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May Doctors Help You to Die?

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Lori Grinker/Contact Press Images
Dr. Jack Kevorkian at his attorney’s office, Southfield, Michigan, February 1993

At the time, I was executive editor of the New England Journal of Medicine and was aware that if we published Quill’s article, he might be at some legal risk. Like thirty-five other states, New York had banned assisted suicide. When I phoned Quill to ask whether, in light of the risk, he wanted to reconsider his request to publish the account of Diane’s death, he took a few days to think about it, then said he wanted to go ahead. Almost immediately after publication, the county district attorney brought him before a grand jury to indict him for manslaughter, but the grand jury refused.

In contrast to Kevorkian, Quill became widely respected within the medical profession, partly because his thoughtfulness was so at odds with Kevorkian’s indiscriminate zealotry. He became an influential spokesman for assisted dying as a last option in caring for terminally ill patients, and did much to bring it out of the shadows. He also became the plaintiff in a lawsuit to overturn New York’s prohibition against assisted dying.

That lawsuit wended its way toward the US Supreme Court, along with a similar one that originated in Washington State. In both cases, the relevant appeals courts (the 2nd Circuit, which has jurisdiction in New York, and the 9th Circuit in Washington) held that laws forbidding physician-assisted dying were unconstitutional. Both based their decisions on the liberties protected by the Constitution’s Fourteenth Amendment, which would include the right to determine the manner of one’s death. Finally, in 1997, the US Supreme Court, in Vacco v. Quill and Washington v. Glucksberg, reversed the appeals courts, declining to find a federal constitutional right to assisted dying, although reserving the possibility that it might do so in the future and making it clear that death hastened by palliative measures was permissible. Crucially, the Court held that for the moment the question of allowing assisted dying should be left to the states.8

Meanwhile, in 1994, to almost everyone’s surprise, following defeats of ballot measures in Washington and California, Oregon voters narrowly approved a Death with Dignity Act—the first law of its kind anywhere in the world.9 An effort to repeal the law three years later failed by a 60–40 majority, and assisted dying under the law began in 1998. Two organizations were instrumental in this achievement. One, formed by Portland attorney Eli Stuts- man, who drafted the act and shepherded it through its early years, has evolved into the Death with Dignity National Center (its state chapter led the Massachusetts effort). The other, Compassion & Choices, the outgrowth of several mergers and name changes (a progenitor was the unfortunately named Hemlock Society), had earlier sponsored the first Death with Dignity initiative in Washington State, which although it failed provided valuable lessons for Oregon. Largely through the efforts of its indefatigable director of legal affairs, Kathryn Tucker, Compassion & Choices was also crucial in successfully defending the Oregon law from various legal challenges, culminating in a 2006 victory in the US Supreme Court.10

Oregon’s law has a host of safeguards—in fact, some believe too many. First, it applies only to adults who are able to make their own decisions at the time of the request. It cannot be used through advance directives, or by people with limited decision-making capacity. Second, the patient must have a terminal illness, with a life expectancy of no more than six months, as determined by at least two physicians. That means it excludes patients who are suffering from an irreversible medical condition, such as amyotrophic lateral sclerosis (“Lou Gehrig’s Disease”), but are not within six months of death. (The Benelux countries, Switzerland, and British Columbia would not exclude such patients.)

In addition, the patient must make two oral requests for medication to hasten death, separated by at least fifteen days, and one written request, with two witnesses. By definition, the patient must be capable of swallowing the medication—usually barbiturates dissolved in a full glass of liquid—which ensures that it is voluntary. The law does not permit euthanasia. If the physicians believe a psychiatric condition is impairing the patient’s judgment, they must refer him or her to a psychiatrist or other counselor. No physician is required to participate in assisted dying; they may refuse for any reason whatsoever.

