Don't Block the Exit
As the Supreme Court considers its first euthanasia case, the right-to-die movement faces a tougher challenge: getting people to contemplate their own deaths, and getting the politicians to let them.
Nancy Cruzan, a 32-year-old Missouri woman, had her 15 minutes of fame in early December. Featured in every major newspaper and magazine, profiled on news programs and talk shows, she was a short-lived media phenomenon. But after December 6, the day the Supreme Court heard arguments in the case bearing her name, her story slipped into oblivion.
Nancy herself has been in oblivion for the last six years. She lies comatose in a state hospital in a persistent vegetative condition never having regained consciousness since a car accident in 1983. All physiological evidence indicates that Nancy has no thoughts, sensations, or emotions. If not for her artificial life support, she would have died, mercifully, years ago. Nancy is supported by a feeding tube and by Missouri's taxpayers, who pay $130,000 a year to keep her "alive." She has no hope for recovery and could continue to "live" for another 30 years.
When the hospital administration refused their request to terminate her feeding, Nancy's parents turned to a county probate court, which authorized the withdrawal of life support. Upon appeal, however, the Missouri Supreme Court reversed. In a departure from numerous solid precedents, the court ruled that the state has an "unqualified interest in promoting life," regardless of its quality, thus condemning Nancy and her family to continued limbo. In their appeal, the Cruzans argue that their constitutional rights to privacy and to equal protection of the laws should prevent the state from intervening.
The Cruzan family and the community of legal scholars are not the only ones anxiously awaiting the Supreme Court's decision in Cruzan v. Harmon, which is expected early this summer. For the leaders of the right-to-die movement—a loose federation of several organizations that advocate the legalization of passive or active euthanasia—the Cruzan case is an important landmark. If the Court finds a constitutional right to die in deciding this, its first euthanasia case, it will vindicate their past actions and confirm their convictions. December 6 was their day in court as well.
Ending Nancy's misery, and that of her family, would be an example of "passive" euthanasia, which involves disconnecting or withdrawing artificial life-support systems, including feeding tubes, from people who have fallen into comas. Although it requires an affirmative act—pulling the plug—the practice is considered passive because it simply allows nature to take its course.
Active euthanasia, however, is a qualitatively different—and far more controversial—act. It involves direct measures, such as injecting a fatal dose of painkillers, that prematurely end a person's life. The Hemlock Society is the only right-to-die group that advocates active euthanasia, albeit only for the terminally ill and then only with the consent of the patient. The rest of the movement—including the two largest groups, Concern for Dying and the Society for the Right to Die—supports passive euthanasia only.
Although right-to-die organizations have existed since the 1930s, the contemporary movement really dates from 1975. That was the year the Karen Anne Quinlan case became a cause célèbre. In September 1975, five months after the 21-year-old woman fell into a drug-and-alcohol-induced coma, her father, Joseph Quinlan, petitioned a local court for the legal authority to remove her life support. The court refused, but the New Jersey Supreme Court overruled its decision in March 1976, finding that the Quinlans had the right to refuse treatment for their daughter. They disconnected the respirator later that year, although she did not finally die until 1985.
The conundrum in the sensationalized Quinlan case, as well as in many less publicized cases decided by other state courts, was the question of consent. Sentient patients can refuse medical treatment or order it withdrawn under almost any circumstances. This is a right long established by a succession of precedents in both common and constitutional law. But the court had no way of knowing if an incompetent like Karen Anne Quinlan (or Nancy Cruzan) wanted the treatment disconnected.
A living will, a document in which a person sets forth directions regarding life-prolonging treatment, would have provided an explicit expression of intent in the Quinlan case. But such documents were not legal in 1975. After the Quinlan trial, however, the drive for their legalization began in earnest. Although the language may vary, living wills generally contain a statement like: "I direct my attending physician to withhold or withdraw treatment that merely prolongs my dying." In the wills, people can also enumerate extraordinary measures they wish to forgo should they become incompetent—for example, artificial life support, respirators, tube feeding, unwanted operations, jump starts of the heart. Or all of the above.
