November of the Soul

by George Howe Colt

  Which is the greater burden? (1) To lose a 50 percent chance of six more months of life at age 87? Or (2) To lose all your savings, your home, and your career at age 55? I cannot imagine it would be morally permissible for me to ruin the rest of my partner’s life to sustain mine or to cut off my sons’ careers, impoverish them, or compromise the quality of their children’s lives simply because I wish to live a little longer. This is what leads me to believe in a duty to die.

  Financial concerns are undeniably a consideration in many right-to-die discussions. “I don’t want to be a burden to my children or my spouse” and “Please don’t let my life savings be spent on keeping me alive for a few extra weeks” are common refrains among the ailing elderly. As Lamm pointed out, the high cost of health care affects not only the individual but the entire country. One-third of the nation’s total health costs are spent on the elderly; one-third of the Medicare budget is spent on patients during their last six months of life. (Medicare and Medicaid combined account for one-fifth of the federal budget.) With the oldest of the 77 million baby boomers entering their sixties, the number of Americans sixty-five and over is projected to double over the next three decades. Elderly Americans comprise 13 percent of the population now; by 2035, they will account for 20 percent. Many economic forecasters fear that we’ll go broke long before then. If scientists continue to find cures for diseases, the financial strain will be even worse. As far back as 1984, estimating that it would have cost the federal government an extra $15 billion if Americans who died prematurely of heart disease in 1978 had lived to their full life expectancies, a Washington research group concluded that “the postponement of an individual’s death is becoming a Federal affair, and one whose implications we cannot ignore.”

  Although rationing of health care may seem unthinkable in a nation accustomed to the idea that its citizens are entitled to unlimited medical resources, nearly half of all Americans believe that dialysis and chemotherapy should be rationed at the discretion of a board of doctors and the patient’s physician. In his book Setting Limits, Daniel Callahan outlined the coming health care crisis and suggested a long-term strategy. His recommendations included restricted Medicare payments for such procedures as organ transplants, kidney dialysis, and coronary bypasses for the aged, along with limited use of feeding tubes and costly antibiotics for the elderly. Although he firmly opposes physician-assisted suicide and euthanasia, Callahan believes the elderly should be “creatively and honorably accepting aging and death, not struggling to overcome them,” and suggests that Americans learn to accept a “natural life-span” that might last until the late seventies or early eighties. “How many years do we need to have a reasonably decent life, to raise a family, to work, to love?”

  “Any sophisticated doctor would acknowledge privately that rationing on demographic characteristics when resources are tight goes on already,” Robert Binstock, a political scientist at Case Western University, has said. This informal rationing can be found in any big city hospital emergency room, “where you have to make a choice of treating a . . . baby or . . . old man and you have only so many people and so much equipment.” With increasing pressure on hospitals to control costs, such triage, he warned, could become official policy. Studies show that emergency room personnel tend to devote less time and effort to resuscitating elderly heart attack victims than they do to younger ones, that older women with breast cancer often get less treatment than they need, that hospitals tend to discharge elderly patients “sicker and quicker” than younger patients, and that the elderly are less likely to receive preventive care. “Managed care is rationing by another name,” Derek Humphry has commented. Indeed, HMOs so severely circumscribe a patient’s choice of doctor, hospital, prescription medications, and home care service that some ethicists wonder whether patients with life-threatening illnesses have enough options to make truly autonomous decisions. Insurance coverage for patients with chronic illnesses like congestive heart failure or ongoing neurological disorders is skimpy. Medicare coverage for palliative services is minimal, and its hospice benefit requires that patients be terminally ill with a prognosis of six months or less to live (a notoriously difficult determination), which virtually eliminates those dying more slowly from chronic cardiac, respiratory, or neurological diseases. An increasing number of hospices are being audited because their patients “live too long.”

