AFTER MOST SUICIDES, friends and family may feel guilt because they could not prevent the death. Billie Press felt guilty that she could not help her father kill himself. After most suicides, friends and family grieve because their loved one chose to die. Billie grieved because her father wanted to end his life but couldn’t. After most suicides, friends and family believe their loved one died too soon. Billie believed her father died too late. In most suicides the tragedy is that someone died an “unnatural” death; for Billie the tragedy was that her father died a “natural” death.
When Billie’s father, Bill, retired as head proofreader of the New York Times at eighty, he could look back on a full life. He had worked on newspapers for more than fifty years. A well-read man, he was fond of quoting Shakespeare and had an old-fashioned, courtly manner of speaking. He loved to sing—in the shower, in the car, or with the barbershop quartet of Times employees he had organized. After his retirement he moved in with his eldest daughter, Billie, a child development specialist, and her family in a Boston suburb. He read books, watched television, and worked in the garden. He joined a Golden Age club and went on excursions to museums and the theater. “He was so gallant,” Billie, who was named for her father, told me. “He was one of the only men in the club, and on trips he always allowed all the women onto the bus first. By the time he got on, the only seats left were in the back, and his guts would get jounced up until his stomach hurt.”
Although Bill had had a heart attack when he was fifty-eight, at a checkup at age seventy-five his doctor had marveled at what excellent shape he was in. But now his eyesight, hearing, and memory grew weaker. Cooking on the gas stove, he couldn’t see well enough to tell when the flame was low; bending over for a closer look, he often singed his eyebrows. Scissors and tape would disappear, and when his daughter asked him where they were, Bill could never remember where he had left them. “His physical condition declined,” recalled Billie, “but he still had a wonderful brain and a marvelous sense of humor.” Although he was often lonely, Bill worked to keep up his spirits. One day his teenage granddaughter asked, “Poppy, isn’t it terrible to be old?” Bill shook his head. “Oh, no,” he said. “Not when you live with people you love.”
At the age of eighty-five, the night before his granddaughter’s wedding, Bill had a stroke and a heart attack. After six months of rehabilitation he was hopeful of a complete recovery when a second stroke left him paralyzed on his right side, unable to walk, and incontinent. Although he wanted to come home to live, his daughter and son-in-law could not afford round-the-clock nursing care. After much discussion and with great reluctance, Bill was moved from a cozy bedroom in his daughter’s house to a cramped, drab room in a local nursing home.
Although the nursing home had a good reputation, it proved to be a torment. Unable to shift position or to move in any way, Bill was wholly dependent on the staff. But the staff rarely attended to his needs, and he soon developed bedsores. “I’d come over every day after work, and my father would be lying in his own feces,” said Billie. “I’d clean his bottom, wiping off the shit they’d left.” But things were no better at either of the two nursing homes they tried next. “What really makes me angry is that when my father went into a nursing home at age eighty-five, he had every tooth in his head. But they never brushed his teeth. In two years his teeth rotted and fell out one by one. Finally he could eat nothing but gruel—my father, with teeth like a horse, who at age eighty could eat McIntosh apples.” Billie shook her head angrily. “You know that line from Shakespeare—‘sans teeth, sans eyes, sans everything’? My father got like that.”
Finally they found a home that provided acceptable care, but a series of small strokes left Bill increasingly immobile. He had no control over the left side of his face, and saliva dripped from a corner of his mouth. “Am I leaking?” he would nervously ask. Bill also suffered excruciating pain from osteoarthritis. “They gave him only three aspirin every four hours, and for three hours he’d be okay, but the last hour he was in agony,” said Billie. “He kept telling me that they didn’t control the pain.” Perhaps even more harrowing was the lack of stimulation, the sheer numb routine of his days. Roused from bed each morning, Bill was strapped into a wheelchair and left on his own, face to the wall. When his position grew painful, he was unable to shift himself, and unless he shouted, aides checked on him only once every four hours. Most of the other nursing home residents were mentally as well as physically impaired, so although Bill’s mind was sharp, there was no one to communicate with. It was all the more frustrating for him to be aware of his situation, yet powerless to change it. “My dad kept saying, ‘I must have done something very bad in my life to deserve this,’” recalled Billie.
One day Bill, ever the scholar, said to his son-in-law with a sad smile, “Why can’t I shuffle off this mortal coil?” He had occasionally joked about suicide; now he told Billie that he was serious about wanting to end his life, but he had no access to pills, no gun, no rope, and he could hardly jump out the window or walk off the roof when he couldn’t even shift position in his wheelchair. He fantasized about ripping his bedsheet into strips, knotting them into a rope, and hanging himself from the door. When he told Billie of his plan, she tried to change the subject. But in the following weeks Bill continued to bring up suicide. “I would hold his hand, and we would weep when he talked about it,” Billie told me. One day he looked up at his daughter. “Sweetheart, can’t you bring me the means for my demise?” he begged her in his characteristic, elegant manner of speech. Each night Billie lay in bed unable to sleep. “All I thought about was Dad,” she said. “I loved him so much, and I hated to see him miserable. I felt he was entitled to end his life, and I knew that if I were in his position, I would want to die, too. I was determined that somehow I would help him. But how would I get the pills? How would I give them to him? She discussed it with her husband, who feared that she would be arrested for aiding and abetting a suicide, and pointed out that even if she was acquitted, her teaching license would almost certainly be revoked. When she told her father that if she helped him she might lose her job, he was adamant. “Sweetheart, you mustn’t do it then,” he said. “I must suffer to the end.”
As his condition steadily declined, her father continued to say wistfully that he wished he could end his life, although he knew it was impossible. The nursing home staff did little more than keep him alive. “They never put on his glasses or his hearing aid,” Billie said. “I bought him a radio, but they wouldn’t tune it for him, so he just sat there with static crackling, unable to see or hear.” Gradually, he lost even his ability to talk. Said Billie, “Like an autistic child, he could just repeat the sounds he heard—my brilliant father, who had been head proofreader at the New York Times—he’d just rock and babble.” When she visited, it took a great effort to get him to recognize her: “I’d get in front of him and take his hands and say, ‘Daddy, Daddy, it’s me. It’s me.’”
Each time she saw her father, he was worse. “In the last year there was some mercy, because with each small stroke he was more out of it, and eventually he was no longer aware of what he was going through.” When Billie visited, she would wheel her father outside, and they would sit in the sun. “I’d always bring him bananas. He loved bananas, which were one of the few things he could eat by himself. I’d peel the banana, and he was just able to hold it in his one good hand.” She talked to her father, but only rarely was she able to understand a word he said. “He looked terrible,” she said, “so shrunken and wasted.” One day Billie wheeled her father into town. She left him for a moment outside a variety store while she ran across the street to run an errand. Her father sat in his wheelchair, silent, impassive. When Billie came back a few minutes later, the owner of the store was standing angrily over her father. “How could you leave him here, lady?” he said. “He’s scaring all the customers away.”
One month before his ninetieth birthday, Bill got pneumonia, slipped into a coma, and died. “It was such a relief,” Billie recalled. “My father had been suffering so much, and now he’d finally escaped.” It was almost three years after he’d first asked his daughter to help him commit suicide. When I met her more than a decade later, she still wrestled with her frustration at not having been able to help him die, and she found it difficult to talk about his death without bursting into tears.
Her father’s prolonged death also made Billie think hard about her own future. She worried that one day, like her father, she might be hopelessly debilitated and want to die but be unable to do anything about it. “I am scared of going my father’s route,” she said firmly. “I don’t want to repeat what my father went through.” A few years after her father’s death, she began to read books and attend conferences on the right to die with dignity. She joined the Hemlock Society, a national organization advocating the legalization of voluntary euthanasia for the terminally or incurably ill. “I think the worst thing that could happen in life would be to lose the ability to take one’s own life,” she told me. “I can’t imagine killing myself—ever—but it is such a comfort just to know that I have that option. For me the bottom line is that people should have choices. And when the quality of life is gone—whether because of terminal illness or extreme age—one of the choices should be the option of leaving this life. And if, like my father, one wants to but is unable to carry it out himself, one should be allowed to have help. To die a less painful death is a human right.” She rapped the table with her knuckles for emphasis. “Why did my father have to go on suffering for two and a half more years when he wanted so much to end it?”
In those cultures in which death is accepted as a natural part of life, the image of Bill Press strapped into his wheelchair, face to the wall, wanting to end his life but unable to, might seem absurd. They would consider his daughter’s desire to help him end his suffering not as a sin or a crime but as a sign of respect. In many primitive societies, including some in which the act is otherwise taboo, suicide is common in the case of extreme age or incurable illness. Anthropologist Paul Bohannan’s study of six tribes in Nigeria, Kenya, and Uganda found that all of them considered suicide evil except for people who were hopelessly ill. “Among the Karens of Burma,” wrote anthropologist Edward Westermarck, “if a man has some incurable or painful disease, he says in a matter-of-fact way that he will hang himself, and he does as he says.” Although their religion forbids suicide, it was common in India for Hindus suffering from leprosy or other incurable ailments to bury or drown themselves with appropriate religious rites. When an elderly Aymara Indian of Bolivia is terminally ill, friends and relatives keep a death vigil by her side. The invalid may ask for help, in which case the family withholds food and drink until she succumbs. Studies suggest that such deaths are caused not by starvation but by the will to die.
