This is why Quebec is the only province where you can pre-approve your death

Years into a diagnosis of Lewy body dementia, Clarke Eusanio was living a nightmare. 

“He would phone us, frantic, because [he thought] somebody was chasing him with a chainsaw trying to kill him. Bears were chasing him,” said Tanya Secord, Eusanio’s daughter, who lives in Revelstoke, B.C. 

Visual hallucinations are a common symptom of the condition. Eventually, Secord said, he forgot how to function and couldn’t eat or drink.

“He ended up with aspiration pneumonia and drowned for five days until he finally passed,” she said. He was 83 years old. 

After watching him suffer, Secord grew adamant: She wanted to plan her own death. 

While medical assistance in dying, or MAID, is legal in Canada, it’s no longer an option once a person loses the capacity to consent to it. And except for Quebec residents, Canadians can’t request MAID for their future self. 

As the federal government considers expanding MAID to people whose only underlying condition is mental illness, some advocates and experts say Ottawa should also consider allowing advance requests.

But the issue is at a standstill. 

What is an advance request? 

A person can submit an advance request for MAID while they can still make decisions for themselves.

It consents to MAID in the future, when the requestor has lost capacity and meets certain conditions on which they have already decided. 

Quebec allows advance requests for people who have been diagnosed with a serious and incurable illness that will lead to incapacity. However, it can’t be made in anticipation of a future diagnosis. 

WATCH | Quebec now allows advance requests for MAID | 2024:

Quebec now allows advance requests for medical assistance in dying

The federal government says it will not interfere with Quebec’s new law allowing people to make advance requests for medical assistance in dying (MAID), though some doctors in the province are opposed.

The request must include a list of clinical symptoms that a person has decided will signal that they would want MAID — like no longer remembering one’s family or being able to feed oneself.

When it comes time to fulfil the request, two health-care providers must assess the person to ensure: 

• They meet the criteria set out in their request.
• They are in a medical state of advanced and irreversible decline. 
• They are experiencing suffering due to their illness that can’t be relieved. 

However, an advance request isn’t a guarantee.

Why are advance requests complex?

While the process sounds straightforward, it’s a lot more complicated in practice, say experts.

One of the big challenges is determining whether and how much someone is suffering. Someone may meet the criteria of their request, but still seem happy, said Dr. Tim Holland, who heads Dalhousie University’s bioethics department in Halifax. 

Holland, who co-authored a recent paper on the issue, says providers “must see suffering through the lens of that individual before they lost capacity.” That relies on knowing their values before the onset of their illness.

“We don’t want the disease to be speaking for the person.”

There’s also the issue of refusal, says Marie-Ève Bouthillier, professor of clinical ethics at Université de Montréal. If the person refuses MAID on the day they’re set to receive it, the provider must determine the legitimacy of the refusal.

“It’s something that happens to people with dementia; at some points they don’t want to be touched or they feel aggressed,” she said. 

In that case, the provider might look to see if the person has been refusing all care, which can be a symptom of their disease. But as with other MAID procedures, if there is any indication the person is refusing it when it’s being administered, it will stop and the request will no longer be valid.

Why are they only legal in Quebec? 

Quebec decided to move forward on the issue without the federal government, the only province to do so. It enacted its own legislation in 2023 and started accepting advance requests the year after.

People wanted the option available, said Laurent Boisvert, a MAID practitioner and president of Quebec’s Dying with Dignity Association, and there was political will to enact it.

At the time, Ottawa said it wouldn’t contest the Quebec law, while Quebec instructed its prosecutor’s office not to pursue charges against doctors who process advance requests. 

“To my knowledge, there’s no reason why other provinces couldn’t do the same thing,” said Holland. 

Still, Quebec’s move is a “bold one,” he said, adding that he would prefer to see the federal government lead a unified rollout across the country. 

So far, Boisvert says early numbers show that about 30 advance requests have been completed in Quebec, with more than 2,000 submitted. 

What happens next? 

In 2023, the Special Joint Committee on MAID recommended that the Criminal Code be amended to allow advance requests in certain situations. 

At the time, the government said the issue needed further study. 

This past October, it released national survey findings and found a majority of Canadians were on board with advance requests. The report didn’t include any next steps or future recommendations. 

In an email to CBC News, a spokesperson for Justice Minister Sean Fraser said Ottawa is reviewing the evidence to figure out the path forward.

For Secord in B.C., who says she has reached out to politicians across Canada, the lack of urgency on the issue is “disheartening.”

She also said it doesn’t make sense not to allow advance MAID requests when people can agree to a DNR, or a “do not resuscitate” order. She also wants requests to go even further, to allow people to fill them out ahead of a diagnosis, to ensure they still have capacity. 

“We should all have the right to decide how our end is going to be.”