When Perry MacDonald heard that Canadian author
Robert Munsch had requested
Medical Assistance in Dying (MAID) after his diagnoses with dementia and Parkinson’s disease, it touched a nerve.
Munsch recently explained to the New York Times that,
under Canadian law
, recipients of MAID must be able to actively consent on the day of their death. “I have to pick the moment when I can still ask for it,” he said. If he waited too long, he added, talking to his wife, “you’re stuck with me being a lump.”
Government regulations are clear: “The person must be given an opportunity to withdraw consent and must expressly confirm their consent immediately before receiving MAID.”
MacDonald is familiar with watching dementia take a loved one. Three months ago, his brother died after living with the disease for almost two decades.
“He was only 45 when he got dementia, and he just passed a few months ago at 63,” says MacDonald.
His brother had not applied for MAID, but MacDonald’s point is that it wouldn’t have mattered under current law, because at the end of his life, he wasn’t of sound enough mind to consent to the procedure. Instead, he was put into palliative care, and taken off food and water.
It took him eight days to die.
“Eight days him thrashing around on a bed, drying before he dehydrated to death,” MacDonald remembers. “With my mother, his kids and his wife there, for eight days.” He said his mother asked doctors to increase the morphine he was receiving. They refused on the grounds that it would hasten his death. “It’s moronic.”
A day or two, even three, he says, would have been different. “I would have been just a typical Canadian, and I would have walked away from it. I just would have said, ‘Holy cow, that was a rough go, but I’m glad he’s no longer suffering,’ and I would have went off into my life.”
But those five extra days gave him time to think: “There’s got to be a better way.”
“It wouldn’t leave my mind. I’m like, this is happening freaking everywhere. And then what about all the Alzheimer’s patients? Even if it’s only a couple of days or three days, they go out the same way, when, if they could ask for MAID, that’s done so peacefully and gentle and with dignity, and the family could be around, it could be a little bit planned.”
He adds: “So afterwards I started thinking, OK, you know what? I’m going to do something about this. Like, I truly believe that he survived from day three to day eight to send a message.”
MacDonald is now the force behind
Update MAID Laws, Canada
, a website that introduces itself with the phrase: “We support MAID. We just want the option to plan ahead.”
The site and its petition argue that those who apply for MAID should be able to provide advanced consent so that, if they lose the ability to confirm the procedure on the day, their pre-signed document can speak for them. It also says Canadians should be allowed to sign up for MAID before they are diagnosed with dementia, noting that half of those with the condition are already past the point of giving consent when diagnosed.
In fact, the first part of that change has already occurred — not in Alberta, where MacDonald resides and where his brother died, but in Quebec.
Last autumn, that province
adopted a law
to allow people with a serious and incurable illness, including Alzheimer’s, to make early requests for MAID. The advance requests mean a person with an illness that will eventually leave them unable to grant consent can agree to receive a medically assisted death when their condition worsens, months or even years in the future.
“Quebec doesn’t have it quite right yet, but they’re a step ahead with the advanced request,” says MacDonald. “That’s a step in the right direction.” He’d still like to see the option to apply for MAID — or a possible MAID — even before a life-ending diagnosis.
The
Montreal Gazette reported
that, from Oct. 30 last year, when Quebec’s new provisions took effect, to Sept. 4, some 1,425 advance requests for MAID had been added to a registry in the province. An additional 179 requests were rejected.
But MacDonald’s “step in the right direction” is very concerning to Trudo Lemmens, a law professor and bioethicist at the University of Toronto.
“We can understand that people are afraid of what will happen to them,” he says. “And there is this kind of discourse that we have seen, particularly in Canada, developing. ‘I don’t want to be a vegetable. I don’t want to be this. I don’t want to be that.’”
He continues: “But that kind of presumption, or even the discourse around that … sends a message to all people with cognitive disability, maybe not necessarily dementia, but other people with cognitive disability who may not fully understand what’s going on, that … life in that situation is is so horrible that we should be ending your life.”
These are murky waters, he maintains. He relates
the case of an Alzheimer’s patient
in The Netherlands, where euthanasia, as it’s called there, has been legal since 2002. Four years before her death in 2016, she wrote that she she wanted to die before she had to go into a care home, but also that she wanted to decide when the time was right.
“And at one point she no longer understood, really, what was going on,” says Lemmens. “She can no longer say yes, but she can also no longer say no, because she doesn’t really understand it. So they give her a sedative. She falls asleep with the family present. The doctor tries to enter the syringe in her arm and to inject her. She wakes up, and she tries to remove it, and the doctor asked the family member to keep her down.”
A 2019 trial found the doctor had acted lawfully, and that not carrying out the process would have undermined the patient’s wishes.
“It’s an ethical minefield,” Lemmens says, “psychologically difficult, difficult for physicians and family members.”
It’s worth noting that MacDonald contacted the National Post, eager to get his message to the public. “I’ve never done anything like this before,” he says. “And as I go and I’m stumbling and trip and I’m three steps ahead and one back, that kind of thing.”
Lemmens was contacted as an expert, having written on the intersection between health care and the law. He is a member of the Chief Coroner of Ontario MAID Death Review Committee and co-editor of the book Unravelling MAID in Canada: Euthanasia and Assisted Suicide as Medical Care. In May he
published a paper
titled “Ontario Chief Coroner reports raise concerns that MAID policy and practice focus on access rather than protection.”
But both men have been personally touched by dementia. MacDonald watched his brother decline from a healthy individual to someone dying of dehydration in a hospital bed.
“And I’ve seen my own mother die with dementia,” says Lemmens. He’s also seen two others in his social circle die of the disease, and knows another with early stage dementia. “So I’ve seen what it is. It’s a devastating condition.”
But he adds: “very early onset dementia, people can have 10 years of life left, you know. So I’m very troubled that we are already having a practice developing, and that there is not more discussion about that. But we see already very lenient applications of these safeguards, where people that we’re not really sure whether they understand what’s going on are getting medical assistance and dying. So I’m troubled that we constantly seem to be stretching or moving the goal post.”
MacDonald is adamant. “We’re not trying to change MAID laws,” he says. “We’re not trying to expand them. We’re not trying to make them more lenient or anything. The only thing we’re trying to do is help people get access to the laws, or the ones that have access to keep access. Because that’s silly: you apply for MAID and you’re approved, and then at some later stage, you get unapproved. That doesn’t make sense.”
Says Lemmens: “The thing is, sometimes the ethical dilemmas are unsolvable. So you have to, as a society, think about what’s the most dangerous parts, what’s the most problematic practice?”
Meanwhile, Munsch has moved one day closer to death, whether by MAID or another way. So have we all. The discussion continues.
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