The Oregon Health Authority’s Division of Public Health keeps detailed records of how and why the law is used, which it releases every year.11 The law has now been in effect for nearly fifteen years, and it seems to have worked pretty much exactly as intended. As of the end of 2011, it had been used to hasten death by 596 patients, accounting for only one in five hundred deaths in Oregon. Most had cancer that had metastasized, although some had other terminal illnesses, such as advanced emphysema, and nearly all were receiving hospice care. Over 94 percent of the deaths occurred at home. The main reason patients gave for wanting to hasten their death was the loss of autonomy. Although pain was given as a reason by about a fifth of patients, it was near the bottom of the list. Roughly a third of all patients who were prescribed the medication did not take it, but kept it at hand because it provided peace of mind.

Concerns about an ethical “slippery slope” have not been borne out. First, the great majority of requests in Oregon were denied (in 1999, about 80 percent). Although there has been an increase in the incidence of assisted dying over the years, from sixteen deaths in 1998 to seventy-one in 2011, that was to be expected as people became more familiar with the law. It is still used sparingly, and the point of it, after all, was to make assisted dying available. At first, there were fears that the availability of physician-assisted dying might crowd out good palliative care, but it has had the opposite effect. Most experts believe that Oregon now has among the best palliative care in the country. There were also concerns that the law would be used disproportionately by disadvantaged patients—for example, the poor and uninsured. But in fact, the patients who died in Oregon were relatively affluent and well educated, and almost all had health insurance. They were the type of people who particularly value control and independence. Furthermore, there has been no indication of coercion by unscrupulous family members.

Whether patients who requested assisted dying did so because they were depressed is more difficult to evaluate.12 The symptoms of depression overlap with those of terminal illness, and dying inevitably produces sadness. Moreover, there are no good studies of the effectiveness of therapy in this setting. So far, the limited evidence is that depression is no more frequent in the patients who request assisted dying than in other terminally ill patients. Nevertheless, the Death with Dignity laws, including the ballot initiative in Massachusetts, require physicians to refer patients for counseling if they believe a patient’s judgment is impaired by depression or another psychiatric condition, and that was a common reason Oregon doctors gave for denying requests for assisted dying.

In short, observers looking for a slide down a slippery slope have not found it. No law, of course, works absolutely perfectly, but this one seems to come about as close as possible. It is overwhelmingly supported by the public and, according to one study, by most physicians in Oregon. The experience in Washington, although shorter, is much the same.

All of these laws exclude euthanasia. The rationale is that if the patient must swallow the medication, it is a voluntary act, whereas euthanasia could be involuntary. Many doctors gloss over that distinction, because they believe both forms of assisted dying are unethical in that they require the active participation of doctors in ending life. Even some doctors who believe assisted dying is sometimes warranted say they would not write the prescription themselves, but would outsource it to someone else.

These doctors, however, do not usually object to withdrawing life-sustaining treatment, such as a mechanical ventilator, if requested by a patient or proxy, because they don’t see it as actively causing death. Aside from the fact that disconnecting a ventilator would appear very active, indeed would constitute homicide, if done without the consent of the patient or a proxy, the problem with this argument is that it puts the focus on the physician, not the patient. If looked at from the patient’s point of view, swallowing medication is a purposeful action the patient must take, unlike withdrawing treatment or euthanasia, in which the patient may be passive.

Organized medicine is all over the map on this issue. The American Medical Association opposes physician-assisted dying altogether, stating in its Code of Ethics that it “is fundamentally incompatible with the physician’s role as healer.” But the American Medical Association now represents no more than 30 percent of physicians, and other medical organizations, such as the American Medical Students Association, the American Public Health Association, and the American Medical Women’s Association, support assisted dying. The Massachusetts Medical Society House of Delegates, knowing of the ballot initiative, strongly reaffirmed its opposition to assisted dying last December.

