SPECIAL REPORT

The legacy of SUE RODRIGUEZ

CHRIS WOOD February 28 1994
SPECIAL REPORT

The legacy of SUE RODRIGUEZ

CHRIS WOOD February 28 1994

The legacy of SUE RODRIGUEZ

SPECIAL REPORT

CHRIS WOOD

In the end, death came to her bedside in as comforting a form as she could have hoped. For a long time, she had been unable to move her limbs, to embrace her family or to care for herself. Once active and self-reliant, now she had to rely on others for every need, even for the most intimate acts of personal hygiene. This would not change: the illness that had deprived her of command over her own body was both irreversible and incurable. For a while, she had fought through the courts for society’s permission to extinguish a life that no longer brought her either pleasure or hope, and while that campaign lasted, her name and tragic circumstances captured the nation’s sympathy—and its fears. But when the end finally came, in the form of a powerful sedative that would ease her way out of existence, she faced that final mystery as all of us do, alone.

That those words describe equally well the death of the woman known only as Nancy B., in Quebec City on Feb. 13,1992, and the death almost exactly two years later of Sue Rodriguez in Saanich, B.C., illustrates several things. One is that while we cannot escape the brutal inevitability of death, startling advances in medicine have set before us expanding temptations to determine the timing and manner of our departure. Another, just as troubling, is that as a society, we still do not know quite what to think about this. Polls tell us that most Canadians would give their blessing to the personal choices that Rodriguez and Nancy B. made. More than three out of four people surveyed by Gallup Canada in November, 1992, agreed with the statement that “when a person has an incurable disease that causes great suffering, competent doctors should be allowed to end the patient’s life through mercy killing.” But the devil, as always, is in the details. Once killing is allowed inside the gates of individual conscience and embraced as accepted medical practice, what

is to prevent it from being applied to an ever-widening pool of human and social problems? “There is a slippery slope,” asserts Dr. Elizabeth Latimer, the director of palliative care at Hamilton Civic Hospital “Vulnerable people could die when they don’t want to.”

Still, Rodriguez’s death at the age of 43 at her home north of Victoria on Feb. 12 provided a spur that now seems certain to force a renewed public debate on the troubling issue of euthanasia. Rodriguez’s serenity and evident personal courage put a sympathetic human face to the abstract moral dimensions of the debate as she pursued her request for what she termed “assisted suicide” as far as the Supreme Court of Canada, which turned her down last September. At the same time, Rodriguez’s desire for active assistance in dying raised the controversy to a plane beyond the one where it was left by Nancy B., who two years ago sought and won the Quebec Superior Court’s sanction for the removal of a life-supporting respirator. Nancy B. asked only to be allowed to die; Sue Rodriguez begged for the right to have help in killing herself.

The pretty, fine-boned former secretary’s choice of companion during her final hours also ensured that the debate over her death would have a political afterlife. New Democrat MP Svend Robinson’s tearful acknowledgment in Ottawa last week that he had been present when Rodriguez died served partly to shift public attention away from her surviving family: her estranged second husband, Henry, and her nine-year-old son, Cole. It also made it more likely that Rodriguez’s,.,

dying wish to have Parliament take up the debate over Canadians’ right to choose the time and manner of their own death will be fulfdled. Robinson himself tabled a private member’s bill that would legalize the kind of assistance that Rodriguez sought. This week, the Senate is expected to consider a proposal to undertake public hearings into the issue. Both federal Justice Minister Allan Rock and Prime Minister Jean Chrétien, meanwhile,

promised they would bring the issue before the House of Commons during the current session of Parliament.

Rodriguez’s role as a catalyst in the resurgent debate over dying was one that she probably would never have imagined for herself as recently as three years ago. An active runner and cross-country skier, she first detected symptoms of illness in April, 1991: a progressive loss of control over her muscles. That August, those symptoms were diagnosed as amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease after the New York Yankees baseball hero who died from it in 1941. The illness irreversibly destroys cells in the spinal cord and brain stem, leading ultimately to all but complete paralysis. Although mental functions remain unimpaired, victims of ALS eventually lose control over their lungs and diaphragm; most eventually die of suffocation.

