In March of this year, The Citizen explored the concept of medical assistance in dying (MAiD) using real-life stories from locals who have been touched by it in one form or another. Their stories are compelling and reflect a general appreciation for the Canadian legislation that was introduced in 2016.
The federal legislation, which legally permits a person to choose medical assistance to die at a predetermined time, has long been advocated for by proponents of Dying with Dignity Canada.
Initially, the legislation under Bill C-14 was introduced with tight controls, making it only available to mentally competent adult Canadians who make the choice to use MAiD from an unpressured state.
At the time, the patient had to be diagnosed with a grievous and irremediable medical condition causing them unbearable physical or mental suffering that cannot be relieved under terms they deem acceptable.
In 2021, amendments to the legislation determined that the medical condition of the patient no longer needed to be fatal or terminal.
Two years later, a joint committee on MAiD made a further recommendation to expand the program under Bill C-7 to make MAiD available to persons suffering from mental illness, including mature minors, without providing a minimum age limit.
Following some public opposition, the amendment, which was to be instated in March 2024, was bumped to March 2027.
Following The Citizen’s original article this past spring, other locals feel there is a dark side to this legislation that they believe deserves to be told.
Bethany’s Story
Bethany Daman is a former Niverville resident. She’s in her early thirties, married, and until recently enjoyed an active lifestyle, which included hiking and cycling and a full-time career as a communications consultant.
In many ways, her life was pretty typical of someone in her age bracket and socioeconomic status.
In her twenties, though, Daman started seeking medical advice for symptoms that included intense head, neck and back pain, dizziness, nausea, and brain fog. As time progressed, the condition began to affect her ability to walk and, at times, even move.
Eventually Daman was diagnosed as having Ehlers Danlos Syndrome (EDS), a connective tissue disorder that can cause lax and floppy ligaments, loose and painful joints, stretchy and fragile skin, gut problems, organ dysfunction, and problems related to moving and thinking straight.
Unfortunately, it took years of seeing medical specialists, one after another, as well as undergoing a barrage of inconclusive tests, before she was finally provided with a diagnosis. It was all in her head, doctors kept telling her, or simply a physical response to anxiety and stress.
For someone like Daman, now in a wheelchair and living with chronic pain and neurological issues, something like MAiD might be a viable option, especially when confronted with medical professionals who don’t believe you and a system that falls short of helping you find relief.
“It’s confusing to explain, but sometimes the thought of seeking care from practitioners who continue to dismiss and gaslight me feels worse than not seeking care at all and seeing how things progress,” Daman admits.
But Daman didn’t give up. Instead she began seeking help outside of Manitoba’s borders. Daman and her partner travelled for scans to two different clinics in the U.S. and one private clinic in British Columbia, all for diagnostics not available in here.
She finally got real answers when she found specialists at a clinic in Colorado that work with EDS patients like herself.
The news wasn’t good, but it was conclusive. Daman is suffering from instability where her skull meets her spine, a tethered spinal cord, as well as a chiari malformation which causes part of her brain to slide into her spinal column.
Of course, this out-of-country treatment comes with a hefty price tag. Daman recognizes the privilege that comes with having ways to finance those options as well as the privilege she experiences through the loving support of family and friends.
“I have received validation and the beginning steps of figuring out a care plan in a way that so many people haven’t had access to,” says Daman. “That is a really messed up aspect of everything that is happening. I know of countless other Canadians who have received medical treatment through very massive fundraising campaigns, but it is a privilege to be connected to a network of people who are able to contribute to your care.”
Even if you can financially manage this degree of outside intervention, she says, neurosurgeons here aren’t quick to allow non-Canadian medical diagnoses to inform their decisions.
In the meantime, her symptoms compound. Daman’s brain stem issues continue to cause further nervous system damage and, as of this spring, she struggles with breathing, swallowing, and digestion.
Continuing to act as her own advocate, she now has a team of international doctors with whom she consults and has undergone a stem cell treatment at her own cost. She’s heard about good success rates with spinal fusion surgery and hopes to pursue that treatment out-of-country as well.
