Evidence of meeting #13 for Justice and Human Rights in the 42nd Parliament, 1st Session. (The original version is on Parliament’s site, as are the minutes.) The winning word was medical.
A video is available from Parliament.
6:50 p.m.
Liberal
The Chair Liberal Anthony Housefather
Thank you very much, Professor Pothier, much appreciated.
Professor Lemmens, over to you.
6:50 p.m.
Prof. Trudo Lemmens Professor, Scholl Chair, Health Law and Policy, Faculty of Law, University of Toronto, As an Individual
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.
7 p.m.
Liberal
The Chair Liberal Anthony Housefather
Thank you very much to all the members of the panel for your very interesting submissions.
We'll now move to questions.
We'll start with Mr. Cooper.
7 p.m.
Conservative
Michael Cooper Conservative St. Albert—Edmonton, AB
Thank you, Mr. Chair.
I'm going to ask my first question to Professor Pothier.
There are some in this debate who have come before the committee or who otherwise, when looking at the parameters set out by the Supreme Court in Carter, have said concerning the parameters of Carter that Carter is merely the floor, not the ceiling.
How would you react to that suggestion?
7 p.m.
Dianne Pothier
I don't think it's a very apt analogy. What I said was that the courts left out a large part of the analysis not because they're incompetent—obviously, they're not—but because they were not dealing with everything, on the theory that it was up to Parliament to deal with stuff. To talk about a floor, when you're saying there are things we've discussed and things we haven't discussed, doesn't make much sense to me.
7 p.m.
Conservative
Michael Cooper Conservative St. Albert—Edmonton, AB
Right. Really, what the court talked about was balancing on the one hand individual autonomy with the need to protect vulnerable persons.
You cited paragraph 95 of the Carter decision, but I would also note paragraph 105 of the Carter decision. The Supreme Court cited Madam Justice Smith in talking about the need for a properly designed and administered system of safeguards.
Then at paragraph 111 of the decision, the court goes on—and Professor Lemmens referred to it—to an affidavit that had been submitted by Professor Montero with respect to the Belgian experience, wherein the court in response said, we need not consider this affidavit for the purpose of admitting it as evidence before the court, because the parameters suggested in these reasons, such as euthanasia for minors or persons with psychiatric disorders or minor medical conditions, would not fall within the parameters of what we are contemplating.
Would you agree that those additional paragraphs also lend support to the idea that when we talk about rights, including those under section 7 of the charter, it's not a one-way street, but a balancing?
7 p.m.
Dianne Pothier
Yes. The whole point of the principles of fundamental justice, the overbreadth, is to say that an absolute ban was going too far. The question is then, what wouldn't be going too far? It is a balancing exercise. It's up to Parliament to try to figure out what the appropriate balance is.
My point is that if you don't have the limitations of proposed paragraphs 241.1(2)(b) and (d), then what you're saying that you need to weigh.... We've had testimony about what seemed to be compelling circumstances of people who fall outside of those two paragraphs, but you need to weigh that against, as Trudo was saying, the people who would just silently die because they're overwhelmed by feelings of hopelessness and helplessness, but who, if they had the opportunity to figure out a way to make life worth living, would have done so.
It's not just saying that this case has no effect on anything else. It's saying that if we make it too wide open, the balance is lost. Yes.
7:05 p.m.
Conservative
Michael Cooper Conservative St. Albert—Edmonton, AB
To finish off that thought, if, therefore, the balance is lost, then Parliament is opening itself up in the legislation to section 7 challenges from vulnerable persons who were saying that this legislation threatens or does not protect the life and security of vulnerable persons.
7:05 p.m.
Dianne Pothier
I would say it's both section 7 and section 15. The Carter claim itself was about section 15 and section 7, and Justice Smith started with section 15, and 7 was a bit of an afterthought. The Supreme Court of Canada said yes to section 7 therefore we don't need to deal with 15.
So the challenge on behalf of the vulnerable could be, again, both, but I think in that context the section 15 equality claims would be the more powerful ones.
7:05 p.m.
Conservative
7:05 p.m.
Conservative
Michael Cooper Conservative St. Albert—Edmonton, AB
Professor Lemmens, you talked about the experience in the Benelux countries, and in Professor Montero's affidavit that he had submitted before the Supreme Court he talked about many examples of abuses in the Benelux countries.
Can you maybe speak about those in the context of the need for, in your view, a prior review mechanism?
7:05 p.m.
Professor, Scholl Chair, Health Law and Policy, Faculty of Law, University of Toronto, As an Individual
Yes, the cases that were brought to the Supreme Court by Professor Montero were considered by the Supreme Court, but were put aside because the Supreme Court basically argued that they were not dealing in their decision with people suffering from psychiatric disorders. They basically sent the message that they were not dealing with that particular category of people who might ask for physician-assisted dying.
The cases have become much more important, of course, and they are important to discuss here, and by the legislator, if people are asking for an expansion of the criteria. The reason that the Supreme Court didn't consider them makes it important to discuss them here.
Are there abuses in the Belgian and the Dutch systems? I would say the cases highlight the importance of prior review.
We have seen circumstances most recently, for example, in Belgium involving a 37-year-old woman. She had suffered from a mental illness in her younger years, but had been out of treatment for 15 years. She encountered a physician who, in the Belgian context, is known to be very supportive of euthanasia for psychiatric patients. She asked four months after meeting her for access to physician- assisted dying, or euthanasia as it's called in Belgium. She was then diagnosed with autism. People who look at this from a professional perspective, from the outside, say this is a strange phenomenon, and wonder why she was diagnosed with autism at this particular stage. Family members had trouble obtaining information about what exactly happened, and why she was diagnosed in that way, and then two months later she was euthanized in the presence of her traumatized family. It then took the family three years to complain about it. Why? Because they went to the Belgium euthanasia commission, which said the legal criteria were fulfilled.
