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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.

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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.”

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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.”

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  • Dr. Ferrier is absolutely right. The US (can’t speak for Canada) needs to do all it can to help caregivers: respite care, adult day centers, home health care — do everything possible to give them a break. It would be great if Medicare or Medicare supplement plans would cover at least some of the costs. Make some kind of paid leave mandatory for caregivers of immediate family members. Even four weeks/year would help if you could take it in 1/2 day increments.

    And once long-term care is unavoidable, do everything possible to make residents feel valuable and loved. Just because your loved one doesn’t know your name any longer or doesn’t appear to recognize you, doesn’t mean it’s true. My 61-year old husband has been in long-term care for almost two years due to his frontotemporal degeneration (dementia); it shares features with Alzheimer’s but is a separate illness. There’s definitely been a decline. He still knows my name, but we’re not sure he realizes he knows I’m his wife. But he still lives in the moment and we can still enjoy each other on a good day. His neurologist (a nationally-recognized expert in these illnesses says we do not know exactly what he or any other patient can perceive. They may understand more than we recognize but just can’t tell us.

    A friend has his wife in the same facility. She is older than him and has Alzheimer’s, is wheelchair-dependent, has to be fed pureed food by hand, and can’t say a word. (My husband can still walk, get dressed with help, eat on his own, sometimes respond to simple directions, and sometimes answer simple yes/no questions.) This guy’s wife doesn’t know my name, but we think she knows my voice and my face. I can usually get her to laugh. And she has the most dedicated husband in the world. She has a good life and so does my husband.

    All that to say, I totally oppose assisted suicide/euthanasia (AS/E) in every situation. It’s always a permanent solution for a problem that can be improved greatly, if not totally alleviated.

    But I oppose AS/E for people with dementia 100 times more even if they have signed an advanced directive. Why?

    1) We have no way of knowing if they would want to change their mind if they specify I want to die when…I can no longer…whatever.

    2) It could lead to exploitation. “Mom, you said you signed that paper that you wanted to die when you couldn’t drive, read, and needed to use Depends at night. Well, it’s time now.” What if that’s true, but the real motivation is to bump Mom off so she doesn’t spend our inheritance on a long-term care facility. Or she’s just becoming difficult to deal with and you want her out of your life. Better to say, “Well, you signed this paper…Is this something you still want to do now? Would you like to hold off for now instead?”

    3) It could lead to the exploitation of the poor and middle class. Great way to save $$$ on Medicaid for nursing home care if you can get them to sign something that says you get only three years of Medicaid nursing home funding. After that, you’ve got 30 days for someone to take you out of here, or what’s it going to be: the needle or the pills? Unless you have unlimited resources, middle-class families can’t pay nursing home or assisted living bills indefinitely, even with long-term care insurance.

    4) It sends people with dementia (as well as other people with disabilities) that yeah, you’re right. You’re live isn’t worth much any more. Better to die now and get out of the way.

    I was recently asked what I’d do if my husband changed his mind about AS/E (he has also opposed it), was able to get it approved even given his current cognitive state, and it was legal or I could get him to a place where it was legal, would I approve it as his health care power of attorney?

    My answer was no. But one of his sisters is his alternate power of attorney and I know she’d approve it in a heartbeat. I’d turn power of attorney over to her and she could approve it. It would break my heart; not sure I’d ever get over it.

  • 4. WHAT ARE THE BEST METHODS FOR DRAWING LIFE TO A CLOSE?

    The proxies have a variety of measures they can select
    to ensure that their patient has a meaningful, peaceful, & pain-free death.

    If any organs are going to be donated after death,
    then such evaluations should take place before the process of dying begins.

    Usually all life-support systems will simply be discontinued.
    This includes all machines attached to the patient.
    Food and water provided by any means will be discontinued.
    All medications (except those needed for comfort) will be withdrawn.

    Some forms of sedation might be relevant,
    especially if the patient is suffering pain for any reason.
    And terminal sedation might be appropriate if it seems best
    to keep the patient completely unconscious until death occurs.

    In Alzheimer’s patients who have no other major medical problems,
    the cause of death should be recorded as progressive Alzheimer’s disease
    and the medical methods of managing dying should be named:
    withdrawing a feeding-tube, ending all life-prolonging medical treatments,
    increasing symptom-controling drugs, beginning terminal sedation, etc.
    The complete medical record will describe the mental decline of the patient
    because of Alzheimer’s disease or some other cause of dementia.

    A few other medical facts might be relevant for the death-certificate.

    If the safeguards introduced above have been fulfilled,
    then the specific last steps towards death will not be as important
    as the process of making a set of wise, end-of-life medical choices.

    When properly decided, a timely death might be the best end-of-life choice
    for any of us who might be struck by Alzheimer’s disease.
    Often the choice is not between life and death
    but between dying now and dying later.
    If we suffer advanced dementia, when is the best time to die?

    • If someone *develops*, rather than *suffers from* advanced dementia, the time to die is where natural death occurs, not a time that a board or committee says it is. Of course, a person’s health care power of attorney should honor his/her advanced directive, like DNR, no feeding tube, etc. That’s different.

