Who Says You're Dead? Read online

  Also by Jacob M. Appel

  ESSAYS

  Phoning Home

  NOVELS

  Millard Salter’s Last Day

  The Mask of Sanity

  The Biology of Luck

  Wedding Wipeout

  The Man Who Wouldn’t Stand Up

  STORY COLLECTIONS

  Amazing Things Are Happening Here

  The Amazing Mr. Morality

  The Liars’ Asylum

  The Topless Widow of Herkimer Street

  Coulrophobia & Fata Morgana

  The Magic Laundry

  Miracles and Conundrums of the Secondary Planets

  Einstein’s Beach House

  Scouting for the Reaper

  POEMS

  The Cynic in Extremis

  Who Says You’re Dead?

  Medical & Ethical Dilemmas for the Curious & Concerned

  Jacob M. Appel, MD

  ALGONQUIN BOOKS OF CHAPEL HILL 2019

  In memory of Professor Edward Beiser,

  who asked all the hard questions,

  and for Rosalie, who helps me find the answers

  Contents

  Introduction

  Part One: Inside the Mind of a Doctor

  1. “You’re Not My Real Dad”

  Reflection: False Paternity

  2. “How Many of Your Patients Survive?”

  Reflection: Informed Consent

  3. “Please Don’t Tell Anyone about My Crime”

  Reflection: Doctor-Patient Confidentiality

  4. “Please Don’t Put It in My Chart”

  Reflection: Privacy and Medical Records

  5. When the President Has a Secret

  Reflection: Public Disclosure

  6. “The Worst Patient Ever”

  Reflection: Patient Conduct

  7. “I’d Never Actually Do It, But …”

  Reflection: A Doctor’s Duty to Report

  8. Sleeping with the Doctor

  Reflection: Doctor-Patient Attraction

  9. A Physician with a Dark Past

  Reflection: Professional Standards

  10. Turning a Blind Eye to Torture

  Reflection: Enhanced Interrogation

  11. When Medical Secrets Are Business Secrets

  Reflection: CEO Responsibility

  12. A Doctor’s Buried History

  Reflection: Evolving Ethical Norms

  Part Two: Body Parts

  13. “Take My Foot, Please”

  Reflection: Elective Limb Amputation

  14. Should She Stop Growing?

  Reflection: Growth-Attenuation Therapy

  15. “She Must Be Marriageable”

  Reflection: Female Genital Cutting

  16. “Give Her My Liver”

  Reflection: Live Organ Donation

  17. “Am I My Brother’s Donor?”

  Reflection: The Unwilling Donor

  18. Organs for Celebrities

  Reflection: Favoritism

  19. Ads for Organs

  Reflection: The Free Market of Medicine

  20. Transplantation on Death Row

  Reflection: Prisoners’ Rights

  21. A Chimp Heart

  Reflection: Xenotransplantation

  22. A Head Case

  Reflection: Experimental Transplants

  23. Reducing Sexual Urges

  Reflection: Voluntary Castration

  24. “Give Me a Horn”

  Reflection: Body Modifications

  25. Conjoined Twins at Odds

  Reflection: Quality of Life / Sanctity of Life

  Part Three: Making Babies

  26. A Child with a Purpose

  Reflection: Savior Siblings

  27. “We Want a Deaf Baby”

  Reflection: Reproductive Technologies and Disability

  28. Who Owns That Embryo?

  Reflection: Embryo Custody

  29. Privacy Invasion or Child Protection?

  Reflection: Punishing Prenatal Conduct

  30. “We’re Waiting for a Sign from God”

  Reflection: Preemptive Detention

  31. “That Woman Stole My Sperm”

  Reflection: Forced Abortion

  32. “I Won’t Have a C-Section”

  Reflection: Involuntary Cesareans

  33. “Whose Fetus Is This?”

