MAiD + 5 Years: Friends and Family - Awareness and Opinions
Five years ago, my husband, Jack, died with medical assistance (MAiD).
I first told the story of his death spontaneously at a conference three weeks afterwards. It wasn’t easy but the 100 people in the room were curious yet too scared to ask their questions: how did Canada’s two-year old MAiD law work; what were the mechanics of arranging it; how easy was it for Jack to make the decision; and what was it like for me. I knew if I shared my experience that day and every time I’ve written* or spoken about it since, I could educate and help pull back the veil that hangs in front of the rich human tapestry of dying, death, and grief.
MAiD - and death more generally - affects more than a spouse, however. Jack invited eight family members to be with us while he died; I had a half dozen friends on deck at a neighbour’s place to support me when his family left; and there were another dozen or so people whom I called as quickly as I could that evening so they would hear the news personally before I released the obituary. Until now, I’ve never canvassed their views about MAiD and their reflections on Jack’s death.
Of the 32 people I surveyed, I was pleased that 16 replied. Fourteen of those live in Ontario. Jack’s older sons live in Poland and Ireland respectively, strongly Roman Catholic countries where it’s difficult to imagine MAiD could ever be legal. The ages of those who provided me feedback range from 34 to 95 with the average of 65. Only one respondent is non-white and non-Christian. Most of the others would consider themselves not religious. About half are university educated. Three-quarters of them are women.
My point: this is not a representative sample of any population, likely not even representative of those I asked. Nonetheless, I’m sharing the results because I hope there will be something in what my friends and family have said to help demystify MAiD and make people more comfortable with it.
This is a two-part blog: today, I will talk about awareness and opinions. Tomorrow, we’ll get into the memories about Jack’s death.
MAiD in Canada:
The original 2016 MAiD legislation, Bill C14, provided for a very narrow right: if two doctors independently determined a MAiD applicant was intolerably suffering from a grievous and irremediable condition and death was reasonably foreseeable, once the candidate met some administrative requirements, they could invoke the right to die, but only so long as they had the capacity both at the time of the assessments and again at the time of the MAiD provision. This was the regime in place when Jack died and of the criteria, it was only the capacity issue that was of concern, as cancer had infiltrated his brain and his spinal fluid, causing some periods of disorientation and hallucination.**
In 2021, Bill C7 expanded the right to include a second category of eligibility which remains in place today. A MAiD applicant no longer requires a reasonably foreseeable death, although grievous and irremediable suffering remains a criterion. To offset the slight opening of the window, the 2021 amendments include extra safeguards for these “track 2” candidates, like a considerably longer waiting period from the date of eligibility. While arguable, the 2021 amendments might have allowed people whose only underlying condition is a mental illness to qualify for MAiD, they were explicitly excluded at the time. Initially, the exclusion was to have been lifted in March 2023. That was extended until March 2024 to provide additional time to prepare for the safe and consistent assessment and provision of MAiD in these cases.***
MAiD Respondents’ Awareness and Views of 2018 Law:
All but one of my Canadian respondents knew MAiD was legal before Jack’s death but given it was relatively new in Canada, it’s not surprising that five years ago, only one respondent had known someone else who’d opted to die this way. Many, however, reported knowing of others who’ve chosen MAiD in the five years since.****
I’m a MAiD widow with a semi-public profile as a MAiDvocate - someone who is pro-choice about MAiD, and keen on informing others about the right. Because of this, I am very aware that some people are reluctant to tell me if they have reservations about it. I asked, nonetheless.
Nearly everyone reported that even before Jack’s death, they approved of MAiD in its 2018 form and that their opinion was unchanged by his choice. Most have told others about Jack’s decision to die with MAiD, although some report sharing the story depends on the audience. My mother, aged 95, is proud she’s engaged many others in her retirement home on the topic! I was particularly struck by the certainty Jack’s two overseas sons had about telling the story, noting that people need to know about MAiD. While it is legal in some European countries and being contemplated in others, they noted the status of MAiD in Canada is not part of the discussion in Europe.
I was grateful one friend trusts me enough to let me know she has felt conflicted about MAiD, concerned that “legalization would be too blunt a tool to prevent the embrace of something potentially very problematic and further that it would open the way for abuse, even perhaps eventually leading to state sanctioned murder.” Knowing about Jack’s circumstance, however, helped her see why MAiD could be a right choice. I was pleased she shared that with me.