At first, Rodriguez resisted the profoundly negative implications of her diagnosis. “I was in incredible denial,” she told journalist Anne Mullins, who also became a friend, in 1992. “I spent a fortune on naturopathy, acupuncture. I spent $10,000 travelling to Colorado to have my fillings removed. On any given day, I was seeing three types of care givers.”

By the autumn of 1992, however, the relentless progress of the disease forced Rodriguez to accept her doctors’ bleak prognosis. She had also reached a grim decision about her own future: that she would one day reach a point at which she would not want to continue living, but would no longer be capable of ending her life without assistance. That November, Rodriguez videotaped a message urging Ottawa to remove the prohibition in the Criminal Code against a physician helping a patient to commit suicide. ‘Today, I can barely walk,” Rodriguez said in the taped message that was played to a parliamentary committee examining proposed changes to the code. “There is much worse to come. I will be unable to breathe without a respirator. I will be unable to eat or swallow, unable to move without assistance.” She added: “I want to ask you, gentlemen: If I cannot give consent to my own death, then whose body is this? Who owns my life? ”

In December, 1992, Rodriguez’s lawyer, Chris Considine, asked the B.C. Supreme Court to overturn the existing law, which pro-

She may have won in death what she did not win in life: a full debate on choosing when to die

vides for up to 14 years’ imprisonment for anyone who assists a suicide. Considine’s argument was that the law infringed on his client’s right to life, liberty and the security of the person under the Canadian Charter of Rights and Freedoms. Testifying on her own behalf, Rodriguez told Justice Allen Melvin: “I want to be in charge of my life—and my death.” But the court rejected her plea—as did the B.C. Court of Appeal in February, 1993. Finally, Considine took Rodriguez’s case before the Supreme Court of Canada, which heard his arguments in May. But on Sept. 30, by a vote of 5-4, the high court confirmed Melvin’s original ruling: that Section 241(b) of the Criminal Code prohibiting assisted suicide offers protection to “the young, the innocent, the mentally incompetent and the depressed,” and that it did not impede Rodriguez’s rights.

By then, however, Rodriguez may already have laid plans for her eventual death. At a news conference that Robinson attended with Rodriguez on March 8 of last year, the MP announced that he had found a B.C. physician who was willing to end Rodriguez’s life. Later, according to Robinson, Rodriguez confirmed her intentions in a painfully hand-written note. “I have decided to end my life,” Robinson quoted Rodriguez as having written, “because the suffering from ALS is unbearable to me.” According to Robinson, Rodriguez decided in mid-January to put her intention into effect on Saturday, Feb. 12.

Robinson said he arrived at Rodriguez’s home that morning to find her alone. “We were together for an hour or so, during which time she outlined to me what she wanted to happen after she died,” Robinson recounted. “The doctor then arrived, and she discussed with the doctor the arrangements for her death. I comforted her in her bed. I held her in my arms. She peacefully lapsed into unconsciousness and stopped breathing approximately two hours later.” Nowhere in his carefully worded statement did Robinson explicitly state that the physician had done anything to end Rodriguez’s life. And the MP has steadfastly refused to name the doctor involved.

Rodriguez’s death now seems certain to spark the wide-ranging re-examination of Canadian laws on euthanasia that she was unable to provoke during the final months of her life. “It is a problem that I expect this Parliament to have an occasion to look into and vote [on],” Chrétien said the day after Robinson made his statement. “It will be a free vote because it is of the same nature as other free votes that we have had in the past like abortion and like capital punishment.”

Like those earlier battles, the coming

debate over euthanasia may rest as much on emotion as it does on fact. That was already evident last week as Cheryl Eckstein, president of an anti-euthanasia group based in Surrey, B.C., called Compassionate Healthcare Network, responded to what she described as “the intentional killing” of Rodriguez. “There is a big difference between letting a person die and making that person die,” declared Eckstein.