  Reflection: Surrogacy after a Homicide

  34. When Sterilization Is Forced

  Reflection: Eugenics in History

  35. Paying for Girls

  Reflection: Sex Selection

  36. Tube-Tied

  Reflection: Wrongful Birth

  37. When Human Cloning Becomes Possible

  Reflection: Human Cloning

  38. Bringing Up (Neanderthal) Baby

  Reflection: Animal Cloning

  39. Fertility and Fundamentalism

  Reflection: LGBTQ Rights

  Part Four: The Good of the Many

  40. Paid to Not Have Kids

  Reflection: The Rights of Substance Abusers

  41. “They Tried to Make Me Go to Rehab”

  Reflection: Drug Court

  42. A Modern Typhoid Mary

  Reflection: Mandatory Quarantines

  43. Beyond 23andMe

  Reflection: DNA Dragnets

  44. Requiring a DNA Test

  Reflection: Mandatory Genetic Screening

  45. “I’d Rather Die Than Abandon My Hunger Strike”

  Reflection: Force-Feeding Prisoners

  46. Nonvaccinators in the Waiting Room

  Reflection: Parental Dissent

  47. The Evidence Is in His Leg

  Reflection: Searches and Seizures

  48. Echoes of Tuskegee

  Reflection: Research Standards

  49. “It Will Help Others, Not You”

  Reflection: Research or Treatment?

  50. Lithium in the Water

  Reflection: Preventing Suicide

  51. “Why Didn’t You Warn Me I Was at Risk?”

  Reflection: Inherited Diseases and Privacy

  52. The Boundaries between Mice and Men

  Reflection: Human-Animal Hybrids

  53. Doctoring a Dictator

  Reflection: Human Rights and Treatment

  Part Five: Practical Matters

  54. Screening Future Employees

  Reflection: Genetic Discrimination

  55. “I Want a White Surgeon”

  Reflection: Patient Prejudice

  56. “We Don’t Tell Our Elders They Have Cancer”

  Reflection: Autonomy and Culture

  57. “The Best Treatment Is Prayer”

  Reflection: Cognitive Capacity

  58. Well-Intentioned Fraud

  Reflection: Health Insurance

  59. A Most Expensive Patient

  Reflection: Visible and Invisible Victims

  60. When Doctors Choose Who Lives

  Reflection: Ventilator Allocation

  61. A Cheaper Knockoff

  Reflection: Intellectual Property

  62. No Black Sperm Donors Need Apply

  Reflection: The Business of Reproduction

  63. “She Can Share a Room with a Man”

  Reflection: Gender-Blind Hospital Rooms

  64. Healthy Workers Only

  Reflection: Employee Rights

  65. Will I Get Alzheimer’s?

  Reflection: Genetic Testing and Privacy

  66. “I Want to Live to Meet My Child”

  Reflection: Healthcare Rationing

  67. Pills for Peak Performance

  Reflection: Cognitive Enhancement

  68. “I’d Rather Be Psychotic Than Stupid”

  Reflection: Psychiatric Advance Directives
/>   69. Hazardous Hobbies

  Reflection: The Cost of Risk

  70. Sex in the Nursing Home

  Reflection: Dementia and Consent

  Part Six: End-of-Life Issues

  71. Who Says You’re Dead?

  Reflection: Defining Death

  72. Easing Suffering, Hastening Death

  Reflection: Pediatric Euthanasia

  73. Death and Taxes

  Reflection: Inheritance

  74. “Did He Have AIDS?”

  Reflection: Posthumous Privacy

  75. Stranded on a Ventilator

  Reflection: Physician-Assisted Suicide

  76. “Give Me My Late Fiancé’s Sperm”

  Reflection: Posthumous Sperm Retrieval

  77. Waiting for Reincarnation

  Reflection: Death-Defying Decisions

  78. Cadaver Confusion

  Reflection: Therapeutic Privilege

  79. “He’d Rather Die Than Live Like This”

  Reflection: Withdrawing Life Support

  Sources and Further Reading

  About the Author

  Introduction

  Today’s hospitals and clinics are the settings of some of the most challenging and controversial ethical dilemmas our society confronts. Every day, it seems, a pioneering researcher or clinician announces a new breakthrough: hand transplants, cloned sheep, targeted biological cancer therapies, cognitive enhancers, preimplantation genetic screening, transgenic mice—the list of scientific “miracles” seems endless. With these technologies, of course, arise far more complex moral challenges. How to allocate scarce donor hearts and kidneys among potential recipients, for example, is not an issue unless the immunosuppressive drugs that prevent our bodies from rejecting those organs exist. Now they do.

