Scholars and alumni debate the assisted dying issue--and how to protect society’s most vulnerable

By Andrew Stobo Sniderman, JD 2014 / Illustration by Sandra Dionisi

From the Spring/Summer 2016 issue of Nexus

Assisted dying illustrationTrudo Lemmens, U of T’s Belgian-bred professor and Scholl Chair of Health Law and Policy, has in the last year emerged as a voice of caution while Parliament debated how doctors should help people die. This spring, he testified in Ottawa before House and Senate committees and urged Canadian lawmakers to learn the right lessons from more than a decade of legalized assisted dying in Belgium and the Netherlands.

“I speak Dutch and French, I return to Belgium almost every year, and I’ve heard about the families of people killed prematurely by sloppy physicians,” he says. “I have been troubled that in Canada we hear overly enthusiastic accounts of how well Belgium and Netherlands were dealing with euthanasia. Canadians shouldn’t expect the legalization approach taken in these countries will resolve so easily the challenges of dealing with end of life care in Canada.”

Back in 2001, while completing his doctorate at McGill, Lemmens participated in a conference organized by the Belgian Bioethics Advisory Committee as Belgium drafted its own assisted dying legislation, which has since become his case study in how something so narrow can grow into something so problematic. Over time, the number of recorded assisted deaths has risen dramatically to 2,021 in 2015, up from 347 in 2004. The access has been extended to minors and is used by those with psychiatric illnesses like depression. Invariably, some doctors have interpreted vague legal criteria more permissively than others.   

In Canada, the Criminal Code long outlawed the practice of so-called “physician-assisted dying” (or “euthanasia” or “assisted suicide,” depending on the era of debate or premises of the speaker) and the Supreme Court upheld this prohibition in 1993 by a 5-4 margin in the case of Rodriguez v British Columbia. Generations of law students learned about section 7 of the Charter through the searing story of Sue Rodriguez, who was suffering from ALS (amyotrophic lateral sclerosis, a neurodegenerative disease) and came to a courtroom seeking a more dignified way to die. She lost her appeal, and subsequently broke the law in getting help to end her life.

Twenty two final exams of 1L constitutional law later, in the 2015 case of Carter v Canada, the Supreme Court unanimously overturned the Rodriguez precedent. The Court recognized in the first paragraph of the judgment that a person should not be forced to make a “cruel” choice between suffering and suicide. That which cannot be done legally with a doctor is often done alone and dangerously. The Court held that physician-assisted dying is permissible for competent adults where “the person affected clearly consents to the termination of life” and “the person has a grievous and irremediable medical condition (including an illness, disease or disability) that causes enduring suffering that is intolerable to the individual...”

David Baker, LLB 1975, served as counsel for the Council of Canadians with Disabilities for both the Rodriguez and Carter cases. He also represented the Canadian Association for Community Living in Rodriguez. When the Rodriguez decision went the way it did, Baker “anticipated the issue would arise again,” he says. “It just wasn’t going away.”

In Carter, the Supreme Court punted the issue to Parliament to draft an appropriate law and navigate the veritable minefield of details. For example: should minors have a right to assisted death, such as in cases where they would never live to be adults? Should there be a waiting period between a person’s request and their death, in case they change their mind? Should a person diagnosed with a predictably degenerative disease like dementia be allowed to make an advanced request, before they lose their capacity to provide consent? Who should approve a patient request: individual doctors, or an administrative panel? Should suffering from psychiatric conditions like depression make someone eligible? Should it be sufficient that the insufferable condition be irremediable, or also that it be terminal?

After Carter but before Parliament passed a new law, a person could obtain assisted dying via court order. This process became most of the legal practice of Emma Carver, JD 2014, at Polley Faith LLP. She brought eight of the total of 12 physician-assisted dying cases in Ontario. “It has been deeply rewarding and enriching to meet the courageous individuals who sought the right to die with dignity,” she says. “I witnessed how important the right to die is to patients who are suffering intolerably—who often face the prospect of a painful, ugly death—and went from being a strong supporter of legalized physician-assisted dying to a staunch advocate for it.”

Lemmens keenly followed the debate before and since Carter, and observed that what becomes law results from a competition between narratives. Lemmens insists on the danger of surrendering to the most powerful emotional narrative, which tends to belong to mentally competent persons who are gravely suffering near the end of their lives and want to die. But there are other narratives. There are stories of traumatized families who think careless doctors oversaw the premature death of people in their most difficult moments. There are stories of troubled doctors who object to overzealous colleagues who are too quick to conclude a patient is competent and a case is irremediable. These are stories being told in Belgium, and Lemmens wants Canadians to hear them to make clear that the autonomy of a suffering individual should be balanced against the protection of the vulnerable. (The Supreme Court agrees that protection of the vulnerable is a legitimate goal in assisted dying legislation).    

