November of the Soul

by George Howe Colt

  Psychologist Robert Kastenbaum worries that talk of “respect” and “rights” is often used to camouflage our own unwillingness to respond to elderly people in need. “In general, where the ‘geriatric case’ is allowed to slip away to proper and timely death,” he says, “a younger person with similar problems would receive keen attention.” Times have not completely changed since Herbert Hendin was a young doctor, when elderly patients were referred to as “crocks” and written off as time-wasters whose cases had disappointing outcomes and little educational value. Physicians are poorly trained not just to deal with end-of-life care, but to deal with elderly patients in general, while most mental health professionals are poorly trained to deal with elderly patients. As a result, although depression remains the most common medical complaint of the elderly, most depressed older Americans go untreated. Even when they are treated, the treatment they get is not all it could be: studies show physicians typically spend less time with older patients than with younger patients. “Since the elderly depressed don’t cause much trouble, their plight has been ignored,” UCLA psychologist Gary Emery has said. “Their depressed state is often misdiagnosed by health professionals, family members, and the elderly themselves, and the symptoms dismissed as an inevitable result of the aging process. Yet severe depression can be effectively dealt with when recognized in time, and potential suicides can be averted.” University of Rochester psychiatrist Yeates Conwell suggests that depression—often undiagnosed, untreated, or dismissed as a “natural” consequence of aging—underlies two-thirds or more of all elderly suicides. And a study of 136 elderly nursing home patients found that one in four who were said to be suffering from senile dementia had severe but potentially reversible behavioral problems. “Too often the old are written off as treatable with pharmacology while younger patients get psychotherapy,” said Herbert Hendin, addressing a sparse crowd on “Suicide Among the Elderly” at an AAS conference, while across the hall a discussion of adolescent suicide was standing room only. “The heart of suicide prevention has always been and remains suicide among older people.”

  Nevertheless, while people over age sixty-five account for 18 percent of all suicides, they account for less than 3 percent of calls to suicide prevention centers. Few centers train volunteers in how to work with elderly callers, and fewer still have programs to encourage elderly clients. There are exceptions. San Francisco’s Friendship Line has for several decades operated a twenty-four-hour hotline for the elderly, as well as a program of house calls to depressed elderly clients. The Mental Health Center in Spokane, Washington, reaches out to depressed and suicidal elderly people through its Gatekeeper program, in which meter readers, utility workers, bank tellers, mail carriers, paramedics, and other community workers likely to come into casual contact with the elderly are trained to identify older adults who exhibit signs of distress. Those at risk are referred to the Center’s Clinical Case Management Program, which responds with medical and psychiatric assessments, clinical services, and respite care. Life Crisis Services, a telephone hotline program in St. Louis, has trained social work students to offer follow-up telephone counseling to depressed and possibly suicidal elderly callers.

  There are numerous changes that might decrease the rate of elderly suicide. Butler’s Why Survive? is a veritable encyclopedia of the ways we neglect and mistreat the elderly and of the steps we might take to improve their lot. The abolition of compulsory retirement ages, increased Social Security and pension benefits, safer housing, better public transportation, improved nursing-home care, and revitalized senior citizens’ programs are a few of the suggestions.

  Better pain control is another. In the past few decades, our understanding of the physiology of pain has radically expanded. In fact, palliative care specialists insist that pain management has improved so markedly that in the vast majority of cases—95 percent is the figure most often mentioned—pain can be controlled. This, of course, still leaves a great many cases in which pain can’t be relieved by even the most sophisticated methods. Moreover, the 95 percent figure assumes that patients in pain will be treated in the best hospitals with doctors trained in the latest methods of palliative care. But a great many doctors have no training whatsoever in palliative care, and a great many doctors (and patients) are unaware that these ballyhooed advances exist. Although death is the one medical event that every American will face, as of 1996, only 5 of the nation’s 126 medical schools had a required course on death and dying, and only 26 percent of 7,048 medical residency programs offered a course on end-of-life care. The Cecil Textbook of Medicine, points out Derek Humphry, devotes only 3 of its 2,300 pages to the care of the terminally ill, while Harrison’s Principles of Internal Medicine asserts, “The discovery and cure of potentially serious disease represents a far greater service to one’s patients than ministrations in the course of an incurable condition.” In a survey of 1,177 physicians who had treated more than 70,000 cancer patients during the previous six months, 76 percent reported that they didn’t know enough about palliative care to be able to control their patients’ pain.

  Small wonder, then, that despite the advances in palliative care, study after study indicates that a great many Americans die in pain. In 1997, a twelve-member committee of the Institute of Medicine reviewed various studies and found that 40 to 80 percent of patients with cancer, AIDS, and other diseases reported inadequately treated pain. In a study published in the Journal of the American Medical Association of some 9,000 terminally ill patients, more than half complained of moderate or severe pain. In a survey of 897 physicians, 86 percent felt the majority of American patients in pain were undertreated, and 49 percent rated pain control for patients in their own practice as fair, poor, or very poor. (Thirty-one percent said they would wait until their patients had only six months left to live before using maximum pain medication.) Pain is a problem even at the finest hospitals with the most advanced palliative care techniques. A study of 90 patients at Memorial Sloan-Kettering, perhaps the top cancer care center in this country, found that one in five suffered pain that could be controlled only if they lay perfectly still in bed. Two of those patients killed themselves.

