When Barbara Stewart’s doctor told her that multiple sclerosis was causing the numbness in her feet, she knew what she had to do.
The disease would attack her nervous system, causing her to lose feeling and control of her muscles. If she was lucky, the symptoms would be mild and then disappear. They might come and go for years, possibly stripping her of her balance, speech and sight. The disease might kill her in four or five years, or she could linger bedridden and depressed for decades before drawing her last breath.
When Barbara returned to her Woodinville home that afternoon, her mind was made up. If having MS meant giving up her work at the zoo, the hikes, her books, romps with her pets and outings with her family, the answer was clear.
“It’s very simple,” she told her husband, Bob. “As long as the quality of my life is unaffected, I am happy to go on. And when it becomes affected, then I don’t want to do this anymore.”
“I thought that was pretty extreme,” he recalls. “But I dismissed it as something that would change as her condition changed. I figured that as she deteriorated, she would adjust and say, ‘Well this is better than being dead.’”
But Barbara never wavered from her decision to commit suicide. Bob tried to talk her out of it; he coaxed her into submitting to counseling and chemotherapy, even though she thought efforts beyond relieving the symptoms were “just silly.”
“She knew she would get to a point when the quality of her life would be totally destroyed and she would be completely dependent on others and unable to affect her own end,” Bob says.
A little more than a year after the diagnosis, Bob discovered Barbara’s first suicide attempt. He performed CPR and called paramedics who kept her alive until the drugs could be purged from her system. But the doctors and chemotherapy couldn’t cure her disease, and Bob and the psychiatrists couldn’t change her mind.
“She always came back to me and said, ‘I want to do something about it while I still have the ability, because I know nobody will help me later,’” recalls Bob.
Barbara was 35 years old in 1989, when, alone in her home, she took a few dozen sleeping pills and pulled a plastic bag over her head. On her 13th suicide attempt, Barbara Stewart made her goal.
Today Bob Stewart is one of the staunchest supporters of an expanding national movement to give people more control over the ends of their lives. In the state of Washington, voters will be asked in November to take a stand on “death with dignity.” Initiative 119, if passed, would expand the conditions for terminating medical treatment and would leap beyond other states’ right-to-die laws by legalizing physician-assisted suicide for the terminally ill.
Should the dying be allowed to control the time and conditions of their deaths? It’s a conundrum few of our grandparents had to face. While theologians debated the bounds between life and the hereafter, for the medical profession the transition from life to death was readily distinguished.
Over the last 30 years, however, medical technology increasingly has blurred that boundary. For millions of Americans, the thought of old age evokes a nightmare of months—or years—of institutionalized quasi-life supported artificially by machines.
In June 1990, the U.S. Supreme Court held for the first time that the Constitution protects an individual’s right to refuse life-sustaining treatment, including tube feeding and hydration. That same month, retired Michigan pathologist Dr. Jack Kevorkian sent a rocket through the American psyche when he hooked a woman in the early stages of Alzheimer’s disease to a homemade suicide machine and watched her press a button to dump poison into her veins and die.
Before the Portland, Ore., woman’s death, few people publicly discussed the concept of physician-assisted suicide. Almost overnight, Kevorkian’s suicide machine and the right to die was “Topic A” at board meetings, espresso stands and truck stop diners. In December, Kevorkian was charged in a Michigan court with Adkins’ murder, but later prosecutors dropped all charges, further fueling the assisted-suicide debate.
At its essence, the idea of a doctor helping to end a patient’s life pits humanism’s emphasis on personal autonomy and quality of life against the Judea-Christian prohibition against suicide. Many religious people believe the dying shouldn’t be forced to submit to heroic medical treatment. But they cringe at the suggestion that life should be taken before it has run its natural course.
While opinions are mixed over the general “right to die,” at the University of Washington medical ethicists and hospital administrators question the wisdom of physician-assisted suicide. “In Western culture, the philosophy of personal autonomy has reached the apex of importance and may be coming into conflict with community values, observes Dr. Thomas McCormick, a UW medical ethicist who counsels terminally ill patients, their families and the people who care for them.
