One day, before the pandemic arrived and wreaked its depredations on our health care system, I was driving with the radio on and heard, within a single, five minute, top-of-the-hour news recap, both a story about the federal government’s Medical Assistance in Dying (MAiD) agenda, and a report that there was a serious shortage of personal support workers in Ontario.
I wondered at the time whether that shortfall might make people more likely to seek MAiD.
The federal government’s new MAiD legislation has made that question acute. In mid-March, Bill C-7 received royal assent, expanding access to medical assistance in dying to people whose natural death is not reasonably foreseeable, rendering “MAiD” a misnomer. We are no longer “assisting” dying when the people to whom the practice is available are not dying.
Even for those of us who regard MAiD as a tool of compassion with a legitimate role to play in health care, this legislation is dangerous moral phlogiston, an imagined substance that alchemists of the early modern era theorized let objects burn without making the air around them combust. When the statute mixes with the reality of limited resources in services such as the counselling, mental health and disability support it names, it will set off a moral crisis.
Canada is in the position of becoming a society that is willing to terminate lives rather than ensure that those suffering grievous and irremediable medical conditions have access to the kinds of support that could make living with those conditions bearable.
The legislation’s safeguard provisions require that a person seeking MAiD be informed of the means available to relieve their suffering, “including… counselling, mental health and disability support services, community services and palliative care… [and] consultations with relevant professionals who provide those services or that care…” However, it sets no bar as to what kind of services and professionals are actually available to someone.
We know availability is not uniform across the country. This is tacitly acknowledged in the requirement that assessors discuss “reasonable and available means” and satisfy themselves the person has given those “serious consideration” before they qualify for MAiD. The less support available, the less consideration required. And because the new statute is an amendment to the Criminal Code, there is nothing here requiring governments to budget so as to ensure adequate support services are available to potential MAiD recipients.
This issue is felt deeply within the medical community. During an emotional Q&A following an educational session about Bill C-7 that was recently held by the Royal College of Physicians and Surgeons, it was pointedly pointed out that the wait time to access chronic pain clinics can be as long as two years, while the statute requires only a 90-day waiting period from the start of the first assessment until MAiD is carried out.
So what are we to do? Only offer MAiD to those who have timely access to a full range of support services, and deny it to those who meet the criteria set out in the statute, but can’t access those services? Deny it to them because they live in small, remote communities that don’t have physiotherapy, occupational therapy, social work, personal support workers, and psychological counselling services? Deny it to those whose only option is to travel away from home to seek those services, and when they can’t manage it, deny those who find the uneven availability of a changing roster of care workers doing locums insufficient to ease their suffering?
Do we deny it to people who live in large urban centres but who must wait in agony for months (or longer) to be seen, because local demand so far exceeds what’s available?
Such denial seems a cruelty, compounding the misfortune of circumstance. If it is accepted, as it has been by the federal government and the Quebec Superior Court, that MAiD ought to be available to someone grievously and irremediably suffering due to a physical condition, it would be perverse to deny MAiD to that person on the basis that they lack access to other means of alleviating their suffering.
And this is the crux of the problem. Within the MAiD framework, what may be the compassionate thing to do in individual cases becomes, at the societal level, a reprehensibly callous de facto policy of providing MAiD to people who need aid. People who, with support, might opt to live. This is not speculative: there are MAiD providers who will tell you they’ve had people come in in a pain crisis and request MAiD, but once their pain has been managed, they no longer pursue it.
Now, unequal access sadly occurs across all areas of health care. Hip replacements and even life-saving cancer treatment are not uniformly available throughout our country. So why should we be particularly concerned about the moral issues raised by a similar patchiness of support services in the context of MAiD?
For many the answer lies in the difference between death coming about passively and death being brought about actively. In the former, a government allows people to die in the course of pursuing its other priorities. Whereas in the latter, the government sanctions the active taking of lives by medical intervention where there is a shortage of support because it is pursuing its other priorities. There is a perceived moral difference between allowing people to die and taking action to end their lives.
