SPECIAL REPORT

TO LIVE OR DIE

DOCTORS AND LEGISLATORS STRUGGLE WITH THE ETHICS OF EUTHANASIA

TOM FENNELL February 24 1992
SPECIAL REPORT

TO LIVE OR DIE

DOCTORS AND LEGISLATORS STRUGGLE WITH THE ETHICS OF EUTHANASIA

TOM FENNELL February 24 1992

TO LIVE OR DIE

DOCTORS AND LEGISLATORS STRUGGLE WITH THE ETHICS OF EUTHANASIA

SPECIAL REPORT

The mind of the 25-year-old woman was still very much alive—but imprisoned in a body that was all but dead. In the 2½ years since a progressively debilitating disease left Nancy B. paralysed from the neck down, her life had fallen into a remorseless, depressing routine. The nurses would arrive in her Quebec City hospital room promptly at 9 a.m. to bathe and massage her useless limbs. As they worked, Nancy could only converse in a raspy whisper above the relentless hum of her respirator. Then, in November, Nancy B. attracted national attention when her lawyer petitioned the Quebec Superior Court to grant her patient her heartfelt wish: to have her life-support system turned off so that she could die. On Jan. 6, the court agreed. For more than a month, the woman weighed the ominous choice that was hers alone to make: consciousness or oblivion. Last week, like a rapidly growing number of Canadians who are rejecting the prospect of a painful, lingering demise, Nancy B. chose death.

On the morning of Feb. 13, Nancy B. s doctors made sure that she was heavily sedated. Gathered in the hospital room were her mother and father, a brother and her two sisters, one of whom was her twin. (Maclean ’s acceded to the wishes of the family members that their last name not be used.) There were also two doctors present. At 10 a.m., under the authority granted to her by the court order, Dr. Danièle Marceau, Nancy B.’s principal physician, turned off the machinery that had kept her patient alive for so long. She died seven minutes later, ending a grim legal and human drama that had commanded the interest and

concern of thousands of Canadians (page 50). The case also focused attention on the debate over the rights of individuals to choose the time and manner of their own deaths—and on evidence that suggests that some Canadian doctors are collaborating with patients and their families to end the lives of terminally ill Canadians.

At the same time, legislators, doctors and hospital administrators across Canada are at-

tempting to enshrine the shifting ethics surrounding death in new laws and practices that could result eventually in a wide acceptance of mercy killing in Canada. In the debate over whether euthanasia should be legalized, supporters—and opponents—of mercy killing both point to the Netherlands, where doctors help thousands of terminally ill patients to die each year (page 48).

In the United States, a growing right-to-die

movement has been spearheaded by the Eugene, Ore.-based National Hemlock Society and its controversial founder Derek Humphry, whose book, Final Exit, which provides information and advice on how to commit suicide for the terminally ill, has sold more than 500,000 copies in the United States and Canada since it was published in May, 1991. The issue attracted more attention in October, when Michigan physician Jack Kevorkian used carbon monox-

ide gas and lethal drugs to help two chronically ill women to die. His actions led to a lively debate on euthanasia—and a criminal investigation. Early this month, a grand jury indicted Kevorkian on two counts of murder in connection with the deaths of the two women.

The startling growth of a pro-euthanasia lobby in Canada is reflected in the hectic pace of activity in a suite of modem offices near downtown Toronto, where former nurse Marilynne Seguin presides over Dying With Dignity. Since its creation in 1980 to support voluntary euthanasia and rational suicide by the elderly, infirm and the chronically ill, the group has attracted 6,500 members across Canada. Seguin, who is widely respected for her work across Canada, is often called in by the families of terminally ill patients to negotiate with doctors and hospitals. Said Seguin: “I think that it was very important for Nancy B. to proceed this way. She showed a great generosity in spirit because she wanted to protect her doctor from legal action.”

Choice: In Victoria, John Hofsess heads another organization dedicated to giving people a choice over how they die. Hofsess, a journalist, runs thé 1,100-member Right To Die Society of Canada, which he says has been growing at the rate of almost eight new members a day since it was established last September. The organization’s board includes the Hemlock Society’s Humphry. “There should be special places where people can go when they want to die,” says Hofsess, who advocates the establishment of hospices where terminally ill patients can choose the time and circumstances of their death.

