More complex are cases of two elderly individuals with dementia, like Norma and Riley, who seek sexual activity with one another and appear to benefit from it. How to preserve both safety and dignity for these residents under such circumstances is a challenge, but not one that necessarily justifies enforced chastity. The feelings and wishes of third parties, such as the patients’ spouses and children, may also prove a concern. Should Norma and Riley’s nursing home inform their families about their relationship? Should their children have any say in whether the relations are permitted to continue? In one high-profile instance, the New York Times reported on the romance between former Supreme Court justice Sandra Day O’Connor’s cognitively impaired husband and another cognitively impaired resident at his assisted living facility—although it did not explicitly touch upon their sex lives. Justice O’Connor, ever graceful under stress, appeared supportive. One can easily imagine another spouse feeling less sympathetic.
Part Six
End-of-Life Issues
The field of bioethics emerged as its own discipline in the 1960s and 1970s largely around issues related to death and dying. Prior to this era, the boundaries between life and death were generally clear—although controversies did arise surrounding the return of individuals lost and presumed dead. (One of the best-known of these cases, the legend of sixteenth-century French peasant-turned-solider Martin Guerre, became the subject of literature and film.) When one’s heart stopped beating and one’s lungs stopped breathing, a person was considered dead. The advent of mechanical respirators in the late 1950s complicated that definition, as a machine could keep human lungs breathing through artificial means long after they could no longer do so on their own. The question became, Were such patients alive? And if so, what standard for death should replace the traditional cardiopulmonary version?
These questions were debated among professionals, starting in France, where a team of neurophysiologists first sought to define coma dépassé in 1958, and most notably, by leading experts who formed a committee at Harvard Medical School on the definition of “brain death” and “irreversible coma” in the 1960s. High-profile cases like that of Karen Ann Quinlan, a young woman in a persistent vegetative state whose parents sought to have her removed from a ventilator, brought the debate into US living rooms in the 1970s. Eventually, the federal government became involved, and a presidential commission published a seminal report on the subject in the early 1980s. Unfortunately, time has brought society no closer to a consensus on many of the ethical questions related to the end of life: What definition of death should medicine embrace? How should we handle patients or families who disagree with that standard? Should the medical community help people end their own lives when they are suffering?
71
Who Says You’re Dead?
Enoch is a five-year-old Mennonite child with a terminal brain tumor. He is a patient at a small hospital in his rural community. As his condition deteriorates, he is placed on a ventilator, and he soon loses consciousness. Eventually, his doctors conduct a series of tests known as electroencephalograms and conclude that his brain function has completely ceased. Under state law, Enoch is now dead.
Enoch’s parents, Jared and Susanna, do not believe in brain death. According to their traditions, a person is not dead as long as the heart is still beating. “Under your rules, he may be dead,” says Jared. “To my family, he is very much alive.” They insist that the doctors care for their child indefinitely. When the hospital refuses, they raise money in their community to purchase a ventilator so that they can care for Enoch in their own living room.
Should Jared and Susanna be permitted to take this child, who is legally dead, home with them on “life support”?
Reflection: Defining Death
Until the second half of the twentieth century, most legal systems defined “death” as the cessation of heartbeat, the cessation of breathing, or both—hence the iconic image of the nineteenth-century physician holding up a mirror to the mouth of a cadaver to check for vapor from the patient’s breath. These standards proved problematic with the development of artificial methods of respiration, such as ventilators, and later with the invention of ventricular assist devices (VADs) to help pump blood. Such machines allow a patient with no brain function or prognosis for recovery to remain “alive” (under the cardiopulmonary definition of death) for an extended period of time while hooked up to medical equipment.
Starting in 1968 with the report from the Ad Hoc Committee of the Harvard Medical School, the concept of “brain death” or “whole brain death” gained social and legal traction in the United States. In 1981, a presidential commission initially appointed by Jimmy Carter issued a report, Defining Death: Medical, Legal and Ethical Issues in the Determination of Death, which urged states to adopt the “whole brain death” standard. A majority of states have done so. (An alternative approach, that asks whether a patient retains “higher” brain functions, such as the ability to think, has been largely rejected.)
While most Americans now accept brain death, some cultural and religious minorities reject this new criterion. In several high-profile cases—including those of Mordechai Dov Brody (1996–2008), an Orthodox Jewish boy, and Jesse Koochin (1998–2004), the son of religious Christians—parents have fought hospitals in court for the right to opt out of the brain-death standard in favor of the cardiopulmonary standards embraced by their own traditions. The family of Jahi McMath, a thirteen-year-old girl who was declared brain-dead after a surgical procedure in California in 2013, had their daughter relocated to New Jersey, one of two states that allow families to opt out of the brain-death standard on religious grounds. Her family removed her from life support in 2018, and a death certificate was issued.