In Western civilization the concepts of a “right to die” and of “death with dignity” are also venerable. The word euthanasia, in fact, is derived from the Greek words eu, meaning “well,” and thanatos, meaning “death.” In ancient Greece it meant just that: a good or easy death. “Thus was he blessed with an easy death and such a one as he had always longed for,” wrote Suetonius of Caesar Augustus. “For almost always on hearing that any one had died swiftly and painlessly, he prayed that he and his might have a like euthanasia, for that was the term he was wont to use.” For the Greeks, of course, a good death was often achieved by suicide. Even philosophers who generally frowned on suicide felt that killing oneself to escape intractable pain or hopeless illness was not only excusable but honorable. Plato, who condemned suicide when motivated by sloth or cowardice, admitted that “if any man labour of an incurable disease, he may dispatch himself, if it be to his good.” Pliny the Elder believed suicide was justifiable when one suffered from gallstones, stomach pains, or “diseases of the head.” The Stoic Musonius said, “Just as a landlord who has not received his rent, pulls down the doors, removes the rafters, and fills up the well, so I seem to be driven out of this little body when nature, which has let it to me, takes away, one by one, eyes and ears, hands and feet. I will not, therefore, delay longer, but will cheerfully depart as from a banquet.” The most eloquent classical spokesman on the subject, quoted by right-to-die advocates through the centuries, was Seneca:
I will not relinquish old age if it leaves my better part intact. But if it begins to shake my mind, if it tears out its faculties one by one, if it leaves me not life but breath, I will depart from the putrid or tottering edifice. I will not escape by death from disease as long as it may be healed, and leaves my mind unimpaired. I will not raise my hand against myself on account of pain, for so to die is to be conquered. But if I know that I will suffer for ever, I will depart, not through fear of the pain itself, but because it prevents all for which I would live.
Such sentiments were often met with sympathy by classical physicians. In his essay “The Arts,” Hippocrates, the father of modern medicine, wrote that the physician was required to “do away with the sufferings of the sick, to lessen the violence of their diseases, and to refuse to treat those who are overwhelmed by their diseases, realizing that in such cases medicine is powerless.” Physicians who believed a case was hopeless routinely suggested suicide and often supplied the lethal drugs with which to accomplish it.
During the Middle Ages and the Renaissance, when suicide was perceived as the worst of sins, terminal illness was often accepted as a mitigating factor. Charles Moore, an eighteenth-century English clergyman who penned a six-hundred-page attack on suicide, conceded that “the most excusable cause seems to be an emaciated body; when a man labours under the tortures of an incurable disorder, and seems to live only to be a burden to himself and his friends.” As medical treatment became increasingly sophisticated, scientists and philosophers debated the responsibility of doctors to such patients. “I esteem it the office of a physician not only to restore health, but to mitigate pain and dolors,” wrote Francis Bacon, “and not only when such mitigation may conduce to recovery, but when it may serve to make a fair and easy passage.” Benjamin Franklin, like Bacon, was fascinated by life-prolonging technology but deplored painful, extended deaths. “We have very great pity for an animal if we see it in agonies and death throes,” he observed. “We put it out of its misery no matter how noble the animal.” In 1798 in Medical Histories and Reflections, British physician John Ferriar cautioned against overweening devotion to duty. The physician, he wrote, “should not torment his patient with unavailing attempts to stimulate the dissolving system, from the idle vanity of prolonging the flutter of the pulse for a few more vibrations. . . . When things come to the last and the act of dissolution is imminent . . . he should be left undisturbed.”
Over the following century, with the development of analgesics and anesthetics that could not only relieve the suffering of dying patients but also hasten death, there were appeals for more radical measures. In an essay entitled “Euthanasia,” published in England in 1872, S. D. Williams claimed that “in cases of incurable and painful illness the doctors should be allowed, with the patient’s consent, and after taking all necessary safeguards, to administer so strong an anaesthetic as to render all future anaesthetics superfluous; in short, there should be a sort of legalized suicide by proxy.” In 1906 a bill proposing legalization of euthanasia for incurable sufferers who wished to die was introduced into the Ohio legislature. Though the bill was rejected, it triggered intense debate. Many protested that such a law would be an invitation to people who wanted to get rid of burdensome relatives, to fortune hunters who wished to hasten an inheritance, and to physicians who wished to disguise their mistakes. A New York Times editorial compared the practice of euthanasia to “practices of savages in all parts of the world.” In 1935 such savages as H. G. Wells, George Bernard Shaw, Julian Huxley, and A. A. Milne became founding members of the Voluntary Euthanasia Society in London. “Vast numbers of human beings are doomed to end their earthly existence by a lingering, painful, and often agonising form of death,” said founding president C. Killick Millard, a physician. “Voluntary euthanasia should be legalised for adults suffering from an incurable, fatal, painful disease.” In 1936 a bill sponsored by the society that would allow terminally ill people to apply for euthanasia was defeated in Parliament. The following year, as the debate reached a crescendo, G. K. Chesterton wrote, “Some are proposing what is called euthanasia; at present only a proposal for killing those who are a nuisance to themselves; but soon to be applied to those who are a nuisance to other people.”
Chesterton’s acerbic prophecy was already being fulfilled in Germany, where discussions of humanitarian euthanasia similar to those in Great Britain and the United States had been raised earlier in the century. In 1920, in their book The Permission to Destroy Life Unworthy of Life, psychiatrist Alfred Hoche and attorney Karl Binding introduced the concept of lebensunwertes Leben—“life unworthy of life.” These distinguished professors argued that there were situations in which killing was consistent with medical ethics. Those who suffered from brain damage, retardation, and certain psychiatric illnesses were already “mentally dead,” and ending their lives was not murder but “an allowable, useful act.” This line of reasoning was adapted and further twisted by the Nazis. When they took power in 1933, one of the first laws they enacted was compulsory sterilization of people with hereditary illnesses. It was only the beginning. What the Nazis called “euthanasia” was mass murder, decreed by Hitler—an admirer of Hoche and Binding’s book—and carried out by prominent German physicians and psychiatrists. None of the victims were voluntary; none, in fact, were aware of what awaited them as they were shipped to one of six “liquidation institutions.” From September 1939, when the program began, to August 1941, when it ended in response to public criticism by German clergymen, approximately one hundred thousand mentally and physically handicapped German men, women, and children were put to death. Not long afterward, of course, the Nazis began applying their mass murder techniques to millions of Jews.
Gradually, the meaning of the word euthanasia had changed. In ancient Greece it simply referred to a good death, whatever the cause. By the end of the nineteenth century it referred to the taking of life to end suffering. By the end of World War II it had come to mean the taking of life without permission. Since then the word has been avoided by many right-to-die advocates who prefer phrases like self-deliverance, accelerated death, death by design, hastened death, self-termination, elective death, and the final freedom.
Whatever terminology is used, however, the last several decades have seen extraordinary developments in the debate on euthanasia and the right to die. This is in large part because the nature of old age and illness has dramatically changed. In 1900, the average life expectancy in America was forty-seven. By 2005, it was seventy-eight. In 1900, the three leading causes of death were pneumonia and influenza, tuberculosis, and diarrhea, for all of which cures have since been found. (Pneumonia, once known as “the old man’s friend” for bringing a peaceful death to many elderly sufferers, is now routinely treated with antibiotics.) Today, half of all deaths are due to heart disease, while one-fifth are caused by cancer. Respirators, heart-lung machines, intravenous feeding systems, heart bypasses and transplants, pacemakers, and sophisticated antibiotics have enabled many to live longer, more productive lives, but these technological advances have been a mixed blessing. “For every illness, there is some procedure that can delay the moment of death,” physician Morris Abram, who chaired a presidential panel on medical ethics, has observed. “The question is: For how long, at what cost, at what pain, at what suffering?” In 1900, most Americans died at home; nine of ten now die in hospitals or nursing homes. “The classical deathbed scene, with its loving partings and solemn last words, is practically a thing of the past,” wrote the late ethicist Joseph Fletcher. “In its stead is a sedated, comatose, betubed object, manipulated and subconscious, if not subhuman.” Asked Fletcher, “Where can we draw the line between prolonging a patient’s life and prolonging his dying?”
Right-to-die advocates worry that physicians may be ill-equipped to draw that line. Doctors have traditionally been trained to regard preservation of life as their highest goal. In doing so, they may ignore death and dying. “I do not remember a single mention of it in the medical school curriculum,” writes Marcia Angell, a physician and former editor of the New England Journal of Medicine. “It was as though dying were a medical failure and thus too shameful to be discussed. As doctors, we were to succeed, not fail, and success was measured by our ability to stave off death.” The Hippocratic oath, once a staple of medical school graduation ceremonies, says in part, “I will give no deadly medicine to anyone if asked nor suggest any such counsel.” Although the oath is rarely pledged these days, it decorates the wall of many a physician’s office, and doctors are, for the most part, still conditioned to preserve life with unquestioning allegiance. One oncologist vows, “I’ll treat my patients as long as they’re still wiggling; that’s my job.” Some people worry that doctors’ dedication to life at any and all cost—reinforced by fear of malpractice suits—may blind them to considerations of the quality of that life. At a hearing called by the Senate Special Committee on Aging, Warren Reich of the Kennedy Institute of Ethics at Georgetown University said, “The terminal patient may desperately want rest, peace, and dignity, yet he may receive only infusions, transfusions, a machine, and a team of experts busily occupied with his pulmonary functions but not with him as a person.” Such myopia often leads to miraculous recoveries—but sometimes to unintentionally sadistic scenes: a man suffering from terminal cancer, down to sixty pounds, was resuscitated fifty-two times in one month though he repeatedly begged, “For God’s sake, please just let me go.”
