Who Says You're Dead?

by Jacob M. Appel

  Allowing patients to keep medical information from survivors may help maximize their autonomy and sense of empowerment. Some critics might argue that Monty could have taken legal steps to prevent his sister from accessing his medical record entirely, such as appointing a third party to serve as his healthcare executor and then instructing that individual in writing not to share this information with Crystal. In many states, those actions would be both legally possible and binding. But requiring such drastic action may demand too much foresight from the average patient. More concerning, asking Monty to shut out Crystal entirely could undermine his ultimate goal—to protect her from unnecessary distress. The American Medical Association’s Council on Ethical and Judicial Affairs urges doctors, to the extent possible, to preserve the same degree of confidentiality for patients in death as they have requested in life.

  Of course, the logistics of concealing information from a determined relative may prove difficult. Would one remove Monty’s medication list from the chart? Redact the name of the often AIDS-related bacteria that caused his pneumonia? Refusing Crystal access to the medical chart entirely would likely not be legal; even if it were legal, doing so might merely serve to provoke her worst suspicions, which certainly would not have been Monty’s intent. Alternatively, Crystal might mistakenly conclude that her brother was healthy at baseline and thus died of substandard care—leading to a groundless malpractice suit.

  An even more challenging situation arises when the patient is critically ill but not yet deceased. In these cases, a family member—serving as a healthcare proxy or surrogate—often must render medical decisions on his behalf. Yet a decision maker needs accurate and comprehensive information about a patient’s medical condition in order to generate informed choices. Under such conditions, when the patient’s wishes regarding confidentiality directly conflict with his physical welfare, physicians may prove far less willing to withhold information, especially if the result is a surrogate or proxy making a poorly informed and dangerous decision.

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  Stranded on a Ventilator

  A major hurricane strikes a midsize US city located on the southeast coast. The city’s largest hospital, which is situated on a peninsula, loses electricity and cell phone service. It is entirely shut off from the outside world. Fierce winds batter the building, and after the storm abates, temperatures on the wards rise to over ninety degrees. Much of the staff abandons the hospital on makeshift rafts, leaving only Dr. Abigail Bartlet and a handful of nurses to care for more than twenty extremely ill intensive care unit (ICU) patients. Dr. Bartlet realizes that the backup generators will run out of energy after forty-eight hours, shutting off the machines that are keeping many of her patients alive.

  One of the patients, Sylvia, is a quadriplegic woman who needs a ventilator to survive. She summons Dr. Bartlet and says to her, “You and I both know these machines are going to shut off eventually and I’m going to die a painful death. I’m seventy-two years old. I’ve lived a good life. What I want right now is a lethal dose of morphine so I can pass with comfort and dignity.”

  Physician-assisted suicide is illegal in this state. Although Dr. Bartlet knows this, she fulfills Sylvia’s request, and Sylvia dies. Two hours later, before the generators fail, the National Guard arrives to evacuate the remaining patients.

  Has Dr. Bartlet acted ethically?

  Reflection: Physician-Assisted Suicide

  Should competent adults should be allowed to end their own lives with physician assistance, and, if so, under what circumstances? Jurisdictions permitting “aid in dying” in the United States generally confine the practice to the terminally ill and require consistent, repeated requests over a period of time. However, doctors are allowed to prescribe medications that shorten life if their primary purpose is to relieve pain or suffering. This exception is known as the “double effect doctrine.” In Dr. Bartlet’s state, physician-assisted suicide is illegal; she may well face criminal charges. A key question for the courts would be whether she intended to kill Sylvia—or, rather, to sedate her with the morphine to alleviate her discomfort until help could arrive. From the standpoint of ethical analysis, one might also ask whether Sylvia could really have made an autonomous, fully informed decision in the context of an isolated, storm-ravaged hospital.

