Kieran Quinn’s recent thought-provoking article informs the ongoing discussion about Medical Assistance in Dying (MAiD) in Canada and acts as a call to action for us all to be involved in this important debate.
Last week, the federal government did just that. They formally asked all Canadians to weigh in on who should be eligible for MAiD and other aspects of the law in the public consultations section of its website.
The recent Truchon decision resulted in the approval of MAiD for two patients who were not terminally ill. This has opened the door to an expanded availability criterion for MAiD in Canada, specifically to include patients who are suffering intolerably, even when their death is not imminent.
Quinn, while reflecting on his own experiences caring for patients with intractable suffering, correctly calls upon all sectors of society to be more broadly and transparently involved in setting policy around MAiD, rather than allowing decisions to be made primarily through the courts.
Many of us who work in health care have also witnessed intractable suffering. In our resource-scarce healthcare system, we have seen patients request MAiD as they perceive it to be the only realistic solution to their suffering.
But these anecdotes, while very important, cannot substitute for evidence. Studies have consistently shown that MAiD requests are more likely to reflect concerns about autonomy and control than medically-intractable suffering. Fear of the future and of losing control are real problems patients struggle with, but they are not the problems that MAiD is fundamentally meant to address.
Although the discourse around MAiD access focuses on physical or psychological suffering, honest debate demands that we refocus on the real drivers of potential ever-expanding MAiD indications.
Since fear, uncertainty and isolation are a common (and arguably increasingly prevalent) part of the human experience, the drive to offer MAiD to patients with these indications – including those who are not foreseeably near death – is increasing. Before concluding this is the right thing to do, we must consider MAiD’s potential harms.
The original prohibition on assisting in suicide was meant to protect those who, in a moment of weakness, brokenness or despair, would be unduly encouraged to end their lives rather than to seek healing, meaning and repair. When the Supreme Court allowed a limited legalization of MAiD in the Carter case, it also recognized the risks of allowing assisted death. Those most vulnerable to these risks – those for whom personal and social supports are the weakest – should be foremost in our minds when considering the expansion of MAiD criteria.
Consider the many individuals living with chronic disease – with heart failure, kidney disease, dementia, etc. The ones who “do poorly” are invariably those who can’t afford extra care, who are less educated, who lack social supports – families or friends who can visit and help. They are the ones most likely to feel “out of control” because so many of these problems are out of their control. They are the ones most likely to be affected by loneliness, by a loss of agency and the feeling of lost autonomy – the kind of intolerable suffering that might lead to MAiD under expanded criteria.
Accepting MAiD as a solution to these problems reflects a real despair about our ability as a society to respond to these existential problems. It reflects an inappropriate medicalization of what are really problems of the human condition. And it reflects an unspoken medical paternalism: in the final analysis, the community of one’s family, friends and neighbours cannot help – only the doctors and the healthcare system.
Those of us who oppose the normalization of medically-induced death see this as a two-way street: using MAiD to treat existential harms undermines the societal support structures and protections for those whose suffering is chiefly existential. Crudely put, it is easier to care for a dead patient than for a lonely or fearful one. In a medical system ever beset by resource constraints and burnout, the temptation to give in to an early request for death looms large over efforts to expand the indications for MAiD.
Again, this risk is especially true for those on the margins – the poor, the underhoused, those with language or cultural barriers to care, and those in rural or remote communities – for whom the provision of high-quality care, and in particular palliative care, remains elusive. Evidence-based efforts to ensure that the vulnerable are protected in Canada’s MAiD regime continue to show that even the current law does not provide complete protection – which ought to give us pause when considering an expansion of criteria.
We understand that for some of our colleagues, MAiD is simply an extension of good palliative care, another medical procedure to be offered judiciously in a patient-centred way. As clinicians, however, we cannot but disagree. MAiD engages a much deeper question about the meaning of life, which is why it is subject to judicial and societal review, unlike other medical advances, and why large parts of the world consider it unethical. It is instructive to consider that within the palliative care community, MAiD is widely considered to be outside the scope of palliative medicine – explicity not another palliative tool among many.
