November of the Soul

by George Howe Colt

  Still, it is clear that over the last thirty years, the Dutch guidelines have been stretched. “Given legal sanction, euthanasia, intended originally for the exceptional case, has become an accepted way of dealing with serious or terminal illness in the Netherlands,” writes Hendin. Supporters of the Dutch system suggest that if assisted suicide and euthanasia were not available, a great many physically suffering elderly people would commit suicide on their own, in less peaceful, less certain ways—and perhaps end up even worse off. They point out with pride that since the early 1980s, the suicide rate of those over fifty in the Netherlands has fallen by a third—a drop that can likely be ascribed to the fact that older suicidal patients are now asking for euthanasia instead. Maintaining that if any significant proportion of assisted suicide or euthanasia cases had been counted as suicides, the rate would have risen, Hendin told a congressional subcommittee, “It may be more than ironic to describe euthanasia as the Dutch cure for suicide.”

  Hendin is among those who worry that conditions for abuse are even more ripe in the United States, where patient-doctor ties tend to be less intimate than in the Netherlands and access to health care is not equally available to all. Yet there is little evidence to suggest that Oregon has progressed down the slippery slope. Before the Death with Dignity Act was passed, its opponents predicted that overwhelming numbers of sickly Oregonians would kill themselves with lethal dosages provided by physicians. They further predicted an influx of suffering people from out of state—an Oregon Trail of the infirm—to take advantage of the act. Neither scenario has materialized. Through 2004, 208 people—about 30 of the some 30,000 Oregon residents who die each year—had ended their lives with the help of the Death with Dignity Act. (As far as can be determined, only one of them moved to Oregon for the specific reason of taking up residence and thereby gaining access to the act’s provisions.) The numbers have fluctuated from a low of 16 in 1998, the first year in which the act was implemented, to a high of 42 in 2003. (At least one supporter has suggested that the law may be too restrictive. “I am concerned that so few people are requesting it,” said Marcia Angell, the former editor of the New England Journal of Medicine. “It seems to me that more would do it. The purpose of a law is to be used, not to sit there on the books.”) Opponents of the act also feared that its passage would trigger a domino effect, in which other states would quickly follow suit. Yet that hasn’t happened; similar ballot measures have subsequently failed in Michigan and Maine, and a legislative effort in Hawaii was narrowly defeated. Indeed, since the Oregon law was passed in 1994, ten state legislatures have passed statutes making assisted suicide illegal.

  While the Death with Dignity Act seems to have been a success thus far, it is difficult to know how well it is really working because so few details have been made available. Although physicians must report assisted-suicide cases to the Oregon Department of Human Services (ODHS), they are required only to check off a list indicating that the requirements—the fifteen-day waiting period, the consultation with another physician, and so on—have been met. They are not asked to provide significant medical information or to describe the patient’s reasons for requesting assisted suicide. The ODHS data, therefore, offer only a few basic demographic details: that most patients have cancer, but a few suffer from AIDS or ALS; that their mean age is just under seventy (somewhat younger than Oregonians dying naturally of the same causes); that they are more likely to be women; that they are twice as likely to be divorced as married; that they are likely to be college-educated; that they are overwhelmingly likely to be white.

  The scant additional information that has been made public by families or physicians suggests to a few critics that the situation may be more complicated than it seems. The first case, in the spring of 1998, was described by Compassion in Dying as an illustration of how well the Oregon law works; opponents of physician-assisted suicide have described it as an example of why the act is to be feared. Although she had metastatic breast cancer and was enrolled in a hospice program, the patient, a woman in her mideighties, wasn’t bedridden; in fact, although no longer able to do her aerobic exercises or to garden, she was mobile enough to do her own housekeeping. Nor was she in great pain. (Unlike the Dutch law, Oregon’s Death with Dignity Act does not require patients to be experiencing “unbearable suffering.”) Her physician, about to switch jobs, referred her to an internist well versed in care of the dying. He was unwilling to assist her suicide, on the grounds that she was depressed. The patient’s family, therefore, contacted Compassion in Dying, and after several “lengthy phone calls,” the group’s senior medical adviser determined that in fact the patient was not depressed and referred her to a physician willing to help. That physician, who later said that the cancer had spread to the patient’s lungs and made breathing difficult, referred her to a pulmonary specialist and to a psychiatrist. The psychiatrist conducted an evaluation and, like the specialist, concluded that she was not depressed and met the qualifications for physician-assisted suicide. The physician to whom she had been referred by Compassion in Dying provided a lethal dose of barbiturates, and two and a half weeks after meeting the patient for the first time, he was at her bedside, along with members of her family, when she died.