The core question in these cases is whether a uniform measure of death is necessary, or whether flexibility should exist for those with sincerely held dissenting beliefs. Yet the matter is more complex: few families will be able to afford to pay to keep a brain-dead child on a ventilator indefinitely, so usually the public—through Medicaid or private insurance—will end up absorbing the costs. Death also has significant implications for the living: keeping a brain-dead person “alive” could prevent his heirs from inheriting in a timely manner, might continue alimony or social security indefinitely, and has implications for the ability of a surviving spouse to remarry without a divorce. Finally, one cannot ignore the fine line between divergent values and those that are truly macabre or gruesome. If a family wanted to take home the corpse of a loved one—a body dead by both cardiopulmonary and brain-death standards—with the plan of letting the cadaver decompose in its living room (let us say in a sealed, transparent bag to prevent the spread of disease), many people would object on the grounds that such an approach simply violates contemporary norms of decency. What is not clear is why the situation is different when that cadaver is hooked up to a machine.
72
Easing Suffering, Hastening Death
Baby Frances is born with a severe terminal genetic disorder in which the skin and tissues form improperly. Her skin will eventually peel off, leaving the infant with wounds over large portions of her body. In all cases of the disorder, the baby’s internal organs suffer the same fate and break down. No child has ever survived more than six months with this disease.
Doctors wish to give Baby Frances high doses of morphine to make certain that she is not in pain. However, the morphine needed to keep Baby Frances pain-free also reduces respiration rates and increases the chance of a premature death. The infant’s parents, Eli and Delilah, vehemently object. They belong to a devout religious sect opposed to all forms of euthanasia. Victims of euthanasia and assisted suicide, they believe, will have to wait longer before their souls are permitted to enter heaven. For Eli and Delilah, giving morphine that may shorten the child’s life, even if that is not the doctors’ primary intention, is immoral. “We don’t want our child to suffer,” says Eli. “But we also want to make certain that there is a pla
ce for her in the afterlife.”
Should the doctors try to obtain a court order to administer the analgesics over the parents’ sincere religious objections?
Reflection: Pediatric Euthanasia
Parents are generally allowed to make medical decisions for their young children with the understanding that they will act in the children’s best interests. In cases where the parents’ sense of a child’s interest differs from society’s—such as Christian Scientists who oppose medication for severe but treatable illnesses—the state often imposes its own standards. However, a “best interest standard” becomes more challenging to enforce when the consensus of physicians is that an infant would be better off dying more quickly.
Several nations, including the Netherlands and Belgium, have decriminalized euthanasia for minors. In 2005, Dutch physician Eduard Verhagen proposed what has come to be known as the Groningen protocol, for ending the lives of infants experiencing hopeless and unbearable suffering. These children are usually given lethal combinations of the drugs morphine and midazolam. Crucial to the Groningen protocol is the consent of the child’s parents. Parental consent may prove a practical necessity—by making the procedure politically palatable to those who might balk at terminating a sick child’s life over the objections of her parents. Yet requiring parental consent to take such action differs from the criteria used regarding other medical interventions, from chemotherapy to surgery, where the best interests of the child are held paramount.
One justification for the distinction may be that losing a child is often a profoundly traumatic experience; since Eli and Delilah will have to live with the consequences of Baby Frances’s death—to a far greater degree than will her doctors—an ethical assessment of ending her life prematurely might also assess its impact on them. However, such an approach runs the risk of rolling down a slippery slope: Decisions to end life support for unconscious adults, for example, might similarly be assessed for their impact on the survivors, rather than solely upon the previously expressed wishes of the patients. Creating a “survivors veto” runs the risk of undermining patient autonomy.
In discussing cases like that of Baby Frances, ethicists often speak of the “dual effect” of giving morphine. The goal of the additional medication is pain control; death is merely an unintended, or unavoidable, secondary consequence. While this distinction may have philosophical merit, it is often of little solace to couples like Eli and Delilah.
73
Death and Taxes
Cornelius is a ninety-two-year-old widowed banker with terminal heart failure. He is in a hospital, on a ventilator, and drifts in and out of consciousness, but even when conscious, he appears profoundly confused. His family visits regularly, and they appear deeply devoted to him. This has been his condition since early November.
As the end of the year approaches, Cornelius’s family asks for a meeting with Dr. Benway, the head of the cardiology unit. The family explains that they want to take Cornelius off the ventilator. In the course of the meeting, their underlying motivation becomes clear. “He’s going to die anyway,” says his eldest son. “If not this month, then next month. But if he dies after January first, the tax code will have changed dramatically, and half of his fortune will go Uncle Sam rather than to his grandchildren. My father never would have wanted that.” To Dr. Benway’s surprise, the patient’s other six children all agree that he would rather die sooner so as not to lose the tax advantage.
Is it ethical to turn off Cornelius’s life support, which will likely lead to his rapid death, for the purposes of securing a tax break for his estate?
