THE STANDING SENATE COMMITTEE ON LEGAL AND CONSTITUTIONAL AFFAIRS
EVIDENCE
OTTAWA, Thursday, November 26, 2020
The Standing Senate Committee on Legal and Constitutional Affairs met with videoconference this day at 10 a.m. [ET] to examine the subject matter of Bill C-7, An Act to amend the Criminal Code (medical assistance in dying).
Senator Mobina S. B. Jaffer (Chair) in the chair.
[English]
The Chair: I am Mobina Jaffer, senator from British Columbia, and I have the pleasure of chairing this committee. Today we are conducting another hybrid meeting. Thank you again, senators, for your patience as we adapt to this new way of holding our meetings.
[Translation]
Before we get started, I’d like to make a few helpful suggestions. I would like to remind you that, when you speak, you must be on the same channel as the language in which you are speaking. Should any technical challenges arise in relation to interpretation or otherwise, please signal this to the chair or the clerk, and we will do our best to resolve the issue.
[English]
Please note that we do need to suspend during times when we need to ensure that all senators are able to hear.
Senators, I know that members will want to ask questions of the panellists. I ask that you only signal to the clerk if you do not have a question. I would like to repeat that, senators, because today is a long day. If you do not have a question, please let the clerk know. Otherwise, I will call all members for questions. If you are not —
Senator Plett: Is everybody having a problem hearing her, or is it just me?
The Chair: Can everyone hear me now? Okay, I’m going to try to talk really loud. If you can’t hear me, Senator Plett, put your hand up, please.
I’m not going to repeat what I’ve already said if everybody is okay with that.
Today we are beginning with the Minister of Employment, Workforce Development and Disability Inclusion. Senators, we will now suspend for a few moments to await the minister.
Mr. Palmer: The minister is here and ready.
The Chair: Senators, we are now ready to welcome the Honourable Carla Qualtrough, Minister of Employment, Workforce Development and Disability Inclusion. She is joined by one of the officials —
Mr. Palmer: Senator Jaffer, I’m getting a signal that we’re not hearing you. Why don’t we try to fix the sound?
The Chair: Okay.
Senator Larry W. Campbell (Deputy Chair) in the chair.
The Deputy Chair: We will now go to Minister Qualtrough. Welcome, minister, as a fellow B.C.-ite, I welcome you on behalf of the committee.
Hon. Carla Qualtrough, P.C., M.P., Minister of Employment, Workforce Development and Disability Inclusion: I’m here. Can you hear me now?
The Deputy Chair: Yes, very well.
Ms. Qualtrough: Thank you very much, senator, for the introduction, and thank you to Senator Petitclerc for sponsoring this bill in the Senate. I would like to introduce Krista Wilcox, Director General, Office for Disability Issues, Employment and Social Development Canada. She’s here with me today to answer your questions.
Senators, I’d like to begin by thanking the committee for granting my accommodation request to participate by telephone, but I’d also like to express for the record my concern over how difficult it was to make this happen. As a person with a disability and the minister responsible for disability inclusion, it concerns me greatly both that I was made to feel that my request was unreasonable and that significant effort seems to have been put, at least initially, into not making it happen.
I formally request that you look into your accommodation practises and foster a culture where witnesses are made to feel included and supported. Trust me, I was not seeking any unfair advantage. I wanted to put myself in the best position possible to participate meaningfully in these proceedings. Having testified before both the House of Commons and the Senate committees on multiple occasions in this manner, I was surprised by the pushback.
It’s not easy to ask for an accommodation. Sometimes it feels downright brave. If I am made to feel this way, a federal cabinet minister with my position and resources and the confidence to question the direction of a respected group of senators, what message are we sending to Canadians with disabilities around the country? Particularly as we discuss issues founded on equality rights, such as the ones we’re discussing today, it’s important that we welcome all voices to the table. I won’t belabour the point, but I encourage you to see accommodations requests as opportunities for everybody to meaningfully be included.
Now to the matter at hand, Bill C-7. From my perspective as the minister responsible for disability inclusion, I’m working to ensure that the voices of persons with disabilities are heard on this important issue.
Medical assistance in dying is a human rights issue. The proposed legislation recognizes the equality rights of personal autonomy as well as the inherent and equal value of every life.
Disability rights advocates have long fought for these rights. Being able to make decisions about one’s own life is fundamental. There are many examples in our history of where the personal autonomy and equality of our citizens with disabilities have been threatened, denied or even taken away. I can assure you that these concerns are top of mind as we undertake this important legislative work.
The proposed legislation explicitly recognizes equality rights. The preamble refers to the Charter of Rights and Freedoms, as well as Canada’s obligations as a signatory to the UN Convention on the Rights of Persons with Disabilities.
The preamble also expressly differentiates between these fundamental equality rights and various societal interests and values that we need to balance with this legislation, such as the important public health issue of suicide. Put another way, we wanted to be clear that ensuring equality rights underpins this legislation.
I’ll mention one more important aspect of the preamble that frames this proposed legislation, and that is the importance of taking a human rights-based approach to disability inclusion.
With these words, we are committing to using human rights principles to guide the development and implementation of our systems, programs and processes. This is important because the full realization of the rights we enshrine in law is predicated on having systems and structures in place that do not themselves create barriers, discriminate or infringe upon these rights.
I’ll digress here for a moment to speak about the Accessible Canada Act, which I believe to be the most significant advancement in disability rights since the Charter.
Section 6 of the Accessible Canada Act sets out guiding principles, which include that everyone must be treated with dignity; everyone must have meaningful options and be free to make their own choices; and everyone must have the same opportunity to make for themselves the lives that they are able and wish to have, regardless of their disabilities.
Another guiding principle of the act is that laws, policies, programs, services and structures must take into account the disabilities of persons, the different ways that persons interact with their environments, and the multiple and intersecting forms of marginalization and discrimination faced by persons.
These principles must also guide us as we tackle the important task of responding to the 2019 Quebec Superior Court decision.
As we know, Bill C-7 proposes a two-track approach to medical assistance in dying, with less or more stringent safeguards depending on whether a person’s death is reasonably foreseeable. You have heard about eased safeguards where death is reasonably foreseeable. It is our hope that this will allow for more dignified end-of-life decision-making.
In a situation where MAID is permitted even though the individual’s death is not reasonably foreseeable, there are heightened safeguards. These include the requirement that two independent doctors or nurse practitioners assess and confirm eligibility, with one of these having expertise in the individual’s medical condition. I’ll note that there has been an amendment on this particular aspect.
It is also required that the individual be informed of available and appropriate means to relieve their suffering, including counselling services, mental health and disability support services, community services and palliative care, and that the individual is offered consultations with professionals who provide these services. The individual and their medical practitioner must have discussed these measures and agree that the individual has seriously considered them.
Finally, the eligibility assessment must take a minimum of 90 days unless loss of capacity is imminent.
As we looked to broaden access to MAID as directed by the court, we were very aware of the need for Canadians to know their options, to ensure that their consent was informed, to have a real choice.
I spoke earlier about equality rights, about personal autonomy. I spoke about a human rights-based approach to disability inclusion. I spoke about meaningful options and about having the opportunity to make a good life for oneself. If our systems, processes, programs and services do not offer these options, and if our citizens don’t see that these options are available to them, then their equality rights are not being fully realized.
The proposed legislation recognizes the significant role that social, mental health, disability and community support services play in the full realization of equality rights.
Accessing MAID should not be easier than accessing disability supports. The new legislation makes it the responsibility of the medical practitioner to ensure that the individual is made aware of the supports that are available to them.
Senators, the harsh reality is that many Canadians with disabilities are not living with dignity, in the sense that they are not properly supported, face barriers to inclusion, and regularly experience discrimination.
I know that this committee has heard from disability rights groups and advocates about these realities, and about concerns that the proposed legislation does not afford the choice it purports to, absent underlying systems that truly support Canadians with disabilities to live with dignity. Several members of your committee have reached out to me on this issue.
I have heard these concerns as well and I share them. We have seen in these times of pandemic how many of our systems fall far short of truly supporting and including all Canadians. Canadians with disabilities are rightfully calling for governments to address these inequities, and we must.
In the recent Speech from the Throne, our government committed to a disability inclusion plan. This will include a Canada disability benefit modelled after the GIS, an employment strategy, and a modernized approach to eligibility for Government of Canada disability programs and services. The disability inclusion plan is an important next step in advancing the rights and inclusion of persons with disabilities. I look forward to sharing more on this plan with all Canadians in the coming months.
With these initiatives, I believe we are getting at some of the systemic challenges linked to this issue. With enhanced direct income support, we will be lifting many working-age Canadians with disabilities out of poverty. By removing barriers to employment, we are affording dignity, independence and self-sufficiency. And by modernizing our federal government’s approach to disability supports and programs, we are broadening and enhancing our ability to meaningfully deliver directly to our citizens with disabilities.
But so much more needs to be done. Many of the supports referred to in Bill C-7 are primarily within provincial jurisdiction, so I am working with my provincial and territorial colleagues. There is a long-overdue need for a national discussion on modernizing — I would say overhauling and reconceiving — disability supports and services.
Before concluding, I will mention the need for robust federal monitoring and data collection on MAID. We need a reliable national data set that promotes accountability and improves the transparency of implementation. Quite frankly, we also need to better understand who is accessing MAID and why. This is of the utmost importance to the disability community. It is incumbent upon all of us to ensure that the regulations that flow from this legislation allow for fulsome data analysis.
Honourable senators, we have before us legislation that seeks to balance making medical assistance in dying available, without undue obstacles, to those who choose it, with safeguards to ensure that this decision is truly informed and voluntary.
I imagine you can hear the weight of this in my voice and that you feel that weight as well. This is a deeply personal issue. For many of our citizens with disabilities, it is existential. Both for those who advocate for increased access to MAID and for those who advocate a return to an end-of-life regime, this is fundamentally about equality rights. This is about personal autonomy and about ensuring the inherent and equal value of every life.
I’ll end with a personal comment. As you know, I live with a disability, as do many of my friends, as do many of our parents and our children. Daily, we — Canadians with disabilities — hear comments like, “I could never live like that.” “If I had to live like that, I would rather be dead.” “How can you live like that?” We face stigma, stereotypes and ignorance. This is the backdrop for these conversations.
As we talk about MAID and court-imposed amendments to the Criminal Code — in a federal environment where jurisdiction makes it challenging, but not impossible, to improve our systems — the tools at our disposal sometimes seem blunt. But we do have ways to address the underlying systemic inequities. We are moving ahead to improve our systems so that our citizens have meaningful options and choices, and so that everyone can make the life for themselves that they choose.
