Steven Fletcher was the first permanently disabled member of Parliament and federal cabinet minister. He served four terms as a Manitoba MP from 2004 to 2015.
A harsh definition of life is the amount an individual suffers between birth and death – and we must not underestimate the amount of physical, emotional and psychological suffering that an individual can experience. This is grim, but it is also the reality for many people.
I know this firsthand: I know the kind of physical pain where you think your head will explode, the kind of pain that you’d do anything to make stop. At 23, I was paralyzed from the neck down in a brutal, random collision with a moose that wandered into the road. Months later, on a ventilator and unable to move or speak, I was introduced to the terror of potentially drowning in one’s own phlegm after each breath, minute after minute, day after day, week after week, month after month. It was a form of torture, even if it was well-intentioned and necessary for keeping me alive. I felt a tsunami of sadness as what-if scenarios filled my mind, stirring intense emotional pain and mental-health issues that were insidious and relentless. I was racked by the realization that there were so many wonderful things about life I had taken for granted that I’d never experience again.
If medical assistance in dying (MAID) had been available in those early days, I certainly would have taken advantage of state-administered death. It would have been much better than the well-intentioned state-administered torture that I was experiencing. If you faced these options at 23 today, I suspect you would also choose MAID. After all, it removes the terrible prospect of being trapped in your own body in a hopeless situation, and allows people to move on, on their terms.
But still, I had hope. I’m not sure why, but painfully and slowly, I was making progress. So when I was presented with a scant number of terrible options – I could stay in the hospital, choose between one of two nursing homes, or, if I was really lucky, try to get into a long-term care facility – I realized that the only way to deal with my situation was to deal with it. I had to take responsibility for my own life, make it a point to not be a victim, and make the best of a bad situation by focusing on what was in my control.
I broke down the massive challenges I faced into manageable chunks. First, I had to tackle the problem of needing 24-hour care; I learned at the time that the Manitoba government was piloting a program called Self-Managed Care, which provided resources directly to an individual to manage, rather than to an institution. It was a quantum leap in public policy and made incalculable benefits to many people.
Then I had to find housing. The government funding I got was only enough to pay a minimum wage to a caregiver for just a portion of the day and I could no longer do the engineering work I had been doing for gold mines before my accident, so I couldn’t afford accessible housing. But I found a one-bedroom apartment and relied on bed baths for years. To find different work, I studied for and wrote the GMAT exam; eventually, I got accepted into an MBA program, which helped open doors where once there were only walls.
Day by day, year after year, I laid down foundations so that hope could build on hope. I never asked for any favours or special treatment; I knew I had to compete on my own abilities from the neck up. And in 2004, I was elected as a Conservative member of Parliament; I went on to enjoy a successful 11-year run in Ottawa, which included serving as the senior shadow minister for Health for the Official Opposition, as a parliamentary secretary for Health in Stephen Harper’s government, five years as a full-fledged cabinet minister in the government on a slew of critical cabinet committees and the minister responsible for numerous crown corporations, such as Canada Post.
Of course, how easy it is to write these words almost 30 years later: After my injury, it was hell! No, it was worse than hell; at least in hell, you have company to share your torture with. I was alone, trapped in my body, unable to talk or write, in mind-blowing physical pain with a terrible prognosis. I was lucky to get the housing I could find; I still had to rely on a caregiver, at home and in Parliament alike; my rehabilitation continues to this day. Yet, though I was broken inside, I powered through it by maintaining a positive outward appearance and keeping hope, knowing the other options were awful.
These experiences formed my views on dying with dignity: I support MAID, but there must be safeguards. Living, whenever possible, should be the goal.
In 2014, I became a backbench MP, affording me the time to pursue crucial public policy issues that did not get the attention they deserved. I took the opportunity to introduce two private members’ bills in the House that would have allowed for medical assistance in dying. The first was aimed at removing the provision in the Criminal Code that provided a blanket prohibition with severe penalties for anyone who assisted someone in ending their life (including precise language that limited MAID to individuals over 18 with full cognitive ability); the second was designed to collect data on the individual decisions around choosing MAID.
Canada’s political parties all lagged behind public opinion on the issue of MAID, however, and my bills never came to a vote. And so, rightly or wrongly, the law was ultimately changed not by our elected Parliament but by the Supreme Court of Canada. In its 2015 decision Carter v. Canada, which struck down the prohibition against MAID, the court granted Canadians what many wish for when they are dying: some control. It even borrowed language from my bill in the ruling, with critical portions referenced.
But in recent years, the pendulum has swung too far in the other direction. MAID can now be offered when a person’s natural death is not reasonably foreseeable, after a Quebec court ruled that this eligibility criterion was unconstitutional in 2021. Some have advocated for minors to have access to MAID, rather than strictly limiting it to the age of majority; a joint parliamentary committee that tabled its report in the House of Commons last week recommended that the government make minors “deemed to have the requisite decision-making capacity upon assessment” eligible for MAID. And while psychiatric MAID was scheduled to be implemented in March, the federal government is delaying those efforts, as critics voiced serious concerns about offering MAID to Canadians suffering solely from mental illness.
Some of these debates are more academic than anything. Legitimate underage MAID requests would be rare, and they represent moral hazards that can cause great grief and loss. Mandating adulthood is a crucial safeguard; if suffering Canadians reach the age of 18 and are still requesting MAID, it relieves that moral risk. The younger the individual is, the more hope they should have. Death should not be an option. Therefore, I fall on the side of caution: I do not see a path by which a teenager should receive the ability for state-administered death.
On the more complicated issue of psychiatric MAID, it appears that, by definition, one would not have the cognitive ability to make such an important decision. Worse, there have been recent reports of Canadians requesting psychiatric MAID but citing housing issues or other social ills. These are awful reasons for MAID. However, they demonstrate the importance of safeguards and of collecting data that can inform policy makers and the public.
Rather than expanding MAID to the mentally ill, Canada should expand resources and services for them, while educating the public on the root causes of mental illness, particularly if there is a path toward prevention or mitigation. The joint parliamentary committee recommended that governments work to improve home-based palliative care and to support people with disabilities with poverty reduction measures; the Expert Panel on MAID and Mental Illness also said much the same, proposing that “serious consideration should be interpreted to mean genuine openness to the means available to relieve suffering and how they could make a difference in the person’s life.” We should be serious in seizing these opportunities to help Canadians with mental illness, before things become so dark that they consider death.
Unfortunately, this will result in some cases where unthinkable suffering is unavoidable. There will be cases in which all the resources in the world won’t be enough to help. But I say this with great empathy, and from personal experience: Suffering is part of what it means to experience life. It is fundamentally unfair. What is in our control as individuals and as a society is to minimize and mitigate suffering for as long as possible for all of us and find creative solutions, such as Manitoba’s self-managed care program, that can give people control. In this way, people can choose life when there is hope.
MAID certainly has its place. After I championed MAID in Parliament, strangers and friends have frequently come up to tell me – in tears, usually – how their family members passed away using MAID, and how grateful they were to have access to it. What needs to follow is a serious effort to alleviate suffering, with fresh ideas from all political parties.
Canada is a land of possibility. The health care professionals who told me I would have to be institutionalized after my accident could never have guessed that the institution I’d end up in would have been Canada’s Parliament. It is undeniably good that we have more options now – but it’s just as important to keep alive the kind of hope that got me here.