  Palliative care does not, of course, consist of managing only physical symptoms. It is commonly observed that those who seek assisted suicide are motivated less by current pain than by fear of future suffering and feelings of despair, hopelessness, dependency, loss of control, and loss of dignity. Yet most physicians are even less well trained to deal with emotional suffering, and few psychiatrists are schooled in the psychological aspects of palliative care. (Indeed, few palliative care services provide ongoing psychiatric care.) Patients are not the only players in end-of-life scenarios whose anxiety about death and dying may influence their treatment. As we saw in part four, many physicians, not surprisingly, experience a sense of failure and helplessness in the face of death. In a survey of oncologists, 25 percent reported that they did not like, or want to care for, dying patients. Hendin and Foley suggest that these anxieties help explain why some doctors may use excessive measures to preserve life—while others may be more ready and willing to help bring it to an end. “Physicians who unwisely prolong the dying process and those who practice euthanasia may have more in common than they realize . . . ,” they write. “By deciding when patients die, by making death a medical decision, the physician preserves the illusion of mastery over the disease and over the feelings of helplessness that lack of control induces. The physician, not the illness, is responsible for the death. Assisting suicide and performing euthanasia become ways of dealing with the frustration of being unable to cure the disease.” Studies have shown that the less physicians know about palliative care, the more they favor assisted suicide or euthanasia. In a study of oncologists, 20 percent supported assisted suicide; after receiving palliative care training, the number dropped to 9 percent.

  Not surprisingly, patients who receive good palliative care are less likely to ask for assisted suicide. “You don’t have
to kill the patient to kill the pain,” Dame Cicely Saunders reminds us. Of some 20,000 patients cared for at St. Christopher’s Hospice in London over the years, only three inpatients and two home care patients have taken their own life (none using medication supplied by the hospice). The director of a small Dutch hospice reports that nearly all his patients who initially propose assisted suicide change their mind after being reassured that they’ll receive effective palliative care. In Oregon, an anonymous 1999 survey of physicians who had received requests for assisted suicide since the Death with Dignity Act went into effect found that in more than half of the 142 cases for which physicians supplied information, there was no further palliative care intervention of any kind. Of those who did receive such interventions, nearly half changed their mind about seeking physician-assisted suicide. A commission studying the case for euthanasia in England concluded, “If all the care were up to the standards of the best, there would be few cases in which there was even a prima facie argument for euthanasia; better alternative means of alleviating distress would almost always be available if modern techniques and human understanding and care of the patient were universally practiced.”

  Critics of physician-assisted suicide worry that legislation will obviate the incentive for physicians to become properly trained in palliative care. Indeed, until the improvements of the last several years, the Netherlands had fallen behind most other Western nations in palliative medicine and hospice care. In the United States, by contrast, while poor end-of-life care has led to increased support for physician-assisted suicide, that support has, in turn, galvanized physicians to pay more attention to end-of-life care. “Kevorkian and Humphry were a stimulus to medicine,” observes Hendin. “It’s unfortunate that it took them to frighten the medical profession into doing what it should have done long ago.” Medical organizations, foundations, and grassroots groups have sponsored programs to educate health care professionals and their patients about the care of the dying. An increasing number of medical schools are offering courses on end-of-life care, while the number of Medicare-certified hospice programs—both inpatient and home care—has grown from thirty-one in 1984 to well over two thousand. Even so, fewer than 20 percent of all dying patients in this country receive hospice care; fewer than 10 percent of Americans are even aware that hospice care exists; and many regions are underserved.

  The problem with many discussions of physician-assisted suicide and palliative care, as with most ethical debates, is that proponents of each side so often reduce them to either/or rather than both/and propositions. This frustrates Marcia Angell, who has said that the two paths “are no more mutually exclusive than good cardiologic care and the availability of heart transplantation.” In Physician-Assisted Dying, Timothy Quill and Margaret Pabst Battin call these practices “not only compatible but complementary.” They point out that the Oregon Death with Dignity Act led not only to physician-assisted suicides but also to “the highest rate of at-home deaths in the nation; high use of prescribed opioids; high referral rates to hospice programs; comprehensive statewide do-not-resuscitate policies; and a high level of public awareness of end of life options.” Quill and Battin believe that physician-assisted suicide should be one of the choices available to suffering terminally ill patients—but that care should be so good that it would only be used in rare cases. Like their opponents, they urge improvements in palliative care, social services, and access to quality medical treatment for all. “Where we proponents of legalization part company with opponents is in our belief that it is not fair or justified to postpone legal access to physician-assisted death while we await the solution of these most difficult social problems. Relief of suffering—and with it the freedom to face dying as one wishes—must be available to suffering patients now.”