I’m now happy to take your questions. Thank you.
The Deputy Chair: Thank you very much, minister. We will start with the bill’s sponsor, Senator Petitclerc. You have, I believe, five minutes. Please go ahead, senator.
Senator Petitclerc: Thank you so much, Minister Qualtrough, for being here with us today, for the time you’ve spent on this bill, but also being available to those who needed to connect with you, including myself.
Today, I would like for you — and you did mention it in your presentation, but I would like for you to go a little deeper and with more details in terms of that second track of safeguards that you mentioned, specifically the 90-day requirement and the requirement to be informed on different means and support services that exist.
What I would like for our colleagues to hear is really a bit of a run-through of the process that you went through to compete with those safeguards, so consultation, involvement of persons with disabilities, how the international experience was taken into consideration and if you feel that this bill achieves the rights when it comes to keeping in mind the rights to autonomy and the need for safeguards.
Ms. Qualtrough: Wow, okay. Thank you, senator, for all those questions.
Senator Petitclerc: And thank you.
Ms. Qualtrough: Let me hopefully provide a fulsome answer. I appreciate people will follow up if I’ve missed an aspect of your question.
Historically, as you all know, this law has been driven primarily by court decisions. It wasn’t a government that wanted or had committed in any platform to move forward with this conversation on medical assistance in dying. When we made the decision not to appeal Truchon — and I appreciate that you had conversations with the justice minister on that earlier this week — we undertook a very fulsome, I would say, although a short-timeline consultation with Canadians about what was next, how far we had come since 2016, what were people’s concerns, how were we going to modify this law in a way that would continue to address both the side of personal autonomy and having greater access and the very legitimate concerns about any possible negative perceptions there would be around the value of one life over another.
We consulted. We had a survey with 300,000 people. We did disability stakeholder-specific consultations. We did consultations with experts in — I can’t even remember the number of cities. I will say seven; it could have been nine. Trying to find a way to balance all the different interests that were at play here.
By making the reasonable foreseeability of natural death no longer a gatekeeping function to access MAID but, rather, serving the function of what track people would — what particular safeguards would be in place is probably a better way of saying it, we no longer have an end-of-life regime in this country. There are specific safeguards for if your death is reasonably foreseeable or if your death is not reasonably foreseeable.
We heard very clearly about the broader socio-economic circumstances that might lead to a person’s consideration for MAID, particularly a person who is suffering, and we wanted to dig in on that. So we talked to experts about the connection, as I said in my opening remarks, between services and supports and options and choices and the provision of MAID. What we have done in this law, I think, is to signal the very important connection between access — knowing these supports are out there and being able to access them — and the choice of medical assistance in dying.
I think the closer we get to a place where people see, not a choice between a life lived in poverty, in isolation and unhappiness in MAID but, rather, a choice of fulfilment and employment and happiness and support in MAID, the closer we’re going to get to the full realization of our equality rights as citizens with disabilities.
It’s complicated. It’s hard to get at — as I said, the Criminal Code is in some ways a very blunt tool. I think mentioning in the preamble the United Nations convention, mentioning the Charter, mentioning a human-rights-based approach to disability inclusion, we’re getting there. But in some ways we’re not there yet.
The Deputy Chair: Thank you, minister.
Ms. Qualtrough: Sorry, senator. I tend to babble on things that are important to me.
The Deputy Chair: No problem at all.
[Translation]
Senator Carignan: My question is about the exclusion of people with mental illnesses. I look at what the Government of Canada’s site currently says about medical assistance in dying in relation to mental illness and physical disabilities, and based on the current legislation, and I quote:
If you have a mental illness or a physical disability and wish to seek medical assistance in dying, you may be eligible. Eligibility is assessed on an individual basis, looking at all of the relevant circumstances.
That is the current situation. Bill C-7 proposes to exclude one category, the category of persons living with mental illness solely. Why take away the rights of people in this category without considering the possibility of assessing the situation on a case-by-case basis, as is currently done?
[English]
Ms. Qualtrough: Thank you, senator, for the question. This is a very important topic. Bill C-7 does specifically propose to make individuals, whose sole medical condition is a mental illness, ineligible for MAID, and that is a change. I can tell you I participated in so many of the consultations, and there was not a consensus on this issue, and we felt it more prudent, at this time, to wait for the broader parliamentary review to tackle this particular question.
There are significant complexities and risks around the provision of MAID to persons suffering from a mental illness only, which include the fact that the trajectory of mental illness is generally harder to predict than those with physical diseases, and we wanted to make sure we got it right.
Senator, I appreciate your perspective on this. We know that the Council of Canadian Academies also recognizes these challenges, and we are confident that the broader parliamentary review of Bill C-14 will address this issue once and for all.
[Translation]
Senator Carignan: Do you not think it’s a little unusual or dangerous to discriminate based on consultations, because consultations are not clear? What I’m hearing from the government is, “we have no consensus,” “it’s a bit complicated” and “we’re not sure.” What I mean is that you can’t discriminate against people on that basis.
Ms. Qualtrough: I absolutely understand, senator —
Senator Carignan: We do not govern by survey, and you can’t discriminate by survey either.
[English]
Ms. Qualtrough: I know this issue was addressed with the Minister of Justice, and I will defer to his legal analysis on the constitutionality of this particular provision. I will offer more public policy considerations of the complexity and the lack of consensus, understanding that we’re on a journey here with this law and that there will be a more fulsome discussion of this issue that we didn’t think we had had sufficiently during the parliamentary review.
Senator Carignan: Thank you.
Senator Dalphond: Thank you, minister, for your very interesting presentation. My apologies on my behalf and on behalf of the group about the difficulties you raised about your appearance before the committee today.
In your presentation, you referred to three facts that have been raised by many witnesses before the committee so far. First, the persistent lack of equal access to support and health care for disabled people across Canada; second, the fact that disabled persons still, unfortunately, face systemic bias and stereotypes; and third, the lack of complete data on the people who have used MAID and why they have done so. In these circumstances, minister, what do you say to those who say it is unwise or not prudent to provide broader access to MAID, especially to disabled people, in these circumstances?
Ms. Qualtrough: Thank you, senator, for the question. I share the concern that our systems and our supports are lacking. In fact, like other marginalized populations in Canada, there is systemic discrimination against citizens with disabilities in this country. I’m not shying away from the conversations we need to have at both the federal and provincial levels to address those realities.
What I also hear from individuals within the disability community is the irony, almost, or the potential double jeopardy of denying somebody something because they have been denied something. I don’t know if that makes sense — it made sense in my head — but this idea that we are saying we will not offer access to MAID because we have not provided sufficient supports to you. That we’re going to doubly harm you is the argument or the concern that is raised with me.
That being said, by requiring in this legislation that individuals be informed of and have considered their options, that this is an important part of the process to make those supports and systems better. In the meantime, though, I can’t justify denying something because we’re not providing something.
Senator Dalphond: I understand that you expect that these measures will increase better access to support and care for disabled people?
Ms. Qualtrough: What I understand is that I am raising the alarm and pointing out the obligation on all levels of government to provide this support. It is certainly why we are trying to get at some of these issues through direct income support for people with disabilities through a new Canada disability benefit. I think that, in and of itself, will allow for more options for people as we lift so many people out of poverty with this investment. Yes, there is a heck of a lot to do, and we have a lot of ground to make up.
Senator Dalphond: Thank you.
Senator Batters: Minister Qualtrough, in addition to being the minister for disability inclusion, you are a lawyer, and as you said, you live with a disability. During the course of our Bill C-7 study, we have heard alarming concerns from so many in the disabled community about how the removal of the end of life criteria on Bill C-7 will actually result in Bill C-7 being found to be unconstitutional because it violates section 15, and that it violates the equality rights of people with disabilities. It would discriminate against them. We have heard this from Krista Carr of Inclusion Canada, that because Bill C-7 removes the end of life criteria, that is the only current MAID criteria in Bill C-14 that would not be applicable on a daily basis for many disabled people in Canada. University of Ottawa law professor, Elizabeth Sheehy, echoes this concern.
Minister, as a lawyer and as the minister for disability inclusion, why are you persisting in trying to push through this bill, which so many in the disabled community say discriminates against them and will likely be thrown out as unconstitutional?
Ms. Qualtrough: Thank you, senator, for those important and difficult questions. I’ll defer again to my colleague, the Attorney General, on the constitutionality of this. I don’t think it’s appropriate for me to weigh in as a lawyer on this, but I will tell you that I have heard these concerns. I am aware that there are important conversations going on that in some way Bill C-7 creates a class of people discriminatorily who would have access to MAID by virtue of a personal characteristic — they simply have a disability.
I have looked into this. I personally believe that the eligibility criteria, more specifically, is a grievous and irremediable medical condition that has three specific components: serious and incurable, advanced state of irreversible decline and enduring physical and psychological suffering. That means it doesn’t include everyone with a disability. Those three particular requirements for something to be a grievous and irremediable medical condition is a subset of people with disabilities, for sure, but it’s people with significant incurable illnesses or diseases. Now, a broad definition of disability would include everybody in that definition, but it wouldn’t include me, de facto, because I can’t see. I wouldn’t have access to MAID unless I personally met the other criteria where my condition was serious and incurable, in an advanced state of irreversible decline and I would be suffering an enduring and intolerable physiological or physical suffering. It’s a subset of the group.
Senator Batters: I’m sorry, I need to go on.
Ms. Qualtrough: Please go ahead. I apologize.
Senator Batters: One safeguard that the disability community has been adamant about preserving is the 10-day waiting period when death is reasonably foreseeable. We have heard your government talk about usual scenarios and what is often the case. For example, often an individual has come to this decision after years of consideration and consultation, and that the 10 days is unnecessarily cruel. However, would you not agree that safeguards are not intended for clear cases, but rather there in order to prevent the worst case scenario, a wrongful death, and to protect the most vulnerable?
Ms. Qualtrough: I agree with you absolutely that the purpose of safeguards is to protect the most vulnerable and not the normal best-case fact pattern we can put forward to test something. But we did hear that the 10-day reflection period did not have the intended safeguard effect that we had contemplated in Bill C-14. We honestly heard that it prolonged suffering; that people had gone through the assessment process that they had been assessed and had been approved, they made their decision and they talked to their family.
I honestly don’t recall — and I’m not saying this didn’t happen — but I don’t recall someone saying to me that it was an effective safeguard as it was intended. The decision was made to allow for more dignified end-of-life decision-making in order to not have people not taking their medications so they can remain having capacity. This decision was not taken lightly, but we heard very consistently that this 10-day reflection period didn’t have the intended safeguard effect.