“The challenge is the extreme costs associated with the treatment as well as questions related to follow-up care back here in Canada,” says Daman. “If I have a Manitoba neurosurgeon on board willing to sign off saying that these surgeries are necessary, then Manitoba Health will cover the costs.”
In order to sign off on her treatment, though, it can’t be deemed experimental in nature. But, Daman says, at some point a patient’s quality of life, as well as the desire to conduct further research through experimental methods, needs to come first.
In the meantime, for all the roadblocks she’s faced in getting help from the Canadian healthcare system, Daman says there’s some irony in the fact that MAiD is so medically available.
“I am incredibly supportive of MAiD legislation,” says Daman. “I think it is a very beautiful thing for people to be able to navigate a terminal illness on their own terms. But ensuring that our society has access to all ranges of medical diagnoses and treatments should be a priority before anyone is being offered MAiD. The thing that I’m hearing time and time again from others dealing with complex medical conditions is that they don’t want to die. They want care, but the idea of continuing to live in conditions of never being able to leave the house and living in debilitating pain for the rest of their life is very daunting. When you are not seeing people getting the care they need but you are seeing people qualify for and get approved for MAiD, it’s not okay.”
Daman doesn’t blame the country’s medical professionals for this disparity. They are working within a poorly structured system that allows limited time for patient consults and limited resources for research.
There doesn’t seem to be funding for multidisciplinary medical teams to collaborate on a patient’s behalf and no one’s there to advocate for the patient but the patient themselves.
“It’s hard to convince the system that these changes are financially worth it because the people making the decisions aren’t the ones experiencing the impact of their quality of life being taken away from them.”
The Value of a Life
Daniel Rempel is an assistant professor at Providence University College and another former resident of Niverville.
Rempel began to take an interest in MAiD after a decade of involvement with the disabled community. He’d worked one-on-one with intellectually and physically handicapped persons at both Envision Community Living and the St. Amant Centre.
When later choosing a topic on which to write his master’s thesis, he decided to research life from the perspective of a disabled person.
“I stumbled across this subdiscipline called disability theology,” Rempel says. “It’s rooted in just listening to disabled voices. There is a lot of evidence [to indicate] that these are people who have been kept out of conversations. When these people aren’t at the table, the conversations just naturally turn in certain ways. If we incorporate these voices, even prioritize these voices, how does that shift the conversation?”
Through his research, Rempel discovered that the disability community has been sounding alarm bells from the very earliest discussions on MAiD. He wonders if enough is being done to promote the innate value of every life.
He grew up in Niverville during the years when a young local man died by suicide. It opened the door to a movement centered around destigmatizing mental health struggles.
“I grew up in this town in the era of Imagine,” Rempel said. “The [message was], ‘Your life is worth living. You have value and worth and we want you here. Yes, you’re struggling but there’s supports and help available.’ But there’s an angle of MAiD that just seems to throw that all out the window.”
This is especially true as MAiD legislation is introduced for those who struggle with mental illness.
Rempel is not for a second suggesting that MAiD has no place in society. He simply hopes that the process can be slowed down somewhat until thoughtful consideration is given to how we view the value of human life.
Not so many years ago, it was difficult for a person with mobility issues to get around city sidewalks and public buildings. Today, that process has been made so much easier with the incorporation of mobility-friendly infrastructure.
It’s things like this, Rempel says, that improve quality of life and reinforce the value of each individual’s existence.
On the other hand, he cites an example of an Ontario woman in her thirties who was collecting provincial disability cheques. She lived in an apartment that was affordable according to her limited disability income but developed a severe reaction to a chemical inside the building.
“She couldn’t afford to move anywhere else and so she decided that the only way to move forward was MAiD, because that was the only way to eliminate her [physical] suffering,” says Rempel. “Well, another way would have been to give her the supports that she needed.”
