Years after medical assistance in dying became legal, the debate rages on

Advocates on both sides of the issue are preparing for a fight in the new year over broadened access to medical assistance in dying (MAID) and whether it would pose risks to Canadians with disabilities.

In March 2021, Parliament passed Bill C-7. The law made a number of changes to Canada's MAID law, passed in 2016 — the most notable being the repeal of the stipulation that an individual's death has to be "reasonably foreseeable" to qualify for medical assistance.

Helen Long is CEO of Dying with Dignity Canada, a national organization advocating for MAID rights. She said the law gave a new group of people the right to end their suffering.

"So that's opened up a what we call a 'track two,' a whole new track for people with a different type of illness who haven't been eligible in the past, even if they may have been suffering just as intolerably," she said.

Another notable change introduced in C-7, she said, allows those who asked for MAID and were found eligible to still receive it if they later lose the capacity to consent.

C-7's effects on the number of people seeking MAID in Canada are not yet clear.

The federal government has published annual reports covering MAID statistics for the past two years. The most recent covered 2020; it reported 7,595 cases of medically assisted death in Canada in that year — a 34.2 per cent increase over 2019.

When CBC News asked for the 2021 numbers, a Health Canada spokesperson pointed to the most recent report.

Long said data from some provinces indicate we may see a very slight increase in the number of medically assisted deaths in 2021.

And the changes to the law might not be the only reason more people are seeking medical assistance in dying, she said.

"I think that's in part due to the changes, but also MAID numbers do go up a tiny bit each year just as people become aware that this is something that they can consider at end of life," she said.

Kristin Raworth's stepmother Marie received medical assistance in dying. Marie passed away in December aged 70, after a form of Parkinson's Disease took over her life.

Raworth, who lives in Edmonton, said she's grateful her stepmother had the option.

"This is something that she very much wanted, and it was very peaceful and she was surrounded by love and people who loved her," she said. 

"She was able to go out of this world on her terms, and so I feel very grateful for it being available and being the option that it is — even more so now that I've experienced it as a family member."

The push for advance directives

Marie's condition deteriorated so rapidly that the date of her medically assisted death came earlier than expected.

Right now, the law does not allow for so-called advance directives — which would permit an individual to legally arrange a medically assisted death before being diagnosed with a condition that might someday inhibit their ability to give consent.

Raworth said she thinks that option could be valuable.

"Having an advance directive I think would be helpful for a lot of folks who might want to be able to try to get as much out of life as they can before they degenerate and before they are unable to make that decision," she said.

Long said many of the people contacting her organization want to see advance directives written into the law.

"And we hear about that most frequently from those with a family history of dementia or Alzheimer's," she said.

Dying with Dignity also wants to see the MAID regime opened up to those suffering solely from mental health conditions — something the current law does not permit.

Long said she wants to see Parliament's special joint committee on medical assistance in dying brought back to review existing MAID law. A committee was appointed earlier this year but it was dissolved by the 2021 federal election.

According to Health Canada, the committee was tasked with reviewing "the provisions of the Criminal Code relating to MAID and their application, including but not limited to issues relating to mature minors, advance requests, mental illness, the state of palliative care in Canada and the protection of Canadians with disabilities."

Health Minister Jean-Yves Duclos' office did not respond to a request for comment from CBC News.

A National Assembly committee in Quebec recently recommended making advance consent for MAID legal but rejected expanding access to those whose sole condition is a mental health disorder.

Krista Carr, executive vice-president of disability rights organization Inclusion Canada, said the law as it stands poses a threat to Canadians with disabilities.

She said many people with disabilities would prefer more government assistance — through things like income supports and accessible housing — to the option of medically assisted death.

"One of the things the disability community fought really hard to do was keep [MAID] at end-of-life," Carr said.

"They don't actually want to die, they want to live. But they want to live a life on par with other people, which is entirely possible with proper support. But yet we're not prepared to provide that."

Carr said that while efforts to quash Bill C-7 were unsuccessful, Inclusion Canada will continue to fight to have the changes in C-7 repealed and prevent expansion of access to MAID. She called the existing law "ableist" and "discriminatory."

She said her organization is hearing from more and more people with disabilities who are giving up on living decent lives. She said she's particularly alarmed by the prospect of extending MAID to people whose sole condition is a mental illness.

'It scares the living daylights out of me'

"We have hugely long wait lists for mental health services … and people are waiting for years, literally, to get mental health services that would help them," Carr said.

"It's going to be a lot cheaper to eliminate people than it's going to be to support them, and it scares the living daylights out of me."

She said members of the disability community are considering a Charter of Rights challenge of the MAID law. Carr said the law might also violate the United Nations Convention on the Rights of Persons with Disabilities, which Canada signed.

Raworth wrote about her experience with MAID in the online publication The Line. She said the responses she received showed her it's a topic that still makes many people uncomfortable.

"Almost every single person said to me that they felt that they couldn't publicly talk about it, either as a provider or as some who had a family member who went through this, because there still is a significant amount of stigma attached to it," she said.

Jennifer Laewetz of Prince Albert, Sask., whose sister passed away through a medically assisted death in 2018, said MAID is widely misunderstood because very few people have experienced the need for it.

"It gets ripped apart by a lot of people who have not been affected by it," she said.

Earlier this year, Laewetz thanked Jody Wilson-Raybould, the former justice minister and attorney general, for her work in making MAID legal.

A few months after Laewetz's sister died, Saskatchewan stopped referring to medically assisted deaths as "suicides" on death certificates. It was decision she said she greatly appreciated.

"For me, personally, MAID was one of those things where it was probably the most beneficial thing my sister had the ability to choose for herself in the end," Laewetz said.

"I say that with a lot of compassion, because when it comes to MAID, people just don't know until you're there."