An increasing number of people have realized that they don’t want their life to end this way, that there indeed may be fates worse than death. They propose that the quality of a life may be as important as its quantity. “The dignity starts with . . . choice,” says a character in Whose Life Is It Anyway?, a play by Brian Clark about an artist paralyzed from the neck down who asks to be released from the hospital and allowed to die. “Without it, it is degrading because technology has taken over from human will. My Lord, if I cannot be a man, I do not wish to be a medical achievement.” Joseph Fletcher wrote, “We are discovering that saving life is not always saving people. And that death may not always be an enemy to be fought off, but sometimes a friend to be helped and invited.” Some people suggest that in their use of life-support systems, doctors may be prolonging not life but death. It is commonplace to hear elderly people say, “I don’t fear death, but I fear dying.” One terminally ill seventy-eight-year-old, who was intubated and connected to life-support systems despite repeated requests to be left alone to die, switched off his own ventilator during the night. He left a final message for his attending physician: “Death is not the enemy, doctor. Inhumanity is.”
Such scenes have become increasingly rare over the past few decades with the growing acceptance of passive euthanasia—a concept pithily and poetically described by nineteenth-century poet Arthur Hugh Clough, who wrote, “Thou shalt not kill; but need’st not strive / Officiously to keep alive.” It was a concept with which few Americans were familiar until 1975, when, a few weeks after turning twenty-one, a New Jersey woman named Karen Ann Quinlan swallowed a number of tranquilizers before drinking several gin and tonics with some friends at a local tavern, whereupon she fell to the floor, unconscious. Rushed to the hospital, she was given oxygen and put on a respirator, but she went into a coma.
Her parents, devout Catholics, kept constant vigil over their daughter. Every examining doctor agreed that Karen had suffered irreversible brain damage and had no hope of recovery. After three months the Quinlans, with the support of their parish priest, asked the doctors to disconnect the respirator and let their daughter “pass into the hands of the Lord.” When the doctors refused, the Quinlans went to court, seeking permission to withdraw the respirator and allow their daughter to die “with grace and dignity.” No American court had ever authorized the withdrawal of life-support equipment. The Quinlans’ lawyer argued that Karen had a constitutional right to die and that keeping her alive “after the dignity, beauty, promise, and meaning of earthly life have vanished” constituted cruel and unusual punishment. A court-appointed guardian for Karen insisted that removal of the respirator would be an act of homicide and a violation of both the law and the medical code of ethics. A lawyer for the doctors claimed that no court could determine whether Karen might still recover.
The superior court judge ruled against the Quinlans, but the New Jersey Supreme Court reversed the decision on appeal, observing that “ultimately, there comes a point at which the individual’s rights overcome the state’s interests.” On May 17, 1976, Karen’s respirator was turned off. However, she did not die. She lived in what neurologists call a “persistent vegetative state” in a New Jersey nursing home. Fed a combination of high-calorie nutrients and antibiotics through a nasogastric tube, her 70-pound body (she had weighed 120 before her coma) lay curled in a fetal position. Nurses turned her every two hours to prevent bedsores. Her father visited Karen each morning on his way to work; her mother visited several times a week, and a radio in her room played twenty-four hours a day. On her birthdays her family held a bedside mass, and cards arrived from all over the world. But Karen remained completely unaware of the outside world. She died of pneumonia in 1985, ten years after she had lapsed into a coma.
The image of Quinlan in that irreversible coma imprinted itself onto the national consciousness, personalizing an issue that was easy to ignore in the abstract. Many people realized that they didn’t want to “end up like Karen Quinlan.” They argued that choices about end-of-life care should be made by the patient or the patient’s family rather than by doctors, signaling a move away from the paternalism, in which all-powerful physicians withheld information and made unilateral treatment decisions, that had dominated medicine for so long. In a 1950 Gallup poll, 36 percent of Americans believed doctors should be permitted to stop treatment at the request of a dying patient. By 1984 the figure had grown to 73 percent. Doctors got the message. That same year, in an article in the New England Journal of Medicine, a group of prominent physicians suggested guidelines for the treatment of hopelessly ill patients. “Basic to our considerations are two important precepts: the patient’s role in decision making is paramount, and a decrease in aggressive treatment of the hopelessly ill patient is advisable when such treatment would only prolong a difficult and uncomfortable process of dying.” About patients who, like Quinlan, are in a persistent vegetative state, they wrote, “It is morally justifiable to withhold antibiotics and artificial nutrition and hydration, as well as other forms of life-sustaining treatment, allowing the patient to die.” According to a study reported in the Journal of the American Medical Association in 1985, doctors issued DNR (do not resuscitate) orders three times as often as they had ten or twenty years earlier. A 1988 poll of the American Medical Association found that eight of ten members favored withdrawal of life-support systems from hopelessly ill or irreversibly comatose patients if the patients or their families requested it. For the most part, the Church grudgingly made its peace with passive euthanasia. Pope John Paul II, while condemning euthanasia in a 1980 Vatican declaration, said, “When inevitable death is imminent in spite of the means used, it is permitted in conscience to take the decision to refuse forms of treatment that would only secure a precarious and burdensome prolongation of life.” (Twenty-five years later, as he lay dying of heart failure and septic shock in his simply furnished bedroom in the Vatican, John Paul II declined to return to the hospital for more aggressive treatment, choosing to let nature take its course.)
The sea change in attitude following the Quinlan case was reflected in a series of court decisions that established the right of patients or their families to withdraw life-sustaining treatments. In January 1985, five months before Quinlan’s death, the New Jersey Supreme Court ruled that feeding tubes, like respirators, could be withdrawn from a terminally ill patient when requested by the patient or the patient’s guardian. In 1990, the Cruzan case—in which the family of a comatose twenty-five-year-old woman sought to have her feeding tube removed—reached the United States Supreme Court, the first right-to-die case to do so. Although its decision recognized a “constitutionally protected liberty interest in refusing unwanted medical treatment” and ruled that feeding tubes constitute medical treatment and could be withdrawn, the court essentially left such decisions up to individual states. Laws vary from state to state, however, and court rulings have been contradictory. Doctors have been sued, and in some cases arrested, for withdrawing life support, as well as for not withdrawing life support. With no clear guidance from the law, it is hardly surprising that physicians are apprehensive about making the life-and-death decisions they are confronted with daily. Most hospitals have hired staff lawyers to give legal counsel on right-to-die cases; many also have ethics committees that act as sounding boards and help review treatment decisions; a few employ in-house philosophers. The vast majority of cases never reach the courts. In these “negotiated deaths,” doctors and hospital administrators meet with the patient’s family to discuss comatose or terminally ill cases and whether, when, and how to withdraw life-support equipment—or to refrain from starting it in the first place. (Decisions must, however, frequently be made in emergency settings where extended consultation or philosophical deliberation is impossible, and many hospitals lack defined procedures for recording the wishes of dying patients.) The American Hospital Association estimates that 70 percent of the six thousand or so deaths that occur in this country each day are in some way timed or arranged.
In an attempt to ensure that their wishes concerning end-of-life care are respected, a growing number of Americans have signed living wills, in which they specify the conditions under which they would prefer not to be kept alive by life-sustaining technology, or a health care proxy, in which they assign another person to make their medical decisions in the event of incompetency. In 1991, in the wake of the Cruzan decision, the federal government enacted the Patient Self-Determination Act, which required that hospitals and nursing homes inform patients and their families of their right to sign such documents. By 1992, all fifty states had legalized an advance directive of some kind, theoretically enabling patients or their families to refuse the sort of protracted treatment Quinlan had received. Fewer than one in five Americans, however, have signed an advance directive, and those who have often find that such documents may be ignored in the hubbub of emergency rooms. A 1995 survey revealed that 66 percent of physicians believed there was nothing wrong with overriding a patient’s advance directive. In another survey, 70 percent of physicians said they would like to leave a living will with their own doctors, while 65 percent said they would not obey a living will with which they disagreed. “I’ve talked to physicians who say that if they are working in the emergency room and in the pocket of a patient who comes in they find a duly executed living will, they will take it out and throw it in the wastebasket,” says a philosophy professor who leads hospital discussion groups on medical ethics. Small wonder that a study of some nine thousand terminally ill patients found that those who had signed living wills, health-care proxies, or DNRs were just as likely to be resuscitated as those who hadn’t. In many cases, their doctors were unaware of these preferences; in some cases, they simply ignored them.
That the issue of passive euthanasia is far from resolved became painfully apparent in 2005, when the case of Terri Schiavo reopened the national debate over when and how medical treatment can be withdrawn. A twenty-six-year-old insurance company clerk whose heart had stopped briefly one February night in 1990 because of an undiagnosed potassium deficiency, Schiavo had been in a persistent vegetative state for eight years when her husband went to court for permission to remove the feeding tube that kept her alive.
In the Quinlan and Cruzan cases, family members were united in wanting life-sustaining treatment withdrawn. In the case of Terri Schiavo, however, the family was divided. Although his wife had left no written directive, Michael Schiavo maintained that Terri had told him several times that she would not want life-prolonging measures. He requested that her feeding tube be removed. Though doctors testified that their daughter had suffered irreversible brain damage and was incapable of thought or emotion, Terri Schiavo’s parents, Robert and Mary Schindler, insisted that she was responsive to their voices and might improve with therapy. They wanted the feeding tube kept in place. (A patient in a persistent vegetative state may appear to smile or grimace spontaneously, but neurologists say these are involuntary reflexes, not responses to specific stimuli.) The judge accepted Michael Schiavo’s testimony, ruled that Terri would not have wanted to be kept alive by artificial means, and, since Florida law gives spouses primacy in making decisions for incapacitated patients, ordered the feeding tube removed.
