How medical assistance in dying law has affected my family: A caregiver's perspective
MAID isn't about hypothetical cases in an academic debate, it's about real people who are suffering
This column is an opinion by Jason LeBlanc, an independent MAID researcher and advocate for fair medical assistance in dying (MAID) laws. His partner has applied for a medically assisted death three times. For more information about CBC's Opinion section, please see the FAQ.
Accessibility issues around medical assistance in dying in Canada are often spoken about within the parameters of "slippery slopes," bioethical arguments with no clear answer given, and the discriminatory unfairness currently upheld by MAID legislation.
What often gets forgotten is that MAID isn't about hypothetical cases in an academic debate, it's about people. Real people who are suffering.
Chapter 7 of the Charter of Rights and Freedoms states, "Everyone has the right to life, liberty and security of the person and the right not to be deprived thereof except in accordance with the principles of fundamental justice."
In other words, every Canadian has control over their own life.
In this spirit, you have the right to make decisions on your health, medical care, and bodily integrity. When a Canadian is compelled to take their life through violent, unpredictable, and dangerous means, because the government refuses to allow them the control and choice of a medically assisted death, it is a violation of those Charter guarantees.
The current federal MAID legislation was ruled unconstitutional last year because of restrictions it placed on eligibility, and on Feb. 24 this year the government tabled proposed amendments. While they expand eligibility to a small degree, the changes still fall short of the mark for many Canadians.
My family is one that has been affected directly as a result of the government restricting MAID access to a select few. I am a caregiver to a wonderful woman, my common-law partner, who has been attempting to access a medically assisted death for more than two years now.
With the help of Dying with Dignity and Ontario's care co-ordination service, she has received three independent assessments. She has fulfilled the entirety of the MAID criteria with the exception of not having a "reasonably foreseeable death," however one chooses to define that term.
Of course, under Bill C-7's proposed amendments, an applicant no longer has to be facing a reasonably foreseeable death to apply for MAID. But this doesn't inherently mean that it will be a simple, straightforward process to qualify. As the Department of Justice puts it: "While 'reasonable foreseeability of natural death' is removed as an eligibility criterion in the proposed legislation, it is kept as a way of deciding which procedural safeguards will be applied to MAID requests."
My partner's diagnosis is treatment-resistant fibromyalgia, an often poorly understood form of chronic pain involving a cluster of symptoms that affect the whole body outwards from the central nervous system. Despite the fact that her pain is unrelenting, constant, intolerable, and irremediable, her diagnosis does not put her on track to a naturally shortened life span.
It is this factor that has excluded her from MAID for more than two years.
For years we've done everything possible to improve her quality of life and to control her pain. She's tried over 30 medications, undergone extensive hospital testing, tried various forms of physiotherapy as well as non-traditional medicines and therapies, and been seen by five independent pain specialists.
The decision that was arrived at, to seek MAID, is not emotional, unreasonable, or lacking in proper mental capacity in any way.
The amendments in Bill C-7 would potentially allow her access to a medically assisted death, but under a new set of conditions. Instead of empowering Canadians to have the autonomy to make their choice, the power – nearly all of it – still lies in the hands of assessors, providers and practitioners.
One of the two independent MAID assessors who determines eligibility must have expertise in the condition that's causing the person's suffering. I am thankful we don't live in a rural community where little specialized expertise exists or where access to it is subject to a waiting period of months or years. But even so, it's still unclear whether such an expert exists for my partner's specific condition and/or how that expert's personal feelings about MAID might influence such a decision.
Under Bill C-7, there is also now a minimum of 90 days for the assessment of a MAID request. Justice Minister David Lametti refers to this not as a "period of reflection," as it was called under the existing law, but rather a "period of assessment." Regardless of what it's called, this means a longer wait. Before, the "reflection period" was only 10 days.
Under the amended legislation my partner fulfills a criterion that will on one hand deem her suffering "intolerable," and on the other, ask her to tolerate said suffering for at least another three months — with the potential outcome that she'll still be denied MAID at the end of the assessment period. A cruel reward.
As a caregiver, I am left here to watch.
I am powerless. I cannot cure her pain, nor can I stop her suffering. I hear her demands for MAID, but I cannot provide her with assistance in death. I also do not have any answers about why the government believes it is their decision — and not hers — that she continue living despite it being clearly against her will.
It has been a very, very long couple of years waiting for the government to advance, converse, and evolve on this legislation. The government's rules on MAID have left her to suffer, for suffering's sake. It is by miracle of her own strength and sheer determination that she is still here, and that I have not woken up one morning to discover that she's attempted to take her own life.
In statements made to the media, I see our federal Justice Minister David Lametti and Health Minister Patty Hadju continue to use terms like "safeguards" to hide restrictions and "respect of individual autonomy" to hide exclusion. They say, "protect the vulnerable."
To this, I say my common-law partner is the most vulnerable person I know. Look at what the government has done to her. The trauma they have forced her to endure is nearly unforgivable.
My experience is not unique. Many Canadian families are facing the same dynamics. There are cases of Canadians who have died by suicide after being denied a medically assisted death. These are stories that do not fit into the narrative the government has positioned around medical assistance in dying.
The undignified manner of these deaths is entirely avoidable, and these are only some of the cases we know about. How many have suffered, and are still suffering silently, is unclear.
From disabled Canadians wanting MAID access, to people with chronic pain, to those suffering with treatment-resistant depression and other forms of mental illness, the government's message with the Bill C-7 amendments is, "We know better and we aren't willing to grant you the autonomy to make your own choice."
This brings us back to the Charter, Chapter 7, and the right to life, liberty, and security. I don't remember seeing anywhere that Chapter 7 was optional. Why does the government think so?
The government and MPs on all sides have shown a lack of leadership on this issue, and seemingly refuse to acknowledge the consequences of their vote on MAID for those who are suffering.
The Quebec court decision that motivated the introduction of Bill C-7 was rendered in September of last year. The most recent extension provided by the Quebec Superior Court to revise the existing MAID policies has provided the government with a new deadline of Dec. 18, 2020. This is the second such extension, and will mark 15 months since the original court decision with no change produced as of yet.
As the government moves forward with the proposed MAID amendments and with no details on re-scheduling the parliamentary review that was originally planned for June, this speaks volumes for how our government views revising medical assistance in dying.
It is imperative that our elected officials consider the impact their restrictions, which they've falsely maintained are fair and balanced, have on real Canadians. Legislation carries with it consequences, and the failures of the last government's attempt at equitable MAID cannot be repeated.
This is Canada's opportunity to fix MAID. My family and others are watching intently.