Advocates push for advance MAID requests two years post Parliament recommendation

Sandra Demontigny stands in a park on a rainy day in Levis, Que., Friday, Nov. 1, 2024. THE CANADIAN PRESS/Jacques Boissinot

OTTAWA — Sandra Demontigny knew something wasn’t right when she couldn’t remember buying herself a new pair of boots. They were a splurge — a little out of character for the mother of three — and she had been excited about bringing them home.

“I saw them near the door and I asked my kids, ‘Who bought these boots? I’ve never seen them,’” she said.

“The kids were saying, ‘No, (they’re) yours. You bought them and you really like them.”

Sliding her feet inside, she realized she couldn’t remember buying them. “I started crying,” she said.

The incident led to a diagnosis: early onset Alzheimer’s disease, the same kind Demontigny watched her father struggle with for years.

That was in 2018. Today, Demontigny is 46 years old and lives in an assisted-living facility in Lévis, Que.

She lives independently, but her short-term memory is failing and she finds it difficult to manage time. She has a tendency to repeat herself in conversation.

“I don’t know it, I just see it in the faces of the people who I’m talking to,” she said.

Early this year, she signed an advance request that sets out the conditions under which she would like to end her life. She isn’t sharing the details, but said it includes her ability to remember her children.

“It was a long process, a lot of reflection, a lot of crying, a lot of fear,” Demontigny said.

Now that it’s done, she said she feels at peace with the decision. It is not a choice she would have if she lived anywhere but Quebec.

Canada’s medical assistance in dying laws do not allow for advance requests, which are written requests to die with medical assistance under specific conditions, made before the patient loses the capacity to provide consent.

A 2023 report from a joint parliamentary committee on medical assistance in dying, also known as MAID, recommended changing the Criminal Code to allow advance requests in the event a person is diagnosed with a serious and incurable condition that leads to incapacity.

The committee wrote that “an advance request must be voluntary, non-coercive, well-considered and made by a person with the requisite capacity.” But the change has not been made.

Provincial legislation in Quebec allows for advance requests for MAID by ensuring that clinicians will not be criminally charged for providing the service.

Dying With Dignity Canada said it’s time for the federal government to act.

“Without federal legislation, we’re left with each province individually having to come up with and implement their own law,” said Helen Long, the organization’s CEO.

This fall, Health Canada released the results of a report it commissioned about advance requests, finding broad support among Canadians for the practice as well as concerns about the safeguards that should be put in place.

In Quebec more than 1,700 people have made an advance request so far.

Cardus, a Christian think tank, opposes any expansion to the assisted-dying regime and has advocated for stronger safeguards.

“Very few jurisdictions internationally have an advance MAID request in their legislation, and so we don’t have much data to see how it’s working in those countries,” said Rebecca Vachon, the group’s health program director.

“The data that we do have show how complex and difficult these ethical situations can be to navigate.”

Vachon said the requirement to provide consent is a key safeguard in Canadian law.

Cardus would like to see an independent monitoring and enforcement body created in Canada. Vachon said the group is alarmed that the latest data from Health Canada shows MAID accounted for about one in every 20 deaths in 2024.

Long said the numbers simply reflect people’s individual choices. She pointed out the data also shows more than 65 per cent of people who had a medically assisted death had been diagnosed with cancer.

“So, truly, they were dying of cancer. MAID was the process by which they chose to end their life,” she said.

The Liberal government has given no indication of whether it intends to change the existing laws.

A spokesperson for Justice Minister Sean Fraser did not answer specific questions, instead sending a short statement that noted MAID is a “complex and deeply personal issue.”

“We will continue to work with provinces and territories and medical professionals on the implementation of Canada’s MAID system,” said the statement from Lola Dandybaeva.

Demontigny said she has a clear idea of what’s coming as her illness advances, and she doesn’t want to live the way her father did in his final years. Young people with her diagnosis can live for decades.

“Because we are young, our bodies feel in really good shape. It’s just the brain that is bad,” she said.

Sarah Ritchie, The Canadian Press