The fight to determine what rights individuals should have over their own mortality has triggered a series of proposed new laws at both the provincial and federal levels. Those measures could radically alter how people die in Canada. In Alberta, Manitoba and Ontario,

politicians and law reform agencies are considering legislation that would legalize health-care directives (documents that indicate what medical procedures a gravely ill person would accept or refuse) and the appointment of health-care proxies (people named to act on behalf of terminally ill patients). Said Gerald Robertson, a professor of law at the University of Alberta in Edmonton who helped draft the Alberta proposals: “There is a growing concern on the part of many people that they do not have sufficient control over the end stages of their lives.”

Added Robertson: “Where the individual is of sound mind and the health-care directive is clear, the directions must be followed.”

Still, the terms of some

living wills could call on doctors to take steps that are now illegal, such as administering so much morphine to suppress pain that the dosage could prove fatal. Under the Criminal Code, it is illegal for a doctor to induce death in a patient. But in Ottawa early this month, a parliamentary committee met to hear expert witnesses testify about the contents of Bill C203, a private member’s bill that would in part make it clear that it is not illegal to withhold medical treatment from a terminally ill patient. Under the proposed legislation, a doctor would no longer be charged if he administered drugs strong enough to control pain in a terminally ill patient, even if the drugs led to the patient’s death. Said the bill’s sponsor, Robert Wenman, Conservative MP for the B.C. riding of Fraser Valley West: “We want to decriminalize the process of dying by making death a process of health care. We should eliminate the threat of criminal charges that are hanging over the heads of doctors.”

But while politicians consider changes in the law, other Canadians are quietly making their own decisions about death. Leslie Tatler of Peterborough, Ont., 130 km northeast of Toronto, faced such a decision last March, as cancer of the breast, which had spread to the liver, slowly killed his wife. Tatler and his wife, Jean, 58, had led a full life, and when he retired from his job as a printer, they discussed what they would do if one of them became terribly ill. He said that neither of them wanted to end up as a burden on their only son, Derek, a security officer, or endure a long, painful death. Tatler said that when death drew near, his wife’s doctors agreed with their request to forego further treatment. Two days later, on March 29, the day after the couple’s 38th wedding anniversary, Tatler was beside his wife, holding her hand, as her eyes closed and she slid into death. Said Tatler: “I have no regrets. It was something we had talked about. I’m just

glad the doctors co-operated with us.”

Last summer, an elderly Toronto couple made an equally chilling decision, according to their daughter, Andrena Miller, a 55-yearold Toronto television researcher. Miller said that about five years ago, her parents called her to their comfortable house in Toronto’s wealthy Forest Hill neighborhood. In clear and precise language, her father, C. E. Campbell, and her mother, Rena, told her that if their health deteriorated to the point where life became a struggle, they would commit suicide rather than face a lingering death marked by growing incompetence or pain. “I hoped that they would die peacefully in their sleep,” said Miller. “But they

had led a wonderful life and I understood.” Then, on July 20, 1991, when repeated telephone calls to her parent’s home went unanswered, she said that she feared the worst. “I was numb. There was a great void,” recalled Miller. She went to her parents’ house, where she found her father, who was 87 at the time, and her mother, 84, dead from drug overdoses. She said that her father had read Final Exit and may have used one of the suicide methods described in it. Miller added that her father left behind a letter clearly stating that the couple’s decision to take their own lives after living together for 59 years was their own, and that their children played no part in their deaths. “They looked very peaceful and were lying side by side,” said Miller. “I couldn’t imagine one without the other.”

Shift: Among Canadians, the shift in public opinion towards the acceptance of personal choice on the issue of death appears to be advancing as rapidly as the ability of medical science to prolong life. According to a Gallup poll conducted in November, 1991,75 per cent of the Canadians surveyed said that competent doctors should be allowed to carry out mercy killing. Doris Clapham, 65, of Vancouver, says that deliverance by suicide would be preferable to a slow, painful death. “I would do it as soon as I was diagnosed [as having a fatal illness],” said Clapham. “I know what pills to take and I know how to use a plastic bag.”

