ONTREAL — The prosecution arrived first, in black robes with white bibs, wheeling boxes of evidence behind them.
Then came the defense team, public defenders, also in robes. There was the accused, Michel Cadotte, 56, who sometimes hung his pen or pencil from the collar of his T-shirt as he walked slowly to and from his pre-trial hearing this week. There was his sister. And there was the sister of the woman that Cadotte allegedly killed.
It might seem strange for them to have arrived together, but they are family. Cadotte was charged with the second-degree murder of his wife of 19 years, Jocelyne Lizotte, who had Alzheimer’s disease. His lawyers have argued that it was an act of compassion, and his late wife’s sister testified at his bail hearing in June so that he could be released.
The judge imposed a publication ban on any of the evidence presented during this week’s hearing. But the bare bones of the case are already familiar all over the province of Québec, where they have helped spark a debate over whether to liberalize the province’s new physician-assisted dying law.
Cadotte had been caring for his wife since her symptoms appeared in 2006. The work, he said, had caused him to lose jobs. He’d expressed exhaustion, and worry that the center where she ended up living was not providing proper support. She had reportedly made a request for medical aid-in-dying, which neither Québécois nor Canadian law would permit, because her Alzheimer’s meant she was not legally competent.
Then, in February, he allegedly held a pillow to her face. His subsequent note on Facebook had been splashed all over the news: “I’ve cracked, nobody asked how I’m doing, but now you know, I’ve consented to her request of assistance in dying, I’m waiting for the police.”
Now, Québec legislators are thinking of expanding the province’s law permitting medical assistance in dying, to allow patients who are diagnosed with a disease like Alzheimer’s to make an advance request to end their lives, before their cognitive abilities have slipped away. As of 2016, an estimated 264,000 Canadians have dementia, with around 25,000 more cases diagnosed every year, according to the Alzheimer Society of Canada, and many caregivers wish that their loved one had had the option to choose how and when they wanted to end their life, before they lost the ability to make that kind of choice. So they empathized with Cadotte.
“I think it gave a public face to discussions that people have in their living rooms, or among family,” said Dr. Alain Naud, who practices family medicine and palliative care at Université Laval’s teaching hospitals, in Québec City, and who has been a proponent of medical aid-in-dying.
Some, though, worry that people were reading the wrong issues into the Cadotte case. Dr. Catherine Ferrier, president of the Physicians’ Alliance against Euthanasia, and a physician in geriatric medicine at the McGill University Health Center, was surprised that discussion quickly zeroed in on making medical aid-in-dying more accessible.
“When I heard this story, I thought, ‘This has nothing to do with my euthanasia work, it has to do with my geriatrics work,’” she said. “It has to do with providing proper care, it has to do with providing proper support for caregivers so they don’t flip out. … How come the whole world isn’t saying, ‘Let’s look after people properly?’”
‘The issue was personal’
One man who famously made the leap from the murder accusation to a change in legislation was a politician at the provincial level who represents Granby, a town about an hour’s drive from Montreal. His name is François Bonnardel, and for him, the issue was personal — so personal, in fact, that he choked up as he gave a press conference on it a few days after Lizotte’s death, and motioned for a colleague to take his place in front of the mic.
His mother had been diagnosed with Alzheimer’s around 15 years ago. When he first began to notice what looked like memory troubles, he had difficulty bringing up the idea of going for cognitive tests, let alone starting a discussion about end-of-life issues.
“It’s hard to say to your mother, ‘Mom, I think you have memory problems, I think you need to go in for a consult,” he told STAT. “She thought I was going to place her in an asylum. She told me, ‘I’m not crazy.’ So it was very difficult to say, when all that was starting, ‘Mom, one day, if you are in this specific state of mind, would you like this specific thing to happen to you?’ And advance directives for medical aid-in-dying didn’t exist 15 years ago.”
They don’t exist now, either, in Québec or in the rest of Canada. Québec’s medical aid-in-dying law had taken effect in December 2015, and required that the patient be “at the end of life,” while the the federal law only took effect in June 2016, and required that the patient’s “natural death has become reasonably foreseeable.”
Neither law allowed such a request to be made in advance. The idea had been on Bonnardel’s mind, though. In January, he wrote a note on Facebook for his mother’s 80th birthday, about her descent into dementia, and watched stories pour in from others with similar experiences. It was news of the Cadotte case that caused him to act.
“I would like, given what we have seen of a man, a husband who ended the life of his wife, for us to be able to open this debate,” he said in the press conference later that week.
“She no longer laughs, she no longer appreciates life, she no longer speaks to me or recognizes me. You say to yourself, ‘Is there still anything for her on this earth?’” he told STAT recently. “I tell my son that I will sign that document if one day it exists. I don’t want for my life to end like my mother’s.”
“I’ve cracked, nobody asked how I’m doing, but now you know, I’ve consented to her request of assistance in dying, I’m waiting for the police.”
Michel Cadotte's Facebook message
The next month, the provincial health minister promised, among other things, to convene a group of experts to examine the idea.
The promise might have created a sense of déjà vu. After all, the idea of allowing Alzheimer’s patients to make a request in advance, while they are still competent, for medical aid-in-dying, had already been discussed by a few different committees, appointed by different levels of government.
One 2012 report by Québécois legislators listed the question under “complex issues that require deeper reflection.”
A 2015 report by academics, advocates, and officials recommended that the federal government allow for that kind of request in advance, as did a 2016 report by senators and members of parliament from the three major Canadian parties.
But when the federal law passed in June 2016, medical assistance in dying by advance request was not permitted.
“The federal government ignored that advice and didn’t put that in the legislation,” said Maureen Taylor, a physician assistant and advocate for medical aid-in-dying, who co-chaired the advisory group that authored the 2015 report.