Lemmens experienced these issues as a grandson before studying them as an academic. In the 1980s, he lost his grandmother to cancer, but not before doctors made an aggressive medical intervention to unnecessarily prolong her life—without her consent. Lemmens remembers a proud woman who wanted to die quickly in her own home, which informs his enduring belief in the importance of patient involvement in medical decision-making.

Yet this has not prevented Lemmens from detecting a paradox in the way the discourse about patient autonomy relates to the power of physicians. Since the Carter decision, Lemmens has watched the ascendance of a public narrative about the autonomy of patients to end their lives as they see fit. In practice, however, broader access to assisted dying is linked to increasing the power of physicians. In Belgium, for example, it is individual physicians who assess the eligibility of a patient for assisted death, and their competency in making that request. A second physician assessment is required, but, surprisingly, agreement with the first doctor is not a requirement. “In any profession there are zealots, people who are irresponsible, who are sloppy,” says Lemmens. “We are giving more power to individual doctors to end the life of people, and giving that power should concern us.”

“In any profession there are zealots, people who are irresponsible, who are sloppy,” says Lemmens. “We are giving more power to individual doctors to end the life of people, and giving that power should concern us.”

That is why Lemmens recommends that some kind of judicial process, like a specialized tribunal, oversee final approvals of patient requests, so that general norms could be enforced. He opposes advanced directives and access for people with psychiatric conditions, and supports a narrower definition of “grievous and irremediable medical condition.” On the whole, he worries that more “open-ended access” increases the threat to the vulnerable. He is troubled that Belgium’s vague law has led to assisted dying for “isolated, lonely people” and those experiencing “existential suffering”.

The Liberal government did not take all of Lemmens’ advice, but its proposed legislation introduced in April adopted a similarly narrow view of assisted dying. Notably, the draft legislation required that death be “reasonably foreseeable” for a patient to be eligible for assisted dying. This followed the approach of Quebec’s own legislation passed in 2015, but many observers have argued that it creates a restriction that is inconsistent with the Supreme Court’s ruling. Notably, it is not clear that Kay Carter, one of the successful plaintiffs before the Supreme Court, would have been eligible under this criterion. She suffered from spinal stenosis, where open spaces shrink and put pressure on the spinal cord—paralyzing and painful but not terminal. (In 2010 she ended her life with the assistance of a physician in Switzerland). Ms. Carter’s children immediately criticized the bill on the grounds that her mother would not have qualified. “I just don’t get it,” said her daughter.

After the Liberals’ draft bill was released, but before becoming law, the Alberta Court of Appeal ruled that the 2015 Carter judgment was not limited to terminal conditions. An Ontario Superior Court agreed. (The applicant in this Ontario case was represented by Carver).

Murray Rankin, LLB 1975, the NDP justice critic, argued that the new bill “would revoke the right to choose from an entire class of competent and suffering adult.” The venerable Peter Hogg, he of the constitutional law textbook, agreed with Rankin that the law was unconstitutional.

In June, the Senate dramatically removed the restriction that a person be suffering from a terminal condition, which set up a showdown with the House of Commons. However, the Liberal government and the Minister of Justice, Jody Wilson-Raybould, stood their ground, and the final version of the law maintained the restriction that eligibility required a reasonably foreseeable death. 

For Elizabeth Kurz, incoming 3L and research assistant to Lemmens, the media coverage throughout the process lacked subtlety because of its focus on the extreme positions on either side of the debate. Working with Lemmens changed her views on the nuances, if not her basic position. “I wouldn’t say I’ve changed my mind, but I hadn’t considered the issue in some contexts. I have learned that with statutory interpretation, you can have dramatic impacts if you aren’t careful, and legislation about physician-assisted dying can have powerful consequences.”

Ubaka Ogbogu, SJD 2014, an assistant professor at the University of Alberta’s law school and its Faculty of Pharmacy and Pharmaceutical Sciences, also played a prominent role in the assisted dying debate. He considers the scope of an exemption for conscientious objectors to the practice to be a thorny issue.

“Most public palliative healthcare beds are operated by Catholic owned- and operated- institutions,” he notes. “The province has suggested there is a right to conscientious objection, even extending to referrals.” Ogbogu has argued for debate as to whether public funds should support institutions that state a broad objection to assisted dying.

Lemmens, like Ogbogu, remains focused on what legal words come to mean in people’s lives. “Sometimes you have to look at abstract philosophical problems, and theoretically there may not be differences between this and that,” he says. “But sometimes you have to look at practicalities of death and dying. For example, it is easy to make a theoretical argument that mental health sufferers are competent to choose assisted dying. They can be competent, but people also recover from depression when they have quality care.”

In the end, Lemmens sees caution as the only responsible route. “In this debate people have focused on under-inclusion. I would say should be much more concerned about over-inclusion. This is about life and death. This is an area where we want to move prudently.”