth cases, the claim
is not that the child’s life is totally miserable, but simply that the child has been
damaged by being born less than normal. Wrongful birth suits appeal to the nor-
mality concept. The courts have rejected wrongful life suits by assuming the baseline
concept; that is, they have assumed that preventing a birth or killing a baby cannot
possibly be a benefit, even to prevent or end a life of total harm.

These two concepts of harm can be applied to IVF. According to baseline harm,
a person created by IVF cannot thereby be harmed because, otherwise, that person
wouldn’t have existed. According to abnormal harm, IVF could harm a baby if it
caused some defect or deficiency that a normal baby would not have had.

Wronging versus Harming

For utilitarians or consequentialists, what matters about new kinds of human cre-
ation is that babies are not harmed. On the other hand, virtue theorists or deon-
tologists such as Kantians focus on the motives of prospective parents. Whether it
is AID, IVF, surrogacy, or cloning, they ask, “What would a good mother do? What
kinds of risk would she take?”

This deontological approach emphasizes that even though a child might not be
harmed by being brought into existence, a mother can still be wrong in bringing
the child into existence. That’s because “wrong” here is divorced from consequences
to the child and instead married to the motives of the mother in conceiving a child.
To take a mundane example, if a mother conceives a child not because she wants
a child but to try to force a wealthy man to marry her, then—regardless of any later
possible harm to the child—the mother is wrong to create it for this reason.

In a Scottish study in 2005 of women trying to conceive at an infertility clinic,
most of the 81 women would, if given an either-or choice, rather have a child with

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124 Chapter 5 Assisted Reproduction, Multiple Gestations, Surrogacy, and Elderly Parents

cerebral palsy or partially blind than no child at all.55 But is this the right motive
for childbearing? This issue intensifies with dilemmas raised by implanting multiple
embryos, where couples face choices between risks of no child and risks of several
children with disabilities.

Let us distinguish between the ideal and the permissible regarding traditional
conception and AR.

Best Interests. What methods of conception are best for children brought into the
world? What methods are permissible?
Best Motives. What motives are best for parents to have in creating children? What
motives are permissible?

Harm by Not Knowing One’s Biological Parents?

Can a child be harmed by not knowing his genetic ancestors? Yes, if he or she later
needs to find out specific genetic information or to discover who his or her biolog-
ical parents were. Even if a donor of sperm or egg wishes to be anonymous, children
are increasingly being given this information as adults.

One compromise solves this problem by allowing gametic donors or surrogates
to be confidential but not anonymous. In this practice, agencies keep from children
the names and identities of gamete donors, but donors can update their files every
few years so that their biological children can know about their genetic diseases
and lives. This practice protects the desire of some donors and some surrogates not
to have contact with children created from their gametes while also giving them the
chance to change their minds.

It is mainly the adoptive parents who don’t want their children to know such
donors.56 Surprisingly, many sperm and egg donors, or surrogates, do not mind main-
taining such records and want to know about the lives of such children.57 For exam-
ple, 49-year-old Google engineer Todd Whitehurst fathered 54 children as a sperm
donor in southern California in 1998 and in 2016, met 8 of them for the first time.

Pediatrician/internist Matthew Neidner registered online in 2006 with the Donor
Sibling Registry and discovered that his sperm over 10 years had helped create nine
children, who can see his picture online and follow his career.58 Single women in
San Diego selected his sperm from his profile at the Fertility Center of California.

Is Commercialization of Assisted Reproduction Wrong?

Sale of gametes either could be intrinsically wrong—just wrong in itself—or indirectly
wrong because of associated bad consequences. The first belief stems from religious
or Kantian premises about the inherent value of humans being incompatible with
aspects of their conception being priced in the market. Valuing human life is incom-
patible with paying someone a price for sperm, eggs, embryos, or gestation, making
the resulting baby a commodity.

Someone looking at the larger structure of society may claim, emphasizing a view
of justice, that reproductive relationships between people should not be subjected to
money. They could also argue that such transactions violate natural law. In other
words, reproduction should be natural and free, not something bought through a
contract. So payment for sperm, eggs, and surrogacy is wrong, as is physicians work-
ing in fertility clinics where money is exchanged for these goods and services.

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A large number of articles over the past decades sensationalized payment to
young women for their eggs, predicting dire consequences such as the commodifi-
cation of life, millions of women reduced to being egg sellers, and made-to-order
embryos.59

Defenders of payment ask whether enough young women will go through egg
donation for altruistic reasons. Altruism hasn’t worked in other areas of medicine.
Voluntary donation has failed to meet the need for blood for operations, organs for
transplantation, or bone marrow for leukemia patients.

So if we don’t permit compensation, infertile couples will not get the babies
they want. If we regulate compensation and ban a real market, other problems arise,
such as trying to set the right fee for everyone. Finally, if payment for AR is wrong,
why isn’t payment for adoption wrong?

Sometimes, objections about payment to women imply that men are exploit-
ing women. From reading interviews with paid surrogates, this does not seem to
be true.60 Paid surrogacy empowers many women who do it, making them special
and contributing to their family’s income. A surprisingly large number do it
despite objections from husbands or battle husbands who want to keep the ges-
tated baby.

Screening for Genetic Disease: A New Eugenics?

Prospective couples can screen for future traits of children in two ways: by scruti-
nizing the background of the egg or sperm donors or by testing actual embryos for
genetic conditions such as Down syndrome. Is such expanded choice good or a new
eugenics?

Some critics oppose any selection by prospective parents and argue that parents
should be forced to accept the first available embryo or that embryos should be
randomly assigned. Similar critics once argued that all adoptable babies should be
adopted before couples tried IVF.

Some prospective couples, for example, Japanese-American, want an embryo
from parents who will be Japanese-American. They desire to maintain the illusion
that the child came from their gametes.

Other couples want to avoid a child with disabilities, such as a Down child or
a child with fragile X syndrome (a condition leading to retardation). If couples are
allowed to do some screening for genetic diseases, will this lead to them wanting
only perfect babies or to a new eugenics?

Perhaps not. One reason is the cost of screening: For a single disease, it can be
as much as $20,000, which most insurance companies will not pay.61 It is unlikely
that a couple will screen out hundreds of embryos and implant only the perfect
ones, because few couples have the millions of dollars to pay for so many screening
tests. Should a cheap screening test be available where a couple could cheaply
screen an embryo for hundreds of genetic diseases, this objection might carry some
moral weight.

Even if such a test becomes available, we need to ask, what’s wrong with cou-
ples wanting as healthy a baby as possible at birth? Isn’t this what properly moti-
vated parents should desire? Isn’t this why pregnant mothers should avoid alcohol,
tobacco, or other harmful drugs during pregnancy?

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Designer Babies?

This is a large question, connected in part to questions about eugenics and controls
on biotechnology. Note that many people believe that it is permissible to use such
techniques to let infertile couples choose against diseases that embryos might carry.
Sensationalistic stories imply that pre-implantation diagnosis will lead to eugenics;
but is this leap realistic?

When clinics pay young women for their eggs, they fertilize the eggs with a
variety of different sperm, keeping records of each embryo created. Couples may
then select an embryo from this woman’s eggs (seeing a photo and description of
her) that will be fertilized by sperm from a man whose photo they view and whose
life they read about.

Critics worry that traits of men and women will be selected that the purchasing
couple deem desirable. As one such critic put it in discussing a market for egg
donors, “this approach is harmful not only because it serves to reinforce social
prejudice but also because it fragments women as persons by commodifying their
characteristics, which seems at least as harmful as commodifying their eggs.”62

But critics who decry selection of traits in embryos always ignore adoption. Why
is selection by ethnicity or race bad in one case but permissible in the other? Why
is selection by ethnicity and race plus large payment permissible for adoption but
not for eggs or embryos or surrogates?

In other areas of life, people decide what they value in others in joining frater-
nities, sororities, and country clubs, in hiring and firing, in dating, in choosing a
person to marry and to create children with, in making friends, in deciding where
to live, and in choosing whom to mentor. Many of these choices reinforce existing
attitudes and the government does not ban them.

On the other hand, perhaps things are subtler. The media and advertising shape
the way millions of young people dress and wear their clothes and could easily sway
them similarly about the kind of children they should want. Maybe we should be
worried.

Assisted Reproduction Worldwide

As one would expect, countries vary about their attitudes to AR. The highest per
capita users in the world are Israelis, where unlimited cycles of IVF are free for up
to “two take-home babies” until a woman is 45.63

Global capitalism, the Internet, and outsourcing have combined to create “repro-
ductive tourism.” PlaneHospital.com LLC operates from California and brings
together clients, gamete donors, and surrogates from around the globe.64 Because
many foreign countries such as China deny gay and lesbian couples the right to
adopt, such couples often use global services to obtain children. Using one of the
couple’s sperm or eggs can create a genetic tie to a child gestated by a woman in
America or India.

Egg donors usually come from North America or Eastern European countries,
because clients prefer fair-skinned babies. Greece, Cyprus, Panama, and Gujarat,
India, are centers for reproductive services, but for clients with money, their first
choice for surrogates are located in California.

