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 s
uccumbs. 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, th
e 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.”
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