End-of-Life Issues

Before the 1950s, end-of-life decisions were simpler than they are today. Most people died in their own homes, surrounded by family and loved ones. Illnesses such as scarlet fever, cholera, measles, diarrhea, influenza, pneumonia, and gastritis killed quickly. Medical science had not yet learned how to keep people with such chronic diseases as heart disease and cancer alive. Lifesaving technology, such as respirators and feeding tubes, was not available. Nature, not medicine, controlled the timing of one's death.

This began to change in the 1950s as medical technology increasingly became able to thwart death through an array of technical tools that could keep hearts beating, bodies nourished, and lungs breathing despite the ravages of disease, illness, and time. Advances in pharmacology and other medical procedures made it possible to prolong the life of even the seriously ill. Lengthened lives, however, did not always mean quality lives. On the extreme end of the spectrum, it meant that patients existing in a persistent vegetative state could be kept alive for an indeterminate time. Other patients, while conscious, were debilitated and in pain, confined to bed and dependent on machines, for weeks, months, and even years. When the end did come, it was usually in a hospital room. Unlike in the past, when only a third of patients died in medical institutions, in the early twenty-first century four out of five patients died in institutions such as hospitals and nursing homes. Instead of embracing the phalanx of medical machinery that could forestall death, these patients and their families began to focus on the quality of death rather than the prolongation of life.

Defining Death

In direct response to the development of life-sustaining technologies, the medical profession began to expand the definition of death. Traditionally, the loss of circulatory and respiratory function signaled death. But with the advent of technology that could sustain breathing and heart functioning through mechanical means this definition became less useful. A new definition that incorporated brain death—the irreversible loss of brain activity—into the definition of death was proposed and adopted. This meant life supports could be removed from those patients who were brain dead but were being kept alive through mechanical means. Still controversial is whether the definition of death should be expanded further to include those patients who have lost their higher brain functions but who continue to have lower brain functions, such as breathing. This new definition of death would include people who can no longer interact with their environment but are not totally brain dead.

However, medical definitions did not address the many spiritual, ethical, and legal questions that arose. Should patients be able to hasten their own death by refusing a respirator, feeding tube, or other life supports? If patients are unable to decide, should others be able to decide for them? If so, who should make the decision—family members, medical professionals, or both? Does it matter if the patient is young or old? What if the individual is not terminally ill, but severely and chronically ill? Is there a difference between refusing life supports and asking for medical intervention that would hasten death?

These and other questions spawned a national dialogue on the quality of death and the rights of dying patients. A physician, Elisabeth Kübler-Ross, in the classic text, On Death and Dying, explored the stages of death for both the dying and the bereaved. Medical ethicists, such as Robert Veatch and Tom Beauchamp, began exploring the ethical issues involved. A presidential commission was appointed to study the ethical problems in deciding to forgo life-sustaining treatment.

Quinlan Case

It was the legal system, however, that provided the primary guidance on how to address the knotty problems that accompanied the advent of life-sustaining technologies. The first case involving what is now referred to as the "right to die" was the Karen Ann Quinlan case, decided by the New Jersey Supreme Court in 1976. Quinlan was twenty-one when, while attending a party, she stopped breathing, for unknown reasons, for at least two fifteen-minute intervals. She was brought to a hospital where she slipped into a coma. She was unable to talk or see and was kept alive by a respirator and fed through a feeding tube. Her physicians predicted that she would never regain consciousness. Her father, a devout Catholic, asked her physician to disconnect her respirator. When the doctors and hospital refused to honor the request, Quinlan's father turned to the courts for assistance.

Quinlan's physician argued that because she was not brain dead, both medical standards and ethics required him to continue treating her, with the respirator being part of that treatment. The government also intervened, arguing that the state's interest in protecting the sanctity of life must be protected and that removing the respirator was tantamount to criminal homicide.

