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Hastings Center
Bioethics Briefings

For Journalists, Policymakers, and Educators

  • FROM BIOETHICS BRIEFINGS

End-of-Life Care

Framing the Issue

End-of-life care and its many dilemmas capture public attention when they make national news, often involving a family seeking a court order to remove life support from a patient who, medical experts say, is in a vegetative state with no hope of recovery.  The Schiavo case in 2005 was the most recent episode, but before that it was the Cruzan case in 1990 and the Quinlan case in 1976. When the news fades, often so does public attention to end-of-life decisions.

In reality, however, these decisions are omnipresent, and far more mundane than the headlines suggest. Approximately 2.5 million Americans die each year in the United States. For the nearly 80 percent of those who live their final days in hospitals, nursing homes, and at home in hospice care, decisions continually need to be made about what treatment to administer, what treatment to cease or withhold, what treatment to continue, and what treatment to taper off.

While the fact of death remains inevitable, its timing is often very much a function of human agency. Once it was common to speak of nature taking its course, but today it is more common to view death as a matter about which people—individuals at or near death, or their surrogates—have some control. They may forestall death by choosing heroic measures to sustain life, such as resuscitation. Or, they may hasten death by forgoing treatment or by seeking to take action to bring life to an end.  Because of its profundity, end-of-life decision-making occupies center stage in contemporary American bioethics. For four decades, medical professionals and policy makers have looked to bioethicists for advice in shaping medical guidelines and laws on end-of-life care.

Focus on Autonomy

Traditionally, ethical and legal concerns with end-of-life care have focused on the interest of patients, an interest referred to as autonomy or self-determination. Autonomy is paramount for patients who possess decision-making capacity, but it is also a major consideration for patients who lack this capacity. Their wishes must be respected by the relatives or other health care proxies who make decisions on their behalf.

According to traditional bioethical analysis, the centrality of the individual in contemporary Western society requires that adults be permitted to make their own decisions about what medical treatment they want and do not want. To do otherwise would be an inexcusable invasion of individuals’ interests in bodily integrity and in charting their own life plans in accordance with their own values, preferences, and interests. Law–especially twentieth- and twenty-first century law–reflects and reinforces this ethical analysis.

When individuals lose the capacity to make their own medical decisions, the interest in autonomy requires that decisions be based on wishes they expressed earlier in their lives. This position has been adopted into law: all states recognize the legal authority of advance directives such as living wills and health care powers of attorney. It is well-accepted both by bioethicists and the law that oral statements previously made by patients—either instead of written advance directives or to supplement them—may also be useful guides in determining what medical treatments they do and do not want. Because advance directives, whether oral or written, must be translated into medical orders to be followed at the bedside, many states have authorized additional legal tools to assist in that process. Physician Orders for Life-Sustaining Treatment (POLST) or other similarly named orders are designed to be completed by medical personnel during conversations with patients or surrogates about the patients’ end-of-life treatment wishes.

When individuals have not made manifest their decisions about medical care, the ethical and legal protocol is to implement a person’s presumed wishes through a doctrine known as “substituted judgment.” Under this doctrine, a surrogate must make decisions for a patient. If the patient has not appointed a surrogate in an advance directive, close family members are ethically and legally empowered to make decisions for the patient.

Judicial deference to autonomy has been on the increase. It can be seen most clearly in cases involving Jehovah’s Witnesses, who, for religious reasons, reject blood transfusions even when they are life-saving. The trend in the 1960s and 1970s, when these cases first arose, was to override refusals of treatment. But since the 1980s the trend has been to honor them, even though doing so is predicted to cause the patient’s death and may run counter to the interests of the patient, as well as the family, community, health professions, and society as a whole.

