TORONTO — Earlier this year, Canadians were given the legal right to seek a doctor-assisted death, but restrictions in the law governing who can access the act and under what circumstances have continued to fuel debate about this still-contentious issue.
Road to Mercy, a one-hour documentary airing Thursday on CBC-TV, explores the ethical questions surrounding physician-aided dying through the eyes of an Edmonton man with ALS, a young Belgium woman struggling with mental illness, and their families and doctors.
Under federal legislation passed in June, only patients in an advanced state of irreversible decline from an incurable condition and for whom natural death is “reasonably foreseeable” can seek doctor-assisted death. Those suffering strictly from a psychiatric illness would not be eligible, nor does the law allow people diagnosed with dementia to arrange for euthanasia at a future date.
The law is already facing a constitutional challenge spearheaded by the British Columbia Civil Liberties Association, which led the four-year legal battle that resulted in last year’s landmark Supreme Court of Canada ruling that struck down the ban on medically assisted dying.
“I think the documentary is coming out at the perfect time,” said Nadine Pequeneza, writer-director of Road to Mercy, a condensed version of an 83-minute production she hopes to show at film festivals.
“We are going to be faced with rewriting this legislation,” she predicted, “and I’m hoping that the documentary encourages conversation that looks at these more complicated, nuanced cases that the Supreme Court has said have to be included.”
Among those conversations is whether the legal landscape in Canada should be expanded to include people with “grievous and intolerable” suffering due to psychiatric illness, a criterion accepted in Belgium, the Netherlands and Switzerland, but not in the five U.S. states where medically assisted death is permitted.
That hot-button issue is examined in Road to Mercy through interviews with 30-year-old Amy De Schutter of Belgium, who after a long process was given approval to seek euthanasia at a time of her choosing, due to chronic psychological suffering that did not respond to treatment.
De Schutter, recently diagnosed with Asperger’s syndrome after being told years earlier she had borderline personality and generalized anxiety disorders along with clinical depression, has tried to take her own life almost a dozen times since age 13.
Unlike family members and friends, De Schutter said she doesn’t seem to have a “baseline” mood level.
“I never had a baseline, even when I was a kid,” De Schutter, who travelled to Toronto from her home in Antwerp for the documentary’s premiere, said.
“If I’m happy, I’m extremely happy. If I’m down, I’m extremely down. I just live in extremes all the time.
“And you get really tired of going up and down and up and down, because sometimes you have good days for a couple of good hours, and then something happens or sometimes it just comes unexpectedly — and boom, I’m down again.
“And you get exhausted by it.”
Pequeneza believes De Schutter’s story will make viewers think more deeply about assisted dying as it relates to those striving for some quality of life in the face of ongoing psychological anguish.
“(This) is what I wanted the documentary to do, because the majority of Canadians are OK with terminal illness,” she said of attitudes towards aid in dying.
“But when it comes to someone like Amy — she’s young, she’s smart, she appears perfectly normal — as they spend more time with her and they meet her mother and they hear from her psychiatrist, then they’ll have to start to appreciate that what she does have is a severe disability that she’s been struggling with for more than half of her life.”
“Road to Mercy” also documents John Tuckwell’s struggles as his health steadily deteriorates due to the ravages of amyotrophic lateral sclerosis, an incurable neurological disorder better known as ALS or Lou Gehrig’s disease.
Though in a wheelchair for the most part and unable to speak, Tuckwell is able to communicate through a computerized voice-generating device, which translates sentences he types with a finger on a keypad into audible speech.
As he loses more and more function — including the ability to bathe himself, leaving him reliant on caregivers — Tuckwell “moves the goalposts” of what he’d previously believed he could withstand before seeking help to die.
In the end, although he’d been given doctors’ approval for euthanasia when his suffering became intolerable, Tuckwell succumbed to ALS in July at age 54.
“By making an application (for assisted death), he wanted it to be public and he wanted to send a message to other people like him that asking for help to die was not a shameful thing,” said his sister Cathy Tuckwell, who lives in Toronto.
“Although he wasn’t at a point where he wanted to push the button, or have the button pushed for him, the fact that he did have that (approval) gave him comfort.”
As for De Schutter, she is working with an autism specialist to develop skills to better understand and cope with her Asperger’s.
Even so, she believes the balance is still tipping towards euthanasia.
“There will not be any type of miracle that at once I will have my life spirit back again,” she said of the therapy she has committed to, at least for the time-being.
“And for most of the time, if not all the time, I’m still thinking that euthanasia is the way that I will end my life and that will be the decision I will make.
“But the biggest difference, I guess, is if I go, I really want to have the feeling that I tried everything I could.”
“Road to Mercy” airs on CBC’s “Firsthand” and will be available for streaming at http://www.cbc.ca/firsthand/episodes/.