Wherever we stand on this issue, professionalism demands that we honestly appraise the causes and justifications for MAiD. Cognizant that MAiD requests most often stem from concerns of autonomy and control, we ought to seriously ask ourselves if supporting the expansion of MAiD for a few justifies exposing an ever-increasing number of marginalized, vulnerable patients to its irreversible harms.
The comments section is closed.
Drs. Vivas and Bastien are to be commended for this thoughtful commentary. It has been largely overlooked in Canada that MAID is indeed a medicalization of suffering and dying, particularly if it no longer serves to ease the transition at the end of life between life and death, but becomes a medical solution to a difficult life. Note, in response to some comments here, that they explicitly mention an increased concern about expansion outside the end-of-life context, while many people commenting here trivialize their concerns by focusing on MAID used in situations of terminal illness or close to the end-of-life, which arguably is a different practice.
Oregon’s practice, which Maureen Taylor mentions to claim that the practice does not create a risk for people who are otherwise already disadvantaged, is in comparison to Belgium and the Netherlands a marginal practice focusing on self-administration at the end of life. Belgium and the Netherlands are the systems that appear relevant for what they discuss. We see there a clear development of the practice in the last decade. It is hard to deny, for example, that when it comes to MAID for mental illness in those countries, we have many marginalized, vulnerable people; people who are lonely, whose suffering is often associated with or exacerbated by social determinants of mental health. True, the practice of MAID for MH remains limited, but it is increasing.
We also need to look more closely at the increasing numbers of other people not close to the end of life whose lives are terminated by MAID in Belgium & the Netherlands. For example: the growing group of people who receive MAID in Belgium for ‘polypathology’ (defined as a combination of ailments associated with old age), which several experts in Belgium have criticized as being an explicit medicalization of old age.
A report just submitted to the Dutch Ministry of Health, commissioned to study whether a ‘completed life’ life-ending procedure should be introduced in the country revealed that there are 10,000 people above 55 years of age who express a desire to have their lives ended in the Netherlands. About 50% are of lower economic status; many are uneducated; have financial issues; many worry excessively, are lonely; of many, their ambiguous desire to die could be addressed by social support measures… If the discussion is whether we should expand MAID outside end-of-life let’s take the time to look at these studies and data, and the developments there.
Finally: studies from Belgium and the Netherlands confirm that, indeed, control over the manner and timing of death is the primary reason for asking MAID/euthanasia, not pain. Yet there has been a push in Canada for expansion of MAID based on arguments about intolerable physical suffering that cannot be addressed. We should indeed be clear what the rationale for access is, and the rationale for expanded access, and then weigh that against its potential impact, both immediately on those who may die prematurely, as well as in the long run, on the social fabric of our society and our attitude towards those who are ill, elderly, and disabled.
The proper question is the following: how do we balance the desire for some to control the manner (in Canada: largely physician-provided) and timing of their death with the interests of others not to have their lives ended prematurely, and with our societal interest in protection the social fabric of our society and avoiding negative perceptions of the lives of those who are elderly, ill and disabled? The latter also includes avoiding the clearly stigmatizing and discriminatory practice of singling out disability and chronic illness as valid bases for preferential access to life-terminating practices. And ‘preferential access to life-terminating practices’ should also be correctly termed for what it really is: “reduced societal protection against premature death and prevention of suicide”. If we move beyond the end-of-life context, we explicitly state that we will not protect people with chronic illness and disability against self-harm in the same way that we protect others against it. If we want to be coherent, we should perhaps then just remove all limits of the practice, and recognize that it has very little to do with medical practice, but is becoming a state endorsed ending of life for those who no longer wish to continue living.
Thank you for this balanced, well-considered perspective. Your boldness to speak up with what seems like an unpopular opinion is refreshing.