Challenging Autonomy

Some bioethicists now argue that autonomy has become a kind of tyranny over end-of-life decision-making. They believe that overruling a patient’s autonomy may be justified in the following circumstances:

Welfare of the individual. At times, the autonomous decisions of patients may seem to compromise their welfare. While individuals may be capable of making decisions, they may be incapable of reasoning about their personal impact. Under such circumstances, one might argue that the decisions are inauthentic–they would not serve the person’s best interest as that person would have defined it, had he or she been capable of reasoning. Traditional bioethical analysis contends that there is rarely, if ever, any justification for overruling the decisions of people with decision-making capacity. If a decision seems to be uncharacteristic of an individual—inconsistent with the person’s deeply held values, beliefs, and goals—then it is justifiable to inquire about the soundness of the person’s decision-making capacity. But once that soundness is established—often through the use of tests by a psychiatrist, psychologist, or neurologist–the fact that a decision seems to run counter to the individual’s welfare is not an adequate ethical or legal basis for overturning it.  If someone’s decisions could simply be ignored when, in the view of others, they would be harmful to the individual’s well-being, autonomy would become meaningless; people would have autonomy only when their decisions comport with some external standard, which is the antithesis of autonomy.

The interests of others. The centrality of autonomy is sometimes criticized for failing to regard the individual as part of a complex network of relationships. According to this view, the interests of the patient’s partner, children, parents, and others who are close to the patient must be taken into account in end-of-life decisions. Decisions that prolong life can entail prolonged suffering for patients and for their close family members and friends. Decisions that shorten a patient’s life also have consequences for others. Aside from the grief of the survivors, such decisions can be burdensome to others, such as a dependent minor child. On the other hand, decisions to shorten a patient’s life can possibly have benefits, such as the comfort of knowing that a loved one is no longer suffering or an end to the stress and expense of caregiving.

Some bioethicists emphasize the importance of family and community interests in decision-making at the end of life. However, mainstream bioethical analysis rejects them as overriding considerations. So usually does the law. Although judicial decisions usually proclaim that an individual’s right of self-determination must be balanced against the state’s interest in the well-being of the individual’s minor children, even that interest has virtually never been found to outweigh the patient’s right of self-determination.

Increasingly, some bioethicists offer a disability critique of end-of-life care, focusing on a broad interest in protecting vulnerable patients including not only those with disabilities but also the elderly and persons with low incomes. While mainstream bioethical analysis does not discount the need to protect a vulnerable patient, ethics consultations and the legal process exist to ensure such protection. A narrow focus on this interest could result in denying autonomy to persons with disabilities, the elderly, and persons with low incomes, when their choices should be respected as much as anyone else’s.

Interests of caregivers. Relationships that dying individuals have with their medical and personal caregivers can become quite close and intense. The training, ethos, and codes of ethics of health care professionals buttress the feelings that arise from these relationships. Some people argue that permitting patients to make medical decisions that would shorten their lives could undermine the morale of health care professionals and thus also their commitment to doing their utmost for every patient. Seen this way, one patient’s decision could adversely affect the quality of care not just for that individual, but also for patients in general. The interests of caregivers have been invoked in a few legal cases involving patients’ decisions to refuse medical treatment, but courts have not ruled that this interest outweighs a patient’s right of self-determination.

Societal interest in allocation of scarce resources. Medical resources are scarce. That much is uncontroversial. But of all the reasons for overriding patients’ autonomy, the societal interest in the efficient use of scarce health care resources is the most controversial. Proponents of considering this interest make the claim that an individual’s decision to continue medical care at the end of life must be weighed against the cost-benefit ratio of doing so. In other words, overriding a patient’s desire for a particular treatment is justified if the benefits of the treatment come at too high a price or if there is compelling evidence that the treatment will provide little or no benefit.

Proponents further contend that it is ethically permissible–indeed, ethically obligatory–to deny resources if they will provide little or no benefit when the cost is being borne in whole or in large part by society: by taxpayers through Medicare, Medicaid, or other government programs or by society at large through private insurance. Opponents of this position acknowledge the scarcity of resources, but claim that such “bedside rationing” violates the physician’s professional obligation to act solely in the patient’s best interests, and that denial of treatment should be made at the policy, rather than the individual, level.

Another dilemma arises when a doctor thinks that a treatment is not beneficial (i.e., is futile), but a patient wants it anyway. Despite several dozen state appellate court opinions upholding patients’ decisions to forgo life-sustaining medical treatment, there has been little discussion about what legal protection, if any, ought to be accorded a patient’s wish—or, more likely, a family’s wish for the patient—to receive treatment that physicians do not consider worthwhile.

Emerging Issues

Although there is a consensus in law and clinical medicine about many of the ethically difficult issues in end-of-life decision-making, recent developments demand attention from public policymakers and legislators.