Thus began what one medical ethicist described as “the most extensively litigated right-to-die case in the history of the United States,” a seven-year battle in which Schiavo’s parents fought to protect what they called their daughter’s right to life, while her husband fought to protect what he called his wife’s right to die. The Schindlers’ cause was taken up by religious conservatives and abortion opponents who saw the Schiavo case as part of the wider right-to-life battle. Michael Schiavo’s cause was taken up by right-to-die advocates who saw three decades of legal rulings in jeopardy.
After years of litigation in Florida state courts, during which time Terri Schiavo’s feeding tube was ordered removed and reinserted twice, the case came to a boil in the spring of 2005, when, prodded by conservative lobbyists, Congress attempted to intervene, setting off a furious and unseemly rondo of sanctimonious sound bites (House majority leader Tom DeLay called removal of the feeding tube, variously, “murder,” “an act of medical terrorism,” and an “act of barbarism”); sub-rosa communiqués (a memo encouraging Senate Republicans to take up the cause noted “the pro-life base will be excited that the Senate is debating this important issue”); armchair doctoring (several members of Congress with medical degrees rendered their own diagnoses of Schiavo’s condition after viewing an edited, three-year-old videotape of her, whereupon a Democratic representative who is a psychiatrist accused them of “legislative malpractice”); and political grandstanding (in a backdoor strategy to block removal of the feeding tube through a law intended to protect people called to testify before Congress, a House committee issued a subpoena for Terri Schiavo).
Some nine hundred miles south, outside Woodside Hospice House in Pinellas Park, Florida, where forty-one-year-old Terri Schiavo lay in her bed, unaware that she had become a political prize in the struggle between liberals and conservatives, the scene was no less histrionic. Protesters, many of them veterans of antiabortion and stem-cell-research battles, prayed, chanted, wore tape over their mouths printed with the word life, and brandished signs (MURDER IS LEGAL IN AMERICA; YOU WOULDN’T LET A DOG DIE OF THIRST; NEXT THEY COME FOR YOU). One man blew a ram’s horn; another paraded a figure of Jesus on the crucifix up and down the block on a trailer. There were scores of arrests, several death threats, an anonymous bomb threat, a last-minute appearance by Jesse Jackson in a white limousine, and a tent city of television crews to capture it all. It might have seemed fodder for a Preston Sturges screwball comedy had the case not been so tragic, and the stakes, on both a personal and a political level, so high. That it took place during the Easter season heightened the drama. (Some right-to-life advocates referred to the unfolding events as “The Passion of Terri.”) Meanwhile, across the country, a new generation of Americans, too young to remember Karen Ann Quinlan, were having dinner-table discussions about what they would want to happen if they ended up “like Terri Schiavo.” (According to one poll, 78 percent of Americans wouldn’t wish to be kept alive in her condition; in another, 67 percent thought elected officials were trying to keep Schiavo alive more for political gain than from concern for her or for the principles involved.)
Despite Congress’s attempts to subvert the judicial process, a Florida circuit court judge, saying Congress had no jurisdiction in the matter, once again ordered the feeding tube removed. Another appeal to the Supreme Court was rejected. On March 18, the feeding tube was removed for the third time.
But what one congressman called “a national political farce” was not yet over. Although the case had already been heard by nineteen judges in six courts and had been appealed unsuccessfully to the Supreme Court three times, Republican congressional leaders hastily called Congress back from its two-week Easter recess for an emergency session in which they rushed through a special bill allowing “any parent of Theresa Marie Schiavo” to sue in federal court to keep her alive. (President Bush’s return from his Texas ranch to sign the bill was the first time in five years he had interrupted a vacation to return to the capital.) The Palm Sunday Compromise, as its supporters called it, outraged even some conservatives, who accused Congress of violating a cornerstone of constitutional philosophy by interfering with the ruling of a state court. After another legal flurry, however, the federal appeals court in Atlanta refused to order the tube reinserted. Once again, the Supreme Court declined to intervene. On the morning of March 31, 2005, nearly two weeks after the removal of her feeding tube, Terri Schiavo died. By then, the only thing on which it seemed all could agree was that nearly thirty years after the Karen Ann Quinlan case, Americans remained deeply conflicted about right-to-die issues.
The furor over Terri Schiavo surprised most right-to-die advocates, because these days, doctors routinely practice passive euthanasia in ways that go beyond withdrawal of life-support systems. They may call for a DNR or a “no code” order, in which case a dying patient will not be given “heroic measures.” They may hasten the death of a terminally ill patient by not treating an infection or by failing to prescribe antibiotics for pneumonia. Some doctors go further, into an even more hazy legal area. They may put a bottle of pills on the table of a terminally ill patient who has asked to die. “Take two if you can’t sleep,” they may say. “But don’t take them all, or they will kill you.” Some doctors may increase a patient’s intravenous dose of morphine until he stops breathing. Or they may practice “terminal sedation”—administering enough painkilling drugs to push suffering patients into unconsciousness, withholding nutrition and hydration until death occurs. The late Christiaan Barnard, the South African surgeon who in 1967 performed the first successful heart transplant, admitted that he had practiced passive euthanasia in a variety of forms for many years. “I have learned from my life in medicine that death is not always an enemy,” he wrote in Good Life/Good Death. “Often it is good medical treatment. Often it achieves what medicine cannot achieve—it stops suffering.” Many patients, however—especially in the age of managed care, which limits their choice of providers and often forces them to switch from doctor to doctor—do not have the kind of intimate relationship with their physician that allows these issues to be raised. And by the time a patient needs end-of-life care, the “family doctor” has usually been replaced by a team of specialists, often strangers to the patient.
Some right-to-die advocates claim that passive euthanasia merely means allowing people to die the way they did a century ago, before the advent of what Barnard called “rampant technology.” They believe that in some cases more direct action is necessary—that it should be legal for physicians to provide a lethal dose of medication for terminally ill patients who request it. Others suggest that physicians should be permitted to give such patients a lethal injection—what is called voluntary euthanasia. “Can doctors who remove the feeding tubes from patients in a persistent vegetative state really believe that there is a huge gulf between this, and giving the same patients an injection that will stop their hearts beating?” wrote ethicist Peter Singer in his 1994 book, Rethinking Life and Death. “Doctors may be trained in such a way that it is psychologically easier for them to do the one and not the other, but both are equally certain ways of bringing about the death of the patient.” Wrote cardiologist Thomas Preston in the Wall Street Journal, “the morphine drip is undeniably euthanasia, hidden by the cosmetics of professional tradition and language.” Joseph Fletcher has asked, “What, morally, is the difference between doing nothing to keep the patient alive and giving a fatal dose of a painkilling or other lethal drug? The intention is the same, either way. A decision not to keep a patient alive is as morally deliberate as a decision to end a life.”
Legally, however, those decisions are vastly different. While in most states it is licit in most instances to withdraw life-support systems, thirty-nine states have statutes explicitly prohibiting assisted suicide, while in six other states the practice is implicitly prohibited by common law. With or without legal sanction, people have long been helping their suffering loved ones die. In 1920, thirty-six-year-old Michigan farmer Frank Roberts was convicted of murder and sentenced to life imprisonment in solitary confinement, and with hard labor, for supplying poison to his wife, who suffered from multiple sclerosis, had previously attempted suicide by swallowing carbolic acid, and had begged to die. (The governor later commuted Roberts’s sentence and he was released from prison after three years.) In 1983, Betty Rollin helped her seventy-six-year-old mother, terminally ill and often in agony from ovarian cancer, obtain a lethal dosage of barbiturates, then sat with her while she died. A television journalist and author, Rollin described her mother’s death in Last Wish, which became a best seller and generated thousands of letters, the vast majority of them praising her act.
Despite such a change in reception, assisted suicide remains risky, although judges and juries tend to be lenient. In one recent case, Huntington Williams, a seventy-four-year-old emergency medical technician in rural Connecticut, helped his longtime friend, sixty-six-year-old John Welles, who was dying of prostate cancer, complete suicide by cleaning his revolver, carrying it outside while Welles used a walker, and giving him advice about where to aim. (Williams walked to the end of his friend’s driveway before Welles pulled the trigger.) Charged with second-degree manslaughter under a state law prohibiting assisted suicide, which carries a maximum prison sentence of ten years, Williams was given a year’s probation. The courtroom, packed with friends of the two men, burst into applause when the decision was announced. One right-to-die advocacy group, studying newspaper clippings, has estimated that the incidence of double suicides and assisted suicides involving the terminally ill has increased forty times since Frank Roberts helped his wife to die. These admittedly unscientific findings probably represent only a small fraction of the actual cases, since few come to court or surface in newspapers or books. The vast majority are carried out in secret. Says a woman who obtained a lethal dose of barbiturates for her terminally ill mother, then sat with her while she swallowed it, “What makes me sad and a little angry is that because what I did is against the law, for the rest of my life I will have to keep secret something that I feel so good about.”
