Dementia patients asking to provide advance request for medically assisted death

One year ago, access to a medically assisted death in Canada was expanded. Adrian Ghobrial speaks with a man diagnosed with dementia who is urging the government to allow advanced requests for MAID.

By Adrian Ghobrial and Meredith Bond

It’s been a year since medically assisted dying was expanded in Canada, but now there’s another group of people diagnosed with a bleak long-term prognosis who want access to doctor-assisted death.

Ron Posno, an 82-year-old retired professor and pilot, was diagnosed with dementia in August of 2016. He wears an eye-patch to cover the near fatal injury he suffered in a plane crash in the 1970s.

Posno is pushing for the federal government to allow people like him to make an advance request for Medical Assistance In Dying (MAiD). Years down the road, when he loses the capacity to consent, a loved one and a MAiD provider will have his pre-written directives.

“I’m ready to die when my life has transitioned from living to just existing,” said Posno. “My life has been full of action and activity, so it doesn’t change because I have dementia.”

He has created a list that includes eight directives for his wife and doctor. When he’s exhibiting one or more of these symptoms, Posno wants them to conduct a medically-assisted death.

“When I become persistently abusive either verbally or physically. That happens. When I require physical restraints and/or a locked door facility. That’s when I want my wife to say, Ron’s had it,” he explained.

“When I get to that point where I have to be fed, I’m sorry guys, that’s when I want to have MAiD.”

Currently, individuals with dementia and Alzheimer’s can access MAiD but they must be able to give consent right up until the moment they’re going to receive a doctor-assisted death. One senator is fighting to change that.

“We need to stop people from having to end their lives prematurely because we won’t give them this very simple option,” said Senator Pamela Wallin. “What many of the patients have done is said, ‘We want the right to seek an advanced request for this because when we get to the age and stage where we can no longer make those requests, you will no longer accept them’.”

A parliamentary review is supposed to be ongoing by the federal government but since the election in September 2021, the review has been at a standstill, even though it is expected to be submitted in May of this year. The committee originally created held only three meeting before being disbanded prior to the election.

When MAiD was first legalized in 2016, the legislation restricted the procedure only to individuals whose natural death was “reasonably foreseeable.” In March 2021, the foreseeable death requirement was removed with Bill C7.

That bill included a commitment to a parliamentary review of the law which would look at questions surrounding mature minors, mental illness, and advance requests.

Back in January, a spokesperson for Government House Leader Mark Holland said the committee would be reconvened during the latest session of the House of Commons.

“Until we recognize this idea of an advance consent, we’re going to leave 10s of 1,000s of people every year in this situation with no ability to do anything about it. And they want to make that choice. They want to make that choice for themselves in advance,” said Wallin.

“I feel very passionate about it because I just know too many people who have been either relegated to a life that they’re no longer conscious of and are behaving in ways that that they did not want their families to have to deal with in any way,” added Wallin.

Activist Syrus Marcus Ware believes we need to put more supports in place for people with a disease or disability to have a true choice between life and death.

“What would it look like if they were looking into a future that was positive and bright for disabled people that wasn’t rooted in ableism, they might absolutely choose life.”

“What I’m hearing in this example is ‘I don’t want to experience medical and systemic ableism,’ I’m not hearing someone say I want to die. I think all of us should have the right to not be sitting in feces and not be sitting in diapers that aren’t changed,” Ware said referring to Posno’s case.

“All of us should have the right to respectful, dignified care, when we’re older. When we’re ill. When we’re disabled, we should all have the right for that. And the choice shouldn’t be, I’m either going to be sitting in old diapers, or I’m going to have to die.”

Even some of Canada’s original MAiD providers aren’t sure how they feel about allowing advanced requests.

Dr. Ellen Wiebe, who is on the Clinicians Advisory Council for the group Dying with Dignity and is licensed in B.C. to perform doctor-assisted death said she doesn’t know if she could perform an advanced request medically assisted death.

“I meet them for the first time and they don’t know what’s going on and I’m supposed to end their life because they wrote a piece of paper years ago? That’s really hard, I don’t think I could do that,” said Dr. Wiebe.

“If I have real difficulty, you can imagine that the vast majority of providers would have real difficulty because I’m comfortable with difficult cases,” explained Dr. Wiebe. “To me it’s still dealing with basic rights. But the person who wrote those advanced directives years and years ago, isn’t the same person as the one who is now maybe happily playing with the puzzle on the table on the nursing home, not recognizing her family.

“They don’t really understand dementia, they understand that it is my wish, I need their help, but it is my wish, and it should be my responsibility to request it,” explained Posno. “I don’t want to exist, I want to cease living.”

Whether or not Ron Posno’s wish will be granted remains to be seen.

CityNews has been working on an in-depth documentary exploring medical assistance in death, following multiple people’s journey with MAiD. Vercity: MAiD in Canada airs this Sunday February 27 at 10 p.m. EST only on Citytv.

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