Not long ago, I was sipping my juice box and eating my chocolate-dip donut after giving blood, killing the required 10 minutes to make sure I didn't feel woozy. I happened to pick up an old, wrinkly copy of Businessweek magazine and flipped to a short story about Alzheimer's.
It was devastating.
Alzheimer's is always fatal. Nearly half of all seniors older than 85 have it. Research funding has stagnated at a pittance. A promising round of clinical trials recently failed. And, there are no other real treatment breakthroughs on the horizon. Alzheimer's and other forms of dementia will cost us trillions as all the boomers live longer. It already costs $150 billion in the United States alone.
Those mercenary details don't begin to describe the anguish visited on victims and caregivers whose lives are suspended, watching as memories falter, then the ability to speak, then logic and personality and finally all the basic bodily functions that keep us dignified. Bodies can carry on for years after the mind has retreated. Businessweek described an Alzheimer's brain as a shrunken, rotting cauliflower.
That image stayed with me for weeks. I talked about that cauliflower with many friends and thought of it again last week when Winnipeg MP Steven Fletcher bucked his party and introduced a pair of private member's bills that, I hope, will force us to finally deal with how we want to die.
One bill seeks to amend the Criminal Code to make it legal for doctors to assist in a suicide under very strict conditions. The other sets up a mechanism to monitor and review the law. Fletcher, who was a paralyzed from the neck down in 1996 when his car hit a moose on a Manitoba highway, spoke about his bills last week with a candour unusual for Ottawa. As a man who now lives largely in his mind, he said if his cognitive abilities were ever compromised, he would want the option to die.
In fact, in interviews he described a tricky operation two years ago to adjust a metal rod in his neck. He told doctors that, if the operation damaged his brain function at all, they should "just walk away from the table and don't worry about sewing me up. I would not want to live."
Even for someone who has spoken to Fletcher many times over his decade as an MP, it's difficult to fully imagine what his daily life is like. But think I would have told doctors the same thing.
Disability advocates are rightly worried any form of doctor-assisted suicide could lead to abuses, where people with special needs could be euthanized under the guise of mercy. Some also wonder if the elderly or the disadvantaged, at their most vulnerable and despairing moments, would be pressured to die by the medical system or family members. Canadian physicians are also, on balance, opposed to the notion of state-sanctioned assisted suicide, with many saying the practice is at odds with a doctor's fundamental caregiving role.
Fletcher says his bill offers strict safeguards against abuses, and there are few cases of assisted suicide gone wrong in countries like Belgium, where the practice has been legal for more than a decade.
Neither of Fletcher's bills would likely make it onto the floor of the House of Commons, because politicians of all stripes fear reopening an issue that has few electoral upsides. But Fletcher says he believes some form of right-to-die legislation is inevitable, and I agree. An Environics poll last fall found nearly 70 per cent of Canadians support physician-assisted suicide, a figure that has remained steady for years. Later this year, many expect the Supreme Court of Canada to reverse a 20-year-old decision and open the door to physician-assisted suicide.
Nearly every friend I spoke to, with naive incredulity, about the Alzheimer's cauliflower brain shook their head and said, if a cure doesn't come, they hoped there'd one day be a way to escape that inevitability with dignity and autonomy. For me, hopefully 40 years away from ever making that choice, the decision would be a clear and easy one, should dementia become inevitable and untreatable.
How many of us visit once-sharp grannies in nursing homes to find them sleeping all day, too confused to read their beloved Pierre Berton, unable to remember which grandchild they're speaking to, their life reduced to a few feet of beige hallway and two pairs of pants. These are just the gentle signs of aging, not the raging decline common among Alzheimer's patients. On the way out of the nursing home, my mum and I say to each other, no thanks.
The Welches tend to die suddenly, after getting home from a United Church meeting or quietly after a day outside in the zucchini patch. I hope that's how it goes for my parents. If not, I want them to have the choice to control their own deaths. I want the same choice to go with grace, while I have all my faculties, while I am still myself.
And if I don't have that choice, I at least want to know politicians had the courage to allow Canadians a fulsome, well-informed, compassionate debate about the right to die.