But even with the help of a friend or a family member, suicide can be difficult. Lethal medications aren’t easy to obtain, and without knowledge of what constitutes a lethal dose, people can easily find themselves worse off. Other methods, such as gunshot and hanging, may be more certain to end in death, but are extraordinarily traumatic for both the protagonist and the loved ones left behind. That is why an increasing number of people believe that it should be legal for physicians, who have the technical expertise, to assist terminally ill people to take their own life. Although no physician in America has ever successfully been prosecuted for assisting a suicide, every major national medical organization in this country opposes the practice, and over the years, only a few cases of physician-assisted suicide have come to public attention. That would change in June of 1990, when an unemployed sixty-two-year-old Michigan pathologist hooked up a fifty-four-year-old English teacher from Oregon to a homemade suicide machine in the back of his 1968 Volkswagen van.
If assisted suicide advocates had had a choice, they would not likely have chosen Jack Kevorkian as the standard-bearer for their cause. A short, skinny man whose hawkish face, close-cropped white hair, and porkpie hat made him look more like a racetrack tout than the television ideal of a physician, Kevorkian had evinced a fascination with the end of life that had earned him the nickname Dr. Death long before he hooked up Janet Adkins to his suicide machine. The only son of Armenian refugees who had come to this country to escape the Turkish genocide, Kevorkian had, over his career, become increasingly marginalized by the medical profession for his controversial proposals: that lives might be saved by performing battlefield transfusions directly from corpses to wounded soldiers; that doctors might calculate the optimal time for organ harvesting by photographing the retinal blood vessels of dying patients to determine the exact moment of death; that organs be harvested from consenting death-row inmates; that medical experiments be performed on consenting death-row inmates during executions to advance our understanding of the dying process—and thereby help to avoid killing innocent animals in the name of science.
As an intern, Kevorkian had been outraged by the plight of elderly patients allowed to suffer prolonged deaths; in his thirties, he had watched his mother die slowly and painfully of bone cancer. But the primary motivation that led him to assisted suicide was his interest in medical experimentation on the dying. When he heard that physician-assisted suicide and euthanasia were widely practiced in the Netherlands, it occurred to him that patients who opt for euthanasia might be ideal subjects. In 1987, he flew to Amsterdam and met with leaders of the Dutch euthanasia movement, who found his proposal so radical they feared it might damage their cause. Kevorkian returned home, determined to perform assisted suicides himself, though his goal of experimentation on the dying would eventually fall by the wayside. He passed out business cards that read:
Jack Kevorkian, M.D.
Bioethics and Obitiatry
Special Death Counseling by Appointment Only
(Obitiatry—from the Latin obitus, “death,” and the Greek iatros, “doctor”—was a word Kevorkian had invented to describe his specialty, the treatment of death and dying.) When the oncologists to whom he distributed his cards refused to refer patients to him, he inserted classified ads in local newspapers: “Is someone in your family terminally ill? Does he or she wish to die—and with dignity? Call Physician Consultant.” Only two people called, neither of whom Kevorkian felt would make an appropriate case: a man phoning from out of state on behalf of his comatose brother, and a young woman who was clearly mentally disturbed. Kevorkian published an article in which he described his plans for suicide clinics (“obitoria”) in which terminally ill patients might be assisted to their deaths “under controlled circumstances of compassion and decorum.” When his obitoria idea failed to catch on, he decided to act on his own. Working at his kitchen table, with an electric drill, a soldering iron, and $30 worth of parts scavenged from flea markets, garage sales, and hardware stores, he built his first suicide machine: a frame of scrap aluminum, a trio of intravenous lines connected to three inverted bottles—one containing a harmless saline solution, the second sodium pentothal, and the third a mixture of succinylcholine (a muscle relaxant) and potassium chloride (a poison)—and a simple on/off switch that triggered a small electric motor salvaged from a toy car. After an article about Kevorkian and what he dubbed his Mercitron appeared in a local Michigan newspaper, he started getting calls from around the country—from reporters wanting to interview him and from suffering people wanting to use his machine.
In the fall of 1989, Janet Adkins read about Kevorkian in Newsweek. Married thirty-three years, the mother of three, an English teacher at a community college in Portland, Oregon, and a member of the Unitarian Church and of the Hemlock Society, Adkins had been diagnosed with early-stage Alzheimer’s. As medical treatments failed and her mind continued to falter, she decided that, rather than risk waiting until she was unable to make any decisions at all, she would end her life. She considered taking pills or jumping from a tall building, but feared she might botch the job. Besides, she wanted a more dignified death. After reading about Kevorkian’s machine, she asked her husband to telephone Kevorkian, who encouraged her to take part in an experimental drug trial she was considering. But the drug didn’t work, her condition deteriorated, and the following April, her husband called Kevorkian again. After reviewing Janet Adkins’s medical records, Kevorkian decided he had found his first case.
On June 1, a few days after playing tennis with one of her sons (she could still beat him but she could no longer keep score), Adkins and her husband flew to Detroit and met with Kevorkian in their room at the Red Roof Inn. Later, they went out to dinner. (In the preceding weeks, Kevorkian had frantically contacted doctors’ and dentists’ offices, funeral homes, hotels, churches, and friends, in an effort to find a site for the assisted suicide. Everyone refused him. Adkins told him that his van would be fine.) On June 4, 1990, three days after Adkins and Kevorkian had met, Kevorkian’s two sisters drove Adkins to a wooded public campground outside Detroit, where Kevorkian, who had rented a campsite, was waiting in his van. Adkins lay down on the built-in bed next to the suicide machine. The windows were draped with yellow curtains Kevorkian had sewn to give them some privacy. Kevorkian hooked up Adkins intravenously to the saline solution. At Adkins’s request, Kevorkian’s older sister, Flora, read the Twenty-third Psalm. When she was ready, Adkins pushed the switch, shutting off the saline solution and opening the adjoining line of sodium pentothal, which would put her to sleep. Adkins said, “Thank you, thank you.” Kevorkian replied, “Have a nice trip.” After one minute, a timing device triggered the flow of potassium chloride. Within six minutes Adkins was dead.
At the time, Michigan had no laws that specifically addressed assisted suicide; the act was covered under statutes prohibiting murder and manslaughter. Kevorkian was arrested and charged with first-degree murder. The charge was eventually dismissed. Over the following eight years, Kevorkian would assist in at least 130 more “medicides” (Kevorkian shorthand for “medically assisted suicides”). Some took place in parks and motels, some in the homes of friends, some in the back of Kevorkian’s rusted white VW bus. (Afterward, Kevorkian always notified the authorities and let them know where the body could be found. For convenience—and so his vehicle wouldn’t be impounded when the police arrived—he often left the corpse in a wheelchair, an explanatory note pinned to the clothing, outside a hospital door.) Some used the Mercitron, or a variation incorporating the minor improvements Kevorkian made, Rube Goldberg–fashion, over time. After Kevorkian’s medical license was suspended, and he could no longer easily obtain potassium chloride, some used a second Kevorkian creation, in which the patient released a clip on a tube to deliver carbon monoxide through a plastic mask. Over the years Kevorkian was helped in his work by a Dickensian cast of characters: his younger sister, Margo Janus, who was often behind the camera, videotaping the proceedings, until her death in 1994; Neil Nicol, a salesman of medical supplies, who had been the experimental subject when Kevorkian had first transfused blood from a corpse (a stroke victim) to a live human being (Nicol) in the sixties, and who now assisted with logistics and transportation, furnishing the carbon monoxide as well as providing his living room’s foldout sofa for the site of several Kevorkian-assisted suicides; and Geoffrey Fieger, a flamboyant local lawyer and former rock band roadie, known for winning huge settlements in medical malpractice suits, who kept his client from being convicted during an eight-year game of cat and mouse with local prosecutors determined to prevent Kevorkian from turning Michigan into what they called “the suicide capital of the world.”
The defacto manager for Kevorkian’s jury-rigged operation was an energetic older woman named Janet Good, former district manager for a company selling home permanents, active feminist, and founder of the Michigan chapter of the Hemlock Society. Good met Kevorkian in 1989 after she saw his ads, offering to help the terminally ill, in her local newspaper. “I was getting calls from all these poor, suffering people who were saying, ‘Please send me a Hemlock pill,’ “ Good recalled when I met her in 1997. “I thought Dr. Kevorkian could give me narcotics to help them out of their misery.” He couldn’t, but he told Good about his suicide machine.
Their relationship got off to a difficult start when Good’s husband, a retired police captain, refused to let their home be the scene of the Janet Adkins “medicide.” But Good soon made herself indispensible: screening applicants (“I think of them as patients, but we call them clients, so we’re not thought of as practicing medicine without a license”); getting release forms signed; scheduling assisted suicides; suggesting hotels and plane flights for out-of-town clients; and taking notes at Kevorkian’s hearings and trials. Indeed, if the Kevorkian operation could be said to have an office, it was the family room of Good’s suburban redbrick ranch house, which sat on a half-acre plot of carefully clipped lawn bordered by purple impatiens. In the shadow of a large television and a glass-fronted bookcase filled with Reader’s Digest condensed books, Kevorkian met Good almost every other day, occasionally playing hooky on the local golf course. Sitting in two well-worn pink recliners, with a jar of chocolate-covered graham crackers (Kevorkian’s favorite cookies) between them and the Goods’ spaniel at their feet on the lavender wall-to-wall carpeting, they sorted the mail Kevorkian had lugged there in a large shopping bag. (Good’s husband, who tolerated but did not smile on these proceedings, usually retreated outside to weed the garden.) The letters were divided into three piles: those thanking Kevorkian for his work (“I call them ‘the love letters’ “); those from people Kevorkian couldn’t help either because they were insufficiently sick or serious or because they were depressed; and those from potential “candidates.” Good or Kevorkian called every candidate, interviewed them, and requested their medical records. Good was also, occasionally, present at the end, when, she says, Kevorkian often wept. She explained to me, “People say, ‘It’s so macabre—you’re there when people die.’ But it’s so personal, so private, so gentle, so nonsuffering, so easy, that all you feel is calmness for the family. I admire the doctor for putting his life in jeopardy, but I admire him even more for the caring and concern he gives people in the final hours and minutes of their lives.” (Several months after I met her, Good, suffering from pancreatic cancer, was herself helped to her death in her home by the man she called “the doctor” or “Doc” or, occasionally, “my Doctor Kevorkian.”)