  At bottom, perhaps our most important task is to change our attitudes toward the elderly, to celebrate them as valued, integral members of our culture. Although we shrink from the idea of elderly suicide and euthanasia, we encourage it by our neglect and indifference. (Cross-cultural studies demonstrate that societies in which old age brings with it respect and veneration have low rates of elderly suicide.) And if we don’t allow them the right to exit this life, we have a responsibility to make this life better for them. “Often people ask whether a human being has a right to end his life,” says Nico Speijer, a Dutch psychiatrist. “This question is incorrect. We should say rather that everyone has a right to live and we have the obligation to make it possible for everyone to live in such a way that he can be a socially integrated member of society to the maximum of his abilities.”

  In Common-Sense Suicide, Doris Portwood compared the decision of an elderly woman to end her life with the decision to leave a party before it’s over. “When an older woman leaves a social gathering—perhaps an hour after dinner and when younger guests are settling down to a game or a fresh drink—no one urges her to linger on. Someone may call a cab or offer a lift. She will receive thoughtful words during the process of departure, but no insistence on her staying. There is the assumption that she has, in fact, some good reason for going.” (Portwood, who had seen her mother and sister die slow, painful deaths while suffering from Parkinson’s disease, took a fatal overdose of Seconal in 1996, by which point her own Parkinson’s had rendered her so disabled that she had to dictate her suicide note.) This seems a sad, if understandable, equation. Certainly, the elderly guest must be allowed to leave, but her hosts have a responsibility to make the party more enjoyable so she’ll want to stay a little longer. In sum, the right to live with dignity may be as neglected as the right to die with dignity; if more emphasis were placed on the first, the second might not seem so pressing.

  As early as 500 BC, on the Greek island of Ceos, the law encouraged all inhabitants over the age of sixty to drink hemlock to make room for the next generation. (Average life expectancy at the time was less than thirty years.) In seventeenth-century Brittany, a person suffering from an incurable disease might apply to the parish priest for the Holy Stone. If the priest agreed, the family gathered, prayers were said, and the Stone was brought down upon the sufferer’s head, often by the oldest person in the village. Other than these examples, organized suicide facilitation has largely been confined to fiction. In Thomas More’s sixteenth-century fantasy Utopia, priests and magistrates helped end the lives of terminally ill citizens who wished to die; those who chose death were considered godly and virtuous, although those who refused were provided with continuing medical care. In “The Suicide Club,” a short story published in 1878, Robert Louis Stevenson described a leather and mahogany club where for an entry fee of forty pounds dissolute young men draw lots for the right to die. One member wins the right to die; another is obliged to kill him. “The trouble of suicide is removed in that way,” explains a club member. In “The Putter-to-Sleep,” a short story by Guy de Maupassant, the narrator, scanning a newspaper’s suicide statistics, thinks of all the gruesome deaths the numbers might hide. He dreams of an Institute of Voluntary Death where people might chat and gamble before they meet an “easy death.” (In 1892, several years after writing the story, de Maupassant cut his throat in an unsuccessful suicide attempt. He died in an insane asylum a year and a half later of advanced syphilis.) In Kurt Vonnegut’s short story “Welcome to the Monkey House,” suicide is encouraged as a solution to overpopulation. The World Government establishes a network of Federal Ethical Suicide Parlors staffed by six-foot virgin hostesses; people go there voluntarily to be killed painlessly while lying on a Barcalounger, listening to Muzak. Next door to each parlor is a Howard Johnson’s where one is entitled to order a last meal. In the film Soylent Green, would-be suicides go to a government building where they can watch movies with idyllic pastoral settings, listen to Beethoven’s Ninth, and be painlessly put to sleep.

  What these writers proposed in literature, some people have proposed in all seriousness. “What we want, what our grandsons, or great-grandsons will probably have, is a commodious and scientific l
ethal chamber, which shall reduce to a minimum the physical terrors and inconveniences of suicide, both for the patient and for his family and friends,” wrote William Archer, the British drama critic, in 1893. Alfred Nobel, inventor of dynamite and patron of the Nobel Prize, envisioned a “suicide institute” on the Riviera where sufferers could be put to sleep with a view of the Mediterranean, to the strains of beautiful music played by a first-class orchestra. In 1919, Binet-Sanglé, a Sorbonne physician, proposed the establishment of public euthanasia parlors where one could choose from electrocution, poison, gases, narcotics, and other lethal methods to attain an “individually styled” death. Jo Roman, a New York artist stricken with breast cancer who took a fatal overdose in 1979 at age sixty-two, drew the blueprints for an Exit House that would assure nonintervention, or assistance if necessary, in a “gentle” suicide for anyone over forty. Roman’s imagination placed Exit House next to the United Nations in New York and equipped it with library, lounge, roof garden, swimming pool, public relations department, and well-tended gardens where “small safe animals such as chipmunks and squirrels go about their business of living and dying.” Although Jack Kevorkian described his “obitoria” in much less fanciful terms, his goal was the same: a place where people in pain could go to a painless death.