  The second question raised by this scenario is to what degree emergency circumstances, such as mass-casualty events, allow for exceptions to the general rules of medical conduct. Historically, some ethical codes have embraced the “doctrine of necessity”—the argument that an otherwise unacceptable action was justified to prevent a greater crime or moral offense. Survivors of shipwrecks who resorted to murder and cannibalism—like those from the whaleship Essex (1820), which inspired Moby-Dick, and the French yacht Mignonette (1884)—often justified their actions on these grounds. However, no consensus exists among ethicists as to whether necessity can be used to justify assisted suicide to prevent suffering during a catastrophic event. During the aftermath of Hurricane Katrina, the staff at New Orleans’s Memorial Medical Center, under the direction of physician Anna Pou, allegedly injected lethal cocktails into patients who could not be evacuated. Colleagues defended Pou, a highly regarded clinician, who insisted the medication was aimed at relieving pain and suffering. She was later charged with murder, but a grand jury declined to indict her, and she has since played a role in rewriting Louisiana law to provide medical personnel with civil immunity for such conduct during emergencies. Journalist Sheri Fink, who has been critical of the choices made at Memorial, won the Pulitzer Prize for her coverage of the episode, later expanded into the 2013 book Five Days at Memorial: Life and Death in a Storm-Ravaged Hospital.

  Medical writer Amanda Schaffer observed in the New Yorker that “medical workers under siege can easily lose perspective. They can start to make decisions based on their own dark fears rather than the changing facts on the ground.” One way to avoid this seemingly inevitable problem might be to establish clear rules in advance for medical conduct during large-scale disasters. However, physicians might still violate such rules when confronting extreme circumstances if they believe doing so reflects the ethical course of action.

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  “Give Me My Late Fiancé’s Sperm”

  Felix and Sadie are engaged to be married when Felix falls down the elevator shaft of his building and is critically injured. The doctors inform Sadie, along with Felix’s only living close relative, Uncle Rufus, that he will not survive.

  Sadie and Felix had planned to have a baby shortly after their marriage. Having seen a television show in which sperm is harvested from a dying man to inseminate his spouse, Sadie asks whether this is possible for her. Uncle Rufus adamantly objects. “Felix wanted a baby, sure,” he says. “But a baby the natural way. With a father. He would never have agreed to father a child after he died.” It is worth noting that, since Felix and Sadie were not yet married, Uncle Rufus is the only heir to Felix’s estate, which includes a sizable inheritance from his late parents.

  Should the doctors agree to harvest Felix’s sperm in order to impregnate Sadie over Uncle Rufus’s protestations?

  Reflection: Posthumous Sperm Retrieval

  Posthumous sperm retrieval (PSR) has been available in the United States since 1978, when urologist Cappy M. Rothman initially performed the procedure. The first successful childbirth from the intervention occurred in 1999. Sperm generally has to be harvested within thirty-six hours of death, requiring rapid decision-making on the part of surviving partners and relatives. While the procedure is biologically feasible, it remains ethically controversial.

  Critics of PSR object on the grounds that individuals, even if deceased, should not become parents in the absence of their own consent. According to Orthodox Jewish custom, which forbids the practice, PSR violates the ban on using a cadaver for personal interest. Opponents also raise concerns about the welfare of the future children. Supporters note that many men father offspring without wishing to do so, throu
gh casual or careless sexual practices, and that many children are raised successfully by single parents.

  Some Western nations, including France and Germany, prohibit PSR. In the United States, PSR is legal, but physicians still reject many cases. Peter N. Schlegel, a prominent New York City urologist, told the New York Times in 2004 that he uses a “prudential conservative approach” that led him to refuse eighteen of twenty-two requests. Courts often apply “substituted judgment” in determining whether to allow partners to harvest sperm, asking if the deceased man would have wanted to father children posthumously. Some demand evidence of prior consent—such as a conversation on the subject. Others are willing to accept “implied consent” revealed by evidence of an active effort to conceive children. Generally, only partners—whether married or not—are permitted to authorize sperm extractions. Yet in 2009, a Texas judge allowed Marissa Evans to harvest sperm from her murdered son, Nikolas, with the intent of hiring a surrogate to give birth to a future grandchild. In a parallel case, a fifty-nine-year-old British woman—identified only as Mrs. M—fought (ultimately without success) to be impregnated with embryos frozen by her deceased daughter.

