I would like to thank the committee for inviting me to share a few thoughts on this important topic, one that affects each and every Canadian.
My submission is informed by research and teaching in health and bioethics, including end-of-life law, informed consent, and professional regulation in health-based discrimination law. I felt particularly compelled to participate actively in the discussion about the legislative changes because the lived experience of euthanasia practice in countries like Belgium, which is my country of birth, is too often ignored in this debate. I have conducted detailed research on euthanasia law and practice in Belgium and published on what this experience means for the debate in Canada.
I'll say something here about one, why I support the bill's definition of what constitutes grievous and irremediable; two, the limitations of the safeguards in the bill and the option to add prior review; and three, the exclusion of advance directives.
With respect to the narrow criteria, it can be very short around the argument about consensuality. I agree with Professor Pothier that the bill's criteria response to the applicants in the Carter case also provides some protection to many vulnerable people whose lives could otherwise be ended prematurely.
It's not just constitutionally required, I think it's also good social policy. This is where the evidence comes in from other countries. Evidence from euthanasia regimes that combine open-ended access criteria with reliance on competency and informed consent assessment by individual physicians and limited—and I would emphasize limited—after-the-fact reviews of self-reported cases shows these regimes lead to a significant expansion of the practice. In Belgium, we have expansion from 347 cases in 2004 to more than 2,000 in 2015. That becomes a significant proportion of the total deaths in the country, particularly in the Flemish region.
Problematically it has led in the last couple of years to an expansion in areas around people with disabilities and now includes couples who want to die together, people struggling with gender identity, and people who are tired of life. I would add to that the problematic expansion in the mental health area for people, not just those are chronically depressed and may be treatment resistant, which in and of itself is a contested concept. I developed that more in some publications and in submissions I gave to the joint parliamentary committee. It's not just people who are chronically depressed, but now in Belgium it also includes people with personality disorders, post-traumatic stress, anxiety, eating disorders, schizophrenia, addiction, autism, and even complicated grief. These cases do raise questions about competency assessment and about the appropriateness of including people, who had potentially many years to live, in euthanasia practices.
Members of the committee should be critical of the claim there are no problems with the Belgian death regimes because this has been carefully evaluated by the trial judge and by several Canadian committees, as has been said before. This is incorrect. The trial judge accepted there could be problems with the Belgian system, as did the Supreme Court, which ruled for the problems that were brought in front of it, they did not have to look at the fresh evidence presented by Belgian developments because these cases dealt with cases outside of the parameters of its reasons, and because Parliament could develop, the Supreme Court suggested, a more narrow regime with more stringent safeguards.
More importantly many problematic developments have become apparent in the last five years. I provide detailed evidence of these controversial aspects of the real-life practice of euthanasia in my written submissions and in other writings I can share with the committee.
Let me say something about competency and consent procedures. A lot of weight is put in the bill on existing competency and informed consent procedures by physicians. It's true they are already used in health care and in end-of-life situations. Competency and informed consent assessment are not fail-proof. They're ideals. They try to create an ideal of autonomy, but challenges are widely recognized. The science of competency assessment is in its infancy. Health care providers admit that, yet others seem to put so much faith in physicians' ability to do this properly and in a much more difficult context of end of life.
In this context, these procedures play a much more important role. They determine the difference between life and death, and in the future in many more cases than in the context of the existing end-of-life practices. The limitations of current competency assessment and current informed consent procedures become more important.
When we expand MAID to situations where people are not at the end of life, the possible consequences of errors become much more serious because of the many years of life that can be lost.
I therefore recommend—and I developed it in more detail but I won't expand on it here—that the competency in informed consent assessments should include a much more sophisticated evaluation of contextual and personal factors that may impact on the desire to die and on the voluntariness of the request. Pain, emotional distress, mental illness, financial or familial pressures, availability of palliative care, and so on are important to look at. In my submission, I propose some changes to that effect to the bill.
With respect to the standards of informed consent, I would say that more rigorous informed consent practices are common, also, in areas of health care where there are concerns about increased vulnerability and the need for caution. I can give you the example of medical research. This is clearly the case here that we're dealing with a context of increased vulnerability in situations where people are suffering and the precise reasons for the desire to die may be unclear. Informed consent is also here integrated in the criminal context as a basis for an exception on a criminal law transgression, so it should be stringent. For these reasons, because of the limitations of informed consent procedures and competency, I personally believe that prior review would offer additional protection.
Prior independent review would not be needed in a perfect world, in which all professionals always respect their professional ethics standards and act cautiously, without error, without excessive zeal, and without pressures of the health care system, but this is not the world we live in. Havoc can be created by a few negligent physicians in the context of other professional practices, so it's clear that it also can do the same in the context of end of life. Evidence from Belgium and the Netherlands shows how just a few doctors—you only need a few doctors—can create problems and lead to a high number of problematic expansions. The claim that the medical profession can adequately deal with it may be generally fine, but prior review would safeguard, actually, against those exceptional cases of physicians who become sloppy or are not acting appropriately.
I'll say something very briefly, in conclusion, about advance directives. I can't expand on it in more detail, but I would suggest you read the submission.
Advance directives are an exception to the rule that people have to provide informed consent for, in this case, a life-ending practice. Second, when people are asked to write an advance directive after the diagnosis of dementia, as has been recommended by the joint parliamentary committee, competency is often already affected, so there are concerns about competency assessment. Third, people have difficulty imagining that they may enjoy quality of life and may find new purpose and satisfaction in life once dementia develops, yet this is often the case. People become different, and there are even changes in the brain that are associated with that. Would we hold people to their previously expressed wish, even if they are now seemingly satisfied and enjoying a good quality of life? I would urge the committee to look at a recent documentary in the Netherlands that highlights, I would say, the horror of forcing someone into respecting an advance directive when she—in this case it's a woman in her sixties—is still functional and still enjoys many activities of life, simply because she had signed an advance directive five years earlier.
I would also mention that there are often family members who may have the most trouble dealing with dementia. It becomes problematic when they then become, with well-intentioned reasons, the ones who have to judge when the life of a family member is no longer worth living.
I would say, and I would suggest you look at the submission, that even in the most liberal systems of Belgium and the Netherlands, advance directives are only allowed under very strict conditions. In Belgium, for example, they are only allowed when there is irreversible unconsciousness of the person. In the Netherlands, they're not binding and are generally not applied because they are so problematic.
Let me close by simply saying that in the context of this debate, many powerful narratives of people who may not have immediate access to MAID under the bill or others who clearly do not qualify because they cannot give consent have been put forward. I urge the committee to look at other powerful narratives of people whose lives were prematurely ended in open-ended systems.
A few of these cases have recently created a heated debate in Belgium and the Netherlands. Many other cases remain hidden, because this involves vulnerable, marginalized people who are no longer there to complain after the indeed terminal relief of their suffering. Family members often remain silent because of the trauma they experienced.
We should learn from the experience of these other jurisdictions and introduce a cautious, prudent, regime that ensures the charter-based duty to protect the vulnerable. Opening up the bill's access criteria, in my view, would put the most vulnerable members of our society at risk.
Thank you.