  Two recent technological developments offer windows into the strikingly different sorts of ethical challenges that such advances pose. One of these innovations is three-parent conception. As readers may or may not recall from high school biology, most of our DNA is housed in the nuclei of our cells, but some of our genetic blueprint is contained in small organelles outside the nucleus called mitochondria. Both types of DNA are necessary to produce a healthy baby. Under rare circumstances, the DNA in the mitochondria becomes defective through mutations; as a result, babies are born with debilitating genetic diseases. These conditions often run in families. To prevent these diseases, doctors can now take the nucleus of an egg cell from a potential mother who comes from such a family and combine it with the mitochondrial DNA of a second, unrelated woman. This process is known as “cytoplasmic transfer.” If this combined egg is then fertilized by a sperm, the result will be a baby with DNA from three distinct biological parents—what the media has dubbed a “three-parent baby.” On the one hand, this is a great breakthrough: women once faced with the choice of conceiving a sick child or no child at all can now give birth to healthy offspring who live long, meaningful lives. On the other hand, such a process raises novel questions: Should two mothers be listed on this child’s birth certificate? What happens if the woman who contributed mitochondria demands partial custody? Visitation rights? An inheritance? Alternatively, does the child ever have a right to learn the identity of the mitochondrial donor? Or the donor’s medical history? And in the age of surrogate motherhood, if the embryo is implanted inside a third woman’s uterus, what are the ethical and legal implications for a “four-parent baby”? While more than a dozen babies have been born over the past two decades through cytoplasmic transfer, many of these questions remain unresolved.

  At the opposite end of the technological spectrum stands an advance far more familiar to the average healthcare consumer: the rise of the electronic medical record (EMR). These days, anyone who visits a doctor’s office or hospital emergency room has likely encountered the ubiquitous appearance of the computerized chart. Experts tell us that these EMRs will decrease medical errors and speed the transfer of health information. The ultimate goal, for many, is a so-called “intraoperative system,” where a patient can walk into any hospital or physician’s office in the nation, and the staff will immediately be able to access the patient’s medical history, current medications, and regular healthcare providers’ contact information. This technology might prove particularly valuable in emergencies or when a patient has lost consciousness.

  At the same time, it is fraught with the potential for lost privacy. Millions of healthcare professionals would require access to such a system for it to function well. But some patients may not want their records available in this manner. They may object to their podiatrist knowing that they suffer from a mental illness or their dentist learning what method of contraception they use. The potential for abuse also remains glaring: How will the system know if a pharmacist from Wyoming accesses the medical records of his soon-to-be son-in-law in Florida in order to discover whether his daughter will be marrying a man with a history of drug addiction? And if he does breach the system in this way, how should we punish him? Firing the victim’s future father-in-law may actually exacerbate the injured man’s misfortune and will certainly not put the genie back in the bottle. And then, of course, there is the possibility that hackers will break into the system and post the medical records of everyone on the internet. Certainly, these pitfalls require a careful balancing between privacy rights and access to top-notch care.

  As a practicing psychiatrist and bioethicist, I explore these exciting and often daunting ethical dilemmas every day. Over the course of nearly two decades teaching at Brown University, Columbia University, New York University, and the Icahn School of Medicine at Mount Sinai, I have written a trove of these difficult conundrums to stimulate discussion among medical students and residents. Some are drawn from the headlines, others loosely modeled on cases reported in professional journals. A few, painstakingly disguised, come from my own clinical encounters. Whether you are planning a career in healthcare or you are a layperson intrigued by the ethical issues you often witness all too briefly on popular television shows, the dilemmas that follow are designed to let you investigate your own values, engage with difficult “real-world” issues, and argue (in good cheer) with friends and family across the dinner table.

  The commentary provided after each conundrum is not intended to sway your opinions. Rather, these are reflections that offer some of the real ways in which established bioethicists, clinicians, and policy makers have tackled similar moral quandaries. Some of these quandaries may arise in your own life, and there is value in having thought about the issues in advance. The hope is that you will examine these questions from multiple vantage points, whatever your ultimate feelings, and will recognize that intelligent people of goodwill may arrive at different conclusions.

