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Ottawa must revisit assisted dying for Alzheimer’s, dementia patients: advocates

OTTAWA — Now is the time to urge Ottawa that people with disorders such as Alzheimer’s and dementia should be able to request medical assistance in dying before their cognitive decline, says the CEO of an influential group.

Helen Long, the head of Dying With Dignity Canada, says the public strongly supports allowing people with neurocognitive disorders to request an assisted death before their disease causes them to lose the capacity to consent. 

“I think a lot of people have a family experience with one of those diseases,” she said in a recent interview. 

“So it’s easy for them to see themselves.” 

The move to seek greater access for such patients comes after Ottawa’s decision, following months of debate, to delay the extension of eligibility to people suffering only from mental illness.

The government legislated a three-year pause after several provinces told the federal health minister their systems weren’t ready to implement the policy.

Long’s organization, along with other proponents, argue those suffering from an intolerable mental illness should have the same right to the procedure as someone suffering from a debilitating physical condition. 

“Given what’s happened with the mental disorders delay, I think this is the time for us to really focus on advanced requests,” said Long. 

“That said, you know, mental disorders are still something that we feel strongly about.”

The group commissioned a survey by Ipsos that found 83 per cent of Canadians they polled support advance requests for those diagnosed with a “grievous” condition that will eventually cause them to lose the capacity to decide.

The survey polled 2,000 Canadians in March, and cannot be assigned a margin of error. 

A special joint committee of senators and MPs struck to consider expanding access to assisted dying recommended that Ottawa move ahead on allowing requests in advance of cognitive decline, Long noted. 

Doing so would require an amendment to criminal law. 

Quebec passed legislation last year allowing people in the early stages of serious degenerative illnesses such as Alzheimer’s to request assisted death, and have the procedure carried out once their condition worsened. 

The province has said a Criminal Code change is still needed so doctors are not committing a crime, but Ottawa has not yet granted its request for an amendment. 

“I hope that there’s enough pieces coming together that perhaps there’s some political will to change directions on this one,” said Long. 

The Alzheimer Society of Canada has said those living with dementia deserve the same access to an assisted death and ought to have the ability to make a request in advance, following a diagnosis and plans for future care. 

The federal government introduced its initial assisted dying law in 2016 after the Supreme Court of Canada ruled the previous year that adults with a “grievous and irremediable medical condition” have the right to an assisted death. 

About three years later, a Quebec court ruled it was unconstitutional to require that a person’s death be reasonably foreseeable to make them eligible for assisted dying.

In 2021, the Liberals updated the law to reflect the lower court decision. 

Parliament then accepted a Senate amendment to remove an exclusion for people whose sole underlying condition is a mental illness. 

The government legislated a two-year period for systems and practitioners to get ready, then added a one-year extension in early 2023.

But critics who testified before the special joint last fall said that wasn’t long enough, as key questions about expanding eligibility still remained unanswered.

For example, how would practitioners judge if an individual was experiencing suicidal thoughts, determine their likelihood of recovering or factor in a lack of access to treatment because of circumstances such as poverty?

The Canadian Mental Health Association and others warned that those suffering from mental illness first needed better access to supports, while disability advocates raised fears about how it could place vulnerable people at risk. 

Federal Health Minister Mark Holland ultimately proposed punting the expansion until at least March 2027.

But he said the government still believes that mental suffering is equal to physical suffering.

Opposition Conservative Leader Pierre Poilievre has pledged to scrap the expansion altogether if he wins the next election. 

This report by The Canadian Press was first published April 17, 2024. 

Stephanie Taylor, The Canadian Press

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