Mary Wilson was rapidly deteriorating with Alzheimer’s when she received a medically assisted death in 2017.

The Alberta woman was still cognitively aware and could hold complex conversations, but those conversations could last an hour and a half instead of the usual 15 minutes, her son, Ken Campbell, said.

She had also begun to withdraw from the world as the disease progressed: she would put coffee mugs in bathroom cabinets and spoons under her pillows; he needed help getting dressed and had a loss of bladder control.

Wilson, an intellectual with three post-secondary degrees, stopped reading and began watching Disney musicals on repeat.

“Talking to my mom was like watching a novice driver parallel park,” Campbell says of her final days.

Wilson hosted an intimate house party with family and friends before receiving MAID.

At the party, she would smile and lean forward as if she were getting ready to speak, but then lose her train of thought as everyone quieted down to listen, just saying, “It doesn’t matter,” Campbell says.

Her window of eligibility to receive MAID appeared to be closing — once a person with an untreatable condition loses the mental capacity to consent, it is illegal to offer them an assisted death.

“Advanced requests weren’t available, and that was a big frustration for my mom,” says Campbell.

This is no longer the case in Quebec, where a person with a serious and incurable disease such as Alzheimer’s can apply for MAISON months or years before their condition renders them unable to give consent. The move has drawn praise from patients and advocates who believe people with Alzheimer’s should decide whether they want to bear the full extent of their decline. But it has also generated confusion and criticism among some in the medical community that raises moral and legal questions.

In Wilson’s case, she was able to go to her doctor and say, ‘I’m ready,'” Campbell recalls.

But he says that his mother would have wanted to ask for a housekeeper ahead of time.

Wilson was diagnosed with dementia in 2012 and began a rapid decline in 2017. Her doctors had time to notice the speed and signs of her decline.

The progression of an Alzheimer’s patient’s disease — and their window of eligibility — varies greatly from case to case, says Dr. Konia Trouton, President of the Canadian Association of MAID Assessors and Providers.

Neurological conditions accounted for 12.6% of people who received MDA in 2022. Of those cases, which include Parkinson’s disease and ALS, dementia accounted for 9%, accounting for 150 people, Statistics Canada data shows.

They must be in advanced decline but still able to explain their diagnosis and give consent, says Trouton, who has been providing health care in British Columbia, Alberta and Ontario since 2016.

Sandra Demontigny, who lives in Lévis, Que., applauds her province for fighting to promote MAID in Canada. She began to develop personal criteria that would mean she was ready for the procedure.

Patients who make an advance request must detail the circumstances in which they would like the housekeeper, such as if they lose bowel control or forget their children’s names.

Demontigny, 45, knew she wanted to apply for MAI when she was diagnosed with Alzheimer’s at 39.

Demontigny saw the distress in her father’s eyes as he suffered from Alzheimer’s — the same disease his mother had — and it was like he was saying “save me,” she says. He could no longer eat or drink at the end of his life. He was lying on the floor like a baby learning to walk, she recalls.

She decided that if diagnosed, she would seek a medically assisted death.

“I can’t imagine me and my children seeing me like this,” Demontigny says, pausing as tears choke her words.

More than a decade after her father’s death, signs of her own illness appeared.

Demontigny says he’s already losing his memory and sometimes asks the same question over and over again. “I’m not the same person I was before,” she says.

The Federal Government will launch consultations later this month on expanding advanced requests for medical assistance in dying.

Dr. Catherine Ferrier, who has spent four decades diagnosing and treating patients with neurocognitive disorders in Montreal, strongly opposes advance requests saying, “It seems barbaric to me.”

She poses the dilemma of a consenting advanced dementia patient who pulls his arm when the doctor tries to insert the needle.

“You’ll either have to hold them down or sedate them to do that,” says Ferrier.

If a patient’s refusal is a manifestation of their illness, the MAID practitioner can proceed, she says, but “that leaves a lot of leeway for the doctor’s subjectivity.”

“We talk about age and we talk about ableism, discrimination against people with disabilities. To me, that’s what all of this shows. Someone who is no longer actively contributing to society, somehow it’s okay to lower your standards of consent and remove that person from the population,” says Ferrier.

But Trouton says that’s why the details of a person’s claim are so important: “It will have to outline what the suffering will look like and how it can be objectively identified, like five or 10 years down the line.”

“That means when a patient refuses, like a person with dementia who is happy, it’s going to be hard for us to indicate what a refusal looks like,” says Trouton.

The Quebec government website states that health and social service professionals, such as nurses and social workers, must answer the patient’s questions about MAID and help them find a provider. A doctor or specialist nurse would prepare the advanced application with the patient and register it with the provincial registry.

Helping patients write advanced claims will be an intensive process given the level of detail required. Trouton says he worries there won’t be enough trained doctors and nurses to meet expected demand.

“It will be impossible,” says Trouton. “That’s what I’m quite worried about.”

This report by The Canadian Press was first published on November 8, 2024.

Canadian Press medical coverage is supported through a partnership with the Canadian Medical Association. CP is solely responsible for this content.

Hannah Alberga, Canadian Press