How we are (still) dying

It has been a year and a half since the law passed permitting physician-assisted death in Canada, and more than two since the landmark 2015 Supreme Court case Carter v. Canada, which struck down the Criminal Code’s prohibitions on medically assisted dying. The issue remains fraught with logistical and ethical challenges. Questions swirl about access, cases involving minors or debilitating mental illnesses, and institutions that refuse to provide the service on religious grounds.

Sandra Martin’s award-winning book A Good Death: Making the Most of Our Final Choices explored these thorny questions with depth and nuance. A long-time journalist who has covered arts and other subjects for the Globe and Mail, she has become a leading voice on assisted dying.

Wayne Sumner is a professor emeritus of philosophy at the University of Toronto and one of the world’s preeminent moral philosophers. The author of books including Assisted Death: A Study in Ethics and Law, he was an expert witness for the B.C. Civil Liberties Association in its ultimately successful 2011 constitutional challenge to the existing law.

This is an edited transcript of their conversation.

◆

Martin: You’re a philosopher. I’m a journalist. We come at assisted dying differently. What got you interested?

Sumner: I had an interest in bioethical issues, and my first book was on abortion. Then I began teaching courses that included issues around death and dying. The ethical and legal issues are fascinating, difficult, and complex, so I wrote the book collecting my thoughts. Then I transitioned from having a scholarly interest to having a personal interest—the older I got, the more investment I had in it. And my book came out in July 2011, just as the B.C. Civil Liberties Association was putting together its constitutional challenge, so I crossed over the boundary between analysis and advocacy.

Martin: I was the obituary writer at the Globe, which meant I was dealing with death all the time. As time progressed I could see that people were dying in different ways, so I became interested in why people would voluntarily end their lives. And I was watching the beginnings of a doctor-led movement in Quebec, where the province was trying to circumvent the federal law by arguing that health care was a provincial responsibility and that dying—end-of-life care—was part of health care.

Sumner: Quebec’s a bit of an outlier. We had become accustomed to the fact that some of the strongest opposition to legalizing physician-assisted dying came from the medical community. In Quebec, that got turned on its head because the Collège des médecins du Québec really led the fight to legalize. But on top of that, it required the parties in the Quebec National Assembly to come together to bring this forward. There are other jurisdictions in which the law got changed because of a legislative initiative, including Belgium and Vermont. But it was not going to happen that way in the rest of Canada. I don’t think any other province would have taken the same initiative; Quebec stands alone in terms of its relationship to the federal government.

Martin: And because Quebec has become very secular. I think there was another factor: a rookie Parti Québécois backbencher named Véronique Hivon introduced a motion [with all-party support] that started the legislative ball rolling. Justin Trudeau, as the leader of the third party in the House of Commons, tried to do something similar in 2015 after the Carter ruling—but it was blocked. But, in Quebec, the all-party process actually went forward and legislation passed in June 2014.

Sumner: Oddly, the Quebec law only authorized euthanasia and not physician-assisted suicide.

Martin: Well, Quebec set up a consultative process in which they went around the province talking to patients—they didn’t just let lobbyists come in and push for their points of view. And what came back was that people wanted euthanasia—they wanted a doctor involved.

Sumner: In the rest of the country, there’s absolutely no way this would have happened through any initiative in Parliament. Every party was too afraid. So the fact is, we owe a change in the law not to Justin Trudeau, but to his father, who enacted the Charter of Rights and Freedoms. Had there been no Charter, there would have been no Charter challenge, and assisted dying would still be unlawful across the country outside of Quebec.

Martin: And you might have had death tourism in Quebec.

Sumner: Yes, that’s right. So it was judicially driven, not legislatively driven, which makes us almost unique in the world.

Martin: And what became really important was how the Charter was interpreted, particularly Section 7, with respect to “life, liberty, and security of the person.” Canada was going to cloak itself in the idea that “We, the state, are defending life. We are protecting people from being arbitrarily killed.” And Joseph Arvay, the constitutional lawyer who argued the Carter challenge, said, wait a minute. Because there’s no law against suicide—there’s only a law against assisting a suicide—people who are grievously ill have to kill themselves before they want to die. If they don’t, they might need assistance and that is prohibited. Therefore, they are actually being denied their right to life.

Sumner: It’s a brilliant argument.

Martin: Was it yours?

Sumner: No, I don’t think it was mine. I wrote about it later and called it the pro-life argument for physician-assisted dying, but I can’t claim credit for it.