The New Jersey Supreme Court rejected both arguments, deciding that Quinlan's right to privacy, protected by the Constitution, was violated when her physician and the hospital refused to remove the respirator. Although the court recognized that the state had an interest in preserving life, it found that interest "weaken[ed] and the individual's right to privacy [grew] as the degree of bodily invasion increases and the prognosis dims." The court also rejected the idea that the medical profession was required to use all means at its disposal to keep patients alive. Rather, the "focal point of the decision [to terminate treatment] was whether the patient would return to a 'cognitive and sapient life' or remain in a 'biological vegetative existence.'"

As to who could make the decision to remove life supports because Quinlan was unable to, the court held that it could be her father. Practically, according to the court, Quinlan's right to privacy would be rendered meaningless unless her father could exercise it on her behalf. Central to the court's decision was its belief that Quinlan's father was of "high character" and very "sincere, moral, ethical, and religious." The court rejected the argument that her father's grief and anguish would distort his decision-making process, making him unable to make life-and-death decisions concerning his daughter. Quinlan was removed from the respirator, and to the surprise of her physicians and family she did not die until nine years later.

Cruzan Case

The Quinlan decision, issued by the New Jersey Supreme Court, was applicable only in that state. But it became the template for later court decisions and helped frame the social, legal, and policy issues underlying the right to die. Fourteen years later, the U.S. Supreme Court, in Cruzan v. Director, Missouri Department of Health, directly addressed the issue. Cruzan involved a young woman in a persistent vegetative state who had suffered severe brain damage in an automobile accident and had no hope of recovery. Nancy Cruzan was being kept alive by artificial hydration and nutrition that her parents wanted withdrawn. The Court found that the Fourteenth Amendment to the Constitution, which provides that persons may not be deprived of their liberty without due process of law, included a liberty interest in refusing heroic medical measures. The Court also relied on a common-law tradition that recognizes the right of individuals to control their own body, thus requiring that they consent before anyone, including a physician, touched them. The Court also found that withholding food or water was no different than withholding other forms of life supports, such as a respirator, would be.

Unlike the court in the Quinlan case, however, the Supreme Court did not find Cruzan's parents capable of making the decision to withdraw hydration and nutrition from their daughter. What was important to the Court was not what the parents wanted, but what the daughter would have wanted if she were able to decide for herself. Under Missouri law, where Cruzan lived, clear and convincing evidence of the patient's wishes regarding life support was required. For that evidence, the Court looked back to statements made by Cruzan, which included comments made to a housemate about a year before her accident that she would not want to live should she face life as a "vegetable." The Court did not find that these statements satisfied the clear and convincing standard, and it refused to grant her parents' wish to terminate life supports.

Determining Patients' Interests

Thus, while the Cruzan case established a constitutionally protected "right to die," it also highlighted the difficulty in applying that right. Many people on life supports are unable to communicate their wishes. Past statements, often made in the course of casual conversation, may not be specific or serious enough. There is the risk that a decision made while healthy may not be the same decision one would make when ill. And while the law does not distinguish between withholding food and withdrawing a respirator, a patient might want to. Questions also arose about whether to distinguish between persons who were terminally ill and those suffering from severe and chronic illnesses that were not imminently life threatening.

Leaving it to the family to accurately reflect the patient's interests also has its pitfalls. As the Court in Cruzan said, "even where family members are present, [t]here will, of course, be some unfortunate situations in which family members will not act to protect a patient." Expense and inconvenience may cause family members to advocate for the termination of life supports. Religious views may also differ within families, with, for example, a religiously devout parent resisting the preferences of a more secular child. On the other hand, it is often the family who best knows the patient and who has the patient's best interests at heart.

Advance directives. The response to many of these dilemmas was to encourage people, both through law and custom, to clearly record their preferences while they were still able to make those decisions. All fifty states have passed laws, referred to as Natural Death Acts, clarifying the right to refuse life-sustaining treatment. These laws provide for various forms of advance directives, which are statements, usually in writing, that outline an individual's end-of-life preferences. It includes a living will, which is a written statement expressing a person's willingness, or not, to accept life-sustaining technology. Another form of advance directive is a health care proxy, which is a written statement that delegates decision making to another individual when the patient is no longer competent. Many states also have Do Not Resuscitate laws, which govern a narrowly tailored type of advance directive that permits patients to refuse cardiopulmonary resuscitation if they suffer cardiac arrest. States have also passed laws that provide for the appointment of a surrogate decision maker (usually a family member), who is designated to make health care decisions when the patient has failed to complete an advance directive. These laws typically require the surrogate to consider the values and beliefs of the patient.