Senator Batters: Seventy-two organizations who serve Canadians with disabilities across the country signed a public letter urging the government to appeal the Truchon decision, the lowest-level court in Quebec. They gave several reasons why a failure to appeal would be disastrous for the disability community, including that:
The decision will entrench stereotypes and exacerbate stigma for Canadians with disabilities, contributing to the adversity and oppression experienced by this vulnerable group.
As the disability inclusion minister, you are obviously well aware of the major concerns expressed to your government from that community, including every major national disability organization.
Could you please tell the committee which specific concerns from the disability community that were included in that letter your government determined not to be valid when you made that decision not to appeal the Truchon decision, at least to the Quebec Court of Appeal?
Ms. Qualtrough: Thanks for the question. I know the Minister of Justice spoke in more detail about the rationale for not appealing.
I can tell you I was concerned about having an inclusive analysis of what came next. I believe strongly that the parliamentary process is a more inclusive process than the justice process in these kinds of circumstances where we want public policymakers — I wouldn’t be at the table, for example, to have this conversation if we had made the appeal. We don’t know where we would be. We wouldn’t have all the voices you have heard from.
There was a strong rationale, particularly given pre-existing concerns around the constitutionality of this regime, to move forward through Parliament to make this law better rather than to tie it up without certainty in the courts for a number of years and then potentially end up exactly where we are today.
Since that decision, I have worked very hard to include everyone and make sure that all the voices, experts and thinkers who needed and wanted to be heard on this issue have had the space to do so.
Senator Cotter: Thank you very much, Minister Qualtrough, for coming and joining us and sharing your perspectives on the bill and the overall circumstances that are no doubt challenging for very many sectors of our society and communities.
I have, essentially, two questions or concerns. The first one is a statement, but I would invite you to respond.
With respect to the exclusion of mental illness as a result of the bill, your discussion in relation to it is entirely in policy terms. However, one of the points that various senators have shared, including Senator Carignan, is that this is not so much a policy question as a constitutional question, and the choice that you’re making to examine it in policy terms leaves some people who will feel constitutionally excluded and that their only option will be to go back to court. Then we will have yet another round of constitutional litigation on this question. It doesn’t feel as though you’re taking the constitutional dimension of this question seriously enough.
Let me state my second question, if I may. This concerns less the legislation, with respect to which I’m generally supportive, and more concerns the services that are made available to people with disabilities. Let me offer you a small analogy. In the last 10 months or so, we have faced an enormous challenge as a result of the COVID pandemic. As a result of government policies, federal and provincial, people have been put out of work, necessarily so, and businesses have been shuttered or made very vulnerable. What we did as a result of this was to put in place, through the very good work of your colleagues and yourself, safety nets to support those consequences of a government initiative. Good for you. That was the right thing to do.
In this legislation, we are creating a greater opportunity for people with disabilities to have a chance to access a particular program but with, at least, it’s been strongly stated from disability communities, a greater degree of vulnerability being created. I’m concerned that you’re not providing targeted federal resources that you insist be delivered, not just on the question of making people a little better off financially, which is a good initiative, but in all of the rest of the dimensions of their lives that will reduce that degree of vulnerability.
It seems to me, if you take an action like this, you need to take the corresponding reaction so both sides of the autonomy equation are raised up. It doesn’t seem to me that conversation is much of a commitment. That’s my question. Thanks.
Ms. Qualtrough: Thank you, senator. I’ll begin by clearing up that I’m focusing on the public policy considerations particularly in my explanation of the exclusion of mental illness, which is not to say in any way that we did not seriously consider the constitutionality. I was deferring, out of respect, to my colleague, the Minister of Justice, on the constitutionality of it. But I can assure you that those considerations were very much taken into account, and a Charter statement was tabled in the House of Commons addressing the constitutionality. If I’m not mistaken, the Minister of Justice offered to provide further analysis to this committee if you’re so inclined. If you would like to take him up on that offer, I’m sure he would be happy to provide you with that information.
I agree with you regarding the services. Again, I’m highlighting a recent commitment around the disability benefit employment strategy and modernizing our federal approach to disability in the Speech from the Throne. I can assure you that we are investing in housing. We are investing in personal support workers. We are investing in mental health support. We are investing in palliative care. We are investing in community service organizations that provide support to Canadians with disabilities.
My job, it feels like, the vast majority of the time, is working with Krista and her team to ensure that the initiatives and measures we put forth as a government are considered from the disability lens perspective and that we make sure we target our investments. We carve out investments where appropriate, and we make sure that our criteria are as inclusive as possible to make sure that, in everything we do, we understand the impact on people with disabilities.
We are desperately trying to raise the tide on this.
Senator Cotter: If I could ask one brief supplementary question, Mr. Chair. Are you making new investments that are specific in response to the Bill C-7 initiative?
Ms. Qualtrough: I would say, senator, that our Speech from the Throne was a catalyst for the approach we’re taking in our disability inclusion plan and is absolutely the conversation we’re having here today. We know that we need to provide better supports and fix our systems. This is a direct way that we can do that without in any way saying it’s enough or we don’t need to do more.
The Deputy Chair: Thank you very much.
[Translation]
Senator Dupuis: Thank you, minister, for being with us today. I truly regret the problems you have had and even the fact that you had to ask for accommodation to appear before a Senate committee. I find it unacceptable that it is not a given. I wanted to tell you that. It’s regrettable. I find it most unfortunate.
I would like to take you back to the cases of Ms. Gladu and Mr. Truchon. They went to court because the federal Parliament had responded to the Carter decision, which established that a person’s suffering was the only criterion to be considered for them to have access to medical assistance in dying. The Quebec legislation, which preceded the federal act, also includes an end-of-life requirement. Federally, Parliament maintained the “naturally foreseeable death” test. According to the professional bodies regulating the provincial colleges of physicians, that is a vague and ambiguous concept and it cannot be regulated. So we are dealing with a concept that is not easy to apply.
It has been acknowledged that, like all other Canadians, people with disabilities may be eligible for medical assistance in dying, which is recognized as a constitutional right. Why are we going backwards with Bill C-7 by reintroducing a concept on which there is no consensus and that cannot be defined or regulated by physicians?
[English]
Ms. Qualtrough: Thank you, senator, for the question. As you all know, reasonable foreseeability of natural death is no longer applicable under Bill C-7 as an eligibility criteria. Rather, it is used to determine what set of safeguards apply to a particular MAID request. Again, in the consultations with doctors, with advocates, with individuals, with families, we found it necessary to find a way to both allow dignified access to MAID for those people who are near the end of their lives and a more rigorous set of safeguards for those who aren’t.
We heard that as much as there is ambiguity, medical practitioners, MAID practitioners have come to have a certain level of comfort and collective understanding of what reasonable foreseeability of natural death is. They asked us to continue to permit a flexible connection and not a specific timeline, that there had to be a temporal connection, and that the practitioner was best positioned to determine the way that an individual’s condition would be impacted and the trajectory of their life.
People decline toward death along trajectories that are of greater or less predictability is the way I would say it. We heard from practitioners that the best way to proceed, if we wanted to have different safeguards in different circumstances, was to keep our RFND, because there is some familiarity, it does allow flexibility, but then to tailor safeguards depending on the practitioner’s determination of RFND depending on the circumstances of the person making the request.
[Translation]
Senator Dupuis: Minister, in the course of your consultations, have you had the opportunity to consult with those who have been administering Quebec’s medical assistance in dying regime for a number of years now?
Witnesses have told us of their great fear of potential abuses, and those fears are legitimate. However, that is not at all what we were told by the witnesses — doctors, lawyers and others — who have appeared before the committee and who have experience with the Quebec medical assistance in dying regime. Have you had the opportunity to consult with them?
[English]
Ms. Qualtrough: Yes, I did, senator. I actually participated in the Montreal consultation. We heard from practitioners in Quebec who both were worried that broadening the criteria would result in some practitioners choosing to no longer perform MAID because the limit of their comfort ended when we moved beyond an end-of-life regime. But we also heard from practitioners who were concerned that we would define RFND and make it a legal definition with a timeline, a number of months. If your death isn’t within 9 months or 12 months or 18 months, one day after that you no longer have access to specific safeguards or you have to fulfill heightened criteria.
My take away from the many consultations and conversations I had was that practitioners wanted to retain the flexibility on a case-by-case basis in relation to the specific person seeking MAID, consider the whole of their circumstances and then determine if the person’s natural death was reasonably foreseeable.
The Deputy Chair: Thank you, minister.
Senator Plett: Minister, thank you for being here. You felt the need in your opening comments — by the way, I agreed with them — to talk about respect for ministers showing up here and indeed for witnesses showing up here.
I hope all senators will take that admonition seriously. I was disappointed yesterday when senators actually questioned the credentials of witnesses because those witnesses’ views did not happen to line up with the honourable senators. So I hope everybody will take that admonition seriously and I thank you, minister, for raising it.
Minister, as I am sure you are aware, Roger Foley, a Canadian struggling with disabilities, testified at the House of Commons Justice Committee. He was offered assisted suicide by a physician when he was simply inquiring about adequate living arrangements. He recorded one such incident which received widespread media attention. This incident even caused great concern to the UN Rapporteur on the Rights of Persons with Disabilities.
Minister, do you acknowledge the power differential that exists between physicians and patients? Do you see an issue with a physician offering assisted suicide to a vulnerable patient who has not asked for a way to end his or her life? Do you think there should be a limit to how many times a physician can offer assisted suicide to a disabled patient who has demonstrated no such interest?
I do have a supplementary, minister, but please.
Ms. Qualtrough: Thank you, senator. I absolutely acknowledge and am quite preoccupied by the power imbalance between practitioners and patients, particularly patients who have been in systems that have discriminated against them and ignored their voices their entire lives. I have grave concerns with the particular circumstances of the individual that you spoke of. Quite frankly, I can tell you, he is not alone. I regularly hear from families who are appalled by the fact that they take their child, potentially their older child and are offered unprovoked MAID. I think that has to stop. That’s a matter of practice, I would suggest, and we need to get at that through our regulations, through working with our medical associations.
But it really speaks to the underlying systemic discrimination that we can’t not talk about any more in this country. If there is any good that comes out of these difficult conversations, I hope it is that. I hope that we figure out a way to do better by our citizens.
As I said, senator, the Criminal Code is a blunt instrument for me to get at discrimination in provincial health systems. I’m aware of it, and we are working with colleagues to address it.