Martin: I think the credit goes to Arvay. The real point is Parliament passed a Medical Assistance in Dying Law (MAID) in June 2016. It was much more restrictive than Carter, and it came into effect immediately. How to make it work was the issue. The process was different from, say, the Netherlands, where they had had more than 30 years of doctors doing what Morgentaler had done with abortion in Quebec—helping a patient die, then confessing to the authorities, pleading a defence of necessity: My patient was suffering. Yes, I have a duty to protect life, but my duty to my patient is greater. That was a long, messy process, but when they got the law, they already had the practice on the ground.

By contrast, we had a situation where everybody was saying, what now? Particularly doctors. Everybody assumed that because palliative care doctors specialize in end of life, they would do it. Well, the Canadian Society of Palliative Care Physicians announced in October 2015 they were having nothing to do with physician-assisted death.

Sumner: And it’s all complicated by our federal structure. The criminal law is determined by the federal government, but the administration of health services is governed by the provinces. Much of the actual process on the ground was going to be determined by the provincial and territorial ministries of health, and none of that had happened.

Take oversight. Every other jurisdiction in the world that has legalized these practices has some kind of oversight process whereby compliance with the terms of the law can be determined. Each province has to decide how it’s going to do this. Who determines whether or not all of the processes have been followed and the criteria have been satisfied in individual cases? Is that the problem of the ministry of health? The colleges? The coroner? That is still in the process of being invented.

As for the law, there was this requirement that natural death must be reasonably foreseeable. The court never seemed to envision anything like a terminal condition requirement. Then suddenly the government is imposing this restriction, which is so vague.

Martin: It also imposes cruel conditions on a lot of patients. Under the law, patients have to persuade two separate doctors (or a nurse practitioner) that their suffering is intolerable and their death is reasonably foreseeable; there have to be independent witness statements and a ten-day period of reflection (although the time period may be shortened in extraordinary circumstances). Often, there were patients who didn’t qualify because they were so close to death they were going in and out of lucidity, or they had to go off their pain medication to be lucid enough to affirm consent. Last year, an Ontario woman known only as A.B., who was 77 and had incapacitating osteoarthritis among other health problems, was refused MAID because one of her doctors feared prosecution on the ground that her death wasn’t imminent. She went to court seeking clarity on the reasonably foreseeable death issue. The Ontario judge said it’s up to doctors to say whether you are entitled, by the multiplicity of your ailments, to a reasonable death; you don’t have to be terminal. So that was a little chink in the law.

Sumner: It’s just a chink, but you can’t criticize doctors for being cautious—they are technically subject to prosecution if they proceed with a case that doesn’t fit the criteria under the existing law.

Martin: Although no one has been prosecuted.

Sumner: No, and it’s unlikely, especially when we’re talking about a very grey area. But a good many physicians are likely to interpret it quite conservatively. The federal government has at no point indicated any willingness to rethink or reconsider. So if that gets changed, it’s going to be through the courts and there is already a constitutional challenge: the Julia Lamb case [the 25-year-old B.C. woman with spinal muscular atrophy who is arguing that the current law will sentence her to decades of suffering].

Martin: Which, in fact, was filed almost immediately after the law was passed.

Sumner: So that is going to have to work its way through the judicial system, and if and when it reaches the Supreme Court, the reasonably foreseeable clause is very likely to be struck down. But that could take years.

Martin: In the meantime, individual doctors on the ground may interpret the law as they wish.

Sumner: Yes. There remain three other important issues. The law imposed a limit of at least 18 years of age, thereby excluding minors, including mature minors—16- and 17-year-olds. Second, it required that a patient who requests physician-assisted dying be able to consent to the procedure at the time at which it’s administered, which rules out any kind of advance requests—

Martin: For people such as dementia patients.

Sumner: That’s right. So in the early stages of Alzheimer’s, when you’re still lucid and have full decisional capacity, you’re not able to execute a written instrument that would request a physician-assisted death when you reach some further stage in which you’ve lost capacity. Third, it also excluded illnesses that are primarily psychiatric in nature. Now, for all three of those issues, the government agreed to a further study and to reconsider after a certain period of time.

Martin: Which is at the end of 2018. And the panels studying this don’t have to make any recommendations, or consult with Canadians.

Sumner: And that is, as far as I am aware, our only currently existing avenue for changing or relaxing those restrictions. I’ll speak personally on this just for a moment: I think imposing the restriction to be at least 18 was arbitrary. It makes much more sense to determine eligibility on the basis of decisional capacity. Likewise with psychiatric illnesses—patients who present with primarily psychiatric illnesses are eligible for physician-assisted death in the Netherlands, Belgium, and Switzerland. I think again the exclusion was arbitrary and probably wouldn’t withstand a judicial challenge.

Martin: It’s allowed under Carter, and was tested and succeeded at two levels of the Alberta court system before MAID gained royal assent, so yes it would likely fail in a judicial challenge.

Sumner: That’s right. But I think the toughest one is advance requests.