Even today, it would be difficult to overestimate the grip that Kevorkian had on the national imagination. His name recognition in the nineties was second only to Bill and Hillary Clinton’s. He was called a devil, a monster, a loose cannon, a lunatic, a madman, a psychopath, a sicko, a kook, a publicity hound, a vigilante, a serial killer, Jack the Ripper, the Antichrist, Doctor Arrogance, and Doctor Death. He was also called a hero, a saint, a savior, a visionary, a crusader, a prophet, a pioneer, an angel of mercy, and Doctor God. Right-to-life protesters and disability rights advocates picketed his court appearances; strangers approached him on the street to bless him or encourage him to “keep up the good work.” His critics called him callous and controlling; his “patients” said he was far more caring than the other doctors they’d encountered during their suffering. In court, family members of people Kevorkian had assisted to their deaths wore buttons that read I BACK JACK.
Kevorkian’s notoriety was doubtless reinforced by his personal eccentricity. A lifelong bachelor who lived on his pension and Social Security benefits—he never accepted payment for his services—Kevorkian subsisted largely on a diet of Velveeta-on-white-toast sandwiches, bought his threadbare clothes at the Salvation Army (he favored cardigan sweaters and clip-on ties), worked at a plywood desk on a manual typewriter purchased for $2 at a garage sale, and slept on a single mattress on the floor of his rented second-floor apartment in Royal Oak, a suburb of Detroit. He loved puns, wrote risqué limericks, was a passionate golfer, and played cards every other week with a small circle of acquaintances. (He was said to have a good poker face.) He played the flute, organ, and piano. He composed music. (In 1976, after quitting his job as a pathologist, he drove his van to Los Angeles, where he spent his meager savings on making a film—never released—based on Handel’s Messiah.) He was an amateur painter whose canvases depicted severed heads, maimed bodies, internal organs, skulls, cannibalism, and genocide. By all accounts, he was a shy, cocky, witty, vulgar, opinionated man with a profound disdain for authority. His few friends and associates admitted he could be prickly and abrasive, but said these qualities were more than compensated for by his brilliance and his courage. Kevorkian likened himself to Margaret Sanger, Sigmund Freud, Rosa Parks, Dr. Martin Luther King Jr., and the fictional Dr. Frankenstein. He showed up for a television interview dressed up in cardboard stocks, with a ball and chain on one leg, to dramatize his persecution; for a court appearance, he wore a colonial costume—tights, powdered wig, shoes with oversize buckles—to protest being tried under a centuries-old common law. He gave the family members of his early medicides gold chains engraved with a number indicating their loved one’s chronological place in the order of those he had assisted.
“The medical profession made a mistake when they ostracized me,” said Kevorkian. “I have no career anymore. This is the substitute.” Though motivated partially by revenge and partially by his love of the spotlight, he was also a principled man who believed, as he put it, that “personal autonomy is the highest right.” And his work tapped into a reservoir of genuine pain and need that conventional medicine had been unable or unwilling to deal with. Each week he received dozens of letters, phone calls, and e-mails. His waiting list eventually numbered in the hundreds. People traveled to Michigan from California, Colorado, Pennsylvania, and Massachusetts to take advantage of his services. Kevorkian did not help everyone who importuned him. He tried to weed out those with mental illnesses. He counseled many ailing people, terminally ill and otherwise, who went on to die a natural death. As his caseload grew, however, his evaluations grew more cursory, his definition of incurable increasingly flexible. In addition to patients suffering from cancer, lung disease, heart disease, and AIDS, he assisted people with multiple sclerosis, rheumatoid arthritis, osteoporosis, Parkinson’s disease, fibromyalgia, Huntington’s disease, emphysema, Crohn’s disease, quadriplegia, chronic fatigue syndrome, and “miscellaneous intense pain.” According to a Wayne State University study, 70 percent of Kevorkian’s patients were not terminally ill—that is, not predicted to die within six months—but were suffering from chronic diseases and disabilities. Indeed, some seemed not to be suffering from anything at all. In several cases, including that of a woman who had claimed she had MS, autopsies revealed no physical evidence of any disease.
Early on, Kevorkian had argued for a one-month waiting period between his first meeting with a prospective patient and the appointed death date. And in an article called “A Fail-Safe Model for Justifiable Medically-Assisted Suicide (Medicide),” he had suggested that each applicant undergo extensive consultations with a psychiatrist, a neurologist, and a priest. But these careful plans eroded under time and pressure. He often assisted people he’d barely met, like the forty-five-year-old woman with breast cancer whom he’d first encountered the previous day. Consultation was almost nonexistent, unless one counted casual conversations with a Kevorkian associate. (Kevorkian’s “psychological evaluation” of Adkins, which consisted of his assessing “her moods as well as the content and quality of her thoughts” over dinner—“There was absolutely no doubt that her mentality was intact and that she was not the least depressed over her impending death,” he concluded—was one of his more thorough examinations.) There was ample evidence that some of his cases might have benefited from further evaluation: a forty-two-year-old nurse with chronic fatigue syndrome and a history of marital difficulties and psychiatric problems; a fifty-eight-year-old woman with seemingly inexplicable pelvic pain and major depression; a forty-three-year-old with MS who was experiencing no physical pain but, according to a friend, “a lot of emotional pain,” no doubt exacerbated by the fact that her husband had recently divorced her and taken their children. Often the assisted suicides seemed arranged not for maximum thoroughness but for maximum convenience. In several instances, Kevorkian performed double assisted suicides, in which the participants had never met before their rendezvous with the doctor.
Despite Kevorkian’s slapdash methods, Michigan prosecutors seemed unable to put him behind bars. After he escaped three assisted-suicide convictions, they grew increasingly reluctant to try; it seemed no jury would convict him. Kevorkian, however, wanted to be put on trial to keep the assisted-suicide issue onstage. (He may also have wanted to keep himself onstage; his medicides were occurring so frequently that they no longer routinely made the front page.) And so he looked for a case that might force the law’s hand and propel the issue to the Supreme Court. He found Thomas Youk, a fifty-two-year-old former accountant, air force veteran, restorer of vintage cars, and amateur race-car driver, who suffered from advanced amyotrophic lateral sclerosis (ALS), a progressive neuromuscular disease for which there is no cure. Unable to move his arms or his legs, Youk was confined to a wheelchair; barely able to swallow, he was fed through a gastrostomy tube. “I don’t want to die,” he told his brother, “but I don’t want to live like this.” He found Kevorkian’s address on the Internet and dictated a letter to his wife. Kevorkian visited Youk on September 15, 1998—less than three weeks after the enactment of a revised Michigan law making assisted suicide a felony. But Kevorkian had something more than assisted suicide in mind. Because Youk couldn’t flip the switch on the suicide machine himself, Kevorkian would administer a lethal injection, thereby crossing the line from assisted suicide to euthanasia.
The following day, Kevorkian videotaped himself injecting Youk with potassium chloride. Kevorkian mailed the tape to 60 Minutes, a television newsmagazine show. On the program, acknowledging that he had helped at least 130 other people to die, Kevorkian challenged prosecutors to charge him with murder. Three days later, they did. Kevorkian, who insisted on acting as his own attorney—in order to propel the case to the Supreme Court, Kevorkian would have to lose in Michigan, which Fieger refused to help him do—tried to convince the jury that he had committed not murder but an act of mercy. The prosecutor tried to demonstrate that Kevorkian was less concerned with his patient’s well-being than with advancing a cause. Kevorkian was found guilty of second-degree murder and sentenced to ten to twenty-five years in prison.
Today, the seventy-seven-year-old Kevorkian is prisoner #284797 in the Thumb Correctional Facility, a minimum security prison in rural Michigan, where he reads, does crossword puzzles, listens to classical music, calls friends from the pay phone outside his cell, and signs an occasional autograph for a guard or a fellow inmate. In 2004, he wrote an “Open Letter to Michigan Legislators,” in which he pressed for lifting the state’s ban on capital punishment—so that condemned men could undergo medical experimentation before their deaths. He will be eligible for parole in 2007. The newspapers that only a few years earlier couldn’t get enough of him rarely mention his name, other than to note that his health is failing.
Though Kevorkian’s notoriety has faded, it is likely that had all those front-page stories on his medicides never been printed, the assisted-suicide debate would not have moved so quickly and definitively into the nation’s consciousness. Most of those who advocated its legalization argued that Kevorkian’s modus operandi demonstrated the importance of regulating the practice to protect both patients and physicians, of bringing it out into the open to ensure that no abuse occurred. Dying in the back of a VW van, homemade curtains notwithstanding, wasn’t the “death with dignity” for which they were fighting. Opponents of physician-assisted suicide said the specter of Kevorkian was a good reason never to legalize the practice. Either way, it was no longer possible to ignore the subject. And either way, support for physician-assisted suicide was rising. “When a person has a disease that cannot be cured, do you think doctors should be allowed by law to end a patient’s life by some painless means if the patient and his family request it?” asked a Gallup poll in 1947. Thirty-seven percent of respondents said yes. By 1973, that number had risen to 53 percent. By 1990, it was 65 percent; by 1996, 75 percent.