Senator Plett: Minister, other jurisdictions have acknowledged this power differential and have enshrined it into law, that discussions about assisted suicide must be patient-led. I am wondering why we wouldn’t have something for greater certainty in the bill, but in order to protect the vulnerable from subtle coercion, like in the case of Mr. Foley, did your government consider this legislative option to mandate that discussions about the assisted suicide must be patient-led? If so, why did your government ultimately reject it?
Ms. Qualtrough: Thank you. I’ll start, senator, by saying that that has not been rejected by virtue of the fact that it’s not in Bill C-7, please don’t take from that, that conversation is off the table moving forward. Again, I would suggest that the timeliness and the focus of our conversations to address Truchon necessarily required us to not have other important conversations and this would be one of them.
Senator Plett: Would you support an amendment, minister, to that effect in the bill, put something about it for greater certainty? I’m certainly not a lawyer, but I’m sure there would be a way of amending the bill that would clearly address that. Would you, minister, as a minister responsible, would you support that amendment?
Ms. Qualtrough: I personally, as a matter of philosophy, support anything that makes our laws better and would be open to considering that senator, yes. Again, I don’t have the legal analysis in front of me. I’m not sure if our consultations were fulsome enough at this point on that point. But I absolutely commit to you to consider it and to look into it after this committee appearance.
Senator Plett: Thank you very much, minister.
Senator Pate: Thank you very much, minister, for attending and also, Senator Petitclerc and Ms. Wilcox, for your work on this bill.
I also want to join my colleagues in apologizing to you for the situation you faced when you joined us. I’m very sorry to hear that happened. I join my colleagues in assuring that we will try to ensure that never happens again.
As you well know — and you certainly have been in leadership on this minister — both prior to and during the pandemic, we have seen the incredible challenges faced by many people in this country. We have seen the gaps, huge, gaping chasms, in terms of our economic, our health and our social services systems. I thank you for leading the way in trying to ensure that people with disabilities and all people who are experiencing marginalization have their needs and rights realized and can access adequate care.
I’m going to ask you this, as I did your colleagues. I find it deeply troubling that Bill C-7 entrenches in the health care act the right of access to medical assistance in dying as a core service under the Canada Health Act. And yet as we’ve heard and as you have acknowledged, there is evidence about the number of people who have not had access to services.
While I appreciate your promises and those of others that things are coming that will assist in this regard, you can imagine it is cold comfort in light of the fact that we don’t see it now. It really causes significant concern to me that we would be passing something without first having clear evidence of what is actually going to be implemented.
So as such, I’m asking you whether you would support an amendment to Bill C-7 regarding supports such as palliative care, disability services, home care, housing and income support for those who would be eligible for MAID and, in particular, an amendment to the Canada Health Act that would require palliative care and related disability services as core services under the Canada Health Act?
We know this is something that the Canadian government can do. During the pandemic, we’ve seen the development of clear guidelines. We know that, certainly through the transfer payments, the income support could be assured for individuals as well as the service support. I’m asking whether you would support those amendments. Thank you.
Ms. Qualtrough: Thank you, senator. Thank you for the conversation we had earlier on this bill.
I am very interested, while respecting jurisdictional boundaries, in finding ways to show leadership and address inequities within whatever systems we can, as a federal government. I’m hesitant to commit specifically to an amendment of that magnitude without having the benefit of an analysis in front of me, but I find it a very creative solution.
You and I spoke about guidelines earlier this week. I’ve already been looking into the kinds of guidelines we can create by regulation, whether it be for assisted living, whether it be for disability supports. I’ve also been looking at having a national conversation with my P-T colleagues on harmonizing and bettering disability supports. I don’t know if those things can be done through Bill C-7.
I appreciate your reference to cold comfort because I hear it. I hear how I’m talking and I’m trying to be as definitive as I can, but I appreciate that a lot of this is not baked yet and there is rightful concern about the solidity of my promises.
Senator Pate: Minister, in light of that, would you support requesting a further extension from the court in order to ensure that these sorts of issues are more fully addressed?
Ms. Qualtrough: Again, senator, those conversations with Justice certainly can be had. I would not want to weigh in, in deference to my colleague, the Attorney General, and his prerogative on such matters, but certainly I understand that we’re in a pandemic but I also understand that we’ve already requested a couple of extensions. We felt it prudent not to assume we would get one. Given the consultation we had done, we felt we could put forth something meaningful at this time. That doesn’t preclude those conversations. I’m just not the lead on that decision.
Senator Pate: Great. Thank you. Certainly there has been much indication and speculation that if the Truchon decision was decided now, in light of the pandemic, we might have a difference response. Thank you very much, minister, for your response and all of your work. It’s much appreciated.
Ms. Qualtrough: Thank you.
Senator Kutcher: Thank you, minister, for joining us today. Please let me add my voice to the concerns that my colleagues have also raised.
Bill C-7 creates what many have argued is a vague and unjustifiable exclusion criteria for persons who have mental illness as their sole condition, but it allows for when mental illness is comorbid with another illness, even when death is not foreseeable. As you know, that could be 20% or up to 50% or more who could have that kind of comorbidity.
Since it is impossible to determine if the request for MAID is primarily due to the mental disorder or not, this prima facie distinction does not seem to be logical. Can you share with us your thinking on this conundrum, please?
Ms. Qualtrough: Thank you, senator. The starting point, of course, for us was concern about the lack of consensus on mental illness solely, but then the impact of mental illness on other conditions which in and of themselves may meet eligibility criteria because of grievous and irremediable.
This is where I have landed on this, senator, and I will confess that I am always open to persuasion. The more information I get, I tend to adjust my thoughts accordingly. If someone has a grievous and irremediable medical condition, again, we look at the individual and the whole of their circumstances. As a result of the whole of their circumstances, they may be in a position where their illness, injury or disability is serious and incurable, where they are in an advanced stage of irreversible decline that is causing this enduring and intolerable or psychological suffering. It’s the whole person that we look at, their medical circumstances individually, and we meet them where they are, not prejudging the relative impact a particular condition would have. It wouldn’t be an inconsequential comorbid condition because that condition, in and of itself, would have to meet the criteria for “grievous and irremediable,” as I understand it.
Senator Kutcher: Right. But again you see the difficulty here. I just wonder; I can understand the wish to safeguard individuals who may be suffering from a mental illness as their sole underlying condition. I heartily agree with that, but I wonder if it may be more prudent to remove this stipulation where it may actually, as Senator Cotter noted, cause constitutional challenges and beef up the safeguards, even something like putting in a sunset clause which would allow additional safeguards to come into place.
Would you be willing to take that under advisement or consider that as a potential amendment to the bill?
Ms. Qualtrough: I think we would, senator. Again, I put that out as a general modus operandi of myself. But, yes, we want to make this law as good as it can be. We will consider whatever the Senate gives back to us very seriously.
Senator Kutcher: Thank you very much for that, minister. I’ve always found you to be open and thoughtful. I appreciate your being with us again here today.
[Translation]
Senator Boisvenu: Welcome, minister. I am having trouble understanding how you relentlessly advocate for equal rights for people with disabilities and “normal” people and yet fail to defend that principle when it comes to people with mental illness. Since 2016, your government has been aware that this bill discriminates against people with disabilities and those with serious mental health issues. So it seems you have made no progress with respect to mental illness, even though attitudes in the provinces and among those on the ground have changed in that respect. As a result, this bill is lagging behind society, which means we will have to do this all over again in a few years.
It’s all the more difficult to comprehend your decision, given that people with mental health issues are the poor cousins of our health care system in Canada, and federal end-of-life support barely meets 10% of their needs.
Are you aware that, in the next three to four years, before people are open to new insights into mental illness, the only solution for many of these individuals, who are suffering and want to end that suffering, will be suicide? Between 2016 and 2020, many have been denied medical assistance in dying. Every month, every week, we hear disturbing stories of mothers, grandmothers and fathers who have ended their lives, particularly by starving themselves to death.
We are considering a bill that needs to be humanitarian. I believe your position on mental illness is to politicize this bill, and I feel that is to the detriment of those who are suffering.
Minister, would you consent to the bill being amended to include people with serious mental health issues, by adding a sunset clause that would ensure that we would not have to come back to Parliament in one or two years to make those individuals eligible for medical assistance in dying? The sunset clause could be brought into effect simply by a ministerial decision.
The situation in 2022-23 will be no different from what we have experienced between 2016 and 2020, that is, that people will be left on their own to cope with their suffering, and that is not our mandate.
[English]
Ms. Qualtrough: Thank you, senator, for your question. I hear you and I understand your concern. I believe what we heard was that there was not a clear definition of mental illness in the medical context, nor was there consensus within the medical community about the types of concerns these particular conditions raise when it comes to eligibility for MAID. We were not prepared to, without further analysis and discussion with experts — this is not a political decision, I can assure you — knowing that the parliamentary review was coming —
[Translation]
Senator Boisvenu: I understand, minister, but did you know that this month Quebec will be tabling a document that will effectively regulate which individuals would be eligible for medical assistance in dying due to serious psychological distress? Quebec is already there; they are moving faster than the federal government, and you do not seem to realize it.
[English]
Ms. Qualtrough: I am aware, senator, of this. I will reiterate that our preference was to address this issue within the broader context of the parliamentary review, which is imminent and which I would suggest, had we not been in a pandemic, would have already started by now.
The Minister of Justice and I, in particular, are committed to this happening as soon as possible, given everything else that is happening right now in Canada. Yes, I’m aware of what’s happening in Quebec and the progression of both the thinking and the law, and I remain of the opinion that this is the most prudent course of action for now. That’s the best I can offer you.
Senator McCallum: One of the dangers of having doctors help people to die when they are sick and suffering is a lack of cultural competence. Health service research has called attention to the issue of the lack of culturally appropriate training for doctors when dealing with racial and ethnic peoples. This lack of training has resulted in documented disparities and inequities in the existing health services and outcomes provided to all segments of Indigenous peoples but particularly the disability community.
Now, on top of these existing disparities, and to make the situation more complex, this bill has imposed another level of health service — assisted dying — on a group of people that are the most marginalized in Canada: the First Nations Métis, Inuit and non-status people who are challenged in multiple ways.
Living with the reality of disparities means that voices are not being heard. Therefore, Indigenous peoples are already unable to make decisions in many areas of their lives, including quality of life. Disparities mean that their dignity has been, and continues to be, assaulted.
The health system has been complicit in health disparities in Indigenous communities, so how can we trust the system to now correct existing disparities and also act on these new concerns raised by Bill C-7?