Karen Anne Quinlan's limbo made the utility of living wills obvious. Large numbers of Americans became aware of her plight and began to take action to guarantee that they would not suffer a similar fate. In the 18 months following the first Quinlan trial, the Euthanasia Society of America and its affiliate, the Euthanasia Educational Council, received 1.25 million requests for living wills. Between 1969 and 1975, they had distributed about 750,000.
Riding the wave of public indignation and attention aroused by the Quinlan case, the Euthanasia Society changed its name to the Society for the Right to Die and began more actively to pursue the legalization of living wills. The grounds well brought legislative action almost immediately. In 1975 alone, 15 right-to-die bills were introduced in state legislatures. And in 1976, California enacted the first living-will statute, the California Natural Death Act. Success has followed success, and living wills are currently valid, in various forms, in 40 states and the District of Columbia. In addition to giving living wills legal force, the statutes shield physicians who execute them from civil and criminal liability.
The Society for the Right to Die, which has about 150,000 members, now views living wills as its raison d'être. Over the last 20 years, the SRD estimates, it has distributed about 7, million living wills free of charge, and it continues to work for the universal legalization of living wills in the United States. "Soon we will have living-will statutes in every state," says Executive Director Fenella Rouse. The right-to-die movement is not pursuing a national living-will law, but a pending Senate bill would require hospitals receiving federal funding to notify their patients of relevant state laws.
Estimates of the numbers of Americans who have made living wills vary from 9 percent (AMA) to 15 percent (Gallup). But despite the occasional publicity bursts generated by a Karen Anne Quinlan or a Nancy Cruzan, right-to-die groups have trouble getting their message across. Ensuring death with dignity requires a certain amount of morbid foresight. Drawing up a living will means sitting down and contemplating seriously the unthinkable. "It is something people don't want to think about, especially young people," Rouse says.
Given this reluctance, there will continue to be Quinlans and Cruzans, even if living wills are made legal throughout the country. In such cases, the family should be allowed to withdraw life support once it is clear that the patient will not regain consciousness. This may require a modification in the legal definition of death. Certainly we must reject the premise that the state may properly require either relatives or taxpayers to maintain a permanently comatose patient indefinitely. While living wills are no panacea, they can help to prevent such situations from arising.
Another legal device for passive euthanasia that the SRD advocates is extending durable power-of-attorney provisions to medical decisions. The durable power of attorney, which transfers the decision-making powers of an incompetent person to a specified party, now covers medical decisions in 31 states and in about a dozen states specifically includes the right to withdraw life-supporting treatment. The first statute that explicitly extended the provision to medical treatments was passed in California in 1983.
Concern for Dying, which was known as the Euthanasia Education Council until 1980, also supports and distributes living wills but has not taken an active role in their legalization. "We're not interested in legislation," says Giles Scofield, president of Concern, which has 135,000 members. "Legislation tends to curtail the rights people have." His approach is absolutist: Any law that enumerates rights regarding medical treatment can be interpreted to exclude other rights, when in fact the right to refuse treatment is inalienable. "Just because a law exists or doesn't exist, doesn't mean people don't have the right to die," Scofield says. Maybe not, but laws legalizing living wills can prevent misguided hospital officials from prohibiting passive euthanasia in certain circumstances.
Concern's position on legislation has been a bone of contention between it and the SRD. The two groups shared offices until 1980, when they broke over Concern's antipathy for lobbying. The same year, the SRD brought suit against Concern over financial disagreements and won a $275,000 settlement. And in 1982, the SRD opposed Concern's admission to the World Federation of Right to Die Societies, an international umbrella organization founded in 1980. Now, however, past differences seem to have been resolved. "There was a period of animosity between us that is over," says Rouse. The two organizations are still housed in the same New York City office building, separated by only a floor.
