November of the Soul

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November of the Soul Page 57

by George Howe Colt


  “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 eightee
n 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.”

 

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