John Priddle loves listening to blues and if the day comes that he can’t enjoy it anymore, he wants to die. His death is likely years away, but before then the 63-year-old Victoria, BC resident expects to suffer as his mobility and speech break down from a rare degenerative disorder known as Friedreich’s Ataxia.
“Every year, very slowly, it gets progressively worse,” said Priddle, who was diagnosed with the disease almost 16 years ago. “And I realize that if I live long enough that essentially what’s happening is that my ability to do anything, including to have a coherent personality, is slowly being deconstructed at the cellular level.”
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Already his speech slurs and he walks with a cane. Eventually he will need a wheelchair and then a bed, as his spine curves due to scoliosis. There is no cure and people with Friedreich’s usually die when their heart gives out due to the disease.
When the right time comes, Priddle wants the option to commit suicide with medical assistance. But unless it’s amended, the legislation announced this week by Canada’s Liberal government won’t give Priddle that option.
When she unveiled the new right-to-die law on Thursday, Justice Minister Jody Wilson-Raybould said she was “confident” it was consistent with the Canadian Charter of Rights and Freedoms. But legal experts and civil liberties advocates say a constitutional challenge is around the corner if the law isn’t amended to include people like Priddle.
At issue is the narrowness of the proposed law, which restricts medically-assisted death to mentally-sound adults over 18 who have a “serious and incurable illness, disease or disability” and voluntarily consent to die. People who are intolerably suffering but not facing “reasonably foreseeable” death will not be covered.
“It’s stunning to me. I am very surprised,” says Dalhousie law professor Jocelyn Downie. “I am floored that they have restricted it in this way with respect to the advanced state of irreversible decline and reasonable foreseeability of death.”
“If the legislation is passed as is, there will absolutely be a constitutional challenge,” Downie said.
Related: Canada Has Unveiled Its Plan to Let Sick People Die by Physician-Assisted Suicide
If it that occurs, she says many people will fall through the cracks because it could take three years to wind through the courts, and in that time people who aren’t eligible for medical help in dying could suffer or try to take their own lives, unless they have the resources to take their fight to court.
The Liberals announced the legislation in response to a Supreme Court of Canada decision that struck down criminal laws against helping someone die if they are suffering. Known as the Carter decision, Canada’s highest court gave the government a year to come up with new legislation governing the right to die.
On Thursday, the BC Civil Liberties Association that launched the challenge argued the proposed law’s wording of “reasonably foreseeable death” is unclear, and arguably the new rules wouldn’t allow one of the people at the heart of the original case to access assisted suicide.
“Kay Carter, who was the individual at the centre of our case, had a condition called spinal stenosis,” explained Josh Paterson, executive director of the BCCLA. “It’s not terminal. It doesn’t kill you, it wasn’t going to kill her, but she was trapped in a situation of intolerable suffering on account of a grievous and incurable illness. The Supreme Court said that people in her situation shouldn’t have to be trapped in that kind of suffering — not a terminal illness. Her natural death could have been many years down the road. Is that reasonably foreseeable? I don’t know, but it sounds to us like this legislation could be interpreted to exclude the very people who brought this case forward in the first place.”
Priddle believes competent Canadian adults should be able to choose in advance the kind of death they want when they have the mental capacity to do so. Such an allowance could apply to people who have dementia running in their family, he says, or for people like himself, with catastrophic illnesses where the prognosis is pretty clear.
‘If the legislation is passed as is, there will absolutely be a constitutional challenge.’
“In some cases with ALS, people drown in their own fluids,” he said.
But not everyone agrees with him.
The Alzheimer’s Society of Canada (ASC) believes that disorders like Alzheimer’s don’t leave patients with the ability to freely consent to die at the end of their life. The disease is progressive and incurable, and people who have it will eventually be unable to make decisions about their own treatment and care, the organization says. That could leave them extremely vulnerable to abuse, the organization’s CEO Mimi Lowi-Young says.
Often a person with Alzheimer’s or dementia will write an advance care plan to guide those close to them in how to care for them. But when it comes to medically-assisted suicide, the society says “the person needs to be capable of retaining and understanding new information, analyzing the information and making an informed decision.”
“Consent must be clearly expressed and voluntary — at the time that medical assistance in dying is provided — and the person’s ability to make decisions must be carefully assessed to ensure that she/he is able to understand the information provided and the consequences of making a decision to end their life.”
“All of these abilities may be impaired in people with dementia and consent will not be possible at the time of medical assistance in dying or throughout the mandated period of reflection,” the organization believes.
Related: Quebec Doctor Administers First Legal Assisted Death in Canada
As an alternative to medical help in dying, ASC advocates better palliative care resources, which the federal government said Thursday it is committed to funding.
Meanwhile Canadian Catholics have echoed Pope Francis’ stance that assisted suicide is a “serious threat to families worldwide.” Ottawa Archbishop Terrence Prendergast has said Canadians are committing a “morally great evil” if they opt for medically-assisted suicide.
Still, those who say it doesn’t go far enough hope they won’t need to resort to the courts, again.
“I desperately hope it doesn’t need to face a constitutional challenge because that would be putting an incredible burden on people who are already facing incurable and intolerable suffering,” said Downie, who is hoping amendments will be made to the bill before its final approval.
Priddle says he is already making alternative plans in case his condition significantly worsens and Canada doesn’t allow him to legally access medical help to commit suicide.
“Yours truly is making his own arrangements, and I will make sure that if they require me to go to another country to seek out what I think I want to seek out, I will make sure that I have resources to do it,” he says. “But would a competent adult do any less if he or she could?”
Follow Hilary Beaumont on Twitter: @hilarybeaumont