Partly, he says, it’s a societal problem. We don’t want to be a burden on anyone and we don’t want to ask for help in times of need.
That stems from a culture that puts strong emphasis on being independent. At the same time, that independence tells us that it’s okay to put ourselves first and let others look after themselves.
We’ve moved so far, he says, from the idea of community.
“The role of community is really important. Whether that’s family or our town or a religious community or a friend group or a sports team, community is the fullness of all those interconnected expressions of life lived together. And when somebody dies, that irreversibly changes our community.”
Creating community is as simple as being intentional in our friendships, he says. The elderly, the sick, and the disabled are among the loneliest within our communities and also the most vulnerable when it comes to choosing MAiD.
“The impetus should be put on those of us who are able to share a little bit more of the load,” Rempel says. “Equity rather than equality. Justice. Thinking about the flourishing of all people. I really think that it starts on a person-to-person basis.”
The Creation of a Healthy Population
An academic journal was published in April of this year in the Canadian Journal of Disability Studies out of the University of Waterloo. It’s working title: “Canada’s Medical Assistance in Dying: Eugenics under another name?”
Like Rempel, the author, Valentina Capurri, takes a hard look at the message MAiD legislation sends about the value of human life.
She uses a historical argument to suggest that MAiD is in fact a form of government-sanctioned eugenics. Eugenics is the belief that the human species can be improved with the removal of those with undesirable traits.
“Variations of eugenics that are detectable in numerous countries encompass gender selection practices as well as references to the lives of the elderly or the disabled as ‘burdensome,’” Capurri writes. “The latter is the focus of interest in this article since I suggest that our understanding of what constitutes a life worth living encourages disabled and diseased individuals to conceive of their existence as worthless and to look at assisted dying as a possible solution to what is regarded as a problem for the state, for communities, and for individuals.”
Instead, she continues, the goal of any government should be the creation of a healthy population, to frame disability and disease as still being compatible with a quality life and perceived as a perfectly legitimate way to be in the world.
The article goes on to look at the statistics generated from those Canadians who pursued MAiD in the first year after legalization.
A large portion of the applicants, she says, did not indicate “enduring and intolerable suffering” as their reason for requesting MAiD. Instead their reasons revolved around their loss of autonomy and independence, thus becoming a burden on their loved ones.
“Codependence and not independence is what characterizes human life,” Capurri says. “Suffering, caring for, and being cared for by others are vital parts of the human experience. Putting into place a program through which we rid the possibilities for these experiences does us a collective disservice.”
Capurri agrees with Rempel that society plays a role in establishing the value of a human life. In a poll taken in 2023, 27 percent of respondents did not oppose the idea of allowing a homeless person or those living in poverty to apply for MAiD.
Still another poll conducted by the Angus Reid Institute indicated that three out of five respondents worry that MAiD will be seen as a viable alternative to difficult-to-access healthcare supports.
This number was highest among those living with a severe disability, arguably the group that is most directly affected by Canada’s healthcare system.
And it’s no wonder, Capurri says, when Canada has among the lowest social spending of any industrialized country as well as abysmally long wait times in the public health sector.
“Little has been published on how helping people die might end up saving federal, provincial, and territorial governments monies by freeing them of the responsibility to financially support Canadians in need and to cover their healthcare expenses,” Capurri asserts. “That is an aspect of the discussion that goes largely unexamined.”
Even so, she cites a report from October 2020 by the Parliamentary Budget Office in response to a senator’s request for an estimate on the cost of MAiD.
Based on those results, the cost to administer MAiD under Bill C-14 was in the range of $22 million. At the same time, the gross estimate on the reduction in healthcare costs as a result of individuals’ use of MAiD came to approximately $109 million.
With the introduction of Bill C-7, which would extend to individuals with mental illness, it is estimated that the net healthcare cost reduction would be further increased by $62 million.
“In conclusion… it remains to be seen whether, with the legalization of medical-assisted dying, our world will be perceived by future generations as enlightened or dystopian.”