The tactical split between the SRD and Concern is minor compared to the differences between those two groups and the Hemlock Society, which supports active euthanasia. This position puts the society at odds with public opinion as well as the rest of the movement. The fence between active and passive euthanasia has been reinforced in recent decades, as the two practices have acquired distinct cultural, moral, and legal meanings.
Passive euthanasia has won grudging but virtually universal approval. The American Medical Association condones the practice, as do most religious authorities—among them many Protestant denominations, the three major movements of Judaism, and even the ardently pro-life Catholic church. Dozens of judicial jurisdictions have sanctioned passive euthanasia in a series of decisions, the Missouri Supreme Court's Cruzan ruling notwithstanding. Passive euthanasia is widely regarded as a logical, humane, and sensible process for ending both the quasi-existence of insensate patients and the agony of their all-too-feeling families.
Active euthanasia, on the other hand, is almost universally rejected—condemned by religious groups, disavowed by the medical establishment, and prohibited by law. Americans are understandably queasy at the thought of active euthanasia because of its potential for abuse. During the late 1930s and early 1940s, the Nazis, before they began eradicating Europe's Jews, euthanized more than a million retarded, deformed, and otherwise imperfect citizens. Acts of involuntary, active euthanasia, these merciless killings have demonized the term euthanasia, whose original Greek meaning is "good death."
"Euthanasia came to mean, for many people, active, involuntary euthanasia," says SRD's Rouse. Largely because of this perception, the SRD and Concern for the Dying have distanced themselves from active euthanasia, which they once supported. But as the major right-to-die organizations were renouncing the practice in the late 1970s—deleting euthanasia from their titles and focusing exclusively on living wills—British journalist Derek Humphry, founder of the Hemlock Society, "realized there was a gap and stepped in."
Humphry's involvement in the movement grew out of personal experience. In March 1975, he mixed a fatal solution of medication for his cancer-stricken wife, Jean, who was in her last, excruciating days. In 1978, after publishing Jean's Way, a moving account describing his wife's assisted suicide, Humphry moved to the United States. Jean's Way had received a great deal of publicity, and "hundreds of people wrote to me for help in dying," Humphry says. Emboldened by this new-found recognition generated by appearances on television talk and news shows, Humphry and his second wife, Ann Wickett, announced the formation of the Hemlock Society at a Los Angeles press conference in 1980.
The Hemlock Society's professed primary goal is to "promote a climate of opinion that would tolerate the right of people who are terminally ill to end their lives in a planned manner." Meanwhile, the Hemlock Society provides information on how terminally ill people can commit suicide. It has produced a chart of 18 different drugs and their respective lethal dosages. And in 1981 Humphry published Let Me Die Before I Wake, a "guide to self-deliverance" that describes in explicit detail how several terminally ill people have ended their lives. These publications, however, are not sold to the general public; they are available only to Hemlock Society members "for possible self-deliverance from a future terminal illness."
Disavowing suicide as an alternative to an unhappy life, the Hemlock Society advocates "rational suicide," whose moral and legal justification springs from the indisputable right to receive or refuse medical treatment. The group carries that logic one step further: People for whom death is imminent and inevitable should have the choice of receiving fatal medical treatment that would end their lives without pain.
Humphry has encountered some opposition in his crusade, largely from the Roman Catholic Church and from fundamentalist Christians. The medical establishment, he says, "has not taken a stance for or against the Hemlock Society." But some opposition has come from within the right-to-die movement itself. In 1981, Concern for Dying condemned Let Me Die Before I Wake because of the potential for abuse of active euthanasia. The Hemlock Society is tolerated but not supported by the mainstream right-to-die organizations; the SRD's Rouse described the relationship as "peaceful coexistence."
In nine years, the Hemlock Society has grown from 3 to 30,000 members. Run out of its national headquarters in Eugene, Oregon, it now includes 51 local chapters that conduct briefings, produce videos, and publish newsletters. At first, the Hemlock Society, like Concern, eschewed legislation. But now the chapters take active political roles in trying to enact the society's pet piece of legislation: the Death with Dignity Act.
