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PERSPECTIVEThe Prognosis For Changes In End-Of-Life Care After The Schiavo Case
Americans have reached consensus that (1) people have a right to refuse life-sustaining medical interventions, and (2) interventions that can be terminated include artificial nutrition and hydration. The one unresolved issue is how to decide for mentally incompetent patients. Only about 20 percent of Americans have completed living wills, and data show that family members are poor at predicting patients’ wishes for life-sustaining care. But despite court cases and national consensus that these are private and not legislative matters, the Schiavo case is unlikely to change practices except to increase the number of Americans who complete living wills.
Remember 1976? That was the year the United States was engaged in the case of Karen Ann Quinlan, the first so-called right-to-die case.1 When Quinlan was twenty-one years old, she ceased breathing for two fifteen-minute periods while at a party. In the emergency room her pupils were nonreactive, and she was unresponsive to deep pain stimuli. She was placed on a respirator, and a year later she was respirator-dependent, in a persistent vegetative state, and receiving nutrition through a feeding tube. After consulting his priest, Quinlan’s father requested that the respirator be discontinued, but her physician refused, and a series of court cases ensued. The Quinlan case, in which the New Jersey Supreme Court established a right to refuse medical care, shifted the nature and focus of terminating care debates, emphasizing a patient’s control over his or her medical care.2 Interestingly, the U.S. Supreme Court refused to hear the case. After the respirator was withdrawn, Quinlan continued to breathe on her own and was kept alive for nine more years with artificial nutrition and hydration.
Through the remaining years of the 1970s and the 1980s, the United States engaged in an extensive discussion about end-of-life care through a series of state court decisions—mainly in California, New Jersey, Massachusetts, and, yes, Florida—as well as through medical journal articles, national medical conferences, and media coverage. A national consensus evolved. First, there was general agreement that competent patients have the exclusive right to refuse or terminate life-sustaining care, even if the patient’s wishes conflict with those of the patient’s family.3 Second, the courts established that life-sustaining treatments that can be refused include not only mechanical respirators, such as in Quinlan’s case, but also blood transfusions, renal dialysis, cancer chemotherapy, and artificial nutrition and hydration.4 Finally, the nation reached consensus that the stated wishes of mentally incompetent patients who leave living wills or other advance care documents are enforceable in decisions involving the refusal or termination of medical care. Even in cases where there was no living will, most people supported the right of the family to end life-sustaining care on behalf of the incompetent patient.
In 1990 this national consensus was affirmed and solidified by the U.S. Supreme Court’s Cruzan decision.5 In its details, the case of Nancy Cruzan was almost identical to that of Quinlan. A young woman (age thirty-one) flipped her car off the road while driving late one night. She had suffered severe brain damage by the time she was brought to the hospital. After many years with no recovery in her brain functioning, her family sought to have her artificial feeding and hydration terminated. The Supreme Court recognized a right to refuse life-sustaining treatment, grounding it in the Fourteenth Amendment’s guarantee that no state "shall deprive any person of life, liberty, or property, without due process of law." This Court later reiterated this right in its 1997 ruling related to euthanasia and physician-assisted suicide.6 The Court also clearly stated that artificial nutrition and hydration are medical treatments that can be withheld or withdrawn under the same guidelines that apply to other medical treatments and are not merely akin to eating applesauce with a spoon. In Justice Sandra Day O’Connor’s words: "The liberty guaranteed by the Due Process Clause must protect...an individual’s deeply personal decision to reject medical treatment, including the artificial delivery of food and water."7 Finally, the Court allowed states to determine how the right would be exercised if the patient was mentally incapacitated and left no living will. In Missouri, where Cruzan was being heard, the state adopted the "clear and convincing" evidence standard, which requires more than a casual conversation—usually written or explicit verbal statements—to establish the patient’s wishes. In Cruzan, the family was finally able to identify a cousin who claimed to have had a conversation with Nancy in which she indicated that she would not want to be kept alive in a persistent vegetative state. This satisfied the Court’s evidentiary requirement, and the feedings were stopped. Because of the authorization for states to require higher levels of evidence than merely casual conversations, one dominant message from the Cruzan case was for Americans to complete living wills.