In an interesting way autism fulfills the criteria of the Belgian act. So when individual physicians decide, whether they're well intended or not—and I'm not even saying that this is not a well-intended physician—when they may be overly zealous in believing that their role is to provide access to physician-assisted dying in cases, many other psychiatrists would find it highly problematic because of the fact that these people are worthy of our care and of our attention, and they should not be submitted to euthanasia.
A prior review system would basically provide a safeguard in that it can lead these individual decision-makings. It could question the individual decision-making by physicians who may be overly zealous and sloppy and may act in an incompetent way in cases like that.
7:10 p.m.
Liberal
Colin Fraser Liberal West Nova, NS
Thank you, Mr. Chair.
I'd like to thank the witnesses for joining us today and for giving such informative presentations.
I'd like to in particular thank the three groups of nurses for presenting today
Thank you for the work that you and your members do every day to care for Canadians. It's really important work. I know that in this work you do, going forward, palliative care will be an important component of whatever the outcome is with this legislation. I know that our government is committed to making sure the resources are there for palliative care.
Ms. Klenk, I have a question for you with regard to nurse practitioners. The bill allows two physicians, or one physician and one nurse practitioner, or two nurse practitioners to help the patient with medical assistance in dying. I'm wondering about the provincial aspect. I believe you mentioned that the federal government and the provinces and territories will have to work together to come up with a framework, especially with nurse practitioners, and I know that's regulated by the provinces and territories.
Can you help us understand what kind of framework you might see? Would it be a concern that there would be differences between different jurisdictions in Canada in terms of what nurse practitioners could actually be able to do, despite what's stated in the bill?
7:10 p.m.
Past President, Canadian Association of Advanced Practice Nurses
The scope of practice of nurse practitioners across the country is very similar. We do have a strong education program that would certainly enable nurse practitioners across the country to be able to assist with medical assisted dying—to enact it, I guess, if that's the word.
There could be jurisdictional differences. I do believe, though, our nursing regulatory bodies in general work very hard to have similarities in our regulation processes across the country. There may be minor differences, but I think in general the processes will be the same across the country for nurse practitioners.
7:10 p.m.
Liberal
Colin Fraser Liberal West Nova, NS
Do you believe it's important, in order for Canadians across the country to have access to medical assistance in dying, to allow nurse practitioners this ability?
7:10 p.m.
Past President, Canadian Association of Advanced Practice Nurses
Yes. I believe it is important to have that same process across the country.
7:10 p.m.
Liberal
Colin Fraser Liberal West Nova, NS
Thank you.
Professor Pothier, I very much appreciated your presentation and the brief that you submitted. We talked about proposed paragraphs 241.2(2)(b) and (d). You mentioned that of course the court in Carter did not pronounce on those terms, it's therefore up to Parliament to make decisions on that, and there's nothing disallowing it in Carter.
I'm wondering about the 15-day waiting period. You'd agree with me that there was nothing in Carter talking about any waiting period, so this would be the sort of safeguard framework that would be up to Parliament to decide?
7:10 p.m.
Dianne Pothier
Yes.
7:10 p.m.
Liberal
Colin Fraser Liberal West Nova, NS
With regard to conscience rights, we've heard in some testimony that conscience rights should actually be explicitly stated in this law. Of course, this is an amendment to the Criminal Code, and I'd like your views on whether you feel that would be appropriate to insert in the Criminal Code itself. It's in the preamble now.
What are your thoughts on that?
7:10 p.m.
Dianne Pothier
I think suggestions have been made about saying, well, nobody shall be coerced to perform medically assisted dying or participate in it. I think you could put that in the criminal law, but my sense is that this is not the real concern. The real concern isn't coercion in the sense of a gun to your head. The real concern is professional repercussions if you don't participate.
If that's the real concern, I think there are limits as to how far the feds can go. It's not a Criminal Code provision, I don't think, but in federal jurisdiction you have military hospitals in terms of professional consequences. That's not a very big part of the picture. If you're talking about essentially discrimination against people for exercising their conscience rights, the Canadian Human Rights Act has a very limited application, generally and specifically, in a way that could implicate people conscientiously objecting to medical assistance in dying. I think there are some things that could be done. Mostly it would be difficult for the feds to go very far with this.
I mean, the ministers have been saying that nothing in this act requires anybody to do anything. That's true. The question is whether you have more robust statements of that. I think you may be able to go some distance, but if you're looking for the strongest protections, it's provincial jurisdiction.
7:15 p.m.
Liberal
Colin Fraser Liberal West Nova, NS
Thank you.
With regard prior judicial review, this has come up from some witnesses and has been mentioned in the context of Carter. It was stated that in the interim there should be judicial oversight. Would you agree that this was in the context of the court's expecting it to come before Parliament, to put in place a regulatory framework that would put safeguards in place?
7:15 p.m.
Dianne Pothier
The judicial role at the moment is an interim solution from the court. They are expecting Parliament to come up with a system of safeguards. They said that they thought the judges were part of the rule of law, part of the safeguard system. I think they're leaving it open to Parliament to include judicial authorization as a continued one, but they're also leaving it open to Parliament to find other means of creating a system of safeguards.