NOT EVERYONE WHO WANTS TO DIE
HAS THE RIGHT-TO-DIE.
https://www.facebook.com/groups/1534291900145198/permalink/2328512907389756/
This is really about personal choice and doesn’t really concern anyone but me, my personal physician and family members and perhaps a few close friends. I personally choose to die with dignity and on my own terms. We actually treat our animal friends better than we do each other when it comes to suffering.
Thank you for contributing this thoughtful article. Disability rights advocacy groups such as the Council of Canadians with Disabilities have been sounding the alarm about this area of concern since well before Bill C-14 was signed into law.
You write, “Studies have consistently shown that MAiD requests are more likely to reflect concerns about autonomy and control than medically-intractable suffering.” Very true. When I attended a public consultation prior to the passing of Bill C-14 this was by far the area of concern most frequently cited by those in favour of MAiD. Even the representatives of Dying With Dignity focused primarily on this type of concern. Many participants either didn’t know what palliative care is, or didn’t know how to access it in their communities. And of course palliative care is still, incredibly, unavailable in some communities.
Only when truly sufficient community support for elderly, disabled and chronically ill persons has been achieved everywhere in Canada would it even be possible to think of requests by members of these groups for Medical Assistance in Dying as being made free of duress.
It is easy to detect the ableism implicit in the proposed expansion of MAiD. There is also, I would argue, an implicit racism embedded in the proposed expansion. You write, “this risk is especially true for those on the margins – the poor, the underhoused, those with language or cultural barriers to care, and those in rural or remote communities – for whom the provision of high-quality care, and in particular palliative care, remains elusive.” The Assembly of First Nations, for example, is very aware of this aspect of the introduction and proposed expansion of MAiD.
Only when Canada has repaired the damage it has done to First Nations people would the expansion of access to MAiD not amount to a stealth attack on them.
Also troubling are the perhaps less obvious legal and political effects of the introduction and expansion of MAiD.
With the signing into law of Bill C-14, Canada became a nation in which the state may authorize the active termination of a citizen’s life. This represents a fundamental change in the relationship between the individual and the state in Canada, setting a legal precedent that could well be applied elsewhere.
In Ontario, the “effective referral” requirement now forces conscientiously objecting health care professionals to participate in MAiD in an accessory capacity, in acknowledged violation of the Charter right to freedom of conscience. Public access to MAiD cannot be shown to be significantly impeded by non-participation on the part of conscientiously objecting members of the CPSO, yet the Superior Court of Ontario ruled that the CPSO can penalize members who refuse to be accessories to MAiD. The legal precedent thus established is that a Charter right may be set aside even if doing so can be shown to be unnecessary.
The concept of “presumptive consent” has lately been discussed in connection with the topic of shortages in organ donation. It is a concept that may reasonably be expected to be introduced also into discussions about MAiD. Assumptions about “quality of life” and the perceived need to expand MAiD access to those who cannot request it for themselves, but who would presumably do so in view of their poor quality of life, set the stage for unrequested euthanasia of those who are deemed to have very poor quality of life.
I am a volunteer witness in the MAiD program through Dying with Dignity. My experience in this capacity, has been that most of the people were in the upper socio-economic bracket. With all of their advantages they chose to take control of their death.
I feel it is a very paternalistic attitude that the medical profession should be the final judge as to the validity of an individual’s life. What we are really asking for is for the medical profession to assist in providing a painless and dignified end to life. Let me make my own decision.
Agree completely.
While I appreciate expanding the criteria for medically assisted death in cases of extreme and intolerable suffering, I fear the slippery slope. Increasingly, an appeal is made to absolute self determination. No one should dictate what I can do with my life!
It is a wrong view of the human condition. It fails to recognize the essence of being human – our dependence on relationships and community. We depend on others and equally we are to help others. The suffering of one places an obligation on others and on society. If the individual has no obligation to society, does society have any obligation to the individual? Are we preparing a future where the sick and feeble will be expected to end their lives, or at least pay the cost of the choices they make? We are not there yet, but when the prime minister and minister of justice say that the autonomy of the individual is of supreme importance, are we not on the way?