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In the Gujarat state in West India, the Akanksha Infertility Clinic run by
Dr. Nayna Patel offers many willing surrogates for foreign couples at $5,000–$7,000,
instead of the $50,000 fee common in North America. The Oprah Winfrey Show
has profiled the Akanksha Infertility Clinic in Anand. The Akanksha Clinic has
been criticized for keeping its mothers in prison-like seclusion behind barbed-wire
gates and for the death of a young surrogate named Easwari, who delivered her
contracted-for baby but died afterward from uncontrolled bleeding.65 As the second
wife in a polygamous marriage, Easwari may have had little real choice about accept-
ing the $5,000 for surrogacy, more than what she could have made at best in
10 years of working outside her home. If a woman has twins, as surrogates often
do after Dr. Patel implants several embryos, she can make $6,000–$7,000, equivalent
to 12–14 years of work outside the home.

Time to Regulate Fertility Clinics?

Perhaps it’s time to ban implantation of sperm or embryos where more than two
births are possible and ban implantation of embryos in women over age 55 (and
with rigorous proof required of birth).

Given that the ART industry generates $1 billion in fees per year and given
what critics call “the wild west of medicine,” where almost anything goes, some
minimal regulation of AR might be good for it, especially for the children it
creates.66

We know that being a multiple is not good for the resulting children, who run
a high risk of having a lifelong disability. Nor is it good to be born to a single, nearly
70-year-old woman, who will likely die and leave the child an orphan. Even if the
woman is rich, the emotional health of the child will be severely compromised.

Governments could regulate fertility clinics in four ways: (1) No AR for women
over age 55 and real testing must be enforced (seriously, in America it’s easier for
the elderly to buy reproductive services than it is for teenagers to buy alcohol).
(2) Implantation of no more than one embryo and no introduction of sperm when
ovaries mature more than two eggs. This will reduce the number of multiple births,
and attendant disabled children, by 99 percent. (3) No selection of gender of
embryos except for sex-linked genetic disorders. (4) No selection of a child to match
the disability of existing parents with a disability, for example, deaf parents who
want a deaf child. It is not in the best interests of any child to be born deaf, and
parents who want such disabled children have the wrong motives.

On the other hand, some reasons exist not to regulate fertility clinics. During
the 1970s, America banned use of federal funds for experimentation on embryos.
This ban hoped to stop AR research, but fertility clinics subsidized their research
from fees paid by clients. At the time, critics doubted that couples would pay much
for AR, especially given such low chances of having a baby. But critics erred. Over
1 million American couples paid for assistance in ART clinics.

An unintended but foreseeable by-product of the ban was that neither the National
Institutes of Health (NIH) nor Institutional Review Boards (IRBs) could regulate AR
research in private clinics. That lack of regulation led to breakthroughs, fueled by
competition between ART clinics. It created a billion-dollar industry, where patients
fly to enlightened countries to get what they can’t get in repressive countries.

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128 Chapter 5 Assisted Reproduction, Multiple Gestations, Surrogacy, and Elderly Parents

So, if it’s not broke, don’t fix it. A few aberrant cases should not bring down
the whole system. Physician Michael Kamrava can be sued on behalf of the disabled
babies for breach of the standard of care, sending a message to other physicians in
fertility medicine.

Another problem is that reproductive medicine, with its research on human
embryos, fires passions in social conservatives, who believe such research attacks
the dignity of humans. Once politics controls who can buy AR services, will a slip-
pery slope occur? If we make it illegal for a physician to help a couple have a first-
born male child, or a 60-year-old woman to gestate a child, what’s next? Banning
AR altogether, the way the Vatican advocates?

Finally, given that AR has gone global, how can we regulate services in Greece
or India? Perhaps the only avenue for doing so involves citizenship and immigra-
tion, where children born to North American couples at nonsanctioned foreign
clinics would be denied citizenship or entry to North America.

Conclusion

Given that Nadya Suleman already had six children, Dr. Kamrava’s acceptance of her
as a fertility patient certainly was “a huge ethical failure.”67 And for him then to implant
all six of Suleman’s remaining embryos moved the case from ethical failure to ethical
tragedy—tragedy for the 14 kids to be parented by this immature, single woman.

AR is a special kind of medicine, not only wrapped in the joys of creating
wanted babies but also rife with controversies. As older women bear such babies,
as more embryos are implanted creating more multiple births, we need to think
more about harm to new children and less about the desires of infertile parents.

FURTHER READING

Scott Carney, The Red Market: On the Trail of the World’s Organ Brokers, Bone Thieves, Blood
Farmers, and Child Traffickers, New York: William Morrow, 2011.

Cynthia Cohen, ed., New Ways of Making Babies: The Case of Egg Donation, Bloomington, IN:
Indiana University Press, 1996.

Stephanie Coontz, The Way We Never Were, New York: Basic Books, 1992.
Joseph Fletcher, Ethics of Genetic Control: Enduring Reproductive Roulette, New York: Doubleday

Anchor; reprinted by Prometheus, Buffalo, NY, 1984.
Marcia Inhorn and Frank Balen, Infertility around the Globe: New Thinking on Childlessness,

Gender and Reproductive Technologies, Berkeley, CA: University of California Press, 2002.
Paul Ramsey, The Ethics of Fetal Experimentation, New Haven, CT: Yale University Press, 1975.
Elaine Tyler, Barren in the Promised Land: Childless Americans and the Pursuit of Happiness,

Cambridge, MA: Harvard University Press, 1995.

DISCUSSION QUESTIONS

1. If fertility clinics are regulated, shouldn’t adoption agencies also be regulated?
Shouldn’t there be age limits on who can adopt? Shouldn’t couples also be
banned from saying they want only a baby of a certain sex?

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Chapter 5 Assisted Reproduction, Multiple Gestations, Surrogacy, and Elderly Parents 129

2. Is it better to be born with a 65-year-old single mother than not to exist at all?
Is this a fair question? What’s wrong, if anything, with the way this question
is asked?

3. Why should there be any restrictions on choices of parents about babies with
AR? What’s different about AR that gives governments the right to impose such
restrictions? We don’t impose any tests on who can have a baby and we let
people who use tobacco and alcohol during pregnancy have babies. Given such
low standards, isn’t it contradictory to impose higher standards on AR?

4. Isn’t selling one’s eggs to the highest bidder like prostitution? Kant would object
to both because they treat one’s body as “a mere means.” Is it wrong to so
commodify one’s body and be paid for doing so?

5. IVF may not be unnatural but gestating eight fetuses is. There’s perversity going
on here and nature extracts a terrible price on the resulting kids. The same
thing when an elderly woman gestates a baby with artificial hormones. Aren’t
both processes thwarting nature, unnatural, and, hence, “just wrong”?

6. Is AR “pro-life”? Since 1 in 11 couples in America can’t conceive after a year
of trying, and if they want to have babies, what’s wrong with their using AR?
Even if some tiny embryos are lost in the process of trying to conceive—which
also occurs for 50 percent of embryos conceived through normal sexual rela-
tions—what’s wrong with couples wanting their own kids and using medical
science to try to have them? How can such desires not be “pro-life”?

NOTES

1. Patrick Steptoe and Robert Edwards, A Matter of Life, Morrow, London, 1980.
2. Time, August 7, 1978, p. 68.
3. Richard Blandau, quoted in Time, November 13, 1978, p. 89.
4. Walter Kornberg, “Playing God in Laboratory: Question of Man’s Wisdom,” Los Angeles Times,

March 16, 1969, p. G3.
5. Audrey Smith, quoted in Steptoe and Edwards, A Matter of Life, p. 48.
6. Centers for Disease Control, “Assisted Reproductive Technology (ART): ART Success Rates,” http://

www.cdc.gov/art/reports/.
7. Sheryl Gay Stolberg, “For the Infertile, a High-Tech Treadmill of Despair,” New York Times, Decem-

ber 14, 1997.
8. Centers for Disease Control, Assisted Reproductive Technology Success Rates in the United States: 1996

National Summary and Fertility Clinic Reports, http://www.cdc.gov/art/pdf/2013-report/art-2013-
fertility-clinic-report.pdf

9. For one such account, see Holly Finn, “My Fertility Crisis,” Wall Street Journal, July 23, 2011.
10. Seale Harris, A Women’s Surgeon: The Life Story of J. Marion Sims, Macmillan, New York, 1950,

p. 245; Barron Lerner, “Scholars Argue over Legacy of Surgeon Who Was Lionized, Then Vilified,”
New York Times, October 28, 2003, p. D7.

11. Elaine Tyler, Barren in the Promised Land: Childless Americans and the Pursuit of Happiness, Harvard
University Press, Cambridge, MA, 1995, pp. 65–69.

12. Sheryl Gay Stolberg, “Quandary on Donor Eggs: What to Tell the Children,” New York Times, Jan-
uary 18, 1998.

13. Gina Kolata, “New Pregnancy Hope: A Single Sperm Injected,” New York Times, August 11, 1993, p. B7.
14. Peggy Orenstein, “Your Gamete, Myself,” New York Times, July 15, 2007.

