On November 6, Massachusetts voters will decide whether a physician may provide a dying patient with medication to bring about a faster, easier death if the patient chooses. On the ballot will be a Death with Dignity Act that reads:
It is hereby declared that the public welfare requires a defined and safeguarded process by which an adult Massachusetts resident who has the capacity to make health care decisions and who has been determined by his or her attending and consulting physicians to be suffering from a terminal disease that will cause death within six months may obtain medication that the patient may self administer to end his or her life in a humane and dignified manner. It is further declared that the public welfare requires that such a process be entirely voluntary on the part of all participants, including the patient, his or her physicians, and any other health care provider or facility providing services or care to the patient.
If this ballot initiative passes, it will be binding, and Massachusetts will join Oregon, which implemented a virtually identical statute in 1998, and Washington, which did the same in 2009, as the only states where voters approved this form of physician-assisted dying, sometimes called aid-in-dying. (These terms are favored by proponents over the older term, physician-assisted suicide, because they distinguish it from the typical suicide in which someone with a normal life expectancy chooses death over life. Here the patient is near death from natural causes anyway, and chooses the timing and manner of an inevitable death.) Montana, through a 2009 decision by its Supreme Court, not a voter referendum, also permits physician-assisted dying.
Euthanasia—the act of directly injecting medication to cause death rather than providing medication for the patient to take if he or she chooses—is also a form of assisted dying, but it is banned everywhere in the United States. It is also banned in Switzerland, where assisted dying is otherwise allowed. However, euthanasia is legal in the Netherlands, Belgium, and Luxembourg, where they make no moral distinction between the two forms of assisted dying, and euthanasia is favored because it’s easier and faster. In June, the British Columbia Supreme Court overturned the Canadian law against assisted dying.1 If that decision stands on appeal, Canada will likely join the Benelux countries in allowing both forms of assisted dying.
The growing number of jurisdictions permitting physician-assisted dying, and particularly its possible acceptance in heavily Catholic Massachusetts, might suggest a new movement, but in fact what we are seeing is an outgrowth of a decades-long evolution in public attitudes toward how we die, which began with the 1976 case of Karen Ann Quinlan. Quinlan was a young woman found unconscious and not breathing after taking Valium and drinking heavily at a party. Although she was resuscitated, her brain was irreversibly damaged, and she was kept alive in a permanently unconscious state with a mechanical ventilator and a feeding tube. After several months, her parents decided to disconnect the ventilator and allow her to die. But they were required to get legal permission, and the case eventually reached the New Jersey Supreme Court.
In a landmark decision, the court authorized Quinlan’s father, who had been appointed her legal guardian, to stop all life-sustaining treatment if he so chose.2 (Unexpectedly, she continued to live even after the ventilator was removed, and since her parents were unwilling to stop artificial feeding, she lived, unconscious, for another nine years.) As the Quinlan case unfolded, it received extensive media coverage, and people began to say that they “wouldn’t want to live like Karen Ann Quinlan.”
Before Quinlan, there wasn’t much explicit attention given to whether and how to bring about an earlier death in permanently unconscious patients, or in patients who, although conscious, were suffering unbearably at the end of life. In fact, in the 1960s, when I trained in medicine, dying was hardly mentioned in medical school or training programs, except as a failure of treatment. It was rarely spoken of to families, let alone patients, who were never to be denied hope for a recovery, no matter how dire the prognosis. Sometimes when patients were in obvious misery at the end of life, doctors would increase the dose of morphine, with the expectation that it would hasten death, but they usually didn’t consult with anyone about it (an order for a large dose of morphine could lead to trouble even in those days), and it was more a reflection of doctors’ compassion and courage than patients’ needs and desires.
There were a few, isolated concessions to the inevitability of death during this period. In 1957, Pope Pius XII held that there is no moral requirement for doctors or families to provide “extraordinary” medical treatment, by which he seemed to mean futile or extremely burdensome treatment.3 In 1968, a group of prominent physicians recommended that death be redefined to include brain death even while respiration and heartbeat continued, and that treatment could be withdrawn from such patients.4 Also in the 1960s, Dame Cicely Saunders introduced the British hospice movement to the United States, and Elisabeth Kübler-Ross published her book, On Death and Dying, which argued for greater acceptance of death. Nevertheless, until the case of Karen Ann Quinlan, removing life-sustaining treatment, particularly artificial feeding, would generally have been considered tantamount to euthanasia, and simply was not done.
Nor was it nearly as urgent a question as it later became. Before the time of Quinlan, we simply didn’t have the technology to sustain life artificially for very long. In addition, there was another reason the right-to-die movement began about the time of Quinlan. As medicine became more specialized, of necessity it became a team endeavor, not a purely private matter between one physician and one patient. So a physician could not quietly increase the dose of morphine, as before. Instead, these sorts of decisions were removed from the bedside, discussed among team members, and became subject to ethical and legal oversight.
Within six months of the Quinlan decision, California became the first state to pass a Natural Death Act, which gave physicians legal immunity, with some restrictions, if they complied with patients’ directives in “living wills” to withhold certain life-sustaining treatments. One after the other, the remaining states passed their own versions of the Natural Death Act. In 1990, the US Congress enacted the Patient Self-Determination Act, which required all hospitals that receive federal funds (and that’s nearly all of them) to inform patients of their rights to prepare advance directives, to refuse treatment for any reason, and to name a proxy to act for them if they lost the capacity to make such decisions.