I don’t understand your comment. A person making a decision based on his/her own values about self-determination (assuming the decision does not seek to harm others) is normally compatible with collective/societal values, including supporting relationships with others. This is not an either/or situation.
Expanding the criteria for MAiD services is not about creating expectations that people will choose MAiD. it is not about failing to provide funding for services to prevent MAID (e.g. better hospice/palliative care).
It is bizarre that people are so concerned about expanding MAID services, while very little is being done to provide other end-of life services. It is also bizarre that people are so concerned about vulnerable people who may choose MAID toward the end of their lives, while very little is done to help those people before they get to end of life (e.g. addressing life-long poverty, homelessness, hunger, etc.).
I am appalled by this article. Please await my more detailed reply to it.
First let me drop the terribly Canadian façade of politeness: I am appalled by this article. The authors cannot claim that they present their views as “clinicians” (i.e. as objective scientific actors) to bolster their credibility as having a better view on these matters than other people, while then also saying that MAiD engages issues about the meaning of life.
Let me deal with some (but not all) of the authors’ arguments and some issues that are ignored by the authors (while agreeing with some issues that are raised but dismissed by the authors in passing):
1. Floodgates/Open the Doors: It is a common approach to argue that something will result in fear factor catastrophizing/moral panic. The authors hope: (i) You will ignore their illogical leaps of logic ; (ii) You will assume that the burden of “proof” is on those who advocate for expanded MAiD.
2. Resource Scarcity as a Bogeyman: The authors state at several points that resource scarcity or constraints drive demand for MAiD services. What an incredibly negative opinion of people in our health care system. I cannot imagine any health care professional saying “oh well, I will try to convince you that you should be killed rather than help you with the options I have to me.”
3. Paternalism: The authors argue that MAiD is medical paternalism: dumping social problems on the medical system means physicians have to decide about death. But MAiD is a last-resort. No patient is realistically going to seek out MAiD services without looking at alternatives. Instead the authors propose a very philosophical “suffering is simply good for the human condition”. Suck it up buttercup. Ain’t that approach medical paternalism (i.e. imposing medical values on patients)?
4. The Emotive “Oh but the Vulnerable”: Many opponents of MAiD services are concerned that vulnerable people will be put to death because of MAiD. Such people are often indifferent to the suffering of poor people or homeless people when they are alive. After all, suffering is part of the human condition right? It reminds me of people who oppose abortion services, but don’t give a damn about children once they are born.
And the authors seem to think that poor people, marginalized people, and others will be subject to more MAiD services than others. Yet these vulnerable people already have inadequate access to health services such as primary care. Why would we expect that, toward the end of the lives of these vulnerable people, there will be this explosion of physicians who are wanting to give MAiD services to these under-serviced people?
A more traditional argument is that vulnerable wealthy people will be pressured into receiving MAiD because family members will want the money. But we already have family members taking power of attorney over property, making decisions about “do not resuscitate orders” … etc. The authors ignore this issue in order to create a MAiD bogeyman.
I agree whole-heartedly with you Adam … their arguments are quite “unscientifically biased”;
When it is my time of my choice and by my own criteria to choose to terminate my own life, I would appreciate having an unrestricted MAID option… but if that option is still restricted by unconscionable criminal (or other) legislation, I will resort to other effective options … some of which are much more traumatic and violent to “innocent/vulnerable” collateral bystanders or unsuspecting train/bus/etc. equipment operators… or which also may put first responders at risk as they might try to rescue me from freezing waters or extinguish my self-immolating flames, etc.
By not entirely de-criminalizing voluntary MAID, our governments are accepting these collateral risks — when the MAID alternative is both risk-free to everyone (myself included), and is considerably less expensive in all respects to taxpayers.
There is also the pro-environmental basis for accessing MAID at the time of one’s own choice: Canadians have among the highest average global “environmental footprint” — over-consuming resources and contributing disproportionately more to the coming environmental collapse — which will jeopardize our future generations to come. By removing my consumption from the national and global equations before another decade or more of my consuming and polluting while my quality of life simultaneously declines, I can contribute (albeit marginally) to slow the inevitable catastrophes to be suffered by so many others — with their lives having so much more to offer than mine in my declining decade(s).