  Opponents of the Death with Dignity Act raised several concerns. Before the law was passed, assisted suicide activists had assured Oregonians that patients would make their decisions in collaboration with a doctor with whom they had a long-term relationship. Yet when the physician to whom her primary doctor had referred her refused to assist her suicide, his opinion, apparently, was ignored. Indeed, in more than half of the forty-two cases for which information was available in the first two years of the act, the first physician seen by the patient did not agree to assist in the suicide. In some cases, patients had to go to a third or fourth physician until they found a willing helper. None of the physicians who refused to assist were contacted by ODHS, apparently on the assumption that their decisions had been based on a philosophical opposition to physician-assisted suicide and not on reservations about a particular case. (Under the act, physicians are not required to assist in a patient’s death; they may refer to another doctor. While 51 percent of Oregon physicians support the act, only 34 percent say they would be willing to write the lethal prescription.) Like a child who, told no by one parent, immediately importunes the other, under the Oregon law, people can simply shop for a physician until they find one who will say yes. “If I get rebuffed by one doctor, I can go to another” is the way Barbara Coombs Lee, a lawyer and former nurse who is executive director of Compassion in Dying, put it. Assisted-suicide applicants are likely to find a physician who will say yes through Lee’s organization. In the first fifteen assisted-suicide cases, fourteen different doctors wrote the lethal prescriptions; eleven of the fourteen doctors were associated with Compassion in Dying.

  Opponents of physician-assisted suicide wonder whether all options are being fully explored. The physician who assisted in the first case later wrote in a medical journal that the patient was worried primarily about anticipated suffering, a concern that stemmed from having seen her husband experience a lingering death. Although Oregon physicians who agree to assist a suicide are required to point out alternatives such as palliative care and hospice, they are not required to be knowledgeable in those areas, nor are they required to refer the patient to a physician who is. “Under these conditions,” write Herbert Hendin and Kathleen Foley, a neurologist at Memorial Sloan-Kettering Cancer Center in New York City, “offering a patient palliative care becomes a legal regulation to be met, rather than an integral part of an effort to relieve the patient’s suffering so that a hastened death does not seem like the only alternative.” Indeed, according to a taped interview, the assisting physician in the first case had outlined the alternatives—hospice, chemotherapy, hormone therapy—in three sentences. Advocates point out that two of the state’s largest health providers have hired ombudsmen to make certain that patients who request physic
ian-assisted suicide don’t lose access to other end-of-life treatment options. They also point out that, like the first patient, most of those who receive physician-assisted suicide under the act—86 percent, in fact—were enrolled in hospice. In any case, those not already receiving hospice care are offered it. Although the Oregon Hospice Association initially opposed the Death with Dignity Law, Oregon hospices now work directly with Compassion in Dying—“The fears that we had about not enough safeguards are unfounded,” announced the executive director of the Oregon Hospice Association—and hospice patients who seek assisted suicide are told that their wishes will be respected. Indeed, hospice nurses often attend the “hastened deaths” of their patients. Depending on one’s point of view, this has been interpreted either as an example of how well the act works or as a mile marker on the slippery slope. In any event, hospice use in Oregon has increased 32 percent since the law went into effect.

  Critics of the act are also concerned that those who request assisted suicide may not be sufficiently evaluated for depression. (The psychiatrist who signed off on the first case met with the patient only once.) They point out that anxiety and depression are common in patients with life-threatening illnesses. William Breitbart, a physician who has studied requests for physician-assisted suicide among patients at Memorial Sloan-Kettering, estimates that 25 percent of cancer patients have severe depression; by the disease’s end stage, the number has jumped to 77 percent. Studies of terminally ill patients and ambulatory AIDS patients have found that the most significant predictor of support for physician-assisted suicide is depression and psychological distress. (In the first five years of the Death with Dignity Act, 20 percent of requests for assisted suicide came from depressed patients; all of these applications were rejected.) Oregon law, however, requires psychiatric consultation only in cases in which the physician believes the patient might be suffering from a psychiatric disorder “causing impaired judgment”; depression per se is not sufficient. (Critics wonder how many cases there may be in which depression does not impair judgment.) As we have seen, studies have repeatedly shown that physicians are not well trained to diagnose depression in patients of any age. Depression is even harder to diagnose in older patients, when its symptoms so often resemble the inevitable symptoms of aging; when patients are physically impaired, the diagnosis is more difficult still. In a survey of Oregon psychiatrists, only 6 percent felt confident that, unless they had a long-term relationship with the patient, they could determine in a single visit whether he or she was competent to make a decision about suicide. In the first six years of the act, 18 percent of assisted suicide cases were referred for psychiatric evaluation. In the absence of such evaluation, some psychiatrists wonder whether the complex influences that factor into a decision to end one’s life—whether one is terminally ill or not—can fully be explored. They suggest that, as with suicidal people in general, a terminally ill patient’s wish to die can also be a cry for help, and physicians inexperienced in treating suicidal patients may fail to hear this ambivalence.