However, there are those who will argue there is no moral difference between allowing MAiD for Canadians who can’t access other forms of support, and allowing Canadians to die because they can’t access cancer treatment. The answer to that moral equation is that it doesn’t render offering “MAiD instead of aid” morally benign. Rather, it makes stark that the uneven availability of cancer treatment in this country is also a moral wrong. There is no justice in it. What it reflects is our willingness to neglect the lives and well-being of those in our more remote, isolated, and impoverished communities.
The equivalency is false on its face, though. There is a difference. Generally speaking, both in our everyday judgements and in our legal system, we attach greater responsibility to actions that are the result of deliberate choice. And we concomitantly attach less responsibility to those that are unintended, that come about as a consequence of our other purposes, oversight, accident, or circumstance. Thus the difference between inadequate cancer treatment and MAiD is this: Even the most egregious of neglectful government policies don’t have as their stated purpose death by cancer. Governments can and do have a multiplicity of priorities, and the unequal availability of cancer treatment across the country is an unfortunate result.
With MAiD, though, the government put itself in the business of alleviating suffering; that is the express purpose of the legislation; that was the intent. It therefore cannot duck responsibility for its choice of means: ending lives, rather than ensuring that services which alleviate suffering are widely available.
But, comes the objection, it was the courts that forced the government’s hand in amending the Criminal Code.
As the old saying goes, hard cases make bad law. The Quebec Superior Court could only address the issues before it in the cases of Mr. Truchon and Ms. Gladu. While testimony was heard from doctors in Canada as well as from doctors working in jurisdictions without the foreseeable death requirement, by refusing to appeal the decision the federal and other provincial governments closed the door on the opportunity for appellate courts to weigh broader societal issues, including the impact of availability of support services on MAiD use.
It is not enough that in two years’ time the government will conduct a parliamentary review of the legislation, using data gathered in the interim. (It has been acknowledged that the current database on MAiD is woefully inadequate, which does not inspire confidence. It could make meaningful before-and-after comparisons with the new provisions difficult, assuming anyone wants to make such comparisons). The language of the review provisions broadly promises “A comprehensive review of the provisions of the Criminal Code and their application, including but not limited to… issues relating to the state of palliative care in Canada and the protection of Canadians with disabilities.” One hopes that somewhere in all that non-specific language someone will take the issue by the horns, but it is notable that the impact of support scarcity is not here expressly stated.
And there’s no need to wait two years until the review to address the issue to determine if it’s a pressing one. We already know who the potential, non-terminally ill MAiD recipients are. They are the reason these legislative changes were made. We already know what the scarcities in the health care system are. We already know the wait times, such as two years to access a chronic pain clinic, for the kind of care that could impact a person’s decision whether or not to use MAiD. We already know that many people living with grievous, irremediable conditions simply cannot access the help they need within that ninety days.
The moral foundation of MAiD is two-fold: it consists of compassion, and respect for autonomy. The moral legitimacy of MAiD hinges on keeping the practice to the right side of the line between respect for autonomy and the abandonment of a vulnerable person, someone who is in need of protection and help, not death. The core purpose of MAiD assessment is to ensure respect for that line happens in each case – that we are indeed respecting autonomy, and not abandoning the vulnerable. In order to be autonomous, the person making the decision must have, within themselves, the requisite capacity to understand the decision and comprehend its consequences. Their circumstances must be such as to ensure the choice is being freely made.
Assessors must ensure the person is not subjected to undue influence, being manipulated, say, by a caregiver or loved one who’s after an inheritance or relief from the burden of care. Similarly, their decision must be free from duress. If someone’s decision is being pressured because someone is threatening them if they don’t go through with it, say, a violent domestic partner, or is trying to escape circumstances created by the sorts of caregivers who abused Joyce Echaquan, it may not be an autonomous decision. The person needs help to get away from the threat and abuse, not to have executed a choice to die that isn’t being freely made.