Finally, there is the illogical legal requirement for each MAID patient to re-affirm their MAID request in the weeks prior and on the day of their procedure. This legal requirement is not replicated in respect of everyone’s final legal wills — which direct our executors to take necessary actions to liquidate and distribute all of our possessions and assets — without seeking our final hours’ consent or re-affirmation for anything we have previously signed while “being of sound mind” when our wills were written. If an “advance directive” in the form of a will is legally binding and accepted without any re-affirmation restrictions, then why would our parliaments not follow this very sensible and longstanding precedent? … instead of seeking to criminalize anyone (not just our medical providers) who may follow our advance directives to help us voluntarily euthanize ourselves?
IF they continue to restrict in any way access to voluntary suicide through MAID, then for those who choose to find alternative (probably more violent and collaterally more traumatic) means, OUR BLOOD (and the extra collateral public costs and social effects) WILL BE ON THEIR PARLIAMENTARY HANDS!!
Thanks for your comments.
What I want to avoid is this argument that expanding MAID is essentially an invitation to move to a “Logan’s Run” scenario where state-supported death is normalized as a an alternative to other social solutions.
While I support the expansion of criteria for MAID, that does not mean that other end of live services should not be funded. I do not see MAID as an alternative to other services.
I do not support government-funded MAID for the purposes of a person choosing to commit suicide in the absence of any health issues. State sponsored suicide or euthanasia for non-health purposes is an anathema to me and will be used to hurt the vulnerable. Let’s not go there.
Thanks Adam;
I’m somewhat concerned that your response to my reasoned arguments for decriminalizing assisted suicide seems to parallel/echo some of the same unscientific moral ‘judgements’ for which your initial detailed note articulately criticized the two authors of this article.
I am particularly concerned that you use your personal (?moral?) judgement (“an anathema to me”) to attack an individual’s choice of the means of their own death and when you raise their same “hurt the vulnerable” bogeyman.
And I believe you have mis-construed/mis-interpreted my 3 reasoned rationales as somehow rejecting any other (than MAID) end-of-life alternatives (such as palliative care)… when I made no such reference.
Indeed, as there is legal endorsement for no longer criminalizing abortion services, when a woman makes that choice, My argument would be that no one is required to use that service… but anyone can choose to use it – without any interference by the criminal justice system. It is currently in Canada each woman’s legal right to choose to use that service… or to choose to not use it.
I would argue the same non-criminalization should apply to choices for each of a person’s different end-stages-of-life options – palliative care, intensive long-term care, mechanical life-supports, or MAID. I certainly would never judge nor want to criminally charge someone for personally choosing one of those options vs. another one… nor would I support charging anyone for aiding a person to access any of these equally valid and effective end-stages-of-life options.
Finally, you have assumed (but not based upon anything I originally wrote) that I am only advocating for publicly-funded MAID.
I recognize this issue (like the abortion debate, and the same-sex marriage debate, and other broad social issues) can engage many correspondents’ emotions beyond their logic and science-based reasoning. I will suggest that we all need to recognize when we are starting to ‘speak’ from an emotional/judgemental/faith/etc.-filtered bias… and then to control our words so as to “not go there”… or to make “full disclosure” of one’s biases/beliefs/etc. filters.
I feel that we come from the same perspective on expanding MAID criteria Adam, but as you can read above, I am opposed to criminally restricting MAID (and any other forms of assisted suicide – sometimes politely referenced as “assisted euthanasia”)… for the three dispassionate reasons I first articulated in my initial reply to your articulate comment.
Excellently put Adam.
Margaret
I signed up to be a volunteer witness to the paperwork required to initiate a MAID request. I wanted to learn more about the kinds of people, and the kinds of suffering. For those who fret that slippery slope and the vulnerable being killed off I recommend you, too, sign up and meet those who don’t necessarily want to die, but who can’t bear to ‘live with suffering’ anymore – even while under excellent palliative care. Then, when they don’t meet the ‘criteria’ see how you feel in face of their despair, their frustration, their suffering. You’ll see a different aspect of ‘vulnerable’: when they are condemned to live.