Bioethics and other issues. The medical profession has also responded, setting up hospital bioethics committees that establish policies and advise health professionals, patients, and their families of their rights and alternatives. Despite these laws, and the existence of bioethics committees, problems still remain. It is estimated that only one out of five adults has completed an advance directive. This means, as in the Cruzan case, that the patient's preferences must be ascertained, if possible, from past statements, unless the state has a law providing for a surrogate decision-maker to be appointed. For those who have executed advance directives, it may be too vague or ambiguous to be of use. Distraught family members may also try to persuade physicians not to follow a patient's preference for the withdrawal of life supports.

Other issues have also emerged as the right to die has become more firmly established. Evidence indicates that physicians sometimes ignore a patient's advance directive, administering life supports when the patient does not want them. This may be because they are unaware of the directive or do not agree with it. This has spawned a new type of legal action that attempts to recover monetary damages from the physician or health care provider for, in essence, keeping the patient alive against his or her will. Several of these lawsuits have been successful, but the law is still evolving in this area. Another emerging area of concern is whether a health care system focused on cost cutting and rationing of medical services under managed care will discourage patients from choosing expensive life-sustaining technology. Here, the issue may be who decides—the patient or the physician—whether such intervention is futile or inappropriate.

Assisted Suicide and Euthanasia

Whether the right to die should be extended to a more active role in hastening death, such as physician-assisted suicide, is also a controversial issue. Physician-assisted suicide is when a physician provides medications or other interventions to a patient to enable the patient to commit suicide. Proponents of assisted suicide have argued that there is no distinction between ceasing or not accepting medical treatment and taking affirmative steps to hasten death. They contend that the right to control one's own body means the right to control one's death, with the help of others if necessary. Opponents argue that permitting assisted suicide is a slippery slope, and that the right to die will turn into the "duty to die." They contend that the old and infirm will feel an obligation to hasten their death because of the burden they create on society. The U.S. Supreme Court, in the 1997 case of Vacco v. Quill, has held that there is no constitutional right to assisted suicide. This does not mean, however, that states cannot pass laws legalizing assisted suicide. One state, Oregon, has already done so, passing the Death with Dignity Act in 1994.

Still more controversial is euthanasia, or "mercy killing." Voluntary active euthanasia involves one person asking another to cause the first person's death by, for example, administering a lethal injection. Such an act was not legal at the start of the twenty-first century, although many people supported the honoring of a terminally ill person's request for voluntary active euthanasia. Involuntary active euthanasia means ending patients' lives without their consent. There is little or no public support for this type of euthanasia.

Wills and Estates

Another less controversial, and more routine, category of end-of-life decisions is how property is disposed of when someone dies. This area of law, commonly referred to as "wills and estates," is carefully regulated. A will is a written document that provides for the disposition of all of a person's property upon the person's death. An estate is the legal term used for this property. Without a will, state law determines how the property will be distributed. A surviving spouse gets half, while the children get the other half. Wills cannot be made by persons who have become incompetent, a legal term referring to persons who are unable to manage their own affairs because they cannot communicate or are suffering from other cognitive or psychological impairments. Thus, like advance directives, wills should be completed and updated before a person becomes ill or incompetent.

Decisions at the end of life have become more complex as modern technology conflicts with people's desire to die a more natural death. While a patient's right to refuse life-sustaining medical interventions is firmly embedded in the law, the full contours of this right are still evolving. Individual values of autonomy and self-determination must be balanced with medical progress and the government's interest in protecting life.

See also: Advance Directives; Cruzan, Nancy; Definitions of Death; Informed Consent; Living Will; Natural Death Acts; Quinlan, Karen Ann; Suicide Types: Physician-Assisted Suicide; Wills and Inheritance

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VICKI LENS