  In a state of ambivalence, a patient may be especially susceptible to outside influence. Under the Death with Dignity Act, at least one of the two witnesses who must sign a patient’s written request for assisted suicide cannot be a relative, an heir, or the owner or operator of a health care facility where the patient is receiving treatment. This may help prevent the kind of overt manipulation depicted in Hollywood B-movie melodramas, but it cannot prevent subtler influences of which the protagonists themselves may be unaware and which may, as Kass suggests, be unavoidable in any end-of-life medical situations. (Based on physician interviews in the 2000 ODHS report, 63 percent of patients—compared to 26 percent in 1999 and 12 percent in 1998—expressed concerns about being a burden to their families.) In another Oregon case that provoked controversy, an eighty-five-year-old widow, terminally ill with stomach cancer and experiencing increasing dementia, wanted the option of assisted suicide in case her pain or the indignity of losing control of her bodily functions became unbearable. When her physician referred her to a hospice program, the patient (already enrolled in hospice) and her daughter, a retired nurse who had traveled from Arizona to care for her mother, requested a new physician. The second physician deemed her competent and agreed to participate. According to protocol at Kaiser Permanente, a psychiatric consultation was arranged. Concluding that the patient “did not seem to be explicitly pushing for assisted suicide” and lacked “the very high level of capacity to weigh options about it,” the psychiatrist found her ineligible for assisted suicide. He noted that the patient seemed to accept his assessment but that her daughter became angry. He arranged a second consultation, with a psychologist, who observed that the patient’s “choices may be influenced by her family’s wishes, and that her daughter, Erika, may be somewhat coercive,” but nevertheless felt the patient was capable of making her own decision. After meeting with the patient, the medical director of Kaiser Permanente and a palliative care specialist concurred. The patient was given a prescription for a lethal dose of barbiturates. Five weeks later, with her family nearby, the patient took the pills and died.

  Although even its opponents admit that there have been no Kevorkianesque abuses under the Death with Dignity Act, they worry that if physician-assisted suicide is allowed, it will, eventually, inevitably, affect certain more vulnerable populations. In primitive tribes elderly suicide has often been accepted, even encouraged, when a person outlived his or her usefulness or during times of extreme hardship and food shortage. The ancient Scythians, for instance, considered it an honor to take their own lives when they became too feeble to keep up with the nomadic lifestyle, saving the tribe the guilt and trouble of killing them. Sociologists call this economic suicide or thrift suicide. Such deaths, however, were often a blend of suicide and murder, in which the elderly had to make a choice between killing themselves or being killed. Of the Massegetae, Herodotus observed, “They have one way only of determining the appropriate time to die, namely this: when a man is very old, all his relatives give a party and include him in a general sacrifice of cattle; then they boil the flesh and eat it. This they consider to be the best sort of death.” The Tschuktschi of northern Siberia designated a relative or friend to strangle or stab an old man whose usefulness was over (elderly women remained valuable as midwives or menials); the nomadic Kalmuck Tartars abandoned their sick and lame with provisions in small huts on the banks of rivers; aged Hottentots were served lavish feasts before being abandoned in the wilderness; feeble Ethiopians allowed themselves to be tied to wild bulls and trampled to death; the Congolese jumped up and down on their elderly until they were dead; the Amboyna ate their failing relatives. Well into the twentieth century, in many Eskimo tribes, in time of famine and hardship, the elderly might walk off and freeze to death, hang themselves, or allow themselves to be walled up in an igloo and abandoned.

  Such suicides, a sort of self-regulating mechanism for tribal survival in which the population was kept within the limits of the food supply, were often misunderstood by Westerners. The perhaps apocryphal story is told of some missionaries among an Eskimo tribe who discovered this practice and condemned it harshly as a sin against God. The Eskimos were impressed by this argument, and the missionaries departed, promising to come back in a few years to see whether their potential converts were keeping the faith. When they returned, there were no Eskimos left. The obedient tribe had died out, gradually killed off by the imbalance of too many people and too little food.

  Some ethicists and demographers believe that the ingredients for such a scenario may soon exist in the United States. And although they do not suggest that we abandon our elderly in igloos, tie them to bulls, or jump up and down on them, they have suggested that they may have a similar “duty” to move on. In 1984, Colorado governor Richard Lamm, referring to the financial and ethical implications of this country’s growing medical technology, said, “Like leaves which fall off a tree, forming the humus in which other plants can
grow, we’ve got a duty to die and get out of the way with all of our machines and artificial hearts, so that our kids can build a reasonable life.” Lamm’s comment, delivered to a meeting of Colorado health lawyers, triggered an uproar. (“Aged Are Told to Drop Dead,” screamed the headline in the New York Daily News.) Many people were outraged, some called for Lamm’s resignation, and one sixty-eight-year-old lobbyist who represented elderly interests likened the forty-eight-year-old Lamm to Hitler. Of the nearly three thousand letters Lamm received, however, the majority praised him for confronting the issue. Meanwhile, Lamm sought to clarify his remarks. “The time is not far off when there will be a direct conflict between the health of the individual and the health of the society,” he wrote in the New Republic. “We cannot afford all the medical miracles that the profession stands ready to give, and choices will have to be made about the distribution of limited medical resources. Technological immortality is running into fiscal reality.” (Several years later, Lamm would provide Derek Humphry with an admiring jacket-copy quote for Final Exit.) Thirteen years after Lamm spoke out, philosopher John Hardwig, quoting Lamm approvingly in the Hastings Center Report, suggested that “our technological sophistication coupled with a commitment to our loved ones” obligates us to refuse life-sustaining treatment when there is no hope of recovery.