The rapid growth in Dying With Dignity’s membership also reflects a desire by some Canadians to have control over their own deaths. Seguin launched and ran Dying With Dignity out of her own home in Toronto in 1980. But late last year, with the organization’s membership rapidly increasing, she moved into a suite of offices in a modem building. Seguin, who speaks in the quiet, measured tones of someone who regularly talks to the gravely ill, runs her operation as tightly as any successful executive. Two staff members are employed as administrators, and in the group’s library, the words “death,” “exit” and “life” seem to leap from the spine of almost every book.

Seguin launched Dying With Dignity with four other people after she underwent a personal conversion. As a nurse working in a Toronto hospital during the 1970s, she said that she often felt heroic as she struggled to save the lives of patients. But one of her last

cases, involving a young man who had broken his neck in a diving accident, changed her views—and her life. While she struggled to keep his emaciated body alive, he constantly asked her to let him die. “I remember him asking me why I was doing this,” recalled

Seguin. “In the end, I decided I had not been so heroic after all.”

When the patient died three years later, Seguin said that she started to think about why so many tortured people were being kept alive against their wishes. She said that she decided that it would be better to help them to die painlessly. Seguin added that she also believes that healthy elderly people have the right to take their own lives if they choose to: last year, she received a letter from a wealthy 87-yearold Toronto woman—“Margaret”—walked with her in her rose garden and later attended a concert with her. Seguin said that her role was to help Margaret decide whether she really wanted to commit suicide and to support her. A few weeks later, the woman died following an overdose of sleeping pills. Said Seguin: “Margaret was fully alive and alert, but she had accomplished all the business of her life. She made a calm, rational decision to stay in control to the end.”

While politicians and doctors are sharply divided over the question of euthanasia, there is compelling evidence “ that many physicians are alg ready ending the suffering of terminally ill patients by administering overdoses of drugs such as morphine. Earlier this month, a doctor in the Northern Ontario city of Timmins, Alberto de la Rocha, was arrested and charged with second-degree murder in the death of Mary Graham, 68, who had been undergoing cancer treatment. Police said that the woman died suddenly on Oct. 15,1991, “of apparent cardi-

A DEBATABLE SOLUTION

In the debate over whether euthanasia should be made legal, there are few precedents on which to model proposed new laws. Currently, one of the few countries in which mercy killing is considered an acceptable medical treatment, under certain conditions, is the Netherlands. Although it is a crime to deliberately kill a patient under Dutch law, the practice is tolerated under an agreement between the Royal Dutch Medical Society and the federal prosecutor’s office. And even given the agreement, a Dutch patient must make repeated requests to die, and must be suffering from an incurable mental or physical illness, before

a request for euthanasia is likely to be granted. As well, two doctors must agree before the procedure is carried out. If all the requirements are met, the patient is given barbiturates to induce sleep, followed by an injection of curare, a lethal poison.

In Canada, advocates of the right to die and some doctors say that the Dutch system is humane, but far from perfect. Eike-Henner Kluge, an ethics professor at the University of Victoria, travelled to the Netherlands three years ago to study the Dutch system for the Canadian Medical Association. He said that during his investigation, he found no evidence that the system was being abused. Kluge added that Dutch medical officials told him that under the currently accepted procedures, between 3,000 and 5,000 people die as the result of voluntary euthanasia in the Netherlands each year.

Still, other Canadian doctors who have stud-

ied a new report on the Dutch experience with euthanasia say that the number of patients being killed is much higher than official estimates, and they contend that some patients have been killed without their consent. In a 1991 report, a Dutch governmental committee said that it found 1,000 instances among the 25,306 cases of euthanasia in 1990 in which there was no explicit request by the patient. The figures, compiled by the Dutch Institute for Social Health Care, did not specify the medical conditions of the patients whose lives ended in what it called “active involuntary euthanasia.” Such mixed conclusions about the Dutch experience with euthanasia may only complicate the emotional debate in Canada.