One of the most interesting aspects of the discussion has been the revelation of how frequently physician-assisted suicide takes place. Pre-Kevorkian, the practice had been underground. Yet studies repeatedly show that a great many physicians support assisted suicide for the terminally ill—and that a surprising number of them have been doing in private essentially what Kevorkian was doing so publically. A 1995 study of oncologists in Kevorkian’s home state found that 18 percent had participated in physician-assisted suicide and 4 percent in voluntary euthanasia. A 1996 study of physicians in Washington State discovered that 16 percent of respondents had been asked by patients for physician-assisted suicide or euthanasia. Of those who requested physician-assisted suicide, 24 percent received prescriptions; of those who requested euthanasia, another 24 percent received lethal injections. A 1997 New England Journal of Medicine report revealed that more than half of San Francisco Bay Area physicians treating AIDS patients had assisted at least one completed suicide. A year later, the same journal reported that when suffering patients asked for lethal prescriptions, 16 percent of doctors complied. Assistance is not limited to physicians. A 1996 survey of 852 intensive care nurses found that nearly one in five had, almost always at the request of the patient or his family members, hastened a dying patient’s death, usually by administering a high dose of morphine.
Despite these figures, many doctors who support physician-assisted suicide don’t believe it should be legalized; they say they are handling things well enough on the sly. Those who favor legalization point out that not all patients have close relationships with doctors willing to help. They argue that if physician-assisted suicide is kept secret, more people will risk putting their friends, family, and health care providers in legal jeopardy, and more people will be forced to take matters into their own hands and risk botching the job.
If Kevorkian had offered the only model of physician-assisted suicide, the course of the right-to-die movement might have been different. But in 1991, less than a year after Kevorkian had helped Janet Adkins die, another American physician admitted to helping a patient to her death. Writing in the New England Journal of Medicine, Timothy Quill, a primary care physician and former hospice medical director in Rochester, New York, described how he had given a patient with end-stage leukemia a prescription for a lethal dose of barbiturates, knowing that she would take them when she felt it was time to die. Three months later, she did. Quill explained that he was motivated not only by compassion but by his concerns about what might happen if he failed to provide the prescription. “I feared the effects of a violent death on her family,” he wrote, “the consequences of an ineffective suicide that would leave her lingering in precisely the state she dreaded so much, and the possibility that a family member would be forced to assist her, with all the legal and personal repercussions that would follow.”
If Quill’s article had been published a year or two earlier, it might have occasioned more controversy. As it was, compared with Kevorkian’s rushed and emotionally ambiguous medicides, Quill’s example seemed quite civilized. A bearded, avuncular-looking man with an impeccable résumé, Quill had been the patient’s physician for nearly eight years; he had suggested hospice and other alternatives; he had discussed the matter with her over several months. Quill believed that his assistance was a natural part of the doctor-patient relationship, in keeping with the principle of “nonabandonment,” in which physicians are ethically bound to respond to the needs and desires of their suffering patients, even—and perhaps especially—when those patients are dying. Although his essay provoked criticism from a few physicians who asserted that Quill hadn’t sufficiently assessed his patient for depression, most people—doctors and suffering patients alike—voiced support. He received more than a thousand letters, all but a handful praising what he had done. The New York Times commended his “courageous act.” A grand jury refused to indict him. Quill, pointing out that many other doctors did in secret what he had openly described, said that his only regret was that because the law criminalizes the practice, he had not been with his patient when she died.
Without Kevorkian (as a role model to avoid) or Quill (as a role model to emulate), it is difficult to imagine that, only three years after Quill had published the story of the patient he called Diane, physicians in Janet Adkins’s home state would be authorized to do what Quill had done, with the full protection of the law. In 1994, spurred by a coalition of physicians, lawyers, ethicists, and grassroots organizations, Oregon voters narrowly approved ORS 127.800-897, the Death with Dignity Act, making theirs the first state to legalize physician-assisted suicide. (Ballot initiatives including both assisted suicide and euthanasia had recently failed in California and Washington State. Some blamed the Washington failure on negative publicity from a recent Kevorkian double assisted suicide in which neither of the patients was terminally ill.) Blocked by legal measures for three years, the Oregon legislation was eventually repassed by a wider margin. It took effect in November 1997.
The Death with Dignity Act stipulates that physician-assisted suicide is available only under certain conditions: the patient must submit a written request signed by two witnesses, as well as two oral requests separated by a fifteen-day waiting period; the patient must be competent to make independent decisions about health care; there must be a “reasonable medical judgment” that the patient will die within six months of an “incurable and irreversible disease”; the diagnosis and prognosis must be confirmed by a consulting physician; the physician must present alternatives to suicide such as hospice and palliative care; and the drugs must be administered by the patient himself rather than by a doctor or a family member. In the spring of 1998, a woman in her eighties suffering from breast cancer that had recently spread to her lungs became the first person to die under the protection of the act when, surrounded by family members, under the guidance of the physician who had prescribed the lethal dose, she swallowed a mixture of barbiturates and syrup, washed it down with a glass of brandy, and quietly died.
Eight years later, perhaps the most surprising aspect of the Death with Dignity Act is how seldom it has been used. Although its opponents had predicted that if the act was passed, a flood of ailing, elderly Oregonians would take advantage of its provisions, by 2005, according to the Oregon Department of Human Services, 208 people had used the Death with Dignity Act to die. Of the some 30,000 Oregonians who die each year, about 34 complete physician-assisted suicide.
Supporters of the act point to the fact that so few people have availed themselves of it as an indication that its safeguards are working. They say that the mere knowledge that physician-assisted suicide is available keeps some people from using it; they suggest that most terminally ill patients wish not for death but for the comfort of knowing that they could end their lives on their own terms if they chose to. This is supported by data showing that more than a third of those who obtain the means to die under the act do not use them; they die of their underlying illnesses. “For many people, the simple act of asking for the prescription and getting it—having it in their hands—satisfies whatever it is that’s driving them to do this,” state epidemiologist Mel Kohn told the Oregonian. Said a seventy-nine-year-old retired country doctor dying from inoperable kidney cancer who requested and was given a lethal dose of barbiturates, “I don’t know if I’d ever take it, but I’d like to have the option.” He put the drugs in his desk drawer—where they stayed until after he had died of natural causes, his family and his hospice team at his side.
From the accounts that have emerged so far, it appears that the vast majority of Oregonians who do use the act to end their lives succeed in getting the “death with dignity” they seek. They are able to decide the manner and timing of their death, put their affairs in order, say good-bye, choose whom they’d like to be with them when they die, and in the end have experiences not unlike those peaceful (if perhaps overidealized) late-nineteenth-century deaths described by Joseph Fletcher, in which the suffering patient died at home surrounded by his intimate circle. Just as Socrates gathered his students around him when he drank his hemlock more than two thousand years earlier, dying Oregonians usually invite family and friends to be with them at the end. The people in attendance sometimes include the prescribing physician and often include volunteers from Compassion in Dying, a nonprofit group dedicated to helping terminally ill people explore their end-of-life options, that has been involved in more than 75 percent of the suicides completed under the act.
The deaths have been gentle, even sociable. (Only one person has thus far died alone—by his own choice.) A fifty-four-year-old former health care aide suffering from terminal liver cancer spent her last day packing up her belongings, calling family members to say good-bye, and compiling a memory book of words and photographs for her sister. That evening, surrounded by eighteen friends who had received hand-drawn invitations to attend her death, she sat on her bed, swallowed antinausea medication, and then drank from a Pyrex beaker of water in which a Compassion in Dying staff member had dissolved the ninety capsules of Seconal her physician had prescribed. A man dying of AIDS organized a communion service attended by sixty relatives and friends, after which he went to his bedroom with his family and his partner, said his good-byes, prayed, drank the medication, and died in his partner’s arms. A fifty-six-year-old author-sailor-songwriter swallowed his medication and drank from a pint of Southern Comfort while his son played guitar. A group of friends and relatives who had gathered outside his house lit candles when they were told that he had stopped breathing. A seventy-eight-year-old World War II veteran with end-stage pancreatic cancer died in his bed, surrounded by his wife, daughters, and nine-year-old granddaughter. Before drinking the lethal dose, he said, “If I had any more love, I’d have to keep it in Fort Knox.”
In 2000, Peggy Sutherland, a sixty-seven-year-old divorced mother of five, was told that fourteen years after smoking her last cigarette, she had lung cancer again. Over the following year, she underwent two surgeries (one lung was removed entirely), intensive chemotherapy and radiation, and seemingly never-ending rounds of CT scans, bone scans, PET scans, and MRIs. Her strength declining, her thick, dark hair gone, she tried to keep up with the opera nights and jazz concerts she loved, to attend the board meetings of her many community interests, to continue with her Friday-morning bridge group, and to visit her nine grandchildren. But as the cancer spread to the bone and ate away a rib, the pain grew so great that she had to be hospitalized several times. In August, her doctors told Sutherland she had less than six months to live. Around that time, one of her sisters was diagnosed with the same kind of cancer, and Sutherland watched her suffer a lingering death. During one of her better periods, the week before Thanksgiving, Sutherland went with her family to their cottage on the Oregon coast, where they had often gone when the children were young and their mother had taught them how to sing their favorite songs in harmony.