It is understandable that there is distrust by the Indigenous communities — and particularly the disability community — in the health system, including health professionals, as we continue to see blatant acts of racism. Trust is critical when offering MAID.
When looking at this from a lens of existing disparities in health outcomes among population groups with disabilities, it should already trigger moral scrutiny. When looking at it from an anti-discriminatory lens, disparities in terms of adverse health outcomes among racial, ethnic or other disadvantaged patient groups that are disabled should trigger a heightened moral security.
What steps has your office taken to ensure that the disability community — particularly Indigenous people and people of colour — will have their security, safety, and freedom from oppression and colonization upheld in a meaningful manner in this bill? Was a gender-based analysis done on this bill? How were the multiple and intersecting forms of barriers on these various groups accommodated? Thank you.
Ms. Qualtrough: Thank you, senator. I agree with you that this concern is well-founded. We did a disability analysis from my shop. I know that GBA+ and race-based analysis were done by the Minister of Justice and the Justice Department. I will again highlight the significance of people being informed of the options that are available to them. However, we do have to recognize that our medical practitioners themselves have to then know what options are available.
Through provision of services equivalent to the navigator role that, say, BCANDS — the British Columbia Aboriginal Network on Disability Society — is playing, it’s a useful model. We are looking at that in terms of meaningfully supporting individuals in a culturally appropriate way, and working with doctors and practitioners to improve their cultural sensitivities.
During consultations with the First Nations Health Authority in B.C. and with the B.C. Aboriginal Network on Disability Society, we did have Aboriginal participation, but we absolutely need to do more.
The rate of disability in Indigenous communities is twice that of the national average. That sets off major alarm bells for me. It means the most vulnerable people continue to be not properly included in our systems, nor to have a voice in the future of these systems.
The Deputy Chair: Thank you, minister.
[Translation]
Senator Dupuis: Minister, would you agree to include a provision in Bill C-7 that would allow one year in which to define safeguards for people suffering solely from mental illness? The safeguards would be necessary to guarantee safe access to medical assistance in dying. So this section would provide that no one would be excluded outright, and experts would be asked to comment on the nature of the safeguards needed to ensure that people make this choice safely.
[English]
Ms. Qualtrough: Thank you, senator. I’m certainly open to looking at any amendment, as I’ve said. I would suggest that this same analysis will be undertaken through the broader parliamentary review. Perhaps we could work with your committee even on identifying specifics that the government would put forward as aspects of the parliamentary review.
I hear you, and I’m certainly open to considering what you just put forth. I’m curious as to the overlap with the parliamentary review, but absolutely, please put that forth if your committee thinks that that’s an appropriate way forward on this issue.
[Translation]
Senator Dupuis: Thank you.
Senator Boisvenu: Minister, first of all, I’d like to commend you for your openness, because Senator Dupuis is asking much the same question as I would have asked.
I remind you that, in 2016, the Senate did a great job improving Bill C-14, and, when the justice and health ministers at the time testified before us, they were very open to our concerns. Yet nothing was done. That’s why we are here today to discuss improvements to this bill with the government.
So, Minister, when we consider this bill over the next few weeks, the people who will be testifying before us, especially those advocating for the rights of people living with mental illness or those treating them, will certainly be asking for an amendment in that regard. I am sure of it. So we will have to find a compromise so that we can tell those people that we have heard them and that we will not leave them in limbo for another three or four years. Are you prepared to defend the commitment you have made by responding positively to my colleague Senator Dupuis before your colleagues? If not, that commitment may well be worth nothing.
[English]
Ms. Qualtrough: I can commit to you sincerely, senator, that I am open to making this law better. We displayed that openness when we accepted amendments from the Justice Committee in the House of Commons. I think they were accepted yesterday. I’ve lost track of my days. I apologize. But the message I’m sending to you is, please, yes, let’s work together; let’s find a way forward on this. And I absolutely will be open to considering whatever you put forward and working together to make this law the best that we can.
Senator Plett: Minister, I get the very distinct impression you are almost as uncomfortable with this bill as most senators are. I want to thank you, minister, first and foremost for being very open about your feelings and concerns certainly for the — [Technical difficulties]
Ms. Qualtrough: Sorry, chair. I’ve lost the senator.
The Deputy Chair: Senator Plett, I don’t know if you can hear me or not, but you froze. You’re back.
Senator Plett: I don’t know how much of that the minister heard, but let me go to my question. For people whose death is not reasonably foreseeable the bill introduces an assessment period of 90 days, combined with an evaluation of eligibility by a practitioner with expertise in the patient’s condition. These measures are meant to ensure that people with disabilities and chronic illnesses are informed of other available treatments or support options outside of assisted suicide. But as international health law expert, Dr. Trudo Lemmens, wrote recently in his article:
. . . unlike any other country in the world, the new bill fails to explicitly require that all reasonable options be made available and tried first, before allowing physicians to end a patient’s life.
He continues:
In other words, the bill makes their dying easier than living. Rather than instilling hope and helping to build resilience by focusing on options for living, health care providers will now be asked to discuss an early death.
Minister, are you concerned that the provisions of this bill make Canada the most permissive assisted-suicide regime in the world? And why, minister, would your government not have ensured that assisted suicide be the very-last-resort option only, the way all other jurisdictions have, that it is the last resort and not one of a number of options, whether you want to move to a different apartment or you want to kill yourself. I find that kind of ironic.
Ms. Qualtrough: Thank you, senator. We put in place the 90-day assessment period — and remember this is an assessment period, not a reflection period — for those individuals whose death is not reasonably foreseeable in recognition of how challenging the assessments can be in these circumstances to really get to the cause of the suffering. We did not go as far as other jurisdictions to require that individuals avail themselves of every possible alternative. We did not think that was appropriate. We heard that people felt that a corresponding right to try something was the right not to have to do it. Chemo may be available and it might prolong my life by a couple of months, but I choose not to do it as a matter of personal choice and dignity. We did not see it as appropriate to go as far as to require that that alternative be imposed on an individual from a personal autonomy point of view.
Right now, the legislation says that individuals need to be informed of possible alternatives to alleviate their suffering. I appreciate your mentioning that they be made aware of those options. I would suggest that would be the next step in terms of imposing an obligation to provide these. I’m not comfortable going as far as to say that they have to have exhausted all their options. I feel that’s actually impositional, personally, but I hear you on the perceived irony that you mentioned and am sensitive to it. I think where we are right now in Canada is what is reflected in this law. I don’t think Canadians want us to impose that somebody has tried something against their will in order for them to access this procedure.
Senator Plett: Minister and chair, I’ll just make a very brief closing comment if the minister would allow a bit of a partisan comment here coming from the Leader of the Opposition in the Senate to a Liberal cabinet minister.
I thank you for being one of the most open ministers that we have had at any committee hearing and for, indeed, expressing your very personal beliefs on this bill. Thank you very much for that.
Ms. Qualtrough: Much appreciated, senator.
The Deputy Chair: That’s no small thing, minister, believe me.
Ms. Qualtrough: Thank you.
Senator Kutcher: Minister, in exploring improvements to safeguards in the bill, a number of my Senate colleagues and I have been aptly looking at the possibility of having several health care organizations — national and from Quebec — collaborate on developing a continuing professional development program for the assessment and delivery of MAID, leading to a national certification for MAID providers. This would be a major step forward and would include the issues that Senator McCallum raised around cultural competencies.
Would you be interested in learning more about such an innovation and be open to considering supporting it?
Ms. Qualtrough: I certainly would. I think it’s a very powerful idea and gets at the people who are in the position to make these very difficult decisions. Absolutely. I would encourage you to include disability-inclusive training as well in that proposal. I’m happy to look at it.
Senator Kutcher: Thank you very much, minister.
Senator McCallum: Thank you, Minister Qualtrough, for all the work that you do. I also apologize for the problems that you had in accessing this meeting.
The interjurisdictional problems that First Nations continue to face is concerning, as provinces continue to create gaps as they see health services as a federal responsibility for Indigenous peoples but not for other Canadians. Yet Parliament continues to force bills through that create more gaps or widens these gaps due to these interjurisdictional issues. Only one group falls into these gaps — Indigenous peoples. Do you see this as an issue of discrimination, and does this bill address this in anyway?
I also continue to hear once again that Indigenous communities express the view that they have not been consulted, despite the Prime Minister’s statement that we are in a new relationship between Indigenous and non-Indigenous citizens and moving toward reconciliation. Now we are back with the current situation of time constraints that prevent fulsome discussion and triggers heightened concerns. Will your office accept amendments made by Indigenous communities to ensure that justice in some form is done?
Due to these time constraints, it seems that this is the only option that remains for parliamentarians so they can uphold their responsibilities in ensuring the security and safety of all Canadians, and particularly the most marginalized Indigenous peoples from the disability community. Thank you.
Ms. Qualtrough: Thank you, senator. The short answer to your question is, yes. The longer answer is again rooted in my strong belief that it is not up to us, or me or any one of us, to determine if consultation has been sufficient. We’ll know when people feel that they have been heard and see themselves in the laws we make. If there is a particular group that isn’t seeing themselves, that’s a problem. I am certainly open to doing whatever I can to remedy that, and to work with you and the Indigenous community.
As I said, we did have participation. I have heard the same concerns that you have and will do what I can to remedy them.
The Deputy Chair: Thank you.
Senator Pate: Thank you again, minister. I was asked a question by some constitutional law experts that I do not know the answer to. I recognize you may not, but I felt it important to get it on the record. The question is: Was the recent Fraser decision taken into account in the development of the Charter analysis? Because in the Fraser decision, the whole area of choice was examined and it was clearly articulated that where you have a choice that is massively influenced by a lack of state supports and general devaluation of the lives of persons — such as in this case, persons with disabilities — then there will be a constitutional issue around the ability of individuals to autonomously choose MAID, if in fact that is essentially the only option provided to them. I recognize and I do not mean to put you in an unduly difficult position, minister, but if that was not taken into account, is it possible for it to be taken into account now and an updated Charter analysis be provided to us?
Ms. Qualtrough: Thank you, senator. I think the best response is for me to defer to my colleague, get that information for you and make sure it’s accurate. I have an idea, but I wouldn’t want to speculate. It’s more responsible to commit to you to get back to you if analysis hasn’t been done with one that is sufficient. That’s my preferred course of action if you’re okay with that.
Senator Pate: Absolutely. Thank you very much.
[Translation]
Senator Dupuis: Minister, you have made the point, and rightly so in my view, that major discussions must still be held on the issue of medical assistance in dying. The context of a review of the legislation would be more helpful than the current context of a bill such as this one, which is being rushed through due to COVID-19, but also to meet the court’s December 18 deadline.