Physician-aided dying. The practice of physician-aided dying, in which a physician writes a prescription for life-ending medication for a terminally ill adult who is capable of making decisions, has expanded to seven states and the the District of Columbia as of 2018.  (See “Physician Assisted Death.”)

Palliative care. The increased availability of physician aid in dying has been accompanied by an increased legal and ethical focus on palliative care and hospice. The states issuing reports on physician aid in dying indicate that patients contemplating the practice increasingly receive information about both palliative care and hospice. Some states have sought to ensure that this is the case by passing laws explicitly requiring the provision of information about those options as part of the clinical process of informed consent.

Permanent vegetative state. Advance directive legislation frequently cites a condition known as persistent or permanent vegetative state, or permanent unconsciousness, as a reason for forgoing life-sustaining treatment. Recent developments in neuroscience, however, have made it clear that this medical condition is not the unitary phenomenon it was once thought to be. Devastating brain injuries exist along a continuum. Some people who appeared to be permanently vegetative were then found, based on brain imaging, to have a surprising amount of brain activity, perhaps raising the hope that their condition may improve. This new insight into the brain poses the very difficult question of whether life-sustaining medical treatment must be maintained for such persons in the absence of clear and convincing evidence in an advance directive that they would not want to be kept alive in such a condition. (See “Brain Injury: Neuroscience and Neuroethics.”)

Denial of treatment. Perhaps the issue people least want to talk about may prove to be the most important because it is closely bound up with larger issues of health care reform. That issue is the denial of some forms of medical treatment at the end of life because of the belief that they provide little or no benefit and consume scarce health care resources–in other words, rationing.

Current practice by physicians and hospitals is sometimes initially to resist providing such treatment but to yield in the face of pressure to the contrary from families. Even if physicians and hospitals provide it, however, standard health insurance contracts, as well as Medicare and Medicaid policies, give payers the right to refuse to cover treatment deemed not medically necessary. As a result, health care providers may accede to desires for futile care, but patients may lack the resources to pay for it, which then leaves health care providers and physicians in the difficult position of either treating without being paid or refusing care because of inability to pay.

At the dawn of the twenty-first century, this conflict began to arise with respect to the determination of death. Despite legal and ethical consensus that death may be determined by either neurological criteria or traditional cardio-pulmonary criteria, families of patients –usually parents of infants or young children–began pushing back against determinations that their loved ones were dead by neurological criteria. While asserted as a variety of legal claims, underlying most of those claims are concerns about whether scarcity of resources had influenced determinations of death. Legal and ethical consensus remains that death by neurological criteria is a valid method of determining death, but some institutions have accommodated protesting families by maintaining bodily functions of the patient declared dead, almost always either without charge or paid for by charitable foundations on behalf of the families.

This difficult balancing act is unlikely to change unless there is a national consensus, embodied in legislation, that limits the medical treatment that will be paid for by private and government health insurance to that which has been proven  if not cost-effective, at least, effective. While coverage contracts now limit payment to medically necessary treatment, this standard would be legally imposed if such legislation were adopted.

Limitations of Advance Directives

Only a small proportion of Americans have written advance directives, such as a living will, but their usefulness has long been questioned by the physicians who must draw guidance from them. Advance directives tend to be either too general or too specific to shed light on—or do not address— the issue to be decided. For now, the best directives seem to be those that designate a health care proxy, but even their effectiveness is open to question. Studies show that close family members do not always have accurate knowledge of what a patient really wants. Despite the limitations, it is better to have an advance directive than not to have one, and tools such as POLST can help.

Legal and ethical encouragement of a robust advance care planning process, rather than simply execution of advance directives, has also begun to help assure that patients’ end-of-life care wishes will be known and honored. Medicare’s recognition of a billing code that physicians may use to bill for advance care planning has begun to align the law, ethics, and financial interests in the promotion of robust advance care planning. In line with recommendations from governmental and medical bodies, health care institutions have launched organized advance care planning programs to achieve that goal as well.

Kathy Cerminara, JD, LLM, JSD, is a professor of law at Nova Southeastern University Shepard Broad College of Law.

Alan Meisel, JD, a Hastings Center Fellow, directs the Center for Bioethics and Health Law at the University of Pittsburgh.

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