One morning in December, when Sutherland woke, she could hardly sit up, so intense was the pain. Rushed to the hospital, she spent three weeks tethered to tubes, a morphine pump implanted in her spine, her mind so fogged by painkillers she could barely carry on a conversation. She was coughing up blood, losing control of her bowels, and having difficulty breathing without an oxygen tank. She would never walk again. On Christmas Day, with her family around her hospital bed, she gave her grandchildren their gifts. After a desultory New Year’s Eve in the hospital with her family, she was sent home and provided with hospice care. Sutherland, who had herself worked as a hospice volunteer, knew the end was near. “She didn’t see any point to staying alive that way for another six weeks,” said her daughter Kathleen. The day after she came home she told her children that she was ready to die.
Sutherland’s children talked about her experience, as well as their own, in Compassion in Dying: Stories of Dignity and Choice (a book by Compassion in Dying president Barbara Coombs Lee from which this description is largely drawn). According to them, their mother’s decision was in keeping with her lifelong belief in independence and self-sufficiency, a resolve that had been tested when her husband of four decades had divorced her six years earlier. Indeed, that year, when Oregon’s Death with Dignity Act was first passed, she had talked approvingly about the right to choose one’s own death. A philosophy major in college, she had always valued speaking openly about difficult subjects. Over the previous months, she and her children had talked about life and death in general and about her life and death in particular. Now her children moved quickly to help their mother carry out her wishes. Her longtime internist referred Sutherland and her family to Compassion in Dying, who sent them the paperwork necessary to apply under the Death with Dignity Act and made available their team of palliative-care experts and volunteer counselors. Although her children, two of whom are physicians, supported her decision, they occasionally played devil’s advocate, raising objections just to make sure she had no second thoughts, and that if she did, she’d feel comfortable voicing them. But she remained firm.
On the morning of January 25, 2001, one year after the return of Sutherland’s cancer, her best friend, her sister, her nephew, her physician, and her five children and their spouses gathered in her apartment in Portland, overlooking the Willamette River. The previous night had been difficult. “She was waking up in these weird morphine states, half-awake and half-asleep, crying out, having bowel movements,” recalled daughter Ellen Baltus, who had slept on the floor next to her mother’s bed. Once her family had assembled, however, she seemed relaxed. “I remember feeling surprised at how clear-minded Mom seemed the morning of her death, lucid and happy,” said Baltus. Downstairs in the kitchen, a Compassion in Dying volunteer opened ninety capsules of secobarbital, a fast-acting barbiturate, and mixed them in water. Upstairs, as Peggy Sutherland had requested, passages from Shakespeare and a poem by Annie Dillard were read. “I watched her take it in, seeming so relaxed and ready,” said Baltus. “I could see in her face the relief she felt in being able to finally end the suffering.” But Sutherland remained her independent self to the end; when her son read the Twenty-third Psalm, she interrupted him partway through to insist on the King James version. Her friends and family held her and said their good-byes. When the glass containing the barbiturate was placed beside her, she drank the liquid and fell asleep. Twenty minutes later, she was dead.
Some say the Oregon Death with Dignity Act doesn’t go far enough. They point out that even when a physician is involved, assisted suicide is not always foolproof. In Oregon, although most patients die within thirty minutes of swallowing the lethal medication, in a few cases the patient has lasted as long as twenty-four hours; in one instance, a forty-two-year-old man dying of lung cancer consumed the prescribed dose, went into a coma, and woke up nearly three days later. “David said he came back to suffer like Jesus,” said his wife. “And he did.” Two weeks later, he died of natural causes.
Some also claim that the act discriminates against those people, like Tom Youk, who can’t bring hand to mouth to take the pills or who can’t swallow them or who can’t keep them down. They point to the Oregon man who applied for physician-assisted suicide, received his lethal dose in the mail, but had difficulty downing the medication; his brother-in-law had to prop up his head to enable him to drink all of it through a straw. Discussing the case, the Oregon deputy attorney general suggested that once assisted suicide is accepted, lethal injection may also need to be accepted, because the Death with Dignity Act does not provide equal access to people who cannot swallow—and may thus violate the Americans with Disabilities Act. “To confine legalized physician-assisted death to assisted suicide unfairly discriminates against patients with unrelievable suffering who resolve to end their lives but are physically unable to do so,” wrote a group of six ethicists, lawyers, and physicians, including Timothy Quill, in the New England Journal of Medicine, contending that it should be legal for doctors to bring about death in terminally ill patients, at the patient’s request, using lethal injections. Although the vast majority of doctors reject active euthanasia as a violation of medical ethics and an abuse of the doctor-patient relationship, some ethicists, as we have seen, maintain that there is no real moral distinction between physician-assisted suicide and voluntary euthanasia. They cite the case of Sigmund Freud, who suffered from cancer of the mouth for the last sixteen years of his life. Refusing painkillers so that he could continue to work with an unclouded mind, Freud made a pact with his physician, Max Schur, that when his condition became unbearable, Schur would help him die. In 1939, when the pain became so great that he was unable to read or write, and necrosis of the bone gave off an odor so foul that even his beloved chow kept his distance, Freud asked his physician to keep his promise. Schur gave him two injections of morphine, and Freud died quietly, at the age of eighty-three.
Voluntary euthanasia—actively causing a person’s death at his or her request—is against the law throughout most of the world (although that has not stopped doctors in various countries from practicing it and, like Jack Kevorkian in the case of Thomas Youk, in some cases admitting it). There is, however, one country in which euthanasia, as well as physician-assisted suicide, has been widely practiced since 1973, when a physician gave her ailing seventy-eight-year-old mother a lethal injection. Although Article 293 of the Dutch criminal code called for twelve years’ imprisonment for anyone who “takes the life of another at his or her explicit and serious request,” a Dutch court found her guilty but gave her a short, suspended sentence. Public opinion strongly supported the physician’s act. Over the following decade, a series of court cases established conditions under which physicians in the Netherlands might perform “aid-in-dying,” as it was called, without fear of prosecution. The patient must be experiencing unbearable suffering that cannot be relieved in any other way; the patient must make a voluntary, well-considered, and persistent request; the physician must consult with another physician in making the decision; the case must be reported to the coroner. In 1984, the Royal Dutch Medical Association announced its support for the practice, provided that guidelines were followed. (Physicians opposed to euthanasia split off and formed a separate medical group.) In 1993, a statute explicitly stipulated that a physician following the guidelines would not be prosecuted. In 2001, the Dutch parliament formally legalized physician-assisted suicide and euthanasia. For several decades, Dutch doctors have quietly helped more than five thousand terminally ill patients to end their lives each year—nearly 4 percent of all deaths in the Netherlands—either by providing drugs to be taken orally or, far more often, by lethal injection.
“Every patient, every human being, has the right to see his suffering as unbearable and has the right to ask a doctor for euthanasia,” says Pieter Admiraal, a Dutch anesthesiologist and author of Justifiable Euthanasia: A Manual for the Medical Profession. “Every doctor has the right to do euthanasia. And every doctor has the right to refuse to do euthanasia.” At a 1986 conference sponsored by the Hemlock Society in Washington, D.C., I heard Admiraal, a portly, bearded man who was, and is, the most well-known practitioner of euthanasia in the Netherlands, describe one of the hundreds of patients he had helped to die at his hospital in Delft. “She was twenty-four years old and she was in a nursing home,” he said. “I had a phone call from her doctor that she wanted to speak to me about euthanasia. I said that she wanted to speak to me. That’s not true. She couldn’t. She hadn’t been able to speak for a long time because she had cancer of the tongue. She couldn’t swallow, and they had put a tube in her stomach, through her skin, to feed her. That also means that she couldn’t swallow her saliva. People produce between one and two liters of saliva each day. She was a very, very nice and handsome girl, and she was sitting there, in one hand a tissue to remove continuously her saliva, and with her other hand to write down what she wanted to say to me. But I knew already what her problem was because that tumor was growing, very slowly but growing. The next step was a tracheotomy to open her trachea, to enable her to breathe if it closed. And that’s what she refused. So she wrote down that she refused this kind of tube. And she asked me to assure her that I would give her euthanasia just before she should suffocate. And I agreed, of course.
“After a few weeks she came to our hospital because the tumor was bleeding. We all thought that she would bleed to death, but she didn’t. She remained in our hospital for the next two days, and we discussed when we should do the euthanasia. It was, of course, always a group decision, never a decision on my own. We talked long with the priest, nurse, and doctor on the case. And she was writing to us or knocking her head when it was time to do it. And we agreed we should wait until the last moment because we were all there so we could do it immediately if something went wrong.
“And then two days later it proved that it was necessary to do so. First she saw her parents. Although usually the family are in the room at the moment of giving euthanasia, they refused to be there. In this case, then, the nurse, the priest, her doctor, and myself were there.
“She wrote on her paper a farewell. I kissed her and said, ‘Have a very good journey.’ And I gave her an injection and she died.
“I have two simple questions for you. I am always with my patients when they are dying, whatever the cause of their death, and if they have tongue cancer or cancer of that sort, then should not the doctor be there available to assist?
“And the second question is, if a doctor is there and he’s standing in the back of the room with his hand on his bag and watches this patient suffocate, should not this doctor be liable to prosecution?”