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130 Chapter 5 Assisted Reproduction, Multiple Gestations, Surrogacy, and Elderly Parents

15. K. Sauer, Richard Paulson, and Rogerio A. Lobo, “Reversing the natural decline in human fertility:
an extended clinical trial of oocyte donation to women of advanced reproductive age,” New England
Journal of Medicine 322 (1990), pp. 659–644.

16. B. Luke et al., “Cumulative Birth Rates with Linked Assisted Reproductive Technology Cycles,” New
England Journal of Medicine 366, no. 26 (June 28, 2002), p. 2483.

17. Gina Kolata, “Successful Births Reported with Frozen Human Eggs,” New York Times, October 17,
1997, p. A1.

18. David Colker, “It’s a Boy—Embryo Is Viable after 1990 Freezing,” Los Angeles Times, February 17,
1998.

19. Kirsty Horsey, “Twins Born 16 Years Apart,” Daily Mail (England), May 30, 2006, p. A1.
20. Richard Jerome, “In the Band,” People, July 1, 2002, pp. 48–50.
21. Sylvia Westphal, “New Way to Extend Fertility,” Wall Street Journal, April 20, 2007, p. A1.
22. Tamar Lewin, “Groups Opposed to Abortion Join Fights on Frozen Embryos,” New York Times,

January 20, 2016, p. A1.
23. Nancy Snyderman, “New IVF Technology Offers Dramatic Results,” NBC Nightly News, May 13,

2013.
24. Gina Kolata, “Soaring Price of Donor Eggs Sets Off Debate,” New York Times, February 25, 1998,

p. A1; Adrienne Knox, “Brokers and Fertility Clinics in Bidding War for Women Willing to Sell
Eggs from Ovaries,” Birmingham News, March 15, 1998, p. A3

25. Laura Mansnerud, “The Baby Bazaar: How Bundles of Joy Not for Sale Are Sold,” New York Times,
October 26, 1998.

26. Ibid.
27. U.S. State Department, quoted from New York Magazine, February 4, 2013, p. 7.
28. Elizabeth Cohen, “Surrogate Offered $10,000 to Abort Baby,” CNN Health, http://www.cnn

.com/2013/03/04/health/surrogacy-kelley-legal-battle.
29. Ann Curry, “After 10 Years, New Adventures for Septuplets,” Dateline, December 12, 2007, http://

www.nbcnews.com/id/22223331/#.USAS0hzB-AE.
30. Tamar Lewin, “Coming to U.S. for Baby, and Womb to Carry It,” New York Times, July 5, 2014.
31. “Grandmother,” People, June 28, 2006.
32. “Reproductive Health and Early Life Changes,” http://www.microsort.com/
33. “Single, Alone and Still Picky: Most Women Will Only Marry Men with a House,” eChinaCities,

January 15, 2015 (accessed January 22, 2016).
34. “Text of Vatican’s Statement on Human Reproduction,” New York Times, March 11, 1987, p. 10ff.
35. Laurie Goodstein and Elisabeth Povoledo, “Vatican Issues Instructions for Bioethics,” New York

Times, December 12, 2008.
36. Paul Ramsey, Fabricated Man, Yale University Press, New Haven, CT, 1970.
37. Steptoe and Edwards, A Matter of Life, p. 113.
38. Paul Ramsey, The Ethics of Fetal Experimentation, Yale University Press, New Haven, CT, 1975.
39. Joseph Fletcher, Ethics of Genetic Control: Enduring Reproductive Roulette, Doubleday Anchor, New

York; reprinted by Prometheus, Buffalo, NY, 1984, p. 36.
40. Joseph Fletcher, “Ethical Aspects of Genetic Controls,” New England Journal of Medicine 285, no. 14

(1971), pp. 776–781.
41. Time, November 13, 1978, p. 89.
42. John Marlow, quoted in U.S. News and World Report, August 7, 1978, p. 24
43. John Marshall, quoted in Time, July 31, 1978, p. 59.
44. Leon Kass, “The New Biology: What Price Relieving Man’s Estate?” Journal of the American Medical

Association 174 (November 19, 1971), pp. 779–788.
45. James Watson, “Moving towards the Clonal Man,” Atlantic, May 1971, p. 53.
46. Max Perutz, quoted in Steptoe and Edwards, A Matter of Life, p. 117.
47. Daniel Callahan, New York Times, July 27, 1978, p. A16.

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Chapter 5 Assisted Reproduction, Multiple Gestations, Surrogacy, and Elderly Parents 131

48. M. Hansen et al., “The Risk of Major Birth Defects after Intracytoplasmic Sperm Injection and In
Vitro Fertilization,” New England Journal of Medicine 346 (March 7, 2002), pp. 725–730.

49. Ibid.
50. Examination of leftover embryos created by IVF reveals a good deal of genetic abnormalities, such

as mosaicism and morphological problems (Yamada Shita, “ART and Birth Defects,” Congenital
Abnormalities 45 (2005), pp. 39–43). IVF may contribute to aberrant imprinting and DNA methyl-
ation or epigenetic changes in the embryo’s DNA. Scientists need to study whether different meth-
ods of stimulating superovulation or culturing embryos, as well as different times of transferring
embryos to the uterus, affect epigenetic alternations (M. Hansen, “ART and Risk of Birth Defects—A
Systematic Review,” Human Reproduction 20 (2005), pp. 328–338).

51. Amy Docker Marcus, “A Registry for Test-Tube Babies,” Wall Street Journal, September 16, 2003, p.
D1, D9.

52. M. Davies et al., “Reproductive Technologies and the Risk of Birth Defects,” New England Journal
of Medicine 366, no. 19 (May 10, 2012), pp. 1803–1813.

53. Jeremy Rifkin and Ted Howard, Who Shall Play God? Dell, New York, 1977, p. 115.
54. Hans Tiefel, “In Vitro Fertilization: A Conservative View,” Journal of the American Medical Association

247, no. 23 (June 18, 1982), pp. 3235–3242.
55. Jeff Minerd, “ESHRE: Birth Defect Risk Preferable to Childlessness in IVF Survey,” MedPage Today,

June 23, 2005.
56. Stolberg, “Quandary on Donor Eggs.”
57. Cynthia Cohen, “Parents Anonymous,” Cynthia Cohen (ed.), Egg Donation, Johns Hopkins Univer-

sity Press, Baltimore, MD, 1997.
58. Susan Schindelhette, “My Life as a Sperm Donor,” People, June 5, 2006, pp. 135–137.
59. For example, see Wesley J. Smith, “Eggs for Sale?” The Weekly Standard, May 20, 2013; David Tuller,

“Payment Offers to Egg Donors Prompt Scrutiny,” New York Times, May 11, 2010, p. D5.
60. Helen Ragone, Conception from the Heart, Indiana University Press, Bloomington, IN, 1994.
61. Frederic Golden, “Good Eggs, Bad Eggs,” Time, January 11, 1999, p. 58.
62. Mary Rutz, “Selling Eggs: Cost and Consent in the Bull Market,” Bulletin of the University of Illinois

at Chicago Department of Medical Education 5, no. 2 (January 1999), p. 3.
63. Dina Kraft, “Where Families Are Prized, Help Is Free,” New York Times, July 18, 2011, p. A5.
64. Tamara Audi and Arlene Chang, “Assembling the Global Baby,” Wall Street Journal, December 11–12,

2010, pp. C1–2.
65. Scott Carney, “Cash on Delivery,” The Red Market: On the Trail of the World’s Organ Brokers, Bone

Thieves, Blood Farmers and Child Traffickers, William Morrow, New York, 2011, p. 142.
66. Rick Weiss, “Bioethics Panel Calls for Ban on Radical Reproductive Procedures,” Washington Post,

January 16, 2004.
67. Time, August 7, 1978; Newsday, February 8, 2009, p. A46.

pen07945_ch05_109-131.indd 131 9/8/16 9:51 AM

Over the past three decades, ethical controversies about embryos intricately
mixed with controversies about cloning and stem cells. In July 2016, it has been
20 years since the lamb Dolly was cloned. This chapter discusses controversies about
embryos, stem cells, and all kinds of cloning.

BACKGROUND ON EMBRYONIC RESEARCH,
CLONING, AND STEM CELLS

In 1973, Roe v. Wade made abortion legal in all states. As soon as laws permitted
abortions, researchers legally experimented on 20 live-born fetuses, seemingly
degrading nascent human life.1

Five years later, and without cultural agreement or approval of an ethics com-
mittee, Patrick Steptoe and Robert Edwards reversed infertility by creating “test
tube” baby Louise Brown. In doing so, and using in vitro fertilization (IVF), they
created and destroyed about 100 human embryos. Then, as today, the creation of
babies by IVF had the foreseen but unintended by-product of sacrificing human
embryos that did not implant.

In 1979, obstetricians Howard and Georgeanna Jones established an IVF clinic
at Eastern Virginia Medical School. In 1981, they helped create the first American
baby born via IVF, Elizabeth Carr. While the embryo that became Elizabeth Carr
was being formed, opponents protested outside. Conservative Christians saw IVF
as alien and suspect, because scientists were creating humans in artificial ways,
outside of sexual intercourse and the womb, violating natural law.

