After Kristine Johnston’s husband, Jimmie, was diagnosed with Alzheimer’s disease in 2011, the couple were able to spend an additional eight “good years” together in a marriage that has now spanned close to six decades.
The couple travelled to the Grand Canyon, around the American Southwest, through the island of Newfoundland and the province’s mainland Labrador, and elsewhere in Canada and the U.S. while Jimmie’s health held up.
In early 2020, with his condition worsening, the couple agreed it was time to seek additional help, and Jimmie was admitted to Trillium Manor in Orillia, where he has remained ever since. He has steadily deteriorated since then.
“He didn't know who the kids were, and there were three times where he said, ‘Is Kristine coming today?’ or, ‘Where's Kristine?’ while looking right at me,” Johnston said of the couple’s decision to seek long-term care.
Johnston, an Oro-Medonte resident, said it's a situation that neither her or her husband wanted — particularly after witnessing numerous members of their family suffer with Alzheimer’s disease.
When medical assistance in dying (MAID) first rolled out in 2016, the couple hoped there would be a means of accessing advance consent for the procedure, whereby Jimmie could consent to the process while still of sound mind, and undergo it should he become incapacitated.
“He was all for it in 2016, and he would have been for it even later,” Johnston said. “If that had been available, he would have said yes, and would have been OK with it.”
However, advance consent for MAID is unavailable for people in Jimmie’s situation, and Johnston has watched him slowly and steadily decline over the past four years.
While she visits Jimmie every week and talks to him, she said he is unable to engage in conversation any longer, has lost control of many bodily functions, and has had to rely on the use of a wheelchair for most of the past two years.
“It’s awful. This last year has been particularly the hardest part to see him in the state that he's in,” she said. “He’s absolutely wasting away and that makes it so hard.”
At this point, Johnston views keeping Jimmie alive as simply prolonging his suffering, mentioning that “the doctor agrees with that, but he can't do anything about it.”
While her husband is beyond the point of being able to give advance consent for MAID, Johnston said she would like to see it become an option for people moving forward.
“Everybody in our family is definitely for it. If there was a vote, we would all say yes,” she said.
Johnston recalled a similar scenario in which a family member with cancer accessed MAID earlier than they would like, for fear of being unable to give consent later on.
“He picked a date because he was really afraid that he wouldn't have the capacity to consent,” she said. “He had them give him a shot before he really was ready, emotionally, to do it.”
That sentiment is behind a petition to the House of Commons, sponsored by Yukon MP Brendan Hanley, calling on the federal government to allow advance consent for MAID for “capacity diminishing” conditions.
“The law as currently written does not allow for this option, meaning that people seek MAID earlier than desired, because their disease progression eventually robs them of the ability to provide consent, and, in so doing, they potentially miss out on quality years of life,” the petition states.
As it stands, more than 11,000 people have signed the petition, which may be found here.
In February 2023, the federal government's Special Joint Committee on Medical Assistance in Dying (MAID) released its second report on MAID, recommending to the Government of Canada that advance requests be permitted following a diagnosis of a serious and incurable medical condition, disease or disorder leading to incapacity.
According to Simcoe North MP Adam Chambers, the discussion over MAID access is a hotly debated area of legislation among federal politicians, with more grey areas in the correct path forward than black and white solutions, with politicians holding multiple conflicting views — even across party lines.
“I feel for anybody who has to see a family member in a situation where they feel that they're suffering, especially as people are living longer and growing older. It's super difficult,” he told OrilliaMatters.
Beyond discussions surrounding advance consent, the federal government continues to have discussions about the expansion of MAID more broadly, with the procedure set to expand — barring another delay — to those with mental health conditions in March, after being delayed last year.
For Chambers, expanding who can access MAID — particularly for those with mental health conditions or disabilities — is something the country should proceed with carefully.
“My own personal view is (that) I listened to some of the experts and the psychiatrists and the medical professionals who said, ‘Look, the system isn't quite ready for additional expansion yet,’” he said.
“The numbers of those who have accessed MAID have increased substantially over the last couple of years, so I think we need to be careful about making sure that we're protecting vulnerable people," Chambers said.
“It’s important to make sure individuals do not feel that they're a burden, and then looking to MAID as a way to relieve their family or others of that burden,” he said. “I think it's important that we do not lose that with any discussion of expansion.”
Chambers highlighted the “finality” of undergoing MAID, and stressed the need to ensure the appropriate safeguards are in place to protect vulnerable people, while also acknowledging “not everybody fits in a nice box, and there's unique circumstances.”
“I recognize that other people have varying use, but the disabilities community, in particular, has been quite vocal … about their concerns with expansion, as have a number of psychiatrists and professionals in the medical system that have basically said the system doesn't have the right safeguards yet. We're not ready for any expansion,” he said.
“It's an irreversible decision – it's very important that a patient would have the ability to consent.”
Moving forward, Chambers said he hopes to see the expansion of MAID delayed, noting the government will have to make a decision on its expansion for mental health purposes in the coming months.
“If we hit the deadline, it expands automatically, so I'm hopeful that the government will reconsider its position, and either institute another extension … or just pause he expansion indefinitely to allow for continued conversation,” he said.