I asked the Minister of Justice a question and I was struck by his response. I asked him whether he would commit to undertaking a review and he replied that it was not up to him, but to Parliament, to do so. I was a little concerned and worried because, after all, he has the responsibility to enforce the law and, in that sense, one would expect a clearer commitment from him.
I do not want to ask you to comment on his commitment. However, one thing struck me when we were collectively thinking about this issue in Quebec in 2010. The in-depth study took the form of a bipartisan parliamentary committee essentially focused on the social and collective thinking around medical assistance in dying.
Do you believe that all these issues introduced in Bill C-7 should be reserved for a review of the act, and that the review should begin as soon as possible?
Ms. Qualtrough: That’s a good question.
[English]
We decided not to appeal. That is the track we are on. I think absent Truchon, the parliamentary review — well, it might have been stalled because of COVID, but it certainly would have included all the questions we are talking about and are attempted to be addressed in Bill C-7. There are broader questions, there are more details, and I think what we owe you is a commitment that when the parliamentary review can start, to seek your guidance on the topics that you would like to see considered and have a flexible composition on the committee doing the review, so we can dig in as a country on these most complicated issues.
Senator McCallum: Thank you. I want to go to the topic of the mature minors. It doesn’t only include mature minors, it’s adults who don’t understand their situation, specifically anxiety. The reason I bring this up is that when I was 30, I went through extreme anxiety and I understood why people commit suicide. I was fortunate to have a doctor who told me it was anxiety and I knew it was treatable.
I am a residential school [Technical difficulties] and I look at the people in the communities and the intergenerational trauma from multiple [Technical difficulties] and the mental issues that this brings up. I wanted to ask, who determines that these health professionals fully understand what is happening in this situation? Especially when the majority of the people are not getting adequate mental health services as it is. Thank you.
Ms. Qualtrough: Thank you, senator. I respect your voice so much on this issue.
You have addressed some of the challenges we faced in making our decision not to include mental illness at this point where the sole underlying medical condition is mental illness. Generally, there is an understanding that there is a reference, when you talk about mental illness, to conditions that are permanently treated by psychiatrists or psychologists. Again, I don’t think we have sufficiently explored this topic so that it can be weighed in on.
I will refer you to the reason we wanted to ensure, particularly in track two, where death is not reasonably foreseeable that one of the individuals has expertise in the patient’s condition, which is to get at some of the things that are underlying your concern. I appreciate there was an amendment in the House to this requirement, but nevertheless, there has to be a medical opinion with respect to the individual’s particular condition so that there is some knowledge base regarding the particular circumstances of the individual that practitioners can draw upon.
The Deputy Chair: Thank you. Are there any more questions for the minister? Minister, on behalf of the committee, I want to thank you for coming here today. Our leadership will get in touch with your office regarding the issue that happened setting up this meeting, so that we can ensure that we have better communication and so that everybody understands what happened.
Your testimony, as always, is heartfelt and is — I can’t use the two words that we use in B.C., but it’s straight-on, if you know what I’m saying.
Ms. Qualtrough: Thank you.
The Deputy Chair: You have always been honest with us. As you can tell, when Senator Plett jumps in on that, it’s really something special. I want to thank you for coming here today. I want you and your staff to be safe. Hopefully, we won’t have to call you back before Santa Claus comes. Thank you very much.
Ms. Qualtrough: Thank you, senator. I’m happy to come back if you need me to. I appreciate you digging in on this. You are doing our country a great service. Thank you.
The Deputy Chair: Thank you. Next we will hear from Dr. Carrie Bourassa, from the University of Saskatchewan and Grace Pastine from British Columbia. Good, we have the two provinces represented.
The Chair: To the panellists, I want to thank you for making time to meet with us, the Standing Senate Committee on Legal and Constitutional Affairs. While studying Bill C-7, we really believe your input and testimony is very important to our deliberations. We do want to hear your point of view. I also want to thank each and every one of you because we know that you had to prepare and be here on very short notice and you made great efforts to be here, so thank you very much.
We will start with our first witness, Dr. Carrie Bourassa, Professor, Community Health and Epidemiology, College of Medicine, University of Saskatchewan.
Dr. Carrie Bourassa, Professor, Community Health and Epidemiology, College of Medicine, University of Saskatchewan, as an individual: Greetings. Thank you for the opportunity today.
The Government of Canada has indicated between January 2020 and early February 2020 that they engaged the Canadian public, as well as provinces and territories, Indigenous groups, health care providers, experts and key stakeholders to receive their feedback expanding Canada’s MAID legislation in response to the Truchon decision. Over 300,000 Canadians participated in the online public consultations between January 13 and 27, 2020.
The Minister of Justice and Attorney General of Canada, David Lametti; Minister of Health, Patty Hajdu; and Minister of Employment, Workforce Development and Disability Inclusion, Carla Qualtrough, met with experts, health care providers, health professional associations and regulatory bodies, representatives of persons living with disabilities, Indigenous organizations and other key stakeholders, over 125 participants in total, to consult them directly on revising Canada’s federal MAID legislation. My question is: How many First Nations, Métis and Inuit stakeholders were consulted?
Second, I was a member of the Council of Canadian Academies expert panel on medical assistance in dying in 2018. I helped to organize the Indigenous elders’ circle below, and I suggest that this gap remains. Indigenous elders’ circle was facilitated by the Indigenous panel members. It was held in February of 2018 to provide insight into Indigenous perspectives on MAID, particularly with respect to the three topic areas. Six elders from Métis and First Nations in British Columbia, Saskatchewan, Manitoba and Ontario offered their knowledge to end-of-life attitudes, practices, issues and concerns. Notably, the elders felt that Indigenous peoples had not been consulted on the issue of MAID and the panel recognized that the elders’ circle was limited in scope and representation and did not constitute consultation with Indigenous peoples on the topic of MAID. This remains a significant knowledge gap.
Furthermore, although Indigenous communities and stakeholders may provide feedback into the legislative processes related to MAID, it is very important to ensure to take a distinctions-based approach as opposed to a pan-Indigenous approach. This is why I asked how many First Nations, Métis and Inuit stakeholders or communities were consulted. Our world views are different, particularly when it comes to the sensitive issue of death and dying. Just as there are divergent views regarding MAID among Parliamentarians, so too there are divergent views among Indigenous peoples across Canada on the acceptability and potential impacts of MAID in their communities.
Since there is no one-size-fits-all approach to incorporating Indigenous voices, health care facilities must communicate and work with nearby Indigenous communities to know what services they wish to see incorporated into their health care. Indigenous stakeholders must be engaged at the very outset of policy making and program design.
Moreover, culturally safe training for health professionals who may be involved in MAID should be mandatory. Meegwetch.
The Chair: Thank you very much, Dr. Bourassa.
We will now go on to the second panellist, from the Collège des médecins du Québec, Dr. Yves Robert, Secretary of the Order.
[Translation]
Dr. Yves Robert, Secretary of the Order, Collège des médecins du Québec: On behalf of the Collège des médecins du Québec, I would like to thank you for inviting us to comment on Bill C-7. With me today is Dr. Isabelle Tardif, Deputy Director General and Assistant Secretary, who will replace me as of January 2021.
The Collège des médecins du Québec has been involved in medical assistance in dying and end-of-life care. In 2006, the Collège was the first to develop practice guidelines for medical assistance in dying that now serve as standards in Quebec, Canada and some other countries.
We understand that Parliament’s decision to introduce Bill C-7 is based on the Quebec Superior Court decision on September 11, 2019, in Truchon v. Attorney General of Canada, which ruled unconstitutional a criterion in the Quebec legislation, namely the concept of “end of life”, and a criterion in the Criminal Code, namely the concept of “naturally foreseeable death.”
First of all, the Collège supports Parliament in its legal approach to amending the Criminal Code, but for the good of patients and to make life easier for physicians, we would like to see better harmonization between Quebec’s Act Respecting End‑of‑Life Care and the Criminal Code. We hope that the amendments will go in that direction.
Parliament intends to introduce some flexibility in the legal eligibility criteria for medical assistance in dying. In particular, we support including a requirement that compliance with the criteria must be confirmed by two physicians, one of whom has expertise in the individual’s condition, as well as specific requirements to ensure that the individual is making an informed request. It should be noted that these are necessary measures and that Quebec’s legislation, practice guides and guidelines ask physicians to comply with them — it’s already a requirement — whether or not the death of the individual seeking medical assistance in dying is foreseeable.
We also support the amendment to the Criminal Code that would require the signature of a single witness only on a request for medical assistance in dying. This will greatly facilitate the request process.
However, Parliament intends to retain the concept of “naturally foreseeable death” — an ill-defined concept that was criticized in the Baudouin decision of September 2019 — and to introduce different safeguards depending on the foreseeability of death of the individual seeking medically assistance in dying.
In an effort to ensure that the legal framework does not impede good medical practice, the college has serious reservations about this concept. In the logic of care that we have been advocating since we first became involved in 2009, a request for medical assistance in dying must not go unanswered and must not lead systematically to authorizing the medical assistance in dying, under the pretext that the law authorizes it under certain conditions.
Mr. Palmer: Dr. Robert, I’m sorry, but the sound is cutting out frequently. Can Dr. Tardif take over? We really can’t hear you very well.
Dr. Robert: Of course, I can ask her to continue.
Dr. Isabelle Tardif, Deputy Director General and Assistant Secretary, Collège des médecins du Québec: I’ll pick up where Dr. Robert left off.
The college recommends removing the reference to “reasonably foreseeable natural death” and introducing the same safeguards, regardless of the foreseeable nature of the death of the person requesting medical assistance in dying.
In particular, we recommend that the 90-day assessment period be replaced by a reasonable period of time, taking into account the development of the person’s condition, and that, unless he or she declines, any person whose application for medical assistance in dying has been accepted, and who risks losing his or her capacity to consent just before the time agreed upon for its administration, may waive his or her final consent.
Lastly, the bill provides that the administration of medical assistance in dying to a person with a mental illness shall not be permitted where that illness is the sole underlying condition for receiving it.
The Collège des médecins takes note of this, and we are available to contribute to the process to delve into this issue.
We’ve been interested in the mental health issue for several months. We’ve developed ways to address the issue in an informed way so we can eventually contribute to the discussion on medical assistance in dying for someone with a mental illness.
On that note, we thank you for listening.
The Chair: Thank you very much, Dr. Tardif.
[English]
We will now go on to the last witness on this panel, from the British Columbia Civil Liberties Association, Grace Pastine, Litigation Director. Ms. Pastine has very kindly agreed to read, after her remarks, the statement of Julia Lamb.