Agree. I am appalled by this article. Please see my comment.
Kathy Well said.
My choice had always been MAID. Knowing this is available soothes the anguish of fearing years of immobility, dependence and loss of dignity as my mother suffered and never wished for. Let this be a choice!!
The one fact that those opposing MAID’s availability seem to forget is that we all die. If I determine that my ‘ suffering ‘ warrants an end to my life, so be it. Let’s move on from the endless debate and accept that we are mortal.
As a “Boomer” who has long supported one’s right to end one’s own life I hope that our responses to the government survey will lead to a loosening of many of the rules surrounding MAiD. I firmly support palliative care if that is what a patient wants.
I think the argument that this will lead to poorer and less educated people using this is a bit of a red herring and not one that I have read about in my years of reading widely in the field. Changes in law often take a while to filter down to all levels. It should be the government’s responsibility to make sure that the information be widely distributed in pamphlets and information on the web. We should all be able to ask for and receive MAiD when our suffering of pain whether physical or psychological becomes unbearable. The nearness of death should no longer be a consideration.
Thank you for the interesting articles on this topic.
My heart aches for those suffering. I wonder, why now in the West we search for control and autonomy as the greatest priority? Prior to the invention of chloroform, persons would search for meaning. The search for meaning led to personal spiritual growth, understanding and comfort. Does this have any role in world today? Are we missing an important part of life? I do not mean in any way to diminish the concern for the suffering.
I do believe that those who wish to use their suffering and pain as part of their spiritual growth will surely be allowed to do so.
My experience is that most pain and suffering interferes with spiritual growth and insight rather than encourages it.
Admittedly tongue in cheek, but the closest I know of spiritual insight while in severe pain was that we live in a world where the Opium poppy grows.
What? Suffering leads to personal growth? What clap-trap.
Right on! Suffering can destroy the soul and hope.
Thank you both for this thoughtful overview. My own belief is that we are confounding issues around the definition of “suffering”, which to me includes but is NOT limited to “medically-intractable suffering” that happens at the end of a predictable terminal diagnosis.
I do live with a chronic and progressive illness, and I also live on a retirement pension, but unlike your definition of those who are most “vulnerable” to expanded MAID availability, I am not less educated, nor do I lack social supports, nor is “extra care” unaffordable, and I do have many friends and family living close by for social support.
Despite all those advantages, the loss of my “autonomy and control” would certainly represent intractable and unbearable suffering to me.
Long before my own diagnosis, I learned how catastrophic this loss of “autonomy and control” could actually be in real life. I spent 10 years as a regular visitor to a dear friend whose final decade after a devastating stroke was spent in a 4-bed shared room in a government-run longterm care facility. Watching her slow deterioration was pure torture. When she finally died (another stroke), her friends were relieved for her. And there was not a single thing that the “doctors and the healthcare system” could do or did do to address her decade of heartbreaking suffering, and her profoud despair which persisted and worsened over time. After each visit over those 10 years, I would sit on a bench outside the facility and weep for what she was going through.
When I met her, she was a lively, brilliant woman who had lived a long and active life, was educated at the Sorbonne in Paris during WW2, spoke many languages, enjoyed Tai Chi and ballroom dancing and delivering speeches about Canadian history (her first love!) at her weekly Toastmasters club meetings. After her stroke, she couldn’t walk, use the toilet, or see. It was actually a blessing when her hearing started to fail, because at last she no longer had to listen to her demented roommate in the next bed calling out, “Help me…. Help me…” for hours on end.
Is this kind of life what any of you would call living?
I now see the expansion of MAID as a signal of a profound societal shift. In the same way that we Baby Boomers changed birth, we will change the way we die, too. At one time, for example, doctors delivered babies for women who had to lie immobile, flat on their backs, no birthing training, either knocked out or screaming in pain, their feet up in stirrups – a position that’s been called the second worst possible position in which to deliver a baby (the first would be standing on your head) – and certainly no Dads ever allowed in the delivery room.