  Pointing out that only 2 percent of Oregonians who end their lives under the Death with Dignity Act cite financial concerns as a factor, and that the vast majority of those who receive physician-assisted suicide are college-educated and insured, the Oregon Health Department has concluded that economic motives have not influenced the choice of assisted suicide. Yet Portland psychiatrist Gregory Hamilton, cofounder of Physicians for Compassionate Care, says those aren’t the only barometers of financial pressure. “The report entirely ignored the fact that Oregon’s rationed health plan denies payment for 171 needed services, while it fully funds assisted suicide for the poor,” he writes. “Neither did it reveal that over 38 percent of Oregon Health Plan members find barriers to obtaining mental health services.” In Maine, when an assisted suicide referendum was narrowly voted down in 2000, it became clear that options for poor people with terminal or chronic illness were severely limited. Maine offered no Medicaid hospice benefit—one of only six states not to do so—and ranked last in hospice use.

  As the number and proportion of elderly in this country soar over the next few decades, economic pressure on hospitals, Social Security, and Medicare will increase. While acknowledging the importance of the economic issue, Derek Humphry doesn’t want the right-to-die movement supported for the wrong reasons. “This is a very rich country, and it ought to be able to provide proper medical care for everybody,” he told me. “It would be deeply repugnant to us to say that people need to take their lives because there isn’t enough money to take care of them. I would fight that tooth and nail.” He shook his head. “Voluntary euthanasia is an intimate, personal, libertarian decision.” Yet in Freedom to Die, Humphry and lawyer Mary Clement, while acknowledging that it was “politically incorrect” to cite economics when arguing in favor of right-to-die legislation, write, “One must look at the realities of the increasing cost of health care in an aging society, because in the final analysis, economics, not the quest for broadened individual liberties or increased autonomy, will drive assisted suicide to the plateau of acceptable practice.” More than a few rank-and-file right-to-die advocates believe that the ends justify the means. “I believe in triage,” says a former Hemlock member. “It’s a question of national priorities. Since there’s not enough money to accommodate everyone’s needs, I don’t think the public has an obligation to keep me alive once I start becoming a drain on society.” In Common-Sense Suicide, a book advocating the right to suicide for the elderly, Doris Portwood concluded a discussion of costs: “Today, the needs of the individual and those of the social community appear to merge, in an economic sense, on the question of old-age suicide. A planned departure that serves oneself, one’s family and also the state surely is worthy of decent consideration.”

  Critics worry that if physician-assisted suicide is sanctioned, certain less privileged groups—the poor, the elderly, the disabled, and ethnic minorities—will be at particular risk in an age of medical cost-cutting, when their already limited choices may become even more constricted. “Assisted suicide and euthanasia will be practiced through the prism of social inequality and prejudice that characterizes the delivery of services in all segments of society, including health care,” concluded a 1994 report by the New York State Task Force on Life and the Law, a panel composed of lawyers, bioethicists, health care officials, and the clergy. “Those who will be most vulnerable to abuse, error or indifference are the poor, minorities, and those who are the least educated and the least empowered.” Surveys show that the elderly and members of minority groups are less likely to support physician-assisted suicide than the general population.


  Members of the disabled community have been particularly active in opposing physician-assisted suicide. The loss of autonomy that right-to-die advocates so frequently cite—the inability to feed oneself, wipe oneself, or carry out other basic daily functions without help—is intimately familiar to many disabled people who find life worthwhile. “When asked to describe the ‘indignities’ that assisted suicide would help people to avoid, proponents describe disability,” writes Diane Coleman, president of Not Dead Yet, an organization of disabled activists who oppose right-to-die legislation. Not Dead Yet, which takes its name from a skit by the British comedy troupe Monty Python, was formed in 1996 after the acquittal of Dr. Kevorkian in the assisted suicide of a forty-four-year-old woman with multiple sclerosis who had been abandoned by her husband and had lost custody of her children. The group’s goal is to alter the widespread public image of severe disability as “a fate worse than death.” Coleman, who has spinal muscular atrophy and uses a wheelchair by day and a ventilator at night, cites studies showing that pain was not the most significant motivating factor for those who sought assisted suicide under the Death with Dignity Act. “The primary issue was fear of future increased loss of bodily function and the assumption that such loss would mean loss of dignity and autonomy,” she writes. “In other words, the issue was fear and prejudice about disability.” It was this perspective that motivated many activists in wheelchairs to protest the removal of Terry Schiavo’s feeding tube. Outside Schiavo’s hospice, they shared their vigil with conservative Christians, a group with whom they might not previously have found much in common but whose deeply held beliefs, while entirely different from their own, had led to a similar anger over the devaluation of Schiavo’s life.