So began the politics of the embryo, which have intensified over the past
40 years. In 1977, the Ethics Advisory Board concluded that some research with
embryos should be permitted, but Congress never accepted its conclusions.

The Rios Case When Mario and Elsa Rios, a wealthy American couple, died child-
less in 1981, their IVF-created embryos existed in frozen limbo. Because neither the
Rioses nor their infertility clinic in Australia had thought about the death of their
embryos, the question arose whether the embryos could be destroyed. If implanted

C H A P T E R 6

Embryos, Stem Cells,
and Reproductive Cloning

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Chapter 6 Embryos, Stem Cells, and Reproductive Cloning 133

in surrogates, the embryos could result in children who could inherit the Rios’
fortune.

An ad hoc committee in Australia required scientists to preserve the embryos
until they were adopted. They never were, and over the years, freezing made them
deteriorate (as all frozen embryos will eventually), making the issue moot.

The Davis Case In 1990, Mary Sue and Junior Davis of Tennessee divorced and
fought for custody of their seven embryos frozen in an IVF clinic. After her remarriage,
Mary Sue Davis wanted to donate their embryos to an infertile couple, but Junior dis-
agreed. In 1992, the Tennessee Supreme Court decided that Junior needn’t become a
father against his will. After that, a lower Tennessee court ruled that he could destroy
the embryos, which he did.2 In 1994, the Human Embryo Research Panel concluded
that federal funding of research with embryos would improve the success and safety of
procedures to reduce infertility and that prohibiting federal funding would harm the
quality of such research.

It called embryos created specifically for research embryos and those leftover
after successful IVF spare embryos. The panel rejected the compromise that research
could be done only on spare embryos. As expected, leftover embryos from couples
unsuccessfully attempting IVF had higher rates of genetic abnormalities, and
research needed to be done on exactly such embryos.

Politically savvy members of the panel thought Congress would accept their
modest recommendations, but, preoccupied with partial-birth abortions in 1995,
Congress rejected them.

In 1996, Congress added the Dickey-Warner Amendment to National Institutes
of Health’s (NIH) appropriations bill: “None of the funds made available in this
act may be used for . . . research in which a human embryo or embryos are
destroyed, discarded, or knowingly subjected to risk of injury or death greater than
allowed for research on fetuses in utero.” English and Australian governments
allowed public monies to fund research on embryos up to day 14 of life. As a result,
companies based in these countries soon licensed breakthroughs to American
researchers.

Geneticist Marl Hughes had once made Science magazine’s list of top break-
throughs for his technique of taking DNA from a single cell of a human embryo
and testing it for cystic fibrosis. Taking the cell did not damage healthy embryos,
but such testing did mean that embryos with cystic fibrosis would be destroyed.

Although the ban on federal funds had stayed in effect, scientists such as Hughes
could work on embryos that were privately funded, that is, from private charities such
as Planned Parenthood or the March of Dimes. In 1997, Hughes had private funds
to pursue embryonic screening and much larger federal funds to pursue other
research that did not involve human embryos. Yet Hughes lost all federal funding
because federal funds had paid for a small refrigerator mistakenly placed in his pri-
vate lab.

1997: Dolly Is Cloned On February 24, 1997, every newspaper in the world screamed
that a lamb named Dolly had been created by cloning (she was actually born on the
previous July 5, 1996, but patents on the techniques were finalized only in February).
Cloning, a technique previously thought impossible to use to create mammals,

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134 Chapter 6 Embryos, Stem Cells, and Reproductive Cloning

conjured scary scenarios from science fiction. Dolly’s birth galvanized interest in
cloned human embryos, especially embryos that might be created, implanted in a
woman, and gestated to a human baby.

Where they had felt ambushed by Roe v. Wade and the birth of Louise Brown,
as well as the unanticipated success of IVF clinics, social conservatives vowed this
time to resist. It is as if they said to scientists, “At cloning, we draw the line and
beyond, ‘You shall not pass!’”

Cloning Science ”Cloning” is ambiguous, even in science, and may refer to molec-
ular cloning, cellular cloning, embryo twinning, or somatic cell nuclear transfer
(SCNT). The latter takes the nucleus of an adult cell and implants it in an egg where
the nucleus has been removed.

A variant of this process called fusion (which was actually done to produce
Dolly) puts the donor cells next to an enucleated egg and fuses the two with a tiny
electric current. Because the pulse that produces fusion also activates egg develop-
ment, a blastocyst—an embryo of about 100 cells—starts to develop.

In cells, mitochondria are oragnelles that do many things, such as fueling the
cell, signaling, and carrying genes implicated in serious human diseases. In fusion,
mitochondria from both the donor and the egg recipient mix, whereas in strict
transfer of a nucleus, mitochondria are present only in the enucleated egg.3

At a 1997 conference on mammalian cloning, Ian Wilmut, Dolly’s originator,
stressed that his techniques were inefficient: He started with 277 sheep eggs and
got only one live lamb. Nevertheless, his statement has been widely misunderstood,
partly because he has emphasized how many eggs he started with and not how
many fetuses resulted in live births. The actual statistics were 277 eggs fused with
sperm in oviducts, 247 of 277 recovered from oviducts, 29 transferred at the stage
of morula or blastocyst to create 13 pregnancies in lambs, three of which came to
birth, and one of which was healthy and lived, Dolly.4

1998: Immortalized Human Stem Cell Lines Created Found in embryos, bone mar-
row, and the umbilical cord, stem cells help the injured body grow new cells. If the
body loses blood, it activates stem cells to make new blood. As primordial cells,
stem cells can develop into any kind of differentiated cellular tissue: bone, muscle,
nerve, and so on. In theory, they could be directed to form new bones, neural cells,
cardiac tissue, and cure diseases.

Physicians already knew that the human body had stem cells, but they had no
easy way to grow them. Then John Gearhart of Johns Hopkins University and James
Thomson of the University of Wisconsin in 1998 discovered how to continually
produce stem cells—to create an immortalized stem cell line—rather than tediously
derive them from minute amounts of tissue from embryos or fetuses.

In effect, Gearhart and Thompson discovered how to make human embryos
into tiny “stem cell factories.” Such objectification of human embryos bothered
critics, who felt that using human embryos for such purposes demeaned the dignity
of human life and led down the slippery slope.

1998: ACT Uses Cow Eggs to Grow Human Embryos In 1998, Advanced Cell
Technology (ACT) of Massachusetts announced that it had made differentiated

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Chapter 6 Embryos, Stem Cells, and Reproductive Cloning 135

human cells revert to a primordial state by fusing them with cow eggs. Although
the cow egg was just the medium for the nucleus of the human cell (the nucleus
of the cow egg had been removed), the procedure sounded alarms. Once again,
biotechnology seemed out of control. President Clinton and his National Bioethics
Advisory Commission (NBAC) condemned any attempts to create children out of
such hybrids (although no one wanted to try to create such beings or was suggest-
ing doing so).

2001: NBAC Backs Research on Embryonic Stem Cells Although it condemned
reproductive cloning in 1998, the NBAC concluded in 2001 that the government
should fund research on stem cells created from human embryos. Congress never
accepted this recommendation, in part because cloning embryos connected to the
larger, controversial issue of reproductive cloning.

Fraudulent Claims and Kooks Cloning soon took up more media time than any
issue in the 35-year history of bioethics. With physicist Dick Seed wanting to clone
himself, and with the bizarre cult called “the Raelians” and Panayiotis Zavos and
Severino Antinori falsely claiming to have cloned a human fetus, cloning created one
sensational story after another, scaring people about identical babies being produced
like immortalized stem cell lines.

2001: Adult Stem Cells Discovered In 2001, scientists discovered stem cells not
only in bone marrow but also throughout the human body. Researchers started
using adult stem cells in research rather than using stem cells derived from human
embryos.

In the next five years, researchers discovered that many organs and tissues con-
tain precursor cells that act like stem cells. These adult stem cells became specific
kinds of cells more quickly than embryonic stem cells, for which scientists do not
know how to do the same. One director of an institute for regenerative medicine
says, “Brain stem cells can make almost all cell types in the brain, and that may be
all we need if we want to treat Parkinson’s disease or ALS. Embryonic stem cells
might not be necessary in those cases.”5 Similar, specific adult stem cells can be
obtained from the intestine, skin, liver, and bone marrow. For heart disease (and
many other organs or tissues), the director of Harvard’s Stem Cell Institute says, “If
you could find a progenitor cell in the adult heart that has the ability to replicate,
it’s likely easier to start with that than begin with an embryonic stem cell, which
has too many options.”6

But most adult organs contain few stem cells, not nearly enough to use medi-
cally, and adult stem cells are even harder to grow than embryonic stem cells. More
fundamentally, “Unlocking the secrets of self-renewal will most likely involve study-
ing embryonic stem cells,” says Harvard’s director.

2001: President George W. Bush’s First Press Conference On August 11, 2001,
President George W. Bush, in the first press conference on bioethics by an Ameri-
can president, announced his policy on federally funded research on human
embryos. He rejected using such funds to create embryos for research but allowed
them for research on 60 stem cell lines created from spare embryos. Carried live

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136 Chapter 6 Embryos, Stem Cells, and Reproductive Cloning

on television in prime time, his press conference signaled that bioethics had arrived
in American politics.