The federal law itself, though, promised to revisit the issue, which is a “signal of how important” it is to Canadians, explained Jocelyn Downie, a professor in the departments of medicine and law at Dalhousie University, in Halifax, who was also part of the advisory group.
The U.S. and Dutch models
By American standards, the Canadian and Québécois legislation is already considered progressive — or unethical, depending on your point of view. In Canada, a doctor is allowed to administer life-ending drugs, whereas in Washington, D.C. and the six American states where medical aid-in-dying is permitted the patient is required take them. Experts say that medical aid-in-dying by advance request has not often come up in policy discussions.
“Making the decision and doing the action: That is what makes it acceptable, that is what makes it ethical,” said Barbara Coombs Lee, president of the American nonprofit Compassion & Choices. “Because there is no question that this is the decision that the person is making right now, and they are doing it themselves.”
Some Canadian activists, though, are very vocal that they would like the choice, for themselves and for others, to end their lives when they reach certain stages of incapacity.
Yet even in the Netherlands, where such advance requests are legal, they remain rare and controversial.
In 2016, there were around 141 cases of euthanasia because of dementia, but that is against the backdrop of around 6,000 cases, said Suzanne van de Vathorst, a professor specializing in end-of-life issues at the Academic Medical Center, in Amsterdam, and they mostly involved people wanting to end their lives before they lost competence.
“Most of those cases were people in the early stages of dementia,” she said. “The implication is that they suffer from the prospect of the deterioration that’s waiting for them, knowing that it will only get worse, that it will never get better, that they will disintegrate as a person.”
She said that last year only a handful of people in the Netherlands underwent euthanasia while in the later stages of dementia because of a request they had made earlier, and of those who did, one person’s case is under review, because the patient’s life was ended despite instructions that may not have been sufficiently clear.
“In reality we see that this is hardly executed … because doctors still want to be able to talk to the patient before they help them to die,” said Stefanie Michelis, a communications officer for the Netherlands office of the nonprofit Right to Die.
As van de Vathorst put it, “You can say ‘OK, we changed the law, we now make it possible,’ but you still need people to actually do it, and if they are not there, your law is useless.”
Finding answers to hard questions
Whether doctors in Québec will be comfortable providing medical aid-in-dying for those who have made the request in advance is still up in the air — as is much about the laws as they stand now. Both the Québécois and the federal laws are already being challenged in court by patients with incurable illnesses who would like to end their lives, but who aren’t currently eligible to do so because their deaths may not be imminent.
If the province of Québec were to rewrite its legislation without a change at the federal level, medical assistance in dying by advance request might still be against criminal law. “I don’t see how a physician who provides medical assistance in dying in Québec to someone through an advance request would not face criminal liability,” said Downie, the professor of law and medicine at Dalhousie. But she added, “It wouldn’t surprise me at all if they said yes to making advance requests for medical aid-in-dying, and then they would have to navigate those constitutional waters.”
Although the Alzheimer Society of Canada’s official position is that medical assistance in dying should be provided only if the person is competent at the time, some caregivers don’t agree.
One caregiver told STAT, of her husband with Alzheimer’s, “Now, I’m asking the doctor to give him more morphine so he doesn’t suffer, but it’s delicate. I know he wouldn’t want to suffer the way he is suffering. When you are confronted with that situation, you want to have access to physician-assisted dying.”
But she also expressed worry that her husband was not getting proper care — and for some doctors, that’s a red flag. “To make sure that patients have access to palliative care and hospice care, home equipment — that’s important, because people will articulate an interest in physician-assisted dying because of unmet needs,” said Dr. Laura Petrillo, a palliative care physician at the San Francisco V.A. Medical Center.
Allowing medical aid-in-dying by advance request for Alzheimer’s patients also entails, in the end, finding answers for some of the hardest questions, such as what it means to live a worthwhile life. People without disabilities often predict that, with them, quality of life would be poor, but reports from those with disabilities don’t bear that out; they often say their quality of life is good — a phenomenon known as the disability paradox.
“When I heard this story, I thought … it has to do with providing proper care, it has to do with providing proper support for caregivers so they don’t flip out”
Dr. Catherine Ferrier, president of Physicians' Alliance against Euthanasia
And the question of who might interpret such an advance request in Québec is not completely settled. Naud, the palliative care and family doctor, said it would have to be the physician, while Bonnardel, the politician, suggested that it would be family members interpreting what the patient meant when they put on paper at what point they want to end life.
“You can imagine the stress for families. You’re sitting around saying, ‘Well, grandma said she wanted to end her life when she could no longer feed herself. But here she is happy as a clam, sitting in the nursing home singing show tunes. Is this when I decide to end her life?'” said Petrillo, about that hypothetical situation of deciding when euthanasia should take place.
For some, the fact that you may no longer be the person you once were is the reason they hope they will be able to choose when to end their lives. For others, the potential for abuse is just too great.
“Long-term care is expensive, if you do it privately, and death is cheap. It sounds very clear to all the baby boomers who say, ‘I wouldn’t want to live like that,’ but there are some terrible, terrible things that could be played out,” said Ferrier, the president of Physicians’ Alliance against Euthanasia.
For the man who helped spark some of these recent discussions, their conclusions may be moot. Even Bonnardel, who has spoken publicly about the case of Cadotte, has put it bluntly. “The law comes first,” he said. “Even if she was his wife, even if she had Alzheimer’s, even if she signed a document saying, ‘I authorize you to inject me, to give me a pill.’”
Bonnardel paused. For Cadotte, there would be many more days spent in courtrooms, even as the debate he has helped spur ricochets from politician to politician, committee to committee, sinking and resurfacing with the currents of each news cycle.
“I don’t know,” Bonnardel said after a bit. “I’m not a lawyer.”