  In Felix’s case, Uncle Rufus may have the better part of the argument unless Sadie can offer persuasive evidence that Felix would have wanted to have children under these circumstances. Many states regard Uncle Rufus, as Felix’s only relative, to be his surrogate for medical decision-making. (Yet laws do vary; some states recognize a domestic partner or even a close friend, while in others an uncle is too distantly related to qualify.) In order to prevail in court, Sadie would likely have to convince a judge that Uncle Rufus—possibly motivated by avarice—is flouting Felix’s hypothetical wishes. Under circumstances where the patient’s wishes are doubtful and the survivors stand in discord, few medical authorities are likely to advocate for the procedure.

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  Waiting For Reincarnation

  Alexander is a forty-nine-year-old man who comes to a prominent teaching hospital for a heart transplant. While awaiting the transplant, he is placed on a machine called a BIVAD, or biventricular assist device—basically, an artificial heart the size of a small refrigerator to tide him over until a donor heart becomes available. While awaiting a heart, he suffers a severe stroke.

  The doctors tell his wife, Katie, that no patient who has suffered such a severe stroke has ever regained consciousness and that Alexander is no longer a candidate for transplant. They would like to turn off the BIVAD and allow nature to take its course. Not lost upon these doctors is that Alexander occupies a desperately needed ICU bed, which could benefit other patients, and that his care costs the healthcare system upwards of $10,000 a day. They are also aware than Alexander could survive for years on the BIVAD and the other machines that are now helping to keep him alive: a ventilator and a dialysis machine.

  Katie refuses to yield to the doctors’ request. “I realize he has no chance of recovery,” she says. “But Alexander believed deeply in reincarnation. What mattered most to him was that he die at the right moment—so that his soul could return to Earth in the body for which it was destined. To him, that would have meant keeping him on the machines until all brain function ceases, even if it means decades. I feel obligated to honor those wishes.”

  Should the doctors go to court to overrule Katie’s decision?

  Reflection: Death-Defying Decisions

  From the 1970s to the 1990s, most end-of-life conflicts between families and hospitals involved cases where the family wanted to withdraw life support and the medical facility objected. These families often fought public battles through the court system in the hopes of letting their loved ones die “naturally.” Over the past two decades, the disagreements between families and providers have increasingly been reversed: in a series of high-profile disputes, hospitals have sought to withdraw life support in cases of supposed medical futility, while families have fought to keep their loved ones on ventilators. Among the earliest and best-known of these cases was that of Helga Wanglie, an eighty-six-year-old Minnesota woman in a persistent vegetative state whose doctors wanted to withdraw care over her husband’s objections. (A court ultimately ruled for her family, but she died anyway two days later.) In 2005, ethicist Lachlan Forrow of Boston’s Beth Israel Deaconess Medical Center told the New York Times: “About 15 years ago, at least 80 percent of the cases were right-to-die kinds of cases. Today, it’s more like at least 80 percent of the cases are the other direction: family members who are pushing for continued or more aggressive life support and doctors and nurses who think that that’s wrong.” These cases can prove extremely costly for the healthcare system. Helga Wanglie’s final years of medical care, for instance, reportedly carried a price tag of $800,000 in 1991 dollars—or about $1.5 million today.

  The motives for keeping patients on life support past the point of “futility” vary greatly. Some families hold out hope, often irrationally, that their relatives will recover. Yet the media intermittently reports precisely those sorts of miraculous tales: On the day that the family of fifty-six-year-old Nebraska mother Teri Roberts planned to turn off her ventilator in 2015, the toxic shock syndrome patient awoke from her “irreversible” coma. Car crash victim Terry Wallis woke up in 2003 after nearly two decades. Canadian woman Annie Shapiro fell into a coma on the day John F. Kennedy was assassinated in 1963—and woke up suddenly in 1992! Other families recognize that their relatives will not improve but have religious or cultural reasons for refusing to terminate care, as in Alexander’s case; his prognosis for recovery is not relevant to his wife’s decision-making process.