A year after that press conference, the number of stem cell lines appeared to
be small, about 15. Scientists then questioned whether President Bush’s policy
would get them the biological material they needed. Years later, scientists regarded
the 15 stem cell lines as inadequate.7

Cloning and the Law Senator Sam Brownback, who became governor of Kansas
in 2010, in 2001 pushed a bill in Congress to make all forms of cloning a federal
crime. Congress attempted to separate embryonic from reproductive cloning several
times over the next five years, culminated in a veto by George W. Bush in 2006 to
allow federal funding of research on embryos. Taking over the presidency in 2008,
Barack Obama allowed such funding.

President Bush also tried to ban all forms of cloning worldwide, but his proposal
stalemated in the United Nations. Korea, Malaysia, and China aligned with Euro-
pean countries and resisted the measure. Malaysia invested $26 million in BioValley,
a cluster of 100 new biotech companies to work on stem cells.8 China also invested
in cloning technology, hoping to succeed where the West had stumbled.9

With Congress stalemated, action about cloning fell to the states. Californians in
2002 passed Proposition 71, giving $3 billion for stem cell research from human
embryos. State legislatures across the land then battled either to fund or to criminalize
embryonic cloning. Wisconsin, New Jersey, Connecticut, Illinois, Washington, Ohio,
and Maryland funded similar research, whereas Massachusetts, Missouri, Arkansas,
Indiana, Iowa, Michigan, and North and South Dakota voted to criminalize all
cloning.10

By 2006, 13 states criminalized attempts at reproductive cloning, including
Arkansas, California, Connecticut, Indiana, Iowa, Maryland, Massachusetts, Michigan,
New Jersey, North Dakota, Rhode Island, South Dakota, and Virginia.11

Animal Cloning In the years after Dolly’s birth, scientists cloned animals important
for food and research: two calves (1998), the lambs to create Factor IX (1998), three
generations of mice (1998), a Rhesus monkey (1999), five pigs (2002), a goat (2002), a
rat (2003), many champion dairy cows and bulls (1998–2004), a horse (2003), a mule
(2003), a deer (2003) named “Dewey”, and a cat named “Carbon Copy” or “CC” (2001).

Researchers have not been able to clone a primate, much less clone primates
reliably, and without harming proteins which guide chromosomes in cell division.
Unless these spindle proteins could be made to behave properly, any babies born
in this way would almost certainly be damaged.12

In 2005, the South Korean team of Hwang Woo-suk cloned an Afghan hound,
named “Snuppy.” Because of their complex reproductive system, dogs had previ-
ously eluded cloning scientists, but Hwang’s team succeeded, an achievement that
remains undisputed despite his fraudulent claims about cloning human embryos.
Later, they produced five cloned “sniffer dogs” possessed of extraordinary ability to
smell drugs at airports.

2004: Hwang Woo-suk’s Fraud about Cloning Embryos In 2004, seemingly out of
nowhere, Hwang Woo-suk announced that he had not only successfully cloned

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viable human embryos but had also derived viable stem cells from these embryos.13
Before this claim, biologists thought that creating a human stem cell in embryos by
cloning could not be done. His account emphasized the relaxed Buddhist attention
and skills of his team. Importantly, he said these stem cell lines genetically matched
cells of donors, opening doors to study cells of victims of diseases such as Alzheimer’s
or Lou Gehrig’s disease.

He announced his feat at a meeting in Seattle of the American Association of
Science. Richard Doerflinger of the U.S. Conference of Catholic Bishops called the
feat a “clear and present danger” to the dignity of human life. Actor Michael J. Fox
hailed it as a major breakthrough. Handsome and wearing a business suit, Dr.
Hwang seemed to symbolize progress in medicine, especially when condemning
President George W. Bush’s hostility to his research.

But questions soon arose about his published photos of embryos, which did not
seem to be of different embryos but of the same ones.

In 2005, Hwang’s assistants testified that Hwang had forced them to fabricate
results and to alter pictures of embryos. An investigation concluded that Hwang
had not in fact produced any stem cell lines from human embryos, had not discov-
ered easy techniques for doing so, and had not produced matching stem cell lines
to cells of donors. Hwang was found guilty in South Korea for misusing millions of
dollars of funds specially given to him for his work and for violating Korean laws
in bioethics. He was sentenced to a two-year suspended prison sentence and was
barred from receiving further funds.

Why was it hard to expose Hwang’s fraud? Simple: federally-funded American
researchers then could not do any research on human embryos, so the Korean’s research
could not be easily falsified in America, the leading center for biotechnology.

Like the Raelians, Hwang was a fake. The media covered both fakes too much,
damaging legitimate medical progress.

2006: The Senate Vote and Presidential Veto On July 18, 2006, the U.S. Senate
voted to expand federal funding of embryonic stem cell research, passing a bill that
had passed the House the year before. The next day President Bush, as he had
promised to do, vetoed the bill, the first of his administration. Bush said the bill
would be “crossing a moral line and would support the taking of innocent human
life.” He was surrounded by dozens of “Snowflake” children, who were born from
an embryo-adoption program, and their parents. “These boys and girls are not spare
parts,” the president announced.14

Representative Nancy Pelosi of California, the House minority leader, retorted
that Bush’s veto was “saying ‘no’ to hope.” And Senator Orrin Hatch agreed, saying
the veto “sets back embryonic stem cell research another year or so.” During the
eight years of George W. Bush’s presidency, little research from federal funding
occurred on stem cells from human embryos.

2009: Obama Administration Reverses Bush Policies On July 7, 2009, federal reg-
ulators in the Obama administration set new rules for research with embryonic stem
cells.15 The president created a panel of scientists and ethicists to ensure that cou-
ples truly consented to using their embryos to create stem cells. Scientists and the
American Medical Association liked the results.

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2007–2009: IPS Cells Discovered In 2007, researcher Shinya Yamanaka of Kyoto
University discovered how to use four genes to tell skin cells to revert back to plu-
ripotent cells, or induced pluripotent stem (IPS) cells. It took a while for the world to
understand this achievement that garnered Yamanaka a Noble Prize in Physiology
and Medicine in 2012 (shared with John Gurdon).

In essence, Yamanaka taught four transcription factors to tell a differentiated,
somatic cell how to revert back to a primordial, undifferentiated stem cell. These
powerful cells eliminated the need for both embryonic stem cells derived from
actual embryos and of eggs from female donors to create embryos.

In July 2009, further progress occurred with induced stem cells.16 Two Chinese
teams created identical mice using embryonic stem cells created from IPS cells
derived from the skin of the ancestral mice. This achievement proved that IPS cells
are the equivalent of human embryonic cells in producing stem cells.

Controversies about Swapping Mitochondria In 2009, researchers swapped
mitochondria in embryos of monkey mothers, replacing bad DNA with good DNA.
Mitochondria carry some terrible, heritable genetic diseases, such as diseases caus-
ing muscular degeneration.

When the nucleus of a somatic cell is transferred from an existing person (an
“ancestor”), it must be transferred into something, and that “something” is a healthy
egg, from which the original nucleus has been removed. And it turns out that those
host eggs contain some DNA.

Host eggs with their original nucleus removed still contain something called
mitochondria, literally “grain-like threads” in ancient Greek. These threads are fre-
quently referred to as the powerhouse of the cell; they fuel cellular processes and,
when dysfunctional, can cripple the body.

Human mitochondria contain 37 genes, which contain some very bad heritable
diseases. So bad, in fact, that in England they have cleared the way for families
with devastating, inheritable mitochondrial diseases to use biotechnology to swap
the bad mitochondria in the mother’s egg with healthy mitochondria from a donor,
in hopes of eliminating disease that may have plagued a family for generations.

Mitochondria replacement represents a different kind of gene therapy than the
standard one, which fixes the lack of a particular, functional gene in a sick kid,
because the changed genes are heritable and can be passed on to future generations.
This is called germ line gene therapy (adding or replacing a single gene in a way
that is not heritable is called somatic therapy). Although some ethicists and scientists
think society should not have crossed this ethical bright line (they think somatic
gene therapy is dangerous enough, let alone therapy with an impact that continues
for generations), champions of germ line gene therapy retort that the whole point
of making the change is to get rid of the inheritable disease for all future children of
the descendants.

What the existence of those 37 potentially deadly mitochondrial genes means for
cloning is that whatever mitochondrial genes, or diseases, reside in the egg used will
be inherited by any resulting clones as well as any offspring they may produce.

In 2015, Britain’s Parliament legalized mitochondrial DNA transfers to combat
disease, although it has not yet been actually done in humans. The popular press
focused on the red herring of a child having genes from “three parents,” as if this

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was the main ethical concern of a teenager dying of irreversible muscular
degeneration.17

Dolly’s Death Following Dolly’s death at six and half years, critics claimed that
there was something about her unique origination that led to her early demise—that
because Dolly’s DNA came from a lamb that had already lived many years, Dolly
at birth had DNA whose telomeres were already short. Telomeres are the non-gene
segments of DNA at the tips of chromosomes, and as they shorten, our cells age
and we get age-related problems.