It was NOT hospitals or physicians who decided that everything about such scenarios must change. It was us Boomer mums.
Personally, I have already submitted my survey opinions to the government, urging this expansion of MAID for beyond terminal illness scenarios. My family and I have had many discussions about my own needs and preferences, and I hope that the law will ultimately help me to avoid my friend’s dreadful fate.
For some of us, living a life without autonomy and control would indeed be unacceptable.
My husband, diagnosed at age 55 with early onset Alzheimer’s has reached this point in his life. There is no cure and no treatment. The disease will progress, robbing him of everything that makes life worth living.
He can no longer even get himself a drink of water, the most basic human need.
He lives in a state of fear, confusion and anxiety, as he no longer comprehends the world he lives in. He cannot see well, as his diseased brain can no longer support an entire field of vision and he has lost the ability to understand language.
I have cared for him for 9 years and have watched him decline from an intelligent, witty, kind man into an empty shell of his former self. His body lives on.
We are not poor, uneducated and have been well supported by the Alzheimer Society, our neurologist, geriatrician, family and friends. The services we have needed have been readily available, but this does not negate the suffering my husband endures.
He is presently waiting for a bed in LTC and as he is in otherwise excellent health, he could potentially live for another 10 years.
I know he does not want to live like this and would wish to die.
It is heart breaking to accompany him on this devastating, cruel journey into oblivion.
I know this is just another anecdote in this debate, but I believe that the decision to end one’s life, when all checks and balances are in place, should be honoured, including advanced consent. Such a decision will never be taken lightly and does not affect anyone other than the person and their loved ones. It’s too late for my husband, but hopefully not for others who wish to do so. Having witnessed this disease so intimately, I sincerely hope that future legislation will acknowledge and validate the suffering of people with dementia.
Ms. Harrison,
My husband shares a situation similar to yours. He was diagnosed with the behavioral variant of frontotemporal degeneration, a form of dementia, at age 56, although he began to show symptoms at age 54. He entered long-term care at age 59 as a private-pay resident (we live in the US) in fall 2015. I choose to be grateful for what he can still *can* do, not what he can no longer do. He can still walk and feed himself with assistance. He responds to his favorite music and foods and still recognizes me, though he no longer knows my name and probably does not understand the concepts of husband of wife any longer. It is heartbreaking to witness his decline, of course, and we will run out of $$$ to cover 100% of the costs of his care in the next 18-24 months. But it will all be OK in the end. I am already adjusting to life as a widow in all but name. He will likely be there to greet me in Heaven and tell me what I have been missing.
God bless you.
Your last two lanes describe your feelings pretty well.” But it will all be okay in the end. He will meet me in heaven”. I am an atheist and I do not believe in the afterlife. But I am a humanist and I care about THIS LIFE. Afterlife believers think that it is okay to suffer in this life because the great Creator allows them to suffer and they will get their just reward in the afterlife. I do not see any inherent virtue in suffering needlessly in this world. I have done one MAID provision in a certain individual with end-stage COPD who told me : “I near die many times a night BUT I don’t get the relief of dying.” Physically, she had pressure sores on her heels her sacrum and even over 2 ears where a continuous oxygen tube laid. If you or your fellow believers would’ve been there, I would have liked to ask you a question : “Please explain me what type of compassionate God would allow this Intolerable sufferance to happen to his creatures.”. The only plausible answer would be faith, but I don’t have it. So I grant them their wishes and relieve them from their agony in this world. I leave the imaginary world to people like you.
Agree. I am appalled by this article. Please see my comment.
Carolyn I witnessed my mothers decline over years that I have buried in my memory. To this day I feel I suffered along side of her. Her death was a relief. I have always believed we should have choice and I applaud the progress being made by MAID.