Another said that while it is against her Islamic faith, she thinks “people should have a choice about their wellbeing and quality of life,” and isn’t, in fact, sure what she would decide if she were in the position Jack was in.
MAiD Views about Current and Proposed Expanded Law:
The 2021 expansion of MAiD and discussions about loosening the criteria further has received some backlash in the media and on social media. Some oppose it on religious grounds. Others claim MAiD is another privilege afforded wealthy, educated, white people. Yet others think people may choose MAiD because our social safety net is failing and vulnerable groups may be coerced or feel they have no choice but to choose death over a difficult life.
One of my respondents who is in the development disability service sector said she has no issue talking about it but referred to this being a “hot topic in the context of disabled people who may or may not be able to speak clearly or make choices for themselves.” Even I have found myself more muted in my discussions with friends or professional contacts who work in the disability sector.
Several people who answered my questions shared their concerns about the proposed expansion in 2024. A MAiD supporter summed it up: “Where it gets murky for me is around those folks struggling with mental illness - especially anxiety and depression.”
One respondent told me she enjoys life “despite having an incurable mental illness.” She expressed her view that: “it is disgraceful that, in a wealthy country like ours, people consider MAiD because they do not have enough money!” I couldn’t agree more and we need to redouble our efforts to ensure people are not forced into that difficult position.
Others understand the underlying purpose of expansion is to provide choice to more people, trusting the system of safeguards intended to ensure vulnerable people are not targeted. One respondent referred to the “preposterous allegations that the proponents are trying to kill suicidal teenagers.”
MAiD: What's next?
We’ve already seen that Canada’s MAiD law is a dynamic one, with the 2016 law being expanded already in 2021, and another scheduled for 2024. We can fully expect that the story will continue and some of my respondents referred to further expansions under review.
For example, one told me the talk about whether to include “mature minors” (children under 18) worries her, because like many, she’s concerned about the ability of younger people to make such weighty decisions.
Most Canadians however agree with the idea of advance directives. This is the idea that I could decide now under what circumstances I would want to die later and that those wishes would be honoured even if I didn’t have the capacity to consent at the time of my death. This has been championed in Canada by Pamela Wallin, a senator and former national journalist, whose family has a history of Alzheimers. Three years ago this month, she spoke in the Senate saying:
I personally believe that anyone should have the right to a legal advance request in a living will. No one who loses capacity unexpectedly in an accident should be forced to live the rest of their life in a hospital bed until they die. That’s why we have pre‑existing, do-not-resuscitate orders. I see an advance request as an exercise of that same right. Our clearly stated, well-documented decisions on our own lives should be respected and upheld, even after losing conscious ability to reaffirm that decision in the moment.
Canadians overwhelmingly support advance requests; 86% agree that people with serious degenerative and incurable disease should be able to request and obtain medical assistance in dying. And 74% said MAID should be accessible to those with incurable diseases, even if their death is not imminent.*****
A number of my respondents who’ve seen people lapse into dementia in late-life spoke out in favour of this too. One was blunt: “if I knew I was getting Alzheimers, I would not want it to progress. I would want to end my life.” Another said that having pre-dementia wishes respected is “the best way to preserve dignity and purpose.”
As our legislators weigh studies of other countries’ experiences, public opinion, and all the other factors that go into governments’ decisions, the one thing I’m confident of is that Jack’s decision to die with medical assistance was the right one for him. His choice was not between life and death but rather between death he could control and an unknown and unpredictable death.
Stay tuned for tomorrow when I will release part 2 of this piece: a dive into the reminiscences of those around us when Jack made that final decision.
*If you haven’t read my story, here are links to previous blogs.
** This is addressed in many of my pieces but “Passwords of a Dying Man,” a piece published by Gemini Magazine, gives a good illustration of why I was anxious about this.
*** For more on this, read the government’s press release here.
**** This is not surprising: legalized only in June, 2016, by the end of 2018, just 2,530 Ontario residents had died with assistance. By 2022, the number had risen to 3,934 over the year, or about 3.2% of deaths. 63% of those had cancer as the underlying condition and lung cancer, the cancer that would have killed Jack naturally, far outstripped all other forms. For more statistics, click here for the fourth annual report on Medical Assistance in Dying in Canada 2021.
***** Click here to read Wallin’s full statement.
Want to know more? Here are some websites with information about MAiD in Canada:
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