Reflection: Inheritance
Since most jurisdictions expect family members—either as healthcare proxies or decision-making surrogates—to honor the end-of-life preferences of their loved ones, the first question to ask in this scenario is how the hospital should handle the situation if Cornelius were himself fully competent and making such a request. The assumption is often made that all patients who are suicidal or wish to end their own lives are mentally ill. This is not the case. Many patients want either to end their own lives actively or to withdraw medical care for highly rational reasons. These might be medical reasons—such as concern over pain, loss of dignity, or resignation to a terminal prognosis. Yet they may also transcend health-related matters. An elderly woman might prefer that money spent on nursing care be saved so that she can leave a legacy for her church or pay for her grandchildren’s college educations. A utilitarian philosopher, plagued with a fatal disease, might not want to squander scarce healthcare resources. All states will honor a request from a mentally sound patient not suffering from a psychiatric condition to withdraw care—no matter what the underlying purpose or motive. Seven states (Oregon, Washington, California, Vermont, Montana, Hawaii, and Colorado) and the District of Columbia, under limited circumstances, allow patients to end their lives through active methods. That means that if Cornelius’s mind is intact and he wants to turn off his life support to avoid paying estate taxes, doctors will have to honor his request. (Despite the well-known adage about the certainty of death and taxes, it seems even taxes can be avoided on occasion.)
This scenario is more complicated, as Cornelius is not able to make his own decisions. Rather, his children—as is often the case—have been called upon to render decisions for him. They clearly have a potential conflict of interest, though, in that they stand to inherit more money if their father dies within the calendar year. That fact alone does not change the standard for determining Cornelius’s fate: Dr. Benway must do what the patient would have wanted. However, when such a possible competing motive exists, medical providers and courts may look for more convincing evidence to indicate that the family really is expressing the patient’s wishes. Written documentation, conversations witnessed by third parties, or even the patient’s overall life conduct may help clarify the appropriate decision in cases such as this. Under rare circumstances, a hospital ethics committee or a court (depending on the jurisdiction) may replace or overrule a proxy or surrogate who they do not believe is serving the patient’s wishes honestly.
Cases like that of Cornelius appear not to be only hypothetical. A peculiarity of George W. Bush–era tax legislation was that the inheritance tax on wealthy Americans expired on December 31, 2009, and did not resume again until January 1, 2011. Rich folks who died in the interval saved vast sums of money. At that time, trusts-and-estates attorney Andrew Katzenstein told the Wall Street Journal that at least a dozen clients had inserted provisions into their healthcare-proxy forms allowing their proxies to make decisions based on the tax code. One client even inquired whether seeking euthanasia in the Netherlands, where physician-assisted suicide is legal, would qualify him for the tax break. According to Katzenstein, it would have.
74
“Did He Have AIDS?”
Monty, a fifty-year-old roofer who is positive for HIV, the virus that causes AIDS, has been treated by Dr. Kildare for many years, but often skips his prescribed HIV medications for months at a time. One summer afternoon, Monty becomes short of breath while working and is rushed to the nearest hospital with a collapsed lung—the result of a walking pneumonia that likely resulted from his untreated HIV/AIDS. Soon Monty loses consciousness and is placed on a ventilator; his prognosis for recovery is poor.
As Monty’s condition deteriorates, Dr. Kildare contacts the patient’s only immediate living relative, his sister, Crystal, to make decisions about Monty’s medical care. In the past, Monty has told Dr. Kildare that he loves his sister very much but does not want her to know that he is HIV-positive or that he used to inject intravenous drugs, because such knowledge would upset her. By the time Crystal arrives at the hospital, Monty has already died. “I want to know what really killed my brother,” Crystal says to Dr. Kildare. “For peace of mind. Healthy middle-aged men don’t just drop dead of pneumonia. He didn’t have HIV or AIDS, did he?” She demands to see Monty’s medical records.
Should Dr. Kildare tell he
r that Monty had HIV, or should he make an effort to conceal this information by having it removed from Monty’s medical records?
Reflection: Posthumous Privacy
Physicians have long recognized that the ethical duty to preserve confidentiality should continue, at least to some degree, beyond the grave. Otherwise, many patients—especially those in the latter stages of life—might withhold critical, even life-prolonging information from their doctors. This principle is legally codified in the Health Insurance Portability and Accountability Act of 1996 (HIPAA), which initially ensured such confidentiality in perpetuity but has since been amended to shield patients’ healthcare information for fifty years. Many state laws also protect posthumous medical confidentiality. However, one must distinguish between “confidentiality” and “privacy.” While privacy rights entail the ability to keep information from everyone—such as material printed in a diary or shared with a priest—confidentiality protections permit disclosure to individuals who have a legitimate stake in accessing such information, including other physicians involved in the patient’s care, healthcare insurers, and certain government agencies. In most jurisdictions, a patient’s surviving agent—either his next of kin or his healthcare executor—generally acquires control of the patient’s medical record. That control affords this agent the right to access the patient’s healthcare information and to share it with others.
Who Says You're Dead? Page 19