Ian Wilmut cites two reasons for Dolly’s death. First, she was overweight,
thanks to all the tourists, scientists, and reporters who fed her treats while visiting
her. Second, for her protection, she lived indoors. All the time spent standing on
her hind legs begging for treats, along with her extra weight, caused Dolly’s hip to
dislocate, which contributed to her death from a progressive, irreversible disease
caused by a respiratory infection that sheep living indoors commonly contract.

A postmortem analysis revealed that Dolly’s telomeres were in fact consistent
with a lamb much older than her six years.18 So some reduction in her telomeres
due to the advanced age of her donor’s udder cells may have contributed to her
death. If her immune system was weaker because her telomeres were shorter, she
may have had less ability to fight off lung infection than a younger lamb. If short-
ened telomeres helped kill Dolly early, whether directly or indirectly, this risk
extends to all cloned animals, especially those whose ancestor was of advanced age.
However, a study published in 2016 of four sheep aged 7 to 9, equivalent to 60 in
human years, showed no evidence of premature aging.19

Setbacks to, and Hucksterism in, Stem Cell Research Many “gee whiz” predictions
about stem cells did not come true. First, IPS cells derived from, for example, skin cells
seem to retain memory traces of being skin, such that they cannot easily be turned
into functioning cardiac cells. Second, IPS cells have been employed in clinical trials
to help patients with heart disease, with damaged spinal cords, or needing bone mar-
row transplants, but results so far have not been hugely therapeutic. Hence, we may
need to create stem cells derived from cloned embryos created from a patient’s own
cells and then use those stem cells in new research to help the patient. Clinics offering
stem cell treatments opened in Mexico and in clinics across America in an area strangely
unregulated by the FDA. In May 2015, USA Today reported on the alleged recoveries
of two legendary heroes of sports: National Hockey League star Gordie Howe and
National Football League star John Brodie. After suffering massive strokes, both traveled
outside the country for injections of stem cells from aborted human fetuses—a proce-
dure illegal in the United States but permissible in some other places. Brodie went to
Russia, Kazakhstan, and Mexico; Howe to Mexico. After the injections, each man’s
family claimed remarkable recoveries, claims yet to be medically substantiated.20

Finally, and alas, charlatans have promised miraculous cures from unproven treat-
ments with stem cells. In Texas, and taking advantage of Libertarian hostility to gov-
ernmental regulation, Governor Rick Perry allowed an exemption for such treatments
from the normal requirement of FDA approval for Celltex, a controversial company
that both provided Perry himself with treatments (for back pain) and which contrib-
uted to his political campaigns. In 2013, the FDA sent Celltex a warning letter, causing

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it to cease treatment in America. It also got bioethicist Glenn McGee into trouble for
being paid by Celltex and for seeming to endorse Celltex and its expensive treat-
ments.21 In 2016, an astonishing 570 stem cell clinics operated across America, many
making unproven claims and misleading many desperate patients, creating growing
pressure on the FDA to regulate these clinics and their claims.22

ETHICAL ISSUES ABOUT REPRODUCTIVE CLONING

Controversies about human embryos remain. As long as IVF clinics implant more
than one embryo or couples fight over frozen embryos, people will debate the moral
status of the embryo. Some scientists also believe that stem cells derived from
embryos may work better than IPS cells for certain purposes.

Valuable from Conception

For Thomas Aquinas in the thirteenth century, ensoulment occurred at 40 and 90
days for male and female fetuses, respectively, and therefore nothing of value
resided in the womb before those points. In 1869, Pius IX announced that abortion
at any stage resulted in excommunication.23 Since then, Catholic teaching has
emphasized the value of human life from the moment of conception. So it was no
surprise that in 1982, Pope John Paul II said to a group of scientists:

I condemn, in the most explicit and formal way, experimental manipulations of the
human embryo, since the human being, from conception to death, cannot be
exploited for any purpose whatsoever.24

Potential for Personhood

Many scientists say that before 14 days, the human embryo has no human form
and cannot experience pain. Why then give it value? One reply is that, despite the
fact that some zygotes become pathological tissue and some zygotes become twins,
the embryo is, as Jesuit priest Richard McCormick says, “powerfully on its way” to
development as a person. Even though it may later twin or not implant, conservative
believers see it as already a member of the human family.

Why is that? As McCormick writes about the human embryo:

. . . it remains [as having] potential for personhood and as such deserves profound
respect. This is a fortiori weighty for the believer who sees the human person as a
member of God’s family and the temple of the spirit. Interference with such a
potential future cannot be a light undertaking.

The fact that 400,000 embryos are frozen and deteriorating over time and may
become non-viable has created a new kind of adoption. The Snowflake program
arranges adoptions of embryos and claims 420 to date have become babies.25 The
program charges $15,000 for home study, matching of embryo and adopting couple,
embryo transfer and shipping, and a legal contract with lawyers.

However, we now know that any cell of the body can become a person. The
nucleus of a differentiated cell can be put into an enucleated human egg, a spark

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applied, and a new embryo can be formed that is a near-copy of the genetic ancestor.
Whether we use SCNT, IPS cells, or fusion, the truth is that we can form human
embryos in a variety of ways—and they all contain full potential for personhood.

The revolutionary aspect of recent advances in biology is that they do not make
embryos, but any human cell, special. The dignity of the embryo begins to collapse
into the dignity of the cell.

Slippery Slopes

In addition to asserting the intrinsic value of the embryo, McCormick worries about
what happens when human embryos are regarded as mere commodities for research
(or as little factories to produce stem cells). (In the following passage, “preembryo”
refers to the embryo before implantation on the uterine wall.)

If we concluded that preembryos need not be treated as persons, would we little
by little extend this to embryos? Would we gradually trivialize the reasons justifying
preembryo manipulation? . . . Furthermore, there is uncertainty about the effect of
preembryo manipulation on personal and societal attitudes toward nascent human
life in general. Will there be further erosion of our respect? I say “further” because
of the widespread acceptance and practice of abortion.26

Here, we first have a conceptual slippery slope argument, asserting that if trivial
reasons justify experimenting on embryos before 14 days, then similarly trivial rea-
sons will justify experimenting on first-trimester fetuses and then on more devel-
oped fetuses. McCormick also has an empirical slippery slope argument here,
predicting that acceptance of the deaths of embryos will generalize to acceptance
of deaths of fetuses.

Reductio ad Absurdum

Many commentators think that treating the embryo as valuable because it is a
potential person can be refuted by a reductio ad absurdum: a line of reasoning that
shows that implications of an idea are absurd and thus cast doubt on the idea itself.
In this instance, if a woman starts procreating in her teens and continues through-
out her fertile years, she can produce a dozen or more children. If each potential
person is valuable, then she ought to conceive as many children as possible. Given
the consequences of overpopulation, this conclusion hardly makes sense.

If embryos are persons, the following involve killing persons: creating embryos
for in vitro fertilization and freezing them for later use, pre-implantation genetic
diagnosis, or medical research. Similarly, if embryos are persons, then intrauterine
devices (IUDs) and Plan B (the “day after pill”), both of which prevent implantation
of embryos, also kill persons.

If these implications are false, then the premise that generated these claims is
false, and that premise is that human embryos are persons.

Of course, it might be possible, thinking of Judith Jarvis Thomson, to accept
the premise that embryos are persons, but to deny a further premise that persons
can never be killed. Also, when no particular woman has a duty to gestate them,
a philosophical difficulty arises in claiming a right to life for frozen embryos.

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The Interest View

Philosopher Bonnie Steinbock argues that having moral status (i.e., being the kind
of being who must be considered from the moral point of view) is limited to beings
“who have interests.” For her, a necessary condition of having an interest is being
able to desire something. One of the most basic desires is to avoid pain. We don’t
think vegetables feel pain, so we don’t think they have desires. We do think cats
and dogs feel pain, so we think they have interests.

Courses in law school say a great deal about interests, conflicts among interests,
and how to resolve them. As such, the concept of interest covers a lot of intellectual
territory.

As for embryos, it is commonly accepted that before the emergence of the
primitive streak at 14 days, there is no possibility of any neural development such
that any being could “be there” to feel pain. The human embryo at this stage is
more like a blackberry than a tadpole. To say this a different way, embryos cannot
feel pain at 14 days. Nor is it likely that anything feels pain for a long time after
14 days. Although commonly pictured as a third-trimester fetus, an embryo does
not look like a human fetus and has no real nervous system until after the time
when most abortions are done (around 13 weeks).

As such for Steinbock, the embryo has no desires about what happens to it, so
it has no interests and no moral status. So it does not matter whether an embryo
fails to implant in the uterine wall, whether it is dislodged by an IUD, or whether
it is used in research. It only begins to matter when neurons form to create sentience,
the ability to feel pain.