The act is relatively simple. It would legalize living wills that request active euthanasia under certain conditions: The patient must suffer from a terminal disease and in all likelihood have no more than six months to live, and at least two physicians must confirm this prognosis independently. After the diagnosis, the patient must recertify in writing his or her wish to die, with two disinterested witnesses, unrelated to the patient, present. Any medical personnel administering aid in dying could do so with impunity.
Ideally, people would make such living wills before falling ill. But under the proposed law, those who had not done so prior to the terminal diagnosis could, after two weeks, make a similar written directive. Humphry says these safeguards ensure that any action would not be a rash, split-second decision made in a moment of desperation and depression.
While the six-month deadline was admittedly drawn arbitrarily, the logic behind the rest of this legislation is compelling. Competent people can make living wills requesting that their lives not be prolonged artificially when they are incompetent and feeling no pain. It only follows that people can choose to end exceedingly painful lives that are near their natural end anyway. For many people in final stages of terminal illnesses, life is a constant burden. And for those who feel they and their families truly have nothing to gain by hanging on for a few more weeks, this is an avenue of exit that should remain open.
As with other right-to-die issues, California has been a bellwether state for active euthanasia. In 1988 a drive to place the Death with Dignity Act on the ballot fell 100,000 signatures short. Legislative efforts are still underway in California, as well as in Washington and Oregon.
Legislation is clearly not the only answer for the conflicting segments of the right-to-die movement. Only a uniform set of laws covering living wills and aid in dying would provide adequate protection of the right to refuse treatment (and to end life prematurely in the case of terminal illnesses) for everyone. But no national legislation is pending, and existing state laws on living wills and passive euthanasia vary widely. No state permits active euthanasia, and none seems ready to do so.
A bold Supreme Court decision articulating a constitutional right to die and granting families the authority to remove life support from hopelessly comatose relatives would prevent future Nancy Cruzan scenarios. An unambiguous judicial sanction of passive euthanasia would also encourage legal protection of the practice in states where none exists. But the Rehnquist Court has displayed little proclivity for broad decisions upholding individual liberties. More likely, the Court will rule for the Cruzans on narrow procedural grounds.
Even if the Court were to issue a broad decision, relying on enlightened legislators and judges to ensure dignified deaths may not be wise. As the SRD's Rouse says, "Laws don't always mesh with reality." It would be impossible to make a law that provides for every medical possibility. The alternative is to "create a climate of opinion"—a phrase all the right-to-die leaders use—conducive to the practice of euthanasia. By discouraging legal complaints and prosecution, such a climate would protect the right to die even when the law does not.
With regard to passive euthanasia, this is a done deal. The vast majority of doctors and hospital officials don't hesitate to withdraw life support from patients who appear to be in permanent comas. The wrath that Missouri has incurred from the medical, legal, and religious communities over the Cruzan case shows just how strongly a wide spectrum of opinion favors passive euthanasia.
The climate for active euthanasia is less favorable. And the Hemlock Society would do best to make its argument purely on the basis of individual choice. Medical, legal, and religious endorsements of active euthanasia as sound and ethical policy are welcome, but they are not necessary. The development of attitudes that respect the rights of individuals to choose how to approach their final days (and ultimately their deaths) is far more important. The only place for the law is in distinguishing between assisted suicide and murder by confirming the patient's consent.
Society has a general interest in keeping its members alive. For the terminally ill, however, the choice is not between life and death, but between a good death and a bad death. Assisted suicide is a humane and compassionate alternative to months of unmitigated misery that inexorably end in death.
"About two million people die each year, 80 percent of them in hospitals," says Rouse. "Of those, 80 percent die as a result of someone's decision." Someone—usually a doctor, in consultation with family members—decides to end treatment or forgo extraordinary measures. That someone, wherever possible, should be the afflicted individual. Whether protected by living-will laws or a sensitive climate of opinion, the decision should be made without interference from the government.
Daniel Gross is a reporter-researcher at The New Republic.
This article originally appeared in print under the headline "Don't Block the Exit".