“Making a person die is killing.

We do not see killing as a solution to illness and suffering.” In a view endorsed by Hamilton’s Latimer and many other specialists in palliative care, Eckstein insisted that few terminally ill people request assistance in dying if their medical treatment is adequate. ‘True compassion,” Eckstein asserts, “literally means ‘to suffer along with.’ ”

Eckstein’s compassion offers thin comfort to Am Schilder. As an HIV-infected activist on behalf of other AIDS victims in Vancouver, Schilder says with grim humor that he takes “a consumer perspective” on issues of death. What Eckstein calls “killing,” Schilder considers to be “a health-care choice that is essentially therapeutic.” It is a view that he has come to after watching more than 200 people die from AIDS since 1987. “I know there are people who think you should relish those delicious palliative moments,” he observed last week with an air of bittemess. “But dying is not always a pleasant experience. Sometimes, it is violent. I have seen a 24-year-old man die hacking away for breath. There is a better way to go than that.”

For those who seek them out, however, the options are often not as peaceful as

‘I COMFORTED HER. I HELD HER IN MY ARMS.

SHE LAPSED INTO UNCONSCIOUSNESS.’ -SVEND ROBINSON

Rodriguez’s quiet slide into oblivion was reported to be. That also became evident last week when Vancouver social worker and criminology student Russel Ogden, in a coincidence of timing that he described as “perverse,” released the findings from a year of research into acts of euthanasia and assisted suicides among people with AIDS. In all, Ogden documented 34 such deaths between 1980 and 1993, 29 of them in British Columbia—accounting for nearly three per cent of all AIDS-related deaths in the province during that period.

Many of the attempts at euthanasia or assisted suicide, however, produced something far from the merciful extinction that the terminally ill victims had sought. “In some cases,” Ogden found, “the patient vomited all of his or her medication. In others, they would fall into a coma and then be asphyxiated by their assistants. Some deaths took extraordinarily long to complete—up to several days.” In one especially harrowing incident, the patient was discovered several hours after taking a large dose of morphine, still

alive and keening in a corner of his bedroom, apparently convinced that he had died and gone to hell. It took a second dose of the drug to finally complete the death. Concluded Ogden: “People are planning their deaths in a manner consistent with their choosing, and instead they are dying in conditions akin to those of a back-street abortionist.”

The comparison is telling: as was the case with abortion before that procedure was legalized in 1969, social disapproval has not prevented the desperate from seeking out assistance in dying. Instead, it may simply be adding to their misery and distress. In an address to the 1993 conference of the Canadian Medical Association, Ontario doctor Ted Boadway noted of underground acts of euthanasia: “It is happening with no record, no discussion, no consultation, no consistency, no direction, no guidance and no comfort to the public that it is being done well or correctly.”

But assuring either the public at large or what Am Schilder calls consumers of death that euthanasia is being practised with care and consistency is bound to be problematic. Some critics, indeed, will find the very notion of euthanasia that is done well to be an oxymoron. “There’s a major difference between allowing someone to die and killing them,” asserted Margaret Somerville, director of McGill University’s Centre for Medicine, Ethics and Law. “It’s like a river that you cross. You’re not on the same shore any more.”

Even those who accept the desirability of

assistance in dying, however, are less sure of how it should be regulated. For his part, Ogden proposes establishing what he calls “aid-in-dying boards.” Composed of experts in palliative care, terminal illnesses and medical ethics, such boards would hear applications from patients who, like Rodriguez, sought assistance in dying. Their principal determination, adds Ogden, “would be to make sure that it is a voluntary and informed request.” Once that was established, a board could direct that an act of euthanasia be completed under strict medical guidelines.

