A Winnipeg man with a degenerative condition fears the delay in physician-assisted death legislation will kill his chances of accessing one.
"John" (not his real name), told the CBC he was "deeply disappointed" when he learned the committee of lawmakers tasked with crafting the federal legislation were given an extra four months to do so. They now have until June to produce the new law -- a full 16 months after the Supreme Court of Canada recognized the rights of consenting adults enduring intolerable pain to end their lives with a doctor's help. Since that historic decision, John has been waiting for the new legislation to be crafted and enacted.
The latest delay means his efforts to map out the rest of his life — and death — are in limbo.
"It's disturbing to me," said John, who has not told most of his family and friends of his plans to die. "Whether I'll qualify to be assisted, I don't know. I don't know what it will say. Because if it's simply, 'Take me off a machine or take off my medication', it's not going to help me much."
'If it's simply take me off a machine or take off my medication, it's not going to help me much.' - "John", a Winnipegger seeking physician-assisted death.
The Winnipeg retiree's case reflects some of the ethical and legal hurdles the committee now faces as they attempt to hammer out the new law.
Medical condition torturous, not terminal
John said his medical conditions will not kill him, but the combination of them is progressively debilitating; severe spinal osteoarthritis and a recent diagnosis of a Parkinson's-like "condition" already make walking and talking difficult. He manages his chronic pain with prescription medication. At some point, swallowing will become more difficult. Ultimately, he will be confined to a wheelchair, an eventuality he wants nothing to do with.
"Being wheelchair-bound, there are some people that are happy being wheelchair-bound or accept it," he said. "Others do not. I would not accept it."
The question is, will the new legislation accept it? Thus far, the Supreme Court of Canada dictates that only persons living with a medical condition that "causes enduring suffering that is intolerable" will be eligible to access physician-assisted death. Critics from the disabled rights community warn that this definition is too vague. It leaves persons with disabilities in a vulnerable position, measuring their quality of life by their level of mobility.
Another challenge: does one's mental state constitute intolerable and "enduring suffering?" Mental health advocates fear the new legislation will make it far too tempting for those living with depression to access a suicide instead of recovery. Others, like John, say if it is an anguish over a condition beyond one's control — like a degenerative disease — it should be deemed a viable reason to seek an assisted death.
"You can be mentally agonizing over a disease," he said. "That suffering could be intolerable. So it's going to be a matter of interpretation."
Physician's role still unclear
There is also a question of the physician's role in assisted deaths. John plans to tell his doctor about his plans, but he has no idea what the reaction will be. And now, thanks to the legislative delay, he has no idea how doctors will be mandated to handle cases like his, if they don't approve of physician-assisted deaths.
"What will I do if I need to find another physician? What will the law say about that?" he said.
In the meantime, he said, he will explore other options: most likely, start the lengthy process of accessing an assisted-suicide in Switzerland, where it is legally provided to foreigners.
"I don't want any pity, I don't want to be looked upon as disabled," he said. "I've lived a good life in spite of my issues."