Steinbock distinguishes between moral status and moral value. Beings can have
moral value, even if they lack moral status. For her, to say that something has moral
value is to say that there are good reasons for protecting it or being concerned about
it. So wilderness and works of art can have moral value, even if they lack interests
and lack moral status.27

For Steinbock, embryos have moral value but no moral status, and as such,
reasons exist for protecting their usage, for respecting them, and for not devaluing
them as mere tissue.

But how much do people really value embryos? Two-thirds of the human embryos
stored at two fertility clinics in England had to be destroyed because the owners did
not respond to a letter asking about their wishes.28 Given that these owners are the
most affected by their destruction, such couples do not seem to put much value on
these embryos—at least, in responding to a letter about consenting to keep them
alive in public clinics.

England has allowed its scientists to create human embryos for research and to use
them in such research for up to 14 days of development.29 In the years in which that
has been legal, no great changes in the fabric of English life seem to have occurred, nor
has there been a massive slide down a slippery slope of loss of human dignity.

Embryos and Respect

Bioethicist David Ozar once argued that although an embryo may not be a person,
neither is it just a pebble or a tissue.30 Embryos are not simply the property of an
owner. They deserve respect in view of their potential as persons.

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What does respecting an embryo mean? Well, for one thing, embryos should
not be eaten, encased in plastic as earrings, or bred into mixed-species hybrids.
Gene Outka claims that respecting embryos also means that human embryos should
not be substituted for the eyes of rabbits in testing cosmetics.31

Another way to put this point is to emphasize that a large amount of bodily
products, such as bone, cartilage, blood, and tissue, can be legally sold from cadavers.
Some firms specialize in such sales and broker them to research institutions and
medical schools. Respecting embryos would include banning them from being bought
and sold this way.

It is possible to be a good scientist and treat human embryos with respect in
medical research. One might make an analogy with animal experimentation. To test
new forms of heart surgery or new kinds of lenses for human eyes, we harm ani-
mals. But in using animals for our benefit this way, we should minimize their pain
and psychological terror and not make fun of them in any way.

In the same way, researchers who have the privilege of using human embryos
should be taught, required, and legally enjoined to treat them with the greatest
respect. That respect prevents a slippery slope to devaluing other human lives.

To make another analogy: physicians and medical students should treat the
newly dead with respect and not practice intubation or spinal taps or surgery on
them without the family’s permission, for to do so is to offer no respect to the life
just expired or to those who loved the patient. In the same way, one could argue
that human embryos should be treated carefully in view of the persons that—under
different circumstances—they could have become.

Indeterminacy. Father Richard McCormick does not assert that human embryos
are persons but thinks we should treat them as if they were. Why? Because we
don’t know exactly when personhood begins. To use his analogy, if the hunter is
unsure whether something moving in the bushes is a deer or a human, he shouldn’t
shoot.

Similarly, at the other end of life, if we are unsure whether a patient will emerge
from a coma, shouldn’t we wait as long as possible before removing a feeding tube?

A subtler objection emphasizes the indeterminancy of the boundaries of sen-
tience. When patients are under sedation for surgery, well-publicized stories have
taught us that they can hear. Some patients have been declared dead and then
awakened, recalling jokes made in their presence and procedures done on them (an
important argument for not allowing medical students to train on the newly dead).

Similarly, we are not sure exactly when the embryo develops sentience. Perhaps
the most rudimentary form is like phototropism when a plant bends toward light.
Even so, when any doubt exists, we should be cautious and, under a general prin-
ciple of respect, not subject embryos to any medical research, just as we would not
subject patients in vegetative states to such research.

The Opportunity Cost of Missed Research

In any decade, few really major breakthroughs occur in medical research. The creation
of immortalized stem cell lines from human embryos was one such breakthrough.
Not allowing this line of research to be federally funded was a major tragedy.

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It is not enough to let private companies or other countries fund the research.
America’s NIH is the crown jewel of the world’s scientific treasure, and it is a tragedy
that its researchers could not pursue this new area. Moreover, by allowing federally
funded studies, we ensure the highest level of peer-reviewed, objective research.

By banning use of embryos in federally funded projects, Congress deprived
millions of people of new medicines that otherwise might not be discovered for
another 100 years.

My Tissue

One of the well-known problems of transplants of foreign organs, blood, and tissue
into a patient’s body is rejection of the foreign material when recognized by the
immune system. Drugs that suppress the immune system to allow acceptance of
foreign tissue may cause cancer after decades of use. It would be much better to grow
bone, blood, organs, or particular masses of cells from one’s own body for future use.

Creating embryos from one’s own cells could be used to grow tissue for one’s
future medical needs. By using donor cells, embryos could be created by embryonic
cloning that are nearly identical copies of one’s genome.

Libertarians argue that what an individual does with his or her body should be
up to him or her. A federal ban on storing self-made medicine from one’s own
embryos allows government to take away this personal liberty.

Moot?

The creation of IPS cells means that we can get the valuable stem cells we need for
research without destroying human embryos. Whether you see this as a brilliant
scientific discovery or a gift from God, or both, the fact is that the impasse of
2000–2010 motivated scientists to seek a way around it, which they did.

Some researchers say we should keep all the tools on the table and that human
embryonic stem cells may be better for some purposes that IPS cells cannot fulfill.
Even so, with this new source of stem cells, some of the preceding arguments lose
their punch.

REPRODUCTIVE CLONING

Reproductive cloning alarms many people, perhaps because of the way it’s portrayed
in movies and science fiction. As such, we first need to address some misconcep-
tions about it.

Reproductive Cloning: Myths about Cloned Persons

1. Cloning does not reproduce an existing person. Reproductive cloning re-creates the
genes of the ancestor, not the ancestor himself. Cloning re-creates the genetic
base of a person, but a person’s identity partly stems from nongenetic sources,
such as his or her experiences growing up.

This means that you can’t reproduce yourself. Of course, any resulting child
would not have the memories of the adult ancestor. Narcissistic people who

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want to clone themselves will be disappointed. Cloning reproduces about 99.8
percent of the ancestor’s genes (the other 0.2 percent come from mitochondrial
genes in the host egg), but even 0.2 percent difference at conception can be
significant. Identical twins have small differences in random inactivation of the
X chromosome in embryonic development, and this results in their different
personalities and traits as adults.

2. Cloned humans would not be drones but persons. A child created by reproductive
cloning would, like any other fetus, need to be gestated by a woman for nine
months. The child would have no distinguishing marks on him or her to indi-
cate his or her origins. The child would feel, sense, think, and hurt like any
other human child.

Would a cloned child’s origins affect his or her status as a person? Critics once
thought that IVF kids might suffer discrimination, but that never happened. Most
likely, children created by cloning would be persons with all the rights of other
persons.

Leon Kass implied that prejudiced people might treat cloned children as less-
than-human. If this were so, it might not be in the best interest of them to be
originated this way.

But notice that the same logic implies that it might not be best to be created
as a child of an interracial couple because “other people” might be prejudiced
against such marriages and their children. The effect of such reasoning is to
strengthen prejudice, not to weaken it, and to give prejudice too much weight in
what, after all, is supposed to be moral reasoning. For this reason, we must be
careful when we speak of children originated by cloning. To call them “clones” may
be prejudicial if this term implies bad things about such children. Similarly, to imply
that children created by cloning would be raised in batches connotes all kinds of
bad, silly things, such as seeing them as zombies, as sources of organs for genetic
ancestors, and, in general, as less than human. In short, babies created by cloning
would not be zombies, but—legally and morally—persons.

Against the Will of God?

Many clergy believe that originating children by cloning is not God’s will. God
ordained in Genesis that humans should reproduce as did Adam and Eve, man and
woman begetting children, and that is God’s plan for humanity. To deviate from
the plan is wrong. Just as gay men and lesbians were not meant in this plan to have
children, so children were not meant to be created asexually.

Notice that this argument is an inference about God’s will. Nowhere in any
scripture does it say that medical science should not use reproductive cloning to
produce children. Notice too that most advances in the history of medicine have
overcome the argument that the change is against God’s will.

The Right to a Unique Genetic Identity

With Dolly’s birth, the possibility emerged of cloning a human baby. Various people
began to assert that what was wrong with cloning a human baby from a genetic

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ancestor’s cells was that it would violate the right of each person to a “unique
genetic identity.” Some theologians at the Vatican made this claim (although they
had never made it before Dolly’s birth).

An initial problem about this argument concerned twins. Since so-called iden-
tical twins share 99.9 percent of their genes, is their right to a unique identity
violated by being a twin? Certain techniques of assisted reproduction, such as
implanting many embryos, drastically increase the likelihood of such twins. Are
they wrong?

A bigger problem with this objection is the assumption that one’s genes are
one’s identity. This reductionist line of thinking in modern genetics lies behind
similar objections that a child created by cloning would not have a soul because it
shared the same genes as the ancestor. Both objections assume that genes make the
person, the self, the identity, and yet we know that is incorrect because environ-
ment also contributes to personhood (and possibly, so does free choice).

Unnatural and Perverse

Many people also wonder about the motives behind cloning. They ask, Why would
anyone want to create a child by cloning? Why not use the fun method of sex? If
a couple is unable to have a child through sex, why not adopt?

