Should dementia patients be able to make advance requests for medical assistance in dying?

As the number of dementia patients in Canada continues to climb, so do calls to allow advance requests for medical assistance in dying (MAID).

Similar to the debate over expanding MAID to those suffering solely from mental illness, it’s another sign that the Canadian government is far from finished wading through the complexities of the end-of-life procedure.

There’s currently a petition before the House of Commons requesting a Criminal Code amendment to allow people facing a capacity-diminishing diagnosis to request MAID in advance. It was authorized by Yukon MP Brendan Hanley and today has more than 13,000 signatures.

“The advance request lets you say, ‘I know I’m going to get there eventually, but I’m not there yet. But when I get there, that’s what I want to happen,'” said Dying with Dignity Canada CEO Helen Long.

“I have seen many people in long-term [care] homes who are just waiting to die. It’s God’s parking lot,” said Jennifer Peyton, 70, of Woodstock, Ont., who, despite being in good health is concerned about her options down the road.

“I am terrified that I am going to end up like that,” said Peyton. “I’m healthy right now, but you don’t know when it’s going to hit.”

According to an Ipsos poll published last July, support for advance requests for MAID for individuals diagnosed with a grievous and irremediable condition remains high.

Dementia cases expected to skyrocket

The Alzheimer Society of Canada predicts that by 2030 the country could see a 51 per cent increase over 2020 in the number of new dementia cases per year. An estimated 6.3 million people in Canada will develop, live with and/or ultimately die with dementia between 2020 and 2050.

“Canada is an aging population … and they’re always singing the blues about health-care costs,” said Peyton. “I know it sounds callous, but I think there are a lot of people … in beds [who] do not wish to be in those beds.”

Canada formally legalized MAID through legislation in 2016. Currently, someone can request MAID if their death is “reasonably foreseeable” under what’s known as Track 1, or if they suffer from a “grievous and irremediable condition,” Track 2.

So far MAID is not available in Canada through advance requests.

However, in February 2023, the parliamentary Special Joint Committee on Medical Assistance in Dying produced a report that recommended “the Government of Canada amend the Criminal Code to allow for advance requests following a diagnosis of a serious and incurable medical condition, disease, or disorder leading to incapacity.”

“I’m a Christian,” said Peyton. “It does not bother me one bit to end my life under those circumstances. To me it is not murder, it is a release.”

But last June, then minsters of health and justice Jean-Yves Duclos and David Lametti responded to the recommendation to expand MAID to include advanced requests by saying the issue needed further consultation and study before the government could consider adopting it.

In an email to CBC News this week, a spokesperson for Health Canada reiterated that statement.

Can dementia patients currently access MAID?

A dementia patient can receive MAID, but “it can be quite difficult from a timing perspective,” said Long, an advocate for advance requests for both patients with and without a diagnosis of a grievous and irremediable medical condition.

Right now, “you have to have enough capacity to still be making health-care decisions for yourself, but you also need to reach the eligibility requirements in terms of being in an advanced stage of suffering,” she said.

“Dementia is a complex condition for the assessment of MAID,” said Dr. Viren Naik, an Ottawa-based MAID assessor and provider.

“It’s a delicate balance … finding that balance of when [the assessor] feels comfortable that the person meets the eligibility criteria but … before capacity has been lost.”

What another delay means for people waiting for MAID

The federal government wants another pause in allowing medical assistance in dying (MAID) requests from those suffering solely from mental illnesses. CBC’s Christine Birak breaks down the division among doctors and what it means for patients who have waited years for a decision.

Canadians support advance requests

The most recent Ipsos poll from July 2023 found that 82 per cent of Canadians support advance requests for people diagnosed with a grievous and irremediable condition, down slightly from the previous year’s results.

The poll, which was conducted on behalf of Dying With Dignity Canada, also found 72 per cent of Canadians support an advance request without a diagnosis.

Last June, Quebec adopted advance requests for MAID, however the provincial government has said it could take up to two years for a request to be processed.

A report produced by the Council of Canadian Academies found Colombia, Spain and the Netherlands all allow advance requests. Belgium and Luxembourg allow advance directives, but only when the person is unconscious at the time of the procedure.

“Until this is available for human beings in this country, I think it’s abhorrent,” said Louise McMullen, 90, of Wellington County, Ont. McMullen and her husband of 55 years live alone on a rural property near Guelph.

“We treat our dogs better because they can be put down when their lives are not worth living,” she said. McMullen is in relative good health, but like most people her age has had an initial screening for dementia and is currently on a waitlist to see a geriatrician.

If at some point a diagnosis points to dementia, McMullen would hope to make an advance request.

“The medical system is already overburdened,” said McMullen. “If I’ve had a good life and I’m happy, why can’t I just die peacefully at my own time rather than having to go through all of that physical degradation and burden on so many other people?”

Part of the problem is knowing when someone’s request should be honoured, said Naik.

“Dementia unfortunately affects people differently,” he said. “And so what’s challenging for a clinician who’s providing MAID is they always need to feel comfortable that the person is suffering.”

There’s another existential, philosophical quandary for MAID assessors, said Naik.

“I think the person 20 years ago who made that directive knows what they would want, but is that the same person in front of you?”