McCormick, along with most physicians’ groups, supports many of the aims of Washington’s so-called “Death with Dignity” initiative. Among other things, I-119 would broaden Washington’s Natural Death Act to give legal force to “advance directives.” These living wills allow, under some cases, withdrawal of hydration and tube feeding from patients in a non-reversible coma or persistent vegetative state.
But the medical community’s support breaks down over a clause that would allow physicians, under some strict conditions, to give “medical service to end the life of a conscious and mentally competent qualified patient, in a dignified, painless and humane manner.”
“I will give no deadly medicine to anyone if asked, nor suggest any such counsel,” declared the Greek physician Hippocrates around 400 B.C. in an oath that still underlies the ethic of Western medical practice. But Hippocrates also pledged to do the patient no harm, which many contend is exactly the case when a life is prolonged beyond a body’s capacity to sustain itself.
Dr. Jack Leversee, an associate professor of family medicine in the UW School of Medicine, says he believes the meaning of the oath should be reconsidered in light of modern technology and medical reality. Advances in medical technology over the last few decades have muddled definitions of life and death, contends Leversee, who stresses that he doesn’t speak for his department or for the University.
“Life can be defined narrowly as the presence of a heartbeat and some respiratory activity, both of which can be artificially supported,” Leversee says. “But patients’ definition of life often includes the presence of some higher brain function and the ability to interact in some meaningful way with their loved ones or their environment.”
For those who take the broader view of life, “death is no longer the most feared element of the dying process,” Leversee contends. For some, the thought of dying is much less distressing than facing the possibility of depleting their life’s savings for treatment they may not want or being kept alive in a vegetative state.
Under Washington law, people who end their lives are forced to do so alone and unaided to avoid subjecting their loved ones to possible felony prosecution. And then there is the fear of pain. For most conditions, pain can be controlled. But for certain cancers, pain control requires so much narcotic that patients may be unable to talk or interact with others.
“Some patients are so fearful of what’s ahead of them when they have a terminal disease—that they are going downhill and don’t want to suffer and don’t want their families to suffer—they might ask their physician for some means by which they could commit suicide. Then, in case things go badly, they have an out, but many never take it,” says Leversee.
There are times when a physician may knowingly assist death. Treatment for pain can shorten the life of a terminal cancer patient, McCormick acknowledges. “But that is an indirect consequence of providing comfort to the dying patient. It changes the nature of medicine when the doctor becomes an agent of death.”
This is the position staked out by the state’s major physicians’ groups and the American Medical Association. They are quite hesitant to embrace a fundamental change in the definition of medical care.
At the hospitals operated by the UW—University of Washington Medical Center (UWMC) and Harborview Medical Center—60 percent of the patients who physicians expect to die, do so with “do not attempt resuscitation” orders in their medical files.
Recognizing that patients fear invasive, expensive treatment over which they may have no control, UWMC Medical Director Eric Larson says, “Everything should be open for discussion. The key is to discuss these issues when people are not in crisis, so you can incorporate the patient’s values into these kinds of decisions.”
Larson, a 1977 UW graduate, worries that if physicians start helping suicide attempts, patients may lose trust in their doctors’ traditional role of doing whatever is necessary to save them. Larson agrees, however, with initiative supporters who argue that patients now may lack faith in doctors who refuse to honor their wishes to die with dignity.
Ethics Professor McCormick worries about a potentially more dangerous result of physician-assisted suicide. In this decade cost-control issues have led to difficulty receiving comprehensive care in a few health organizations. The same urge to economize could prompt some physicians to counsel patients to consider avoiding the pain and suffering of terminal disease, he says.
Another problem with aiding suicide is defining “terminal.” Just as the line seems fuzzy between life and death, so is the separation between terminal and curable disease. Like other areas of science, medicine is lunging into new frontiers like columns of tanks pushing back the lines of a tiring enemy’s defenses.
Some brain tumors considered inoperable a few years ago can be safely eliminated. Genetically engineered drugs can stimulate the body to replace vital immune system cells destroyed by radiation treatment for cancer.
With medicine in such a state of flux, Larson worries that physicians may misdiagnose some conditions as terminal. Ignorance of emerging treatments could lead doctors to aid the suicides of patients whose illnesses might have been cured.