  But the disabled community is far from unanimous on right-to-die issues. The late attorney Andrew Batavia, a professor of public health policy, helped found a group called AUTONOMY, Inc. to counter the views of Not Dead Yet. “We argue that the disability rights–independent living movement is based fundamentally on autonomy, and people with disabilities should be allowed to make all decisions that affect their lives—including the decision to end their lives, with or without assistance,” wrote Batavia, who had been a quadriplegic since injuring his spinal cord in a car accident when he was sixteen. He argued that denying a disabled terminally ill person this autonomy was an example of just the kind of paternalism that disabled activists had fought against for years. Batavia is less certain whether the right to assisted suicide should be extended to people with incurable but nonterminal conditions, but is among those who “conclude in support of the right on the basis of compassion for people who are simply not able to adjust to their disabilities.”

  Able-bodied advocates of physician-assisted suicide insist that the disabled and other disadvantaged groups have nothing to fear. Yet over the years there has been no shortage of unsettling statements by right-to-die activists that suggest otherwise. Not long after the Euthanasia Society of America was founded in 1938, its second president, Dr. Foster Kennedy, advocated the legalization of euthanasia for “creatures born defective, whose present condition is miserable and whose future . . . hopeless.” Another supporter, Dr. Alexis Carrel, went still further: “Sentimental prejudice should not obstruct the quiet and painless disposition of incurables, criminals, and hopeless lunatics.” Testifying in favor of a euthanasia bill in the Florida state legislature in 1967, Walter Sackett, a state representative and retired physician who claimed he had assisted “hundreds” of patients to their deaths, pointed out that the state could save $5 billion over the next fifty years if “mongoloids” were permitted to succumb to the pneumonia they frequently contract. Psychiatrist Eliot Slater of Britain’s Voluntary Euthanasia Society argued that the right to voluntary euthanasia should extend to the incurably mentally ill: “If a chronically sick man dies, he ceases to be a burden on himself, on his family, on the health services and on the community.” Three years after the British psychiatrist Colin Brewer recommended the plastic-bag-and-barbiturates method of self-deliverance at the 1985 Hemlock conference, he pointed out that euthanasia could prevent a severely disabled person from being remembered as “a slobbering wreck.” Writing in Newsweek in 1992, English professor Katie Letcher Lyle described having her sixteen-year-old cat put to sleep and suggested that a lethal injection might also be the most humane treatment for a severely retarded, occasionally violent forty-year-old man of her acquaintance.

  Similarly ominous statements have been made about the elderly. Lawyer Mary Rose Barrington, a past chairman of the Voluntary Euthanasia Society, was concerned that unless people have the option of assisted suicide or euthanasia, “there can be no possibility of an older person, who is a burden to a younger person, feeling a sense of obligation to release the captive attendant from willing or unwilling bondage.” I recall being surprised at the 1985 Hemlock conference when a sixtyish woman asked, “With twenty million elderly Americans, shouldn’t the Hemlock Society take more liberal action for the elderly nonterminally ill who have lost their zest for life? Shouldn’t they at least get physicians to give some nonlethal dosages that the elderly can accumulate and use to end this life?” In The Good Euthanasia Guide 2005, citing the high rate of suicide among older Americans, Derek Humphry writes, “These type of statistics are surely telling us of the need to consider setting up responsible physician-assisted suicide for the [ailing] elderly.” Philip Nitschke, the Australian doctor who is working to develop the “peaceful pill,” has said that it should be made available to all, “including the depressed, the elderly bereaved, the troubled teen.”

