Ernest Frederiksen wants to choose when he dies. He has a myriad of health conditions, one of which causes him a significant amount of pain, but none of his conditions currently qualify him for medical assistance in death (MAiD).
“I have read that there are 50 different words to describe pain and I’d say on a good day, I feel at least 20 of them,” said Frederiksen.
Frederiksen is 28 and lives with his parents in Redwater. He spends eight hours a day sitting in the same chair in their living room. He hasn’t been able to work for five years and he is in constant pain.
“I’m on more than 20 different medications. I take over 40 pills a day. The pain still isn’t at a level that I can manage to live a normal life,” he said.
Of his many medical conditions, fibromyalgia is the one he finds most unmanageable, and the one with the least number of options for treatment.
Despite this, Frederiksen still does not meet requirements under Canada's assisted dying law.
Fibromyalgia is a life-long condition but not a life-threatening one. That reason disqualifies Frederiksen from being able to access assisted death under the current 2016 legislation.
He hopes Bill C-7 will change that.
The bill would change federal rules that currently require someone to have a fatal condition in order to qualify for MAiD, and would amend safeguards within the act to allow access for people who aren't likely to die from their condition. For those who have a fatal condition, the bill would also remove a 10-day "reflection period" before the MAiD procedure occurs.
The change is currently being debated in Parliament because of a decision made by the Superior Court of Quebec. In September 2019, the court ruled that the requirement for death to be reasonably foreseeable in order to qualify for MAiD wasn't constitutional.The Truchon decision (Truchon vs. Attorney General of Canada) that struck down this requirement was supposed to come into effect in March, but a series of suspensions granted by the Superior Court of Quebec delayed that date to Dec. 18.
After Dec. 18, reasonable foreseeability will no longer be a requirement for MAiD in Quebec. Bill C-7 aims to put the rest of Canada in line with the Quebec ruling.
Michael Cooper, MP for St. Albert-Edmonton, thinks the government is rushing through the legislation process. He said he thinks the proposed bill is problematic.
“The government introduced a bill that goes well beyond the scope of the Truchon decision and pre-empted parliamentary review, prorogued parliament, and now is rushing to ram this bill through with very little consultation,” said Cooper.
Cooper believes the government should have appealed the Truchon decision for the purpose of providing clarity and to give Parliament time to respond.
“I have a lot of issues, mainly because of the lack of consultation and the fact that we’re dealing with legislation that removes safeguards,” he said.
Cooper brought forward a number of proposed changes to the bill.
Cooper said he has issues with the termination of the 10-day reflection period and proposes people have at least a week, though that amendment failed.
He said he also believes there should be two witnesses present instead of one for an assisted death.
“When someone executes a will, in order for that will to be valid, it requires that there be two witnesses,” he said. “Here we’re talking about a request that's involving a procedure that will terminate one’s life. This legislation provides for a lesser safeguard.”
People who seek assistance in death but don’t have a reasonably foreseeable death would be required to take a 90-day reflection period with the new legislation. Cooper thinks that amount of time should be longer.
“We heard significant evidence, that in order to access your psychiatric or other supports or even to access palliative care, that can take longer than 90 days,” he said. “So, we put forward an amendment to extend the 90-day period.”
Some disability advocates, and some people who have disabilities, agree with Cooper.
Ontario resident Richard Foley, who has a neurological disorder, addressed the federal justice committee recently to ask for more focus on assistance and home care for people with disabilities, arguing MAiD was easier to access than disability supports.
However, Brad Peter, an Edmonton chapter volunteer with Dying with Dignity Canada, said he disagrees with some of the concerns Cooper has raised. Dying with Dignity is a human rights organization that advocates for quality end-of-life choices.
Peter said he believes requiring two witnesses is a barrier to accessibility, not a safeguard in the system. He thinks the same about the 10-day wait period.
As for the 90-day wait period, Peter believes that's too long for someone who doesn't have a reasonably foreseeable death.
He said he also disagrees with Cooper’s insistence that the legislation is being rushed through.
“The legislation, the way it was written initially with natural death being reasonably foreseeable, was unintentionally causing suffering and causing harm,” he said. “To me, it's not rushing into it, if you're adapting legislation that's been causing harm after four or five years.”
Peter is critical of a clause excluding people with mental health issues from applying for MAiD, but said he still wants to see the bill passed by the Dec. 18 deadline.
“What we don't want to happen is to have two regimes for medical assistance in dying in Canada, where Quebec would then have a different requirement than the rest of Canada,” he said. “I think it's important that we address these issues in a timely manner so that there's equal access across all provinces and territories.”
Frederiksen initially applied for assisted death back in 2015 after the Supreme Court of Canada ruled that the prohibition on assisted suicide was unconstitutional.
“By the time they finally got back to me, it was after Bill C-14 was passed, and based on that I was denied,” he said.
He won't try to apply again until after Bill C-7 has passed.
Frederiksen said his family has been very supportive of him.
“It’s not something they want, but they understand that I’m in a lot of pain and don’t really want to see me suffer anymore," he said.
People may worry about the consequences of allowing more people to access MAiD, but Frederiksen said it still needs to be an option.
“I read a lot about people worrying that there’s societal pressure or family pressure that might result because it’s being made legal for more people to access, but from everything I've experienced, it’s the exact opposite,” said Frederiksen. “People don’t want it to happen and only grudgingly accept that it needs to be an option.”
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A previous version of this article had an error in a quote from St. Albert-Edmonton MP Michael Cooper. Cooper referred to accessing "psychiatric or other supports."