I would be pleased if you could cite any data that MAiD is being “disproportionately “ applied to societies most vulnerable? My own experience is that MAiD is accessed by those with great access to care, have often decided to discontinue high quality palliative care, are well supported by relatives, friends, and private and governmental services. If what you say were true, use of MAiD in well serviced, and relatively wealthy areas would be minimal, yet that is not the case. MAiD requests exist in areas with palliative services,and often enough from patients who have availed themselves of those services or have declined them after being offered access.
I endorse Maureen Taylor and Marc Gabels comments. As a MAID assessor i find it interesting that physicians and others opposed to MAID repeatedly say applicants for MAID are only suffering existentially and not physically. However in my experience of assessing approximately 150 MAID applicants, the vast majority are suffering both physically and existentially, despite having in most cases good palliative care. I agree that one would be hard-pressed to see them as vulnerable in the usual sense of that word as most are educated, well informed, thoughtful, previously successful , and getting good medical and palliative care. They clearly value their autonomy and quality of life and are used to taking control of their lives.
Now they want some control over how it ends.
Why are such people suffering existentially? Because they believe autonomy is the be-all and and end-all of a “good life”? None of us were 100% autonomous, nor we will ever be. Because they believe it is degrading to require assistance with activities of daily living? Because they can no longer engage in some activities they used to? People who lose their mobility, sight, and/or hearing adjust to these things every day and live fulfilling lives, often for decades. Are people offered MAiD required to have mental health assessments (which entail more than one cursory session) and treatment when indicated? Physical pain cannot be alleviated most if the time, but it can be alleviated much more often than not. Why give up on our precious sisters and brothers so easily like they are used Kleenex?
Agree. I am appalled by this article. Please see my comment.
Thank you, Lucas and Pascal for your insightful and important essay. This is exactly the type of discourse that must occur as we examine the potential to expand access to MAiD.
Is there evidence from Canada or other jurisdications to support the theoretical concern that societies’ most vulnerable patients will be disproportionately subject to MAiD if our criteria are expanded?
Federal and provincial expert panels looked to Oregon where assisted dying has been legal for more than 20 years. Wealthy, well-educated, white people make up the overwhelming majority of people who access MAID there and I expect it will be the same in Canada. I see many marginalized, non-English-speaking, lower socioeconomic patients who don’t know what MAID is nor that it’s legal in Canada. I would also argue that the further Canadians are from a large urban centre, the harder it is to find someone to provide MAID.
Agree. I am appalled by this article. Please see my comment.
Thank you for your kind words, Kieran. I hope we can contribute to this discussion from all sides of the debate on MAiD.
Identifying the impact of vulnerability on MAiD in Canada is difficult at present since Canada is still early on the MAiD acceptance curve, and these data are necessarily discovered retrospectively. As mentioned by Maureen, it is true that in the beginning, MAiD is often accessed by educated, high-functioning individuals with lower obvious structural vulnerability.
There are troubling data from Belgium, where a study comparing assisted deaths at the 5-year and 11-year mark from legalization suggests increasing effects on those subject to vulnerability. Assisted death is still more likely to affect educated patients living at home. However, the greatest increases (by far) in rates of granted euthanasia requests occurred in the very elderly, those living in nursing homes, and those without higher education. This suggests that while MAiD is initially taken up mostly by those in a situation of reduced vulnerability, it is quickly normalized for much more vulnerable populations – PMID is 26259113 if you are interested.
Whatever ends up happening with MAiD criteria in Canada, I think it is essential that records be kept on the markers of vulnerability, particularly those psycho-social and existential markers which the qualitative data tell us are pervasive in MAiD requests both here and abroad. Currently the government only keeps data on a limited number of hard markers (age, sex, diagnosis). If we are going to keep the vulnerable foremost, we need to keep our eye on the markers that really matter.
I am not sure why you assume that increased uptake of these services is due to pressure on vulnerable people. Why isnt it due to increase information? And why do you assume that increased uptake is “troubling”? How terribly judgmental of you.
You argue for higher record keeping of MAiD services. OK, fair enough. But we all know that the existing system with do not resuscitate orders etc. is unregulated. Why complain about MAiD when the existing system is so undocumented?