T. F.

ac arrest after being administered a quantity of morphine and potassium chloride.” That seemingly isolated incident attracted the attention of police. But in Ottawa, MP Wenman said that testimony before his parliamentary committee suggested that it is increasingly common for doctors to end the lives of terminally ill patients. Said Wenman: “We have had several doctors who work in palliative care [testify], and Bill C-203 seems to legitimize common practice.”

Still, Wenman insists that the bill he is trying to shepherd through Parliament to protect doctors from prosecution in the deaths of terminally ill patients would not open the door to widespread legal euthanasia. But critics of the bill contend that it would indeed legalize mercy killing. Said Eike-Henner Kluge, a professor of ethics at the University of Victoria who until last year was director of the Canadian Medical Association’s legal and ethical affairs department: “If strictly interpreted, this would allow for active euthanasia.”

But right-to-die advocates say that Wenman’s bill would simply make it easier for doctors and hospitals to agree when a patient asks to be removed from a life-support system. In the case of Nancy B., both officials at Quebec City’s Hôtel-Dieu hospital and her doctor, Marceau, refused to disconnect her respirator before the court hearing for fear of being prosecuted.

Right: For his part, Kluge said that the decision by Superior Court Justice Jacques Dufour in the Nancy B. case went a long way towards upholding the argument that individuals have the right to control their own fate, even if their decision results in death. Kluge pointed out that Dufour declared in his ruling that “a doctor should not be held liable and accused of careless conduct and criminal negligence for respecting the patient’s right to selfdetermination.”

Delivering his decision, Dufour said that he had weighed the rights of the individual against the requirements of the Criminal Code and

arguments that the death of Nancy B. would amount to outright homicide. In the end, he ruled that a patient’s refusal of medical treatment does not breach the Criminal Code, even if it results in death. He also ruled that the Criminal Code does not require a doctor to administer treatment against a person’s will. Said Nancy B.’s lawyer,

Anne Lapointe of Quebec City: “What the judge said is that illness is the cause of death, not the treatment.”

Officials with Dying With Dignity have decided to support Wenman’s bill with minor amendments, but the Right to Die Society said that the bill is too open to misinterpretation and that they wanted it redrafted

more effective. For his part, Chris Axworthy, the New Democratic Party MP for Saskatoon/ Clark’s Crossing, who recently saw his privatemember’s bill on euthanasia dropped, said Canada’s laws must reflect the new demands for the right to die. Said Axworthy: “Seventy-five per cent of the population wants this.”

In the debate over legalized euthanasia, some critics point with alarm to the prospect that, with health-care funding shrinking in Canada, hospitals would be under pressure to free up beds occupied by the elderly and the terminally ill—by killing patients. Said Dr. Barrie DeVeber, a palliative-care expert at the Children’s Hospital of Western Ontario in London: “Mercy killing is a slippery slope that will lead to its wider use. Patients don’t need to be killed off. They need care.” As well, DeVeber contends that some right-to-die supporters do not understand how modern medical technology can make the final stages of human life relatively pain-free and com-

fortable. “I have worked with 400 terminal cases and only two have asked to die,” he said.

Still, Seguin said that while the medical profession’s ability to control pain has come a long way, some doctors still allow patients to suffer excruciating pain—either because they are ignorant of pain-control technology, or because they are afraid that they will be charged if they kill a patient with overdoses of a painkiller. Said Seguin: “I was involved in a case where I could hear a man screaming two houses away from his home. But the doctor would not give him enough morphine to kill the pain because he was afraid it might kill the patient. He died in agony.”

According to Kluge, many Canadians do not really understand what the terminally ill, and people who want the right to control their own deaths, are really demanding. Patients like Nancy B., said Kluge, do not want to spend years hooked up to machines and fed powerful painkilling drugs. He added: “The question is one of dignity. People simply do not want to die that way.” In the end, Nancy B., who told Dufour that she could no longer tolerate living attached to a machine, may have spoken for a growing number of Canadians who believe that oblivion is preferable to artificially and painfully prolonged life.

TOM FENNELL