The initiative drafters say they anticipated these concerns and drew up conditions to prevent abuses. Physician-assisted suicide would only be available when requested voluntarily by a mentally competent patient. That person must have been certified by two physicians to be terminally ill and within six months of death. Family members and other third parties could not authorize physician-assisted death, nor could patients make the request part of a living will to be acted upon years later.
Physicians would not be forced to honor the requests, but under the proposal those who were unwilling would be required to transfer the patient to a physician without such reservations.
Even so, Larson worries that subtle pressure may be exerted by family members for the patient to “get it over with” and avoid the often tremendous expense that accompanies end-of-life medical care.
Even though it is illegal, many physicians concede that they know colleagues who have helped patients commit suicide. But fear—of losing their licenses and of lawsuits—has kept all but a few from publicly discussing these cases.
One Rochester, N.Y. physician recently broke the taboo. He published a letter in the New England Journal of Medicine earlier this year that struck a sympathetic chord with many physicians, who responded that indeed there may be circumstances that justify the act.
Dr. Timothy Quill told how he had provided barbiturates to a young leukemia patient he had known for several years. He also advised her on how she could get directions for committing suicide from the Hemlock Society, a national euthanasia support group. His patient already had decided that a 25 percent chance of cure wasn’t worth the suffering she believed would result from chemotherapy, radiation and bone marrow transplants. At first Quill was distressed that his patient would give up without a fight, but in the end he did his best to make sure her suicide was successful.
“I wonder how many families and physicians secretly help patients over the edge into death in the face of such severe suffering. I wonder how many severely ill or dying patients secretly take their lives, dying alone in despair,” Quill wrote.
Many physicians who believe they should be able to help terminal patients end their suffering look to the long relationship between Quill and his patient and conclude, “This is how it should be done.”
Family Medicine Professor Leversee says that before he would consider assisting a suicide, he would want to know that person well so he could be sure the patient was making a rational decision.
Barbara Stewart had stuck by her decision to commit suicide throughout the four years after her diagnosis. Though her husband had been shocked when Barbara first talked of suicide, he finally was persuaded that it was in her best interest.
“If I had known what it would be like for her, I would have made sure she was successful on her first attempt,” says Bob Stewart. “Suicide is messy; it’s hard on families, but it happens.”
To the opponents of the initiative, the aid-in-dying section forms a “slippery slope” leading to impersonal clinics that specialize in euthanasia as a treatment option for terminal disease. The fantasy of the film Soylent Green, where one character checks into a euthanasia clinic and dies to the strains of Beethoven’s “Pastoral” Symphony, may soon become reality, they warn.
Clearly all terminally ill patients who want help with suicide will not have long established relationships with physicians who are willing to nudge them over the brink. And if this requirement is even informally applied to assisted death, observers say there will be a whole class of people who are denied aid in dying—the poor and medically indigent who already live shorter, less healthy lives from inadequate medical care.
If 1-119 passes, it undoubtedly will be challenged in the courts, predicts former Washington State Supreme Court Chief Justice Keith Callow, a 1952 UW law school graduate and author of the majority opinion in the last right-to-die case heard by that court. Callow prefers an initiative without the aid-in-dying language. He worries that physician-assisted suicide turns fresh legal sod, leading to several years of uncertainty.
But Callow also has personal reasons that make him reluctant to perpetuate the status quo. One of his elderly relatives died after spending two years unconscious in technological limbo. Then there was an old friend who committed suicide to preserve his savings for a cause more dear than his life. Callow’s neighbor, former UW English Professor Lawrence Zillman, decided that once his wife had died and his health began to fail, there were better uses for his money than paying nursing home and medical bills. Like Barbara Stewart, the 88-year-old Zillman used the suicide method of choice for the terminally ill. He took an overdose of barbiturates and went to sleep with a plastic bag over his head. He left his money to Children’s Hospital and Medical Center, his favorite charity.
Zillman’s desperate death shook many of his friends. Callow says he wishes his friend would have had the option to ask a doctor for a quick and painless end.
Having lost a reelection bid last year to a relatively unknown challenger, Callow has learned that predicting elections is risky business. Even so, he believes that with physician and religious groups allied against the initiative, it probably will go down to defeat.
That’s his professional view. And his personal one? “I will probably vote for it,” he says. “I don’t want to live 10 years on tubes and machines.”