The situation created by inconsistent availability of support raises the question whether that lack of access to services constitutes duress. Are the people who lack supports to which others have access rendered more vulnerable than their suffering peers by that privation? Does the absence of support constrain their choices in ways that the choice of someone who does have access isn’t constrained?
The fact accessing proper pain management can change some people’s minds about pursuing MAiD does seem to indicate that a lack of support can constrain choice. Their suffering is no longer caused solely by their medical condition, grievous and irremediable though it may be. In some cases, such as those described by MAiD providers, it is access, or lack thereof, to pain management that makes the difference between pursuing MAiD or not.
Even if it does not rise to the level where we can say a lack of support makes someone so vulnerable they are unable to make autonomous decisions, I think it is fair to say it creates a moral tension in regard to the autonomy requirement. They are more vulnerable, and less autonomous – not in terms of internal capacity factors such as understanding, but in terms of tolerability of their circumstance – than those of their more fortunate peers.
The impact of circumstance on decisions was born out by a Dutch study published in the Journal of the American Medical Association in December 2020, looked at the factors leading geriatric patients whose conditions were not terminal to request assisted dying. It found that “suffering occurred on multiple dimensions,” including pain, and that an accumulation of geriatric syndromes leading to a request were “often intertwined with the social and existential dimension of suffering…a complex interplay of physical, psychological and existential suffering that changes over time.”
Again, the moral impact of these facts depends on the vantage point from which we assess them, individual or societal. Resistance to the idea that lack of access to support constitutes duress makes sense from the perspective of individuals because no individual, or individual’s care givers, are in much of a position to do anything about it. We can separate someone from a violent domestic partner. We cannot suddenly transport the full range of services and a pain clinic to a remote community. Viewed from the vantage point of the MAiD providers on the ground, lack of support isn’t duress, it’s bad luck.
But that is not the only vantage point from which to view it; we need to keep in mind the moral split screen, and not stop with the individual perspective. The availability of such support is a question of government allocation. Our democratic government controls the availability of support. And what we control can no longer be said to be a matter of luck.
Seen from the vantage point of society, a lack of available support over which we have control looks more like a situation of duress, not bad luck. For Canada to offer MAiD to people experiencing a privation of support that we have inflicted on them by our societal priorities, and which could impact their decision about dying, looks more and more like abandonment of the vulnerable, and not the respect for autonomy on which MAiD is purportedly founded.
We have to be extremely honest with ourselves as a society about whether the medical condition on which MAiD is based is truly the cause of the suffering, or is providing medical cover for solving broader societal ills, including access to medical services, as well as isolation, poverty, et cetera, by ending lives.
I referred to this immediate moral crisis the legislation has created for our country as moral phlogiston. My greater fear though is that there is no explosion, that the crisis will be quiet. I don’t know whether the political will exists to acknowledge and address the grim scarcities in our health care system, but I do know that allowing the voices of those who bear their brunt to be muted by the medical termination of their lives is a morally sickening way for the issue to slip beneath our awareness.
It is not enough for us as citizens, or our representatives, to do what the court was constrained to do in Truchon, and evaluate the issue by looking at in primarily in terms of individual circumstance. A democratic society has the power to alter that circumstance. Fixing our eyes only on the balance of suffering within individual cases blinkers us to the fact that we as a society are effectively willing to provide MAiD where we are unwilling to provide aid. Where care is needed, we offer death.
Some policies reveal our most fundamental values. The circumstances under which the state has chosen to sanction taking the lives of its citizens is unquestionably one of these.
The MAiD regime is founded on compassion, and its proponents hail its expansion as progress on that front. Ironically, with the enactment of the legislation, it is the extent to which we ensure suffering people have robust alternatives to using MAiD that will determine whether Canada is indeed a land of compassion, or one of self-deluded convenience.
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