      Please drop the pejorative term *suffers*. As long as a person with advanced dementia receives good care, knows he or she is loved, and enjoys simple pleasures like fresh air, music, human touch, and soothing voices, and is not in pain — we really don’t whether he or she is suffering, do we? No one’s been able to come back and tell us, have they? We think they suffer, but maybe they’re just fine.

  • I watched 3 generations of my family (5 people) die of Dementia and at the first sign, while I am still capable, I’m committing suicide. I will not put my family through what I experienced.
    I am furious that the government has forced me to make that decision. I am furious that I have to resort to the horror of suicide because they don’t respect my rights.

  • MAKING END-0F-LIFE DECISIONS
    FOR PATIENTS WITH ALZHEIMER’S DISEASE

    Wise law would authorize future patients
    to specify the conditions under which they would request death.
    And they would have to appoint proxies
    to interpret and enforce their wishes.
    Then, when mental decline prevents the patient
    from making any further medical decisions,
    the proxies are fully empowered
    to make the same decisions for their patient.

    The laws would have to be expanded
    to include this comprehensive proxy-power.

    All of the medical facts and recommendations
    should be taken into account by the proxies.
    They might also consult others in the family
    and even religious advisers to see if death at this time
    would be better than waiting for death as some later time.

    Here are 15 safeguards, some of which might be included
    in any new legislation either at the national level or in the provinces.

    And we should remind ourselves that life-ending decisions
    are already being made for patients with Alzheimer’s disease.
    Gentle poison is not the only method of dying.

    What we lack is a set of public safeguards
    for making medical decisions for patients
    who have lost the capacity to make their own medical choices.

    https://s3.amazonaws.com/aws-website-jamesleonardpark—freelibrary-3puxk/CY-MD-ALZ.html

    • “And we should remind ourselves that life-ending decisions
      are already being made for patients with Alzheimer’s disease.”

      Such as for example? Can you be more specific about what you mean by this please?

  • We are very sentimental about death and dying, generally speaking, here in North America. To allow assisted death for someone who is still conscious and cheerful certainly seems immoral; but do we have to wait until someone has suffered for years and/or is in excruciating pain? Each case needs to be assessed individually, and that’s where it gets too complex for governments and organizations, ill-equipped to provide anything but umbrella solutions.

    As caregiver to my parents, both with dementia and Alzheimer’s, I can see both sides of the argument. As a family, we are doing everything we can to ensure that they each receive the best quality-of-life possible, and we have had NO ASSISTANCE from government, because the options available to us are ridiculously inconvenient and not suitable. My father is stable and happy; my mother (Alzheimer’s and aphasia) is emotionally distressed and deteriorating. She has expressed a desire to “go”, but of course there’s no way of knowing if she really does want to die, or if she’s just tired of battling the changes going on in her brain, and her feelings of isolation as a result of not being able to communicate with us very well.

    Let’s look at providing more assistance to family caregivers, more training to professional caregivers, more caregivers PERIOD (there’s going to be a huge need) and doctors who understand the nature of dementia and who can be more helpful without prescribing undesirable drugs. Drugs are not the answer.

    I want the option for assisted dying if I am diagnosed with Alzheimer’s – I have no fear of leaving this life and do not want to spend my last decade in and out of awareness. We need to address this so that each individual can make an informed choice, and the system needs to be adjusted to take into account a wide range of possibilities.

    • “Let’s look at providing more assistance to family caregivers, more training to professional caregivers, more caregivers PERIOD (there’s going to be a huge need) and doctors who understand the nature of dementia and who can be more helpful without prescribing undesirable drugs. Drugs are not the answer. ”
      “…and the system needs to be adjusted to take into account a wide range of possibilities.”

      Bingo all counts.

    • “More caregivers, training, etc. etc.” Like that’s going to happen! Alzheimers is not a new issue and many scandals re. substandard care for sufferers have been reported for years. And it will continue to be reported because, political elections are not won on promises to increase government spending. At least, give us the freedom to choose!

  • Thanks for a balanced story on a highly complex issue. My mother, who lived with Alzheimer disease (coincidentally in the province of Quebec), died on August 17, 2016, after complications resulting from a preventable fall. I’ve written extensively on the far-less-than-adequate care she received during the last four years of her life; my most recent piece having been posted here: http://myalzheimersstory.com/2017/07/27/one-year-ago-yesterday/

    My mother was a fighter who I feel certain would never have opted for assisted dying. However, I believe the sheer numbers of people who will live with Alzheimer disease in the future will force society to allow people who wish to die rather than to live with this disease to have those wishes acted upon in the event they contract the disease.

    Our healthcare systems do not have the capacity to deal with people who live with Alzheimer disease and related dementias now, and many languish neglected and abused in long-term “care” facilities that are more like warehouses where care and compassion are both in short supply. The situation is bound to worsen unless drastic change takes place and it simply isn’t happening. As a result, I believe euthanasia will become an imperative not an option. Our overburdened, overwhelmed and broken systems will preclude the luxury of choice.

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