  Such comments are deeply disturbing. The right to comprehensive medical treatment must be as fiercely protected as the right to refuse that treatment. Some people suggest that if we spent as much money and energy on giving the elderly reasons to stay alive as we do on developing technology to keep them alive, the euthanasia option might be less appealing. Says psychologist Richard Seiden, “It is realistic to be concerned that sanctioning suicide or self-deliverance may deter society and government from making the difficult and expensive structural changes necessary to improve the life of the sick and elderly.” At the 1985 Hemlock conference, during the panel discussion of “Medical Questions in Euthanasia,” oncologist Matthew Conolly concluded an eloquent attack on active euthanasia by saying, “My plea to the Hemlock Society is give up this goal of self-destruction. Instead, lend us your energy, your anger, your indignation, and your creativity to work with us to build up such a system of hospice care that death, however it comes, need not be feared. Is this not a nobler cause? And is this not a better way?”

  In many cultures—including most of those that encourage “thrift” suicide—the wisdom and experience of the elderly earn them respect and veneration. In America, although we strive at all costs to keep them alive, the elderly are more likely to face indifference, impatience, or scorn. “At best, the living old are treated as if they are already half dead,” wrote Robert Butler in his Pulitzer Prize–winning book, Why Survive? Being Old in America. “Many elders suffer a social death in which they are removed from the mainstream of life,” observed sociologists Jack Levin and Arnold Arluke. “They are forced by law or custom to retire, give up leadership positions in their communities and become virtual prisoners in their own homes for fear of muggers and other criminals. Increasing numbers of elders are living in age-segregated housing or nursing homes where many are drugged into dependent states.” Within a month after being robbed and assaulted in their Bronx apartment, one couple in their late seventies slashed their wrists and hanged themselves from their bedroom door. They explained in a note that though they had lived in the neighborhood for many years and didn’t want to move, “we don’t want to live in fear anymore.”

  Although suicide among adolescents receives the lion’s share of attention, the suicide rate of elderly Americans (over sixty-five) is nearly twice as high. And while the rate of elderly suicide has declined somewhat over the last fifteen
years, the elderly have accounted for the highest suicide rate for as long as such statistics have been kept. The elderly comprise 12 percent of the population but complete 18 percent of the suicides. As in all age groups, men account for the majority of deaths. (The rate of suicide among women peaks in middle age and declines after sixty.) More than three-quarters of suicides among people over sixty-five are by men, and the vast majority of those are by white men. (Men eighty-five and over are at highest risk; their rate of 54 per 100,000 is five times that of the nation as a whole.) The elderly are also less ambivalent about suicide. While for every adolescent suicide there may be as many as one hundred attempts, among those over sixty-five there are four or fewer. They tend to use more lethal methods—79 percent of elderly men use firearms. “When an old person attempts suicide,” concludes an American Psychiatric Association report, “he almost fully intends to die.”

  It is often said that youth suicide is especially tragic because teenagers have “everything to live for.” The elderly, it is implied, have “nothing to live for.” Certainly the suffering of the elderly may be more readily apparent. If loss—and one’s response to loss—is the root of depression and suicide, the high rate of elderly suicide is not surprising. For most people, old age is characterized by an inexorable accumulation of losses. They face the loss of their jobs, willingly or unwillingly, to retirement. (A disproportionate number of male suicides occur immediately following the retirement age of sixty-five.) Retirement means loss not only of occupation and identity but of income. One in ten elderly Americans has an income below the poverty line. The elderly also face loss of connection. Illness and death claim an increasing number of their family and friends. About one in three Americans over age sixty-five lives alone. In part this reflects a decrease in the strength of family ties. Thirty-five years ago a third of all Americans over sixty-five lived with their children; today, a tenth do. (In contrast, 70 percent of elderly Japanese live with a younger relative.) Not surprisingly, the elderly are more at risk for suicide if they live alone, have lost their spouse, and no longer work. In a landmark study, British epidemiologist Brian Barraclough found that 50 percent of elderly suicides lived alone, compared with only 20 percent of all older people in their communities. In 1998, among males seventy-five and over in the United States, the suicide rate for divorced men was 3.4 times, and for widowed men 2.6 times, that for married men that age. But the factor that puts them at especially high risk for suicide is loss of health. Eighty percent of Americans over sixty-five suffer from at least one chronic illness. Medical problems are a factor in 70 percent of all suicides by people over the age of sixty.