Sexual reproduction is natural. Cloning, or asexual reproduction, is unnatural.
What is good for plants or animals should not be used for humans.

Something is wrong with parents who want to clone a child. They are either
narcissistic or so desperate—after all other methods of having children have failed—
that they will subject their future child to a perverted experiment in which his or
her personhood will be at risk when he or she later learns that he or she is “just a
clone.”

In reply, it should be noted that this objection begs a lot of questions. First, it
assumes that what is primitive or natural is always best. That is certainly not true
for a man and woman who are naturally infertile. Second, it assumes that the new
way of making babies is perverse and therefore wrong, a charge that greeted many
other new ways of making babies in the past. Finally, it assumes bad motives on
the part of would-be parents.

The Right to an Open Future

Critics claim that parents will choose to create a child with a certain genotype, say,
that of an athlete, actor, or dad, with certain expectations. After their investment
in in vitro fertilization, they would expect the resulting child to have qualities similar
to the ancestor.

But the future should be entirely open to every child. It is wrong for tennis
mothers to impose their wills on their children in their hell-bent determination to
make them tennis stars, wrong for certain parents from an early age to push their
children into medical careers, and wrong for soccer dads and Little League coaches
to push their children into athleticism.

Why is this so? The heart of the objection about a closed future lies in explain-
ing this answer. At bottom is the premise that parents should not have children to

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fulfill their own needs, desires, or fantasies, but for the good of the child. In this
sense, parenting should be Kantian, not egotistic.

If parents create children expecting specific traits (basketball skills, acting tal-
ent), then children can be damaged psychologically when they cannot, or choose
not to, fulfill such expectations.

This argument lies behind the widely heard objection about “designer babies,”
that is, it is wrong for parents to try to create children with blue eyes and blonde
hair and with a strong interest in music and tennis. Instead, parents should accept
whatever God gives them as a gift.

The most dangerous idea of all is that parents should be free to reject, or not
love, babies who lack the qualities they want. Already a dangerous tendency has
started among some parents to not aggressively treat impaired babies suffering from
genetic diseases at birth, followed by equally dangerous practices of death-by-abor-
tion after a sonogram has determined that it’s a female fetus. If we add to this the
possibility of using pre-implantation diagnosis during in vitro fertilization not to
implant any embryo with cystic fibrosis or Down syndrome, we are already halfway
to the bad place of parents rejecting children in the nursery when they emerge with
the wrong genes.

Suppose a child is created from the genes of a girl who was an all-state cham-
pion in the breaststroke and who had ability in math, scoring in the top 1 percent
of standardized tests and excelling in AP math classes in high school. What is often
overlooked is the role of supportive parents in such achievements. Now suppose
that the cloned child never learns to swim and is never exposed to math—and
doesn’t develop these abilities while she is young enough. In that case, we will learn,
perhaps painfully, that parents of children cloned for certain abilities cannot just sit
back and wait for the abilities to unfold but will need to be just as involved as the
ancestor’s parents.

Nevertheless, this argument emphasizes how bad parenting damages children
and how society should not encourage bad parenting based on false expectations.
This would be especially true if parents emotionally abandoned kids who did not
meet their expectations.

On the other hand, this argument can go many places. Suppose the cloned
child resembles the ancestor much more than expected and, because the parents
already know what the child can excel at, encourage him or her in that direction.
Would that be bad for the parents or child?

PROBLEMS WITH PRIMATE CLONING

To be ethical, an experiment that intended to create humans by cloning would
require much evidence that scientists could safely and reliably clone monkeys, chim-
panzees, and apes. Only after achieving those results might it be permissible, in
very carefully controlled circumstances, to try to originate a human by cloning. But
so far, cloning primates, especially those most similar to us, has not been able to
produce one normal primate baby, much less produce them reliably.

Although many species of mammals have been successfully cloned, embryos of
chimpanzees created by SCNT often have the wrong number of chromosomes and

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148 Chapter 6 Embryos, Stem Cells, and Reproductive Cloning

therefore do not implant properly in the host uterus. In other words, after the
cloned primate embryos were created, their cells did not seem to divide properly.

The Spindle Problem

In cell division, or mitosis, the replication and division of chromosomes are guided
by things called spindles. In humans, two key proteins (NuMA and HSET) guide the
organization of other proteins necessary for the development of the embryo. In
primates, these spindle proteins concentrate near the chromosomes of unfertilized
egg cells—the same chromosomes that are removed to make way for the new adult
cell nucleus in SCNT. The process of removing the old nucleus and inserting a new
nucleus seems to damage these spindle proteins. In non-primate mammals, these
proteins appear throughout the egg cell, making it easier to replace the nucleus by
SCNT without damaging them.

To find out what was going wrong in cloned monkey embryos, researchers at
the University of Pittsburgh School of Medicine fluorescently labeled the parts
active during division of cells. As said, they reaffirmed that the mitotic (as in mitosis)
spindles that guide chromosomes in cell division did not function correctly in cloned
embryos. More important, they found that either the cloned monkey embryos
lacked the NuMA and HSET spindle proteins or the two proteins were not func-
tioning properly. Getting primate embryos (and therefore human embryos) to have
these two key proteins and to then have those proteins function correctly in orga-
nizing chromosomes around spindles may be the key to successful human
cloning.

In 2007, a team of researchers at Oregon Health and Science University did
successfully create a stem cell line from a cloned primate nucleus. They also used
SCNT, but did so more precisely. They didn’t use the DNA stains and X-ray light-
ing they had used previously, because they believed these techniques were what
had harmed the primate’s DNA. Instead, they used a machine called “Oosight,”
which allowed them to see the DNA-carrying structures in the egg. Importantly,
the researchers microsurgically gathered chromosomes at the right time during
embryo formation so that the spindle proteins needed for each chromosome were
present and functioning correctly. So they were able to successfully clone primate
fetuses.32

At least, they would have solved it, if they had been able to show that the babies
that resulted would not miscarry and, when born, would be healthy and normal.
We don’t know exactly why, but none of the primate fetuses completed gestation
to birth. The Oregon team transferred 77 embryos into different surrogates, but no
fetus made it to day 25.

One problem is that, to produce a viable fetus, the cycle of the cloned embryo
has to perfectly match the menstrual cycle of the surrogate mother, a very difficult
task to accomplish. Another problem lies within the embryonic cells themselves:
They do not have the right epigenetic programming—supra-genetic instructions that
affect gene function—to mature into an actual monkey. Cloned embryonic cells may
lack the signals that would turn key genes on or off at various stages in gestation.
So any resulting primate babies almost certainly are going to be born with major
defects.

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Chapter 6 Embryos, Stem Cells, and Reproductive Cloning 149

Why might this otherwise be an ethical issue? When fetuses don’t have the
proper genes turned on or off at the right times or don’t have the proper number
of chromosomes, they will be born with significant problems. For instance, Down
syndrome is due to a chromosomal abnormality; so is Turner syndrome in females
as well as Klinefelter syndrome.

Thus, any experiment that cloned human embryos from an ancestor and
implanted them in the wombs of real women would run a high risk of creating
babies with chromosomal defects as well as other defects caused by genes not turn-
ing on or off at the right times in gestation.

As previously noted, this is the major reason why originating babies by cloning
is unethical. There is a very high likelihood that any babies so produced would have
major structural abnormalities, problems caused by deep-down irregularities in their
genes and cells. As there are many other ways to create human babies, by sex or
assisted reproduction, and many other ways to get children, using surrogates or by
adoption, there is now no cogent ethical argument for allowing experiments to
create human children by cloning.

Notice that this objection depends on the existing state of scientific knowledge.
If scientists learn to originate baboons and chimpanzees by cloning without defects
and learn how to originate all other mammals safely by cloning, then the chances
of a defective cloned baby would drop drastically, and the force of this objection
would correspondingly diminish.

Notice that when we discuss abnormalities, we need a baseline for comparison.
Over 50 percent of embryos created sexually, half of which are chromosomally
abnormal, do not implant successfully in the human uterus and are lost. About 2
percent of live-born babies have some genetic defect. Millions of babies are born
after the mother smoked or drank during their gestation, yet we do not criminalize
such smoking and drinking during pregnancy. (Perhaps we should, but why should
we focus on the sensationalistic, remote cases of cloning and ignore obvious harm
to babies around us?)

Inequality

Some people, through no merit of their own, start out life much better than others.
Some children get two parents, four grandparents, lots of gifts at holidays and
birthdays, special preschool and after-school tutoring, and the best private schools
and universities. It seems unfair that some get so much, but others so little.

Over the past centuries, civilized societies have mitigated some of the more
extreme effects of this environmental inequality: Estate taxes have reduced how much
can be inherited from parents, income taxes redistribute money from high earners
to those on disability and public assistance, and expanding economies have created
new opportunities for hardworking and talented people to get ahead.

Even so, the gap between rich and poor is astonishing, having widened over
the past decade. Given that gap, reproductive cloning could start a new kind of
biological inequality, much deeper than our existing environmental inequality.
Because reproductive cloning would normally involve a conscious choice to clone
the genome of one person rather than another, it is likely that families would
choose genomes with good qualities. If cloning could be done successfully, such