  In the hospital or in the legislature, addressing these highly fraught subjects can prove emotionally grueling. Fortunately, discussing them hypothetically, in your own living room, should be precisely the opposite: invigorating and inspiring. Above all, the goal of this volume is to convey the intellectual pleasure of engaging with complex ethical questions—to let you do what professional bioethicists do every day. So I do hope you enjoy!

  Jacob M. Appel, MD, JD, MPhil, MPH, MFA

  Director of Ethics Education in Psychiatry

  Assistant Professor of Psychiatry and Medical Education

  Icahn School of Medicine at Mount Sinai

  Part One

  Inside the Mind of a Doctor

  The ethical norms of the physician-patient relationship have evolved considerably since the Hippocratic oath of ancient Greece forbade doctors from performing surgery. As late as the nineteenth century, many medical practitioners questioned the value of empirical evidence and offered remedies grounded in unproven theories—including bloodletting, purgatives, and toxic metals like mercury and arsenic. The effective arsenal of the medical practitioner was limited: citrus for scurvy, iodine for goiters, inoculation for smallpox. Encounters with physicians often did more harm than good. Although some sta
tes attempted to rein in the profession, beginning with the passage of New York’s Medical Practices Act in 1806, credentialing standards proved extremely lax. By 1860, the United States had one physician for every 571 people—by far the highest rate in the world.

  Over the next century, the American Medical Association (AMA) and various other professional societies played an instrumental role in reshaping healthcare into one of the nation’s most heavily regulated fields. Doctors are now licensed, and their numbers are strictly limited; many medications require a prescription. An age of scientific discovery and rapid advances in technology, including the ongoing genetic revolution, have helped to realize cures that seemed unfathomable only a generation ago. How doctors should use this newfound power remains one of the central ethical challenges of the twenty-first century.

  1

  “You’re Not My Real Dad”

  Fred is a seventy-five-year-old widower who suffers from kidney failure and faces a lifetime on dialysis. After a lengthy discussion with his longtime physician, Dr. Arrowsmith, Fred decides to seek a potential kidney donor among his friends and family members. His only daughter, Linda, who is nearly fifty, agrees to be tested to see whether she is an appropriate match.

  The results of the ensuing tests shock Dr. Arrowsmith. Not only is Linda not a match, but genetic markers reveal that Linda cannot be Fred’s biological daughter. In other words, Fred’s late wife likely had an extramarital relationship that led to Linda’s conception.

  Should Dr. Arrowsmith tell either father or daughter of this discovery?

  Reflection: False Paternity

  Misattributed paternity, commonly known as false paternity, is not an uncommon phenomenon. Estimates suggest that 1.7–3.3 percent of children are mistaken regarding the identities of their biological father. This occurrence has significant implications well beyond healthcare. For example, a staple of junior high school science classes once was having students perform ABO (Landsteiner) blood typing on themselves and then comparing their blood types to those reported by their parents. One can imagine the family discord such an exercise might create if parents and children display biologically incompatible results.

  On the one hand, if Dr. Arrowsmith decides to reveal Linda’s false paternity, the consequences may prove psychologically devastating for both father and daughter. On the other hand, concealing the information has significant healthcare implications as well. For example, Linda may believe both of her parents to be Scandinavian. If she has children of her own, she may forgo genetic testing for diseases not frequently found among Scandinavians, such as Tay-Sachs disease, a deadly childhood illness that is most common among eastern European Jews, French Canadians, and Louisiana Cajuns. But if Linda’s biological father were not Scandinavian, her own offspring might still be at risk. Not knowing her authentic family history could lead to preventable diseases in her own children. Linda might also unwittingly report an incorrect family history to her doctors, who could then underestimate her risk of everything from early-onset colon cancer to suicide. One can also imagine a different case where the daughter is found not to be a biological child but is still a potential match as a kidney donor. Under those circumstances, sharing the false paternity results might deter the daughter from donating a kidney and thus prove medically compromising to the potential recipient.