  State laws vary on whether hospitals can ever overrule families in these cases. Texas affords providers the greatest power in the area. Under the Texas Advance Directives Act of 2009 (better known as the Texas Futile Care Law), hospitals can withdraw life support from patients when such care is deemed “futile,” once certain procedural safeguards are met. Among the first patients affected by the law were infant Sun Hudson and terminal cancer patient Tirhas Habtegiris.

  Scenarios like the conflict between Alexander’s wife and his physicians can often be prevented. Had the hospital’s medical team discussed with the couple in advance the precise circumstances under which life support would be withdrawn, and emphasized the societal costs of keeping patients with no prognosis of recovery on life support, it is always possible that Alexander might have accepted these terms; alternatively, the hospital might not have offered him the BIVAD at all. Like many cases in medical ethics, these issues are best addressed before the fact—rather than after tragedy strikes.

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  Cadaver Confusion

  The morgue at a community hospital serves the anatomy lab at a nearby medical school. Each year, dozens of dying patients at the hospital—often retired physicians and nurses—agree to donate their bodies for dissection by first-year medical students.

  Dr. Scarpetta, the chief pathologist, goes on maternity leave. She leaves her assistant, Dr. Minoret, in charge of the morgue while she is gone. When she returns, she reviews Dr. Minoret’s work and discovers that a terrible error has occurred: the corpse of one patient (“Jed”), which was supposed to be sent to the family for cremation, was actually sent to the anatomy lab for dissection, while a corpse donated to the lab (“Bud”) was instead released to a funeral home. The error occurred over three months earlier, and Jeb’s body has already been embalmed in formaldehyde and dissected by medical students. Bud’s body has presumably been cremated. Dr. Scarpetta fears that revealing the morgue’s mistake, which is now irreversible, will cause the surviving family members unnecessary and possibly extreme distress. In contrast, if she conceals the mistake—and alters the records—there is no way they will ever know.

  Should Dr. Scarpetta inform the next of kin of the error?

  Reflection: Therapeutic Privilege

  Corpses are sent to the wrong families frequently—at least, if one believes the media hype. For sensationalism, what can beat headlines
like the Sacramento Bee’s cry, baby’s corpse mistakenly buried with twins (2006). While assessing the actual incidence of such mix-ups is nigh impossible, since many likely go undiscovered, the reactions of survivors generally reflect varying degrees of outrage. A lawyer for the family of Billie Sue Smith of Tennessee, who was inadvertently buried in the grave of a man named John Hughes, summed up these frustrations as follows: “You know the adage, ‘May she rest in peace’? Well, there’s no peace here. To know you have ashes of the cremains of a loved one that may not be their ashes? To visit the grave of a loved one and the loved one may not be in that grave? There’s no peace.” The harm done in these cases is generally considered to be psychological, rather than economically or physically tangible. Followers of some religious traditions may believe otherwise, however, if they relate the fate of a corpse to their loved one’s future in the afterlife. Yet widespread social customs relating to respect for the dead suggest that most victims of such a mishap will experience distress.

  “Therapeutic privilege” refers to the process of withholding information from a patient or patient’s family member because sharing the information is either medically contraindicated or would cause the patient great harm with no benefit. It is an example of medical paternalism—once the dominant principle in medical practice. Over the past half century, Western medicine has rejected such paternalism as the default standard in healthcare in favor of patient autonomy. Yet there may be extreme cases where withholding information—at least for a period of time—would prove justified. Examples might include not informing an accident victim of the extent of her injuries for a few hours until appropriate family support can be obtained, or withholding a diagnosis that might put a severely depressed patient at risk of suicide. The American Medical Association looks highly unfavorably upon the practice, barring extraordinary circumstances. Its Code of Medical Ethics states, “Withholding medical information from patients without their knowledge or consent is ethically unacceptable.”