Senators, we had approached Ms. Lamb, and she preferred to make a written statement, so this is how we are going to proceed. Ms. Pastine, thank you.
Grace Pastine, Litigation Director, British Columbia Civil Liberties Association: Thank you for inviting me to speak today. I’m the litigation director for the British Columbia Civil Liberties Association. I’m appearing virtually from Vancouver, and I’d like to acknowledge that I’m speaking to you from the traditional, ancestral and unceded territories of the Coast Salish peoples — the Squamish, Tsleil-Waututh and Musqueam Nations.
I make this acknowledgment, understanding that the history of colonialism and ongoing oppression has led to glaring disparities in health care and health outcomes between Indigenous and non-Indigenous peoples. Any public health discussion, including a discussion about MAID, must recognize and transform this fundamental, ongoing injustice.
The British Columbia Civil Liberties Association, along with Joseph Arvay, represents Julia Lamb in her case challenging the constitutionality of the current MAID legislation. As the senator said, Julia was not feeling well enough to speak to you today, but she did ask that I read a statement on her behalf, which I will do now.
She writes:
Thank you for the time and opportunity to have my words heard today during this pre-study. Four years ago, I joined the British Columbia Civil Liberties Association after the passing of Bill C-14. Motivated by the understanding that as it stood, if and when I would apply for MAID, my application would be unjustly denied as not fitting the reasonably foreseeable natural death eligibility category.
This exclusion was felt by me immediately, and its reality proposed to me that the prolonged and agonizing suffering of those who are not on a definitive trajectory to death would be left without choices or to make heartbreakingly terrible ones. At this time, I faced that this could be the state of my future.
Out of the fight from Nicole Gladu and Jean Truchon, Bill C-7 acknowledges the truth that reasonably foreseeable natural death is an unconstitutional sole criterion. The decision of this case was also felt immediately, except that instead of exclusion, many Canadians felt heard and respected, for MAID is the individual’s choice to make, regardless of the timeline of their intolerable suffering. I have heard this firsthand through personal stories shared with me.
Now, Bill C-7 exists in this moment containing three areas of concern, from my point of view.
First, the adjournment of my case was based upon evidence that I would now be eligible under the reasonably foreseeable natural death requirement. Worryingly, though, this language has been kept in this bill, yet has had no added or detailed definition and is being used to differentiate the defining two-track setup of Bill C-7. This leaves confusion as to where I personally may fit in, and I fear that the language lacks clarity. I think if “dying” were struck from the preamble of Bill C-7, it would go a long way to help me and my doctors know that reasonably foreseeable natural death applies to my medical condition.
Second, someone who is eligible, meeting all criteria, but is not determined to be “reasonably foreseeable” in their decline must confront a 90-day waiting period. I say “confront” because a 90-day waiting period is a large and looming time frame to be under when suffering intolerably. I have great concern what these criteria might mean for my future if I choose MAID — the last days of life being not something of my choosing, and the drawn-out pain and suffering I may endure because it is not determined as equal to those who are more timely in their matter of dying. A bill that is supposed to be a choice, to end feeling trapped and hopeless in unbearable suffering, instead may trap me within an excruciating 90-day waiting period.
Third, additionally, someone whose death is not reasonably foreseeable will be denied the waiver for final consent. This is very worrying for me. As you may know, I have SMA, Type 2, a hereditary, progressive degenerative disease that causes weakness and wasting of the voluntary muscles. I experience frequent pain from muscle contractures and suffer from falls and repeated broken bones because of severe osteoporosis. I also have severe breathing difficulties that have led to recurring instances of pneumonia. Because my health is so compromised, there are several reasons why I might lose capacity and be denied my right to assisted death if I cannot waive final consent. After fighting for years for my rights, this is a heartbreaking possibility.
Bill C-7 is hope for so many. It must uphold compassion and choice. The pillars of the Carter decision, the human rights of Canadians with incurable, grievous illness and intolerable suffering, matter and should be reflected in this legislation that was ordered to improve on the previous bill that got it wrong. It now must get it right for all of us who were left out.
It is also important for me that I say I write these words as a member of the disability community. I acknowledge that when I speak, I have the privilege of speaking for myself, and my testimony is to share my personal beliefs and understanding. I do not share the same viewpoint that some members hold of Bill C-7, and I respect and uphold the diversities and commonalities within this community.
There are other members of the community that share my view. Some, advocating for voices to be heard, laws to be changed, justice to begin and for the oppression to be not only acknowledged but be held equal in priority. I believe MAID, and the work that is happening and is to be done for and by our community, do not have to be pitted against each other, but instead exist within their own right, reflecting the needs and diversities of our lived experiences. Thank you.
That was the statement that Julia Lamb asked that I share with you. I will now continue with some brief further remarks from the British Columbia Civil Liberties Association.
When Julia asked the British Columbia Civil Liberties Association to represent her in her challenge to the MAID legislation currently in force, we were guided by the principles of the Carter case. I was part of the trial team in that case. It’s worth rereading, I believe, the first paragraph of the Carter decision because it sets out what’s at stake for sick and suffering people and for physicians who provide compassionate health care. That first paragraph reads:
It is a crime in Canada to assist another person in ending her own life. As a result, people who are grievously and irremediably ill cannot seek a physician’s assistance in dying and may be condemned to a life of severe and intolerable suffering. A person facing this prospect has two options: she can take her own life prematurely, often by violent or dangerous means, or she can suffer until she dies from natural causes. The choice is cruel.
This absolute prohibition on assistance in dying is what led Sue Rodriguez and then Gloria Taylor and then Julia to ask, “Whose life is it anyway?” They are expressing their view of the fundamentally personal nature of the decision to hasten dying and the fact that an individual’s choice in dying is critical to autonomy and dignity and also to the value of compassion.
There are many aspects of Bill C-7 that are positive and respect the rights and serve the interests of Canadians. Just recently, Dr. Downie canvassed with you these positive aspects of the proposed legislation in her remarks to you, and the BCCLA endorses her submission.
We also accept and endorse the three areas of grave concern raised by Julia. Shortly, we will be pleased to provide detailed submissions to the Senate on those points.
I am going to focus my remaining remarks on the mental illness exclusion.
As you know, Bill C-7 contains an absolute prohibition against permitting people whose sole underlying condition is mental illness from having the choice of medical assistance in dying. The prohibition applies to all persons suffering from a sole condition of mental illness, regardless of whether they are decisionally capable individuals.
This absolute prohibition does not comply with the Supreme Court of Canada’s Carter decision and is therefore unconstitutional. In addition, the provision unjustifiably infringes section 7, the rights to life, liberty and security of the person; and section 15, the right to equality of the Charter.
It’s important to remember that the Carter decision sets the floor and not the ceiling of what is constitutionally required to respect the rights of Canadians. This means that while Parliament may extend the rights to assisted dying beyond what the court required — for example, by permitting nurse practitioners to provide MAID and permitting final consent waivers — it cannot restrict those rights.
Canada should support human rights in mental health care, but Bill C-7 has the opposite effect. It stigmatizes and abandons those suffering from mental health issues.
In the Carter proceedings, the plaintiffs challenged and the court declared unconstitutional the criminal law’s absolute prohibition against physician-assisted dying. The prohibition was absolute because it did not permit patients the benefit of being individually assessed for eligibility for physician-assisted dying. It was absolute because it did not distinguish between those who were vulnerable and those who were entitled to choose for themselves.
The specific issue of whether those suffering from psychiatric conditions should be excluded from the declaration of invalidity was squarely before the Supreme Court in Carter. The court rejected the government’s argument that there was no reliable way to identify those who are vulnerable and those who are not. The court ultimately concluded — this is at paragraph 116 — that:
. . . it is possible for physicians, with due care and attention to the seriousness of the decision involved, to adequately assess decisional capacity.
The government now asserts that the Carter decision does not apply to those with mental illness, and these assertions rest on a particular interpretation of Carter. It’s an interpretation that has been rejected multiple times by multiple courts.
In one such application in 2016, in the E.F. case, the Attorney General argued that the scope of the Carter decision, and therefore the Carter exemption relief, was limited to those with terminal illnesses and expressly precluded those with psychiatric conditions. It lost that argument before the Court of Queen’s Bench of Alberta and the Alberta Court of Appeal in a unanimous decision. That legal challenge was brought by E.F., a woman who received MAID when a mental disorder was her sole underlying medical condition. The Alberta Court of Appeal unanimously rejected the argument that psychiatric conditions are excluded.
The Attorney General then advanced the same argument that the scope of the declaration in Carter was narrowly limited to a subset of persons before the Ontario Superior Court of Justice in the IJ case. It lost there too, and again it did not appeal. It also lost the argument in Truchon, and again it did not appeal.
Significantly, as it is something that Canada is uniquely able to do, Canada did not refer the issue of the proper scope of Carter to the Supreme Court of Canada for an opinion. Instead, it continues to press its argument in the court of public opinion and before senators and members of Parliament.
Historically, individuals with mental disorders have been assumed to lack capacity and they have endured significant injustice as a result. A blanket restriction on MAID for persons with mental disorders dismisses the magnitude of the suffering that some of these individuals experience.
We support strong and appropriate procedural safeguards that would permit patients with mental health issues to access the law under certain strict and limited circumstances. These safeguards, including practice guidelines and standards for training, should be developed by clinicians and professional and regulatory bodies. In our view, these safeguards are not appropriately regulated through the prohibitions and penal sanctions of the Criminal Code.
In closing, in 2016 you’ll remember well the Senate recognized that the government’s insistence that MAID should only be available to those Canadians whose death was reasonably foreseeable flew in the face of the Carter decision and was unconstitutional. We call on you once again to bravely recognize and uphold the rights and freedoms of all Canadians. Thank you.
The Chair: Thank you very much, Ms. Pastine. Thank you for reading Ms. Lamb’s statement as well. We’ll go to questions now.
[Translation]
Senator Carignan: My question is for the physicians, particularly the ones from Quebec, and it has to do with the idea of excluding mental illness and the clarity of the definition.
Yesterday, we had Dr. Mona Gupta with us, and I asked her the same question. She made it clear that she felt that the concept was imprecise and that it could encompass different groups, that it was not necessarily meant only to exclude people who are receiving psychiatric treatment. I am paraphrasing, but that was the gist of her message. I wanted to hear from you on that.
It also seems that you have already looked into the matter. Indeed, in your conclusion, you say:
The college takes note of this, and we are available to contribute to the process to delve into this issue.