What were the consequences of this national discussion? First, polls show consistently that 70–80 percent of Americans would not want to be kept alive if they were in a persistent vegetative state or another irreversible coma-like situation.8 Second, data indicate that physicians have become much more comfortable with stopping medical interventions for dying patients, and termination of care is the standard practice for most U.S. deaths.9 For example, about 90 percent of Americans die without cardiopulmonary resuscitation, and the vast majority of deaths in intensive care units (ICUs) occur after medical interventions are withheld or withdrawn.10 Also, in 1980–2000 there was a dramatic shift in the location of deaths—from in hospital to out of hospital—as well as a sharp increase in the use of hospice, which indicates that patients are increasingly forgoing all available medical treatments.11
Despite the discussion that Quinlan and Cruzan initiated, one major problem related to end-of-life care has not been resolved since 1976: how to decide for incompetent patients who do not leave a living will or advance care directive. Polls show that approximately 80 percent of Americans endorse living wills as a good idea and want them honored, and in the wake of the Cruzan decision, the number of Americans with living wills doubled.12 Unfortunately, this doubling was from 10 percent of the adult population to 20 percent—a number that has remained static for fifteen years. Yet even if patients have completed advance directives, there still remain barriers to implementing them. These documents often are not placed in the patient’s medical record, and the patient’s physician may not be aware of their existence or content.13 In addition, data indicate that few directives actually state specific directions from the patient.14 The U.S. Supreme Court has held that in the absence of explicit patient instructions, there is no constitutionally protected right for families to exercise the right of incompetent patients to terminate care.15 However, the Court did not delineate uniform national rules regarding who should decide for incompetent patients, leaving it instead up to each state.
It is at this point that the Terri Schiavo case transpired, targeting the single issue in which definitive guidance and national consensus has been lacking. First, there are no substantive criteria for when to terminate care in the case of individuals who are incompetent and have not left advance directives. Furthermore, data show that leaving the decision to patients’ family members or other proxies is less than perfect because surrogate decisionmakers do not necessarily know the wishes of the patient.16 Schiavo’s situation, yet again, was similar to those of Cruzan and Quinlan.17 In 1990, twenty-seven-year-old Terri Schiavo had cardiac arrest and lapsed into a persistent vegetative state, with nutrition and hydration delivered through feeding tubes. Eight years later her husband sought to discontinue the feeding tubes, but Schiavo’s parents objected. When the case was brought to court, a judge determined that there was "clear and convincing evidence" that Schiavo would not have wanted to be kept alive in a persistent vegetative state, a decision that was reaffirmed in an appeals court. Schiavo’s parents tried several times to bring the case to the courts with claims that they had found new evidence, including testimony from doctors who said that Schiavo was not in a persistent vegetative state or who reported the existence of new treatments that might restore her cognitive functioning. In addition, Terri’s faithfulness to the Pope was cited as grounds for believing that she would have abided by the Pope’s 2004 statement pertaining to life-sustaining treatment, even though he made this statement after she was in a persistent vegetative state and, at the time of her accident, the Catholic Church seemed to have reached consensus that withholding or withdrawing artificial feeding was morally acceptable, at least in some cases.18 Despite these efforts, the courts ruled against Schiavo’s parents each time, and the Florida Supreme Court repeatedly refused to hear the case.
Given the courts’ rulings in the Schiavo case, the U.S. political climate relating to withholding and withdrawing care is unlikely to shift dramatically in the direction of the far right. Above all, the rights of incompetent individuals have been well established and reaffirmed, even by the U.S. Supreme Court. Also, artificial nutrition and hydration have been deemed medical interventions just like dialysis, which even conservatives and the religious right believe can be withdrawn or withheld to let a person die. The Schiavo case showed us that most Americans do not believe that these issues should be decided by politicians. In an ABC News poll, 70 percent said that it was inappropriate for Congress to get involved in the Schiavo matter, and 67 percent thought that politicians were trying to keep Schiavo alive more for political gain than out of concern for her or a belief in the underlying principles.19 The Schiavo case also can be viewed from the physician’s perspective. People in the medical profession are not likely to halt their practices of terminating care at the end of life to keep patients alive. In one California case, a man was kept alive in intensive care for two years against doctors’ objections. Cases such as these also introduce economic issues, as the costs of keeping people alive—especially in the ICU—are substantial. In the paper preceding our commentary, Todd Gilmer and colleagues show that the use of ethics consultations associated with "nonbeneficial" ICU care yielded cost reductions ranging from $2,276 to $5,573 per person, which could generate an annual cost reduction of $157,830 for a hospital with forty ICU beds.20 Thus, instead of a trend in the direction of sustaining patients through artificial means, it is more likely that we will see more cases where doctors want to terminate care but get resistance from patients’ families who are hoping for a miracle. In the wake of the Schiavo case, it is extremely likely that more Americans will fill out living wills or other advance directives. The ABC News poll did find that as a direct result of hearing about Schiavo, half of those surveyed reported that they had spoken to family members or friends about what they would want done if they were in a similar state.21 But how many of these discussions get converted into living wills is yet to be seen. Ultimately, will Terry Schiavo’s case change end-of-life practices and law? Not likely.
Lindsay Hampson is a fellow in the Department of Clinical Bioethics, Warren G. Magnuson Clinical Center, National Institutes of Health, in Bethesda, Maryland. Ezekiel Emanuel is chair of the department. The opinions expressed are the authors’ own. They do not reflect any position or policy of the National Institutes of Health, U.S. Public Health Service, or Department of Health and Human Services.
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National consensus evolves.
Cruzan case.