Also in 1990, the US Supreme Court addressed the issue in the case of Nancy Cruzan, a young woman in a condition much like Quinlan’s (termed a persistent vegetative state), whose parents sought to have her feeding tube removed. Although the Supreme Court denied their request because Cruzan had not left “clear and convincing evidence” that this is what she would have wanted, as required by her home state of Missouri, the Court did hold that if she had left such evidence, or in states where there was no such requirement, artificial feeding or any other life-sustaining treatment could be stopped.5 (Later, friends obligingly presented such evidence, and she was allowed to die.)
Much of the ethical underpinning for the wave of legislation and legal decisions that followed the Quinlan case was provided by the President’s Commission for the Study of Ethical Problems in Medicine in its influential 1983 report, “Deciding to Forego Life-Sustaining Treatment.” In it, the commission argued that not only was it ethical to forgo life-sustaining treatment, but there was no moral distinction between withholding and withdrawing it, and no distinction between artificial feeding and other life-sustaining treatment.6
Earlier, it had been considered more of a problem to withdraw treatment than not to start it in the first place, and artificial feeding was given special status. By the end of the 1980s, then, just fourteen short years after the Quinlan decision, it had become well established that patients could refuse any form of treatment, either directly or through an advance directive or proxy. (Unfortunately, experience since then has shown that advance directives are honored mainly in the breach; a 1995 survey found that most are disregarded by physicians, who may not even be aware that they exist.)
So far, I’ve focused on the refusal of treatment, not assisted dying. But the right to refuse life-sustaining treatment presupposes that there is such a treatment to refuse. Suppose there isn’t. Many dying patients might not be receiving such treatment because they can live without it. For example, although some patients with widespread lung cancer might need a mechanical ventilator to survive, patients with widespread cancer of the pancreas, which can also inflict terrible suffering, might not need that or any other treatment to remain alive while they slowly die in great misery. Shouldn’t they have the same right to hasten their deaths? In 1980, Derek Humphry founded the Hemlock Society, which not only argued for legalizing assisted dying, but published information on how to end one’s life if there was no treatment to withdraw. Still, the assisted dying movement did not enter the mainstream of public debate in the US for another decade, and was generally shunned by the medical establishment.
It wasn’t until 1990 that the issue began to have traction, and that was largely because of the emergence of two very different proponents—essentially a “bad cop” and a “good cop”—whose actions captured widespread public attention. The bad cop was Dr. Jack Kevorkian, a Michigan pathologist who set out on a nationwide crusade to help people end their lives with contraptions he devised that would allow them to trip the injection of a lethal substance or the inhalation of carbon monoxide. These people had disparate ailments, some of them terminal, some not, and Kevorkian had no long-term relationship with them or any clinical input from relevant specialists. Many in the medical profession were horrified, but surprisingly, much of the public approved of what he was doing. Although the Michigan legislature enacted a law against assisted suicide mainly to stop Kevorkian, and he was prosecuted four times under it, juries refused to convict him. It was not until he had performed euthanasia on television, that is, directly killed a patient, after nine years of assisting in some 130 suicides (according to his lawyer), that he was convicted of second-degree murder and sent to prison.
The good cop was Dr. Timothy Quill, an internist in Rochester, New York, who in 1991 published in the New England Journal of Medicine a moving account of his decision to help a patient end her life.7 His patient, whom he called Diane, was a forty-five-year-old woman with leukemia. Without a bone marrow transplantation, which would entail much discomfort and was unlikely to be successful, she would die. Diane decided to refuse the transplantation and, with the support of her husband and adult son, asked Quill for a prescription to bring about death if and when she chose. He agreed, gave her the prescription, and she ultimately ended her life by taking it, after first asking her family to leave the house for an hour or so. Quill, who had been Diane’s physician for eight years, concluded his account by asking “why Diane, who gave so much to so many of us, had to be alone for the last hour of her life.”
1 Carter v. Canada (Attorney General), 2012 BCSC 886, June 15, 2012. ↩
2 In re Quinlan, 70 N.J. 10, 355 A.2d 647 (1976). ↩
3 Pius XII, “The Prolongation of Life,” The Pope Speaks, November 24, 1957. ↩
4 “A Definition of Reversible Coma: Report of the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death,” The Journal of the American Medical Association, August 5, 1968. ↩
5 Cruzan v. Director, Missouri Department of Health, 497 U.S. 261, 110 S.Ct. 2841 (1990). ↩
6 President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, “Deciding to Forego Life-sustaining Treatment: A Report on the Ethical, Medical, and Legal Issues in Treatment Decisions” (Government Printing Office, 1983). An early and important analysis of end-of-life issues by a group of distinguished experts in medicine, law, and bioethics. ↩
7 T.E. Quill, “Death and Dignity—A Case of Individualized Decision Making,” The New England Journal of Medicine, 324 (1991). ↩
Carter v. Canada (Attorney General), 2012 BCSC 886, June 15, 2012. ↩
In re Quinlan, 70 N.J. 10, 355 A.2d 647 (1976). ↩
Pius XII, “The Prolongation of Life,” The Pope Speaks, November 24, 1957. ↩
“A Definition of Reversible Coma: Report of the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death,” The Journal of the American Medical Association, August 5, 1968. ↩
Cruzan v. Director, Missouri Department of Health, 497 U.S. 261, 110 S.Ct. 2841 (1990). ↩
President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, “Deciding to Forego Life-sustaining Treatment: A Report on the Ethical, Medical, and Legal Issues in Treatment Decisions” (Government Printing Office, 1983). An early and important analysis of end-of-life issues by a group of distinguished experts in medicine, law, and bioethics. ↩
T.E. Quill, “Death and Dignity—A Case of Individualized Decision Making,” The New England Journal of Medicine, 324 (1991). ↩