Another approach is one that the Netherlands enacted into law only last December after years of informal observance. There, euthanasia remains illegal, but doctors who participate in such an act are virtually assured that they will not face prosecution if they follow established guidelines and report the action to legal authorities. Much of the 50point questionnaire that Dutch doctors must fill out after committing an act of euthanasia is directed at establishing that patients have explicitly requested that their death be hastened; physicians must also secure a second medical opinion before they proceed. Under those rules, a government-mandated study of deaths in 1991 reported that 2,300 people requested euthanasia, out of a total of 130,000 deaths in the Netherlands.

But the Dutch rules also permit doctors to terminate life without a patient’s consent if the physician considers that death is inevitable and the patient is in pain. In 1991, that practice allowed at least 1,000 instances in which, as the government’s study dryly phrased it, a “lethal drug [was administered] without request” and resulted in death. Another 1,300 cases in which doctors administered an overdose of a prescription drug with the explicit intention of ending a patient’s life were also not included in the study’s total of deaths attributed to euthanasia.

Such selective accounting, and the evidence that many deaths under the Dutch rules are

involuntary, worry and enrage critics of euthanasia. In a biting critique of his own nation’s approach, Dr. Karl Gunning, the president of a Rotterdam-based association of physicians opposed to the practice, warned: “Once you allow a doctor to kill, ethics become elastic. Today, you allow killing at the request of a patient whose suffering is unbearable. Tomorrow, you kill even without a request. Then, you kill not because the patient is suffering but because he looks so awful.”

In Canada, meanwhile, Douglas Kinsella, director of medical bioethics at the University of Calgary’s faculty of medicine, expresses similar concerns. “I am honestly fearful of what would occur if the law were generally relaxed,” he says. “It is state-authorized extermination of human lives. Regardless of the motivation, you know that it will become not a rare event, but a much more common event. That has been the experience in the Netherlands.”

In Ottawa, politicians preoccupied with the economy and the deficit in the run-up to this week’s federal budget greeted the sudden emergence of euthanasia as an issue with marked lack of enthusiasm. Still, even on Parliament Hill there were signs that views may have changed since February, 1992, when a Commons committee rejected a private member’s bill sponsored by Conservative Robert Wenman. That bill would have given modestly greater protection against prosecution to doctors who administer potentially lethal doses of painkillers to terminally ill patients. Bloc Québécois Leader Lucien Bouchard, for one, acknowledged that Rodriguez’s example “does affect my traditional view of the question. I’m prepared to have a fresh look at it” And Justice Minister Rock promised “to put the question before the House so it is not just academic. It will be meaningful.”

Whatever its ultimate meaning, the debate will come too late for Sue Rodriguez. For her,

the public battle to change Canada’s laws on dying clearly became less important as declining health drained her energies. Although she continued until close to the end to assist journalists who were preparing both a book and a television documentary about her, those close to her say that it was her son who dominated her thoughts. It was when she could no longer hug him that she finally determined that the time had come to die, and one of her last acts was to sign a contract that will ensure that Cole Rodriguez receives a portion of the royalties from the book that MacMillan Canada plans to publish about her life. The youngster and Rodriguez’s husband ate supper with her for the last time on the evening before her death.

Friends said Rodriguez’s body would be cremated and the ashes buried beneath a favorite fig tree in the backyard of her home. It seems unlikely that there will be any criminal charges arising from her death to disturb her memory. Even if the RCMP’s investigation leads to the name of the doctor who helped to kill her, guidelines released last November by British Columbia’s NDP government instruct Crown prosecutors not to lay charges in cases of assisted suicide unless there is a “substantial likelihood of conviction” and “the public interest requires a prosecution.” In Rodriguez’s case, neither condition is certain.

Plainer is this: although the nation’s top court may have made it clear in answer to her poignant question that Rodriguez’s life did not, in fact, belong unequivocally to her, she succeeded nonetheless in making her death her own. That was what she had sought for herself. The larger dimension of her victory is that the government is now committed to reexamining whether it should be so for others as well.

With WARREN CARAGATA in Ottawa and PATRICIA CHISHOLM in Toronto

WARREN CARAGATA

PATRICIA CHISHOLM