I have long favored legalizing physician-assisted dying for terminally ill patients whose suffering cannot be relieved in any other way, and I was the first of the original fourteen petitioners to put the Massachusetts Death with Dignity Act on the ballot in November. In 1997, as executive editor of the New England Journal of Medicine, when the issue was before the US Supreme Court, I wrote an editorial favoring it, and told the story of my father, who shot himself rather than endure a protracted death from metastatic cancer of the prostate.13

It seems to me that, as with opposition based on whether the physician is “active,” the argument that physicians should be only “healers” focuses too much on the physician, and not enough on the patient. When healing is no longer possible, when death is imminent and patients find their suffering unbearable, then the physician’s role should shift from healing to relieving suffering in accord with the patient’s wishes. Still, no physician should have to comply with a request to assist a terminally ill patient to die, just as no patient should be coerced into making such a request. It must be a choice for both patient and physician.

Probably most dying patients, even when suffering greatly, would choose to live as long as possible. That courage and grace should be protected and honored, and we should put every effort into alleviating their symptoms. But not all suffering can be adequately relieved. Most pain can be eased, but other symptoms are harder to deal with—weakness, loss of control of bodily functions, shortness of breath, and nausea—and the drugs to treat those symptoms often produce side effects that are as debilitating as the problems they treat. Even worse for many dying patients is the existential suffering. They know their condition will worsen day by day until their deaths, that their course is inexorably downhill, and they find it meaningless to soldier on. Why should anyone—the state, the medical profession, or anyone else—presume to tell someone else how much suffering they must endure as their life is ending?

As the November election draws near, the Massachusetts battle over assisted dying will become hard fought, and it is not at all clear which side will win. The Catholic Church is adamantly opposed, and Cardinal Seán O’Malley, the archbishop of Boston, has referred to assisted dying not as compassionate, but as an act of “sheer brutality.” But Catholics don’t necessarily follow the teachings of the Church’s hierarchy; for example, most Catholic women use some form of artificial birth control, despite the Church’s opposition. A 2005 Harris poll found that 70 percent of adults favor assisted dying, but when Americans have had the chance to vote for it, they sometimes pull back, as they did most recently in Maine in 2000. The tide appears to be turning, however. Nearly everyone knows someone who has died a slow, difficult death, and there is a natural desire to try to give patients more control over how they die. If the Death with Dignity Act is approved in Massachusetts, it will be a major step in that direction.

Letters

The Right to Death November 8, 2012

  1. 8

    See Kathryn E. Tucker’s comprehensive article on the legal challenges to assisted dying, including the Supreme Court’s decision in Vacco v. Quill and Washington v. Glucksberg, “Legal Advocacy to Improved Care and Expand Options at the End of Life,” in Physician-Assisted Dying: The Case for Palliative Care & Patient Choice, edited by T.E. Quill and M.P. Battin (Johns Hopkins University Press, 2004). 

  2. 9

    See Eli D. Stutsman’s authoritative account of the history and implementation of the Oregon Law, “Political Strategy and Legal Change,” Physician-Assisted Dying: The Case for Palliative Care & Patient Choice, edited by T.E. Quill and M.P. Battin (Johns Hopkins University Press, 2004). 

  3. 10

    Gonzales v. Oregon, 546 US 243 (2006). 

  4. 11

    See the Division of Public Health’s easily accessible year-by-year and overall results

  5. 12

    Dr. Ganzini, a psychiatrist, has carried out some of the most difficult research on attitudes in Oregon toward assisted dying, and has tried to evaluate the influence of depression; see “The Oregon Experience,” Physician-Assisted Dying: The Case for Palliative Care & Patient Choice, edited by T.E. Quill and M.P. Battin (Johns Hopkins University Press, 2004). 

  6. 13

    Marcia Angell, “The Supreme Court and Physician-Assisted Suicide—The Ultimate Right,” The New England Journal of Medicine, January 2, 1997. See also “The Quality of Mercy,” Physician-Assisted Dying: The Case for Palliative Care & Patient Choice, edited by T.E. Quill and M.P. Battin (Johns Hopkins University Press, 2004). Here I recount attitudes toward dying before Quinlan, and also tell the story of my father in more detail. 

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