Martin: I do, too. And that’s the one that most people want, because of the aging demographic. In fact, the Canadian Medical Association, which had been adamant in its opposition to physician-assisted dying, changed its policy to allow doctors to follow their conscience in early 2015, just before the Carter decision came down. But at a meeting of the CMA last August, a poll of delegates showed that they supported allowing advance directives (83 percent) and mature minors (67 percent). They were less interested in allowing assisted death for patients whose sole problem is mental illness (51 percent). But no matter how many doctors say, I support this, we should have it, that doesn’t mean they’re going to provide assistance in dying.

Sumner: I was quite surprised by the level of support for advance requests because doctors in general tend to be quite skeptical about advance directives and advance refusals of treatment, which is the existing regime. Again, there are jurisdictions like the Netherlands that, in principle at least, allow patients to make advance requests, although there have been very few actual cases.

Martin: My understanding from talking with doctors who aren’t happy about this is that it’s really hard to know. The family may be suffering, but is the patient suffering?

Sumner: There are very, very hard cases in that territory, mostly involving dementia patients who have executed these kinds of advance directives, but when they begin to hit the stages of their illness they themselves had anticipated, they don’t seem to be in any way suffering or unhappy. There are also easy cases: Somebody with full decisional capacity has requested an assisted death, they’re in the waiting period after which they’ll have it administered, and they suffer a stroke during that time and they lose capacity. Nothing else has changed except now they can’t consent. Under the current law, they would not be able to get what they want.

Martin: Should we talk about faith-based institutions and duty to refer? People who arrive by ambulance to the nearest hospital are being denied a legal medical service.

Sumner: Not only is it a legal medical service, but these are publicly funded institutions that are refusing to provide patients with a legal service. To my mind there should be no exemption for faith-based institutions in providing this kind of access.

Martin: Why couldn’t a patient who was grievously ill and living in a publicly funded faith-based facility, which is technically that person’s home, argue under Section 7 that they are being denied their right to life—as Arvay argued in Carter? Why wouldn’t a Section 7 argument be available to a patient? And conversely, why wouldn’t a Section 7 argument be available to doctors who are denied the right to provide legal services to their patients?

Sumner: Well, if it were challenged in the courts, it would be a contest between a patient’s rights under Section 7 and the freedom of conscience or freedom of religion provision in the Charter as well.

Martin: But there’s no freedom of religion provision for institutions.

Sumner: That’s what I was about to say. I think this plays out differently for individuals, though it’s not entirely clear that a doctor’s right to freedom of religion would prevail over the rights of patients, if this were ever adjudicated by a court. But the Supreme Court did go out of its way to say you had to balance these somehow. So let’s assume that doctors have a secure legal right to refuse to provide this practice, which doesn’t apply to institutions at all. How this would play out in the framework of a judicial challenge, I’m not at all sure.

Martin: I wanted to get back to something you talked about, and that was advocacy, because people have said this to me: Aren’t you a journalist? Why aren’t you presenting the other side? I thought about that a lot. I realized that the difference is: I’m advocating for choice. What is the opposite of choice? No choice. Is that a conflict? I don’t think so.

Sumner: What I hear you saying is that you decided the issue was clear cut.

Martin: Well, yeah. I do respect the right of doctors to have a conscientious objection, but not publicly funded institutions.

Sumner: Just for the record, I don’t support the right of conscientious objection by doctors, but it’s a closed issue legally.

Martin: Of an individual doctor?

Sumner: Yes, I don’t think they should be able to object—

Martin: To a legally provided service—

Sumner: Not just a legally provided service, but one in which the interest of the patient is so weighty. I think the interest of the patient in access to physician-assisted death is much more significant than any erosion of conscience rights of a physician. But that’s just me.

Martin: One of the things that changed the access question for abortion was medicalized abortions, where you’re given a pill. I think if we get the appropriate drugs that people can administer themselves that are effective and quick-acting, rather than having to give themselves an intravenous, that may well allow a lot of people to circumvent the access issue.

Sumner: It’s not going to solve the problem because some people who want access to physician-assisted death are already going to be institutionalized, in a hospital, on an IV. But you’re right: it may liberate many others from dependence on any kind of facility. They can die at home if they wish.

Martin: Even if that home is a facility. I think that all of these interim measures are about changing people’s attitudes and the culture in ways that make it more likely that a larger legal change could be instituted.

Sumner: We are so far from the end of this story. These are early days for the development of infrastructure, processes, culture around assisted dying. It will take probably a decade or so before the dust settles. Meanwhile we do have significant numbers of patients who are availing themselves of this.

Martin: It’s hard to guess exactly how many, but it’s more than 2,000, and some people say 2,500. But of course the population is aging, so I want to say to you: Stay healthy!