I understand from this that you may have already done some work on this, so I would like to hear from you.
Dr. Robert: Indeed. We are concerned about this issue. We tasked the Association des médecins psychiatres du Québec to produce an opinion. The working group was chaired by Dr. Gupta. This report has been available since the end of October. We will be discussing it with the six other professional orders with which we work, including the Barreau du Québec, the Chambre des notaires du Québec, the Ordre des infirmières et infirmiers du Québec, the Ordre des travailleurs sociaux et des thérapeutes conjugaux et familiaux du Québec and the Ordre des psychologues du Québec.
We will be discussing this on December 9, and the Quebec government has called a forum on assisted dying and mental health for December 14, two and a half weeks from now. This issue is on the agenda. For us, the question is not whether to administer medical assistance in dying to patients, but when and how it will be done.
I believe that the Quebec Minister of Health had announced in February the holding of this forum, which has been delayed due to the pandemic. However, the debate will take place. We have begun to try to identify the criteria and guidelines referred to by Ms. Pastine to frame this practice, to allow people suffering from mental illness to benefit from it, but also to protect those who could benefit from curative treatments. Therefore, a balance is achieved and the process continues.
We understand from reading Bill C-7 that this is an interim measure, since in 2016, it was anticipated that the Criminal Code would have to be revised five years later, in 2021, to include the three topics that had not been included in 2016: mental health, incapable persons and minors who could potentially consent to care.
We understand that we are currently following a process and that the Criminal Code may be amended in the future to allow for the provision of medical assistance in dying to persons suffering from mental disorders. However, I agree with Dr. Gupta, and I believe that when we talk about mental disorders, we are talking about a concept that is not always clinically accurate.
Senator Carignan: I’ll ask my question quickly to our lawyer witness from the British Columbia Civil Liberties Association.
I imagine that you have heard the ministers say, “We don’t have the time,” “We haven’t had enough time to go into it in depth,” “We’ve consulted and there is no consensus.” From the point of view of constitutionality or the reasons given for discrimination, what do you think?
[English]
Ms. Pastine: Our point of view on this is that the Carter decision set out strict requirements for eligibility for MAID. Those are the requirements that a person be an adult, that they be grievously and irremediably ill, that they be suffering intolerably, that they be fully informed, making a voluntary choice and be competent to make that decision.
In our view, the exclusion of mental illness is unconstitutional, and it should not remain in the legislation. Without that provision, there would be strong safeguards in the legislation in the interim period, and we would expect that in short order colleges and regulatory bodies would provide further safeguards on eligibility. But we do think it’s unconstitutional to have the blanket prohibition and that blanket prohibition flies in the face of the Carter decision.
Senator Batters: My question is to Professor Carrie Bourassa, from my alma mater, the University of Saskatchewan. Thank you for being here.
You spoke about the current assisted suicide Bill C-16:
For some communities, it may not even be possible. When we re trying to deal with suicide and multiple loss in communities, is this even a conversation that communities are going to want to have?
Professor Bourassa, you have expressed past concerns in relation to the potentially disproportionate impact that MAID may have on communities already grappling with physical and mental health issues. You indicated that you thought Bill C-14 was rushed. Now, four years later, do we have any better information on the potential impact on vulnerable communities of the expanded access to MAID under Bill C-7?
Dr. Bourassa: Thank you for the question. I frankly don’t think we have any more information. I’m not sure how much engagement there has been. That’s why I asked the question. I don’t know how many First Nations, Inuit and Métis have been engaged or what that engagement looked like. I don’t think that we’re any closer to answering that question.
I think there has to be, frankly, a lot more engagement, many more conversations. I continue to bring up the issue around training. We know right now the kind of urgency that we know from Minister Miller just in terms of systemic racism that’s happening in the health care system, let alone talking about this very sensitive issue in terms of MAID.
So I’m very worried about the idea of training in the midst of what COVID-19 has laid bare in terms of systemic racism that we know is happening. Then you add on what’s happening right now, which I think is a lot of unknown. So I’m very worried and I don’t think we’re any closer to having answers. I really believe that we have to take this very seriously in terms of engaging communities. I’m not trying to minimize the kind of engagement that happened between January 13 and 27, but I think there has to be a wholesale engagement with First Nations, Métis, Inuit, and thinking about the geography and the regions that would have to be engaged appropriately.
Senator Batters: Absolutely. Thank you for bringing that important perspective to our committee. Also, Dr. Bourassa, in the brief you provided to our committee on Bill C-7, you stated this:
To now introduce new controversial legislation without first ensuring that standards are being met, how can individuals and communities reasonably be assured that culturally safe protocols are being utilized in order to ensure informed consent is being obtained of the patient let alone that the family and community understand the process of medically assisted dying.
That’s such an important point on a key issue of informed consent. Professor Bourassa, could you please tell us more about that very aspect?
Dr. Bourassa: I think it’s very important for everybody to understand that when it comes to palliative care in death and dying, it usually isn’t about an individual. It’s usually about family and communities. If you’ve ever been with somebody who is passing, it is usually about having the community helping to make that decision. Often physicians get quite frustrated because they want to have that one person making that decision; that one person having that consent. That is often not the case for communities. It’s often a family decision, and family is also often not just blood family or blood relatives. It becomes very difficult from the perspective of clinicians, but it’s not difficult from the perspective of the community. The context is very different.
Ultimately, when you’re talking about MAID, again, it’s very different. There has been a case with, I think it was a young woman, a young First Nations woman who had cancer and she wanted to have MAID. It became very controversial, to the point where the family took her to the United States. Again, because it wasn’t an individual discussion; it was a family discussion.
There has to be a lot more understanding and a lot more education. This is why I think cultural safety training is so important, as well as understanding different contexts. For First Nations, Métis and Inuit peoples, there are very divergent views around not only MAID, but their own health care and what they expect in terms of end-of-life care and palliative care, death and dying, and the spiritual perspectives that occur at that time.
Senator Batters: Thanks for joining us.
[Translation]
Senator Dalphond: I have two questions, and they are for Dr. Robert. I will try to be brief, and I’ll ask you to be brief as well.
My first question concerns the fact that there are two options when it comes to mental illness. At present, the option chosen by Parliament is to exclude mental illness because the principles of the state of medical science are not advanced enough.
The other option would be not to exclude mental illness, but to ensure that the provision for people with mental illness, the second track, would not be effective for one year. Do you think that in one year’s time, the Collège des médecins du Québec will be able to reach a consensus on the establishment of major principles regarding mental illness and access to medical assistance in dying?
Dr. Robert: In Quebec, that is indeed the schedule we have set for ourselves. Over the next year, the intention is to revise the Quebec legislation and include mental illness and other elements, such as incapable persons. It is certainly something that will develop rapidly over the next few months.
Senator Dalphond: This means that in the future, if we continue to exclude mental illness, we risk sterilizing part of the Quebec legislation.
My second question is about access to psychiatric care. Those who oppose the inclusion of mental illness tell us that 90 days is not long enough because the time to be referred to an expert is much longer than 90 days. So, the only option for someone who is in a bad state, but who might be able to benefit from some care, is to opt for medical assistance in dying because of the lack of available services.
Could you tell us about access to psychiatric care in Quebec and the delays associated with it?
Dr. Robert: I am not completely up to speed on the organization of mental health services. Certainly, there are needs that exceed the supply of services. The college is trying to raise awareness among the authorities who organize accessibility to care.
In my view, it is clear that medical assistance in dying should not be used as a stopgap measure in the absence of appropriate mental health services. This is a view that is consistent with public protection, and we will advocate, first and foremost, for access to psychiatric care before providing an option for patients who would go through medical assistance in dying to receive care. This is certainly not a path that the Collège des médecins du Québec would favour.
Senator Dalphond: Am I to understand from your comments that psychiatrists specializing in the field do not consider that people with a mental illness are automatically incapable of judging their situation and assessing whether medical assistance in dying is a solution that meets their needs, as long as they are experiencing irremediable suffering and meet the other criteria set out in the legislation?
Dr. Robert: I think Quebec psychiatrists have done an excellent job of thinking about the issues of medical assistance in dying and mental health. The training needs of psychiatrists are an important element, and it is with this in mind that we are discussing with them, while taking into account their opinion on this subject.
Senator Dalphond: Am I to understand that you are also working with the Canadian federation that regulates the medical professions so that this information is shared across Canada?
Dr. Robert: Absolutely. Yesterday, before the committee, Fleur-Ange Lefebvre relayed the point of view of the Federation of Medical Regulatory Authorities of Canada, and we are working along those same lines.
Senator Dalphond: Thank you, Dr. Robert.
[English]
Senator Plett: It’s unfortunate that we have as many witnesses on one panel as we do. It doesn’t properly afford us the time to ask everybody questions, and I do have a few. I will focus my question to Dr. Bourassa as well.
Dr. Bourassa, thank you very much for your presentation. It is important to hear this perspective, especially from someone like yourself, who was on the CCA panel, as you have been part of this discussion from the outset. I’m saddened to hear that there has been such a lack of meaningful consultation with the Indigenous community, especially considering that we have heard this government boast repeatedly about the meaningful consultation that led to this bill we have before us today.
Doctor, I have spent a good part of my adult life working in Indigenous communities, and there is a disproportionate number of suicides, especially suicides among children. We’ve heard the justice minister saying that he actually wants to advance this further into mental health being the only criterion and also possibly advancing this to mature minors, which will further exacerbate the issues in Indigenous communities.
We heard Senator McCallum earlier today talk about her anxieties, but she had been told it was anxieties and it was treatable.
If mental illness is going to end up being the only criterion, people with anxiety will ask for assisted suicide. I’m really troubled by that, especially if it goes onto minors further.
Why do you believe the government left such an important and crucial perspective out of this process? What changes would you like to see to this bill that would better reflect the perspectives of Indigenous communities and especially the elders?
Dr. Bourassa: I’m honestly not sure. I guess I was happy to see that there was some engagement. Again, I don’t know how much. I don’t have the answer. Maybe I will hear the answer. I had said in the last two times that I presented in the Senate that it is very difficult for Indigenous communities, particularly for the elders, to really understand about assisted suicide — MAID, I guess — because there are so many suicides in our communities. When I’ve talked to elders, the response is very difficult because many hold the perspectives that we have so many people who are dying in our communities, how can we even have this conversation? How do we even talk about this?
When we had the circle two years ago, there was certainly some movement around, “Yes, we should have this discussion,” but we have not been appropriately engaged. And if we’re going to have this discussion, it has to be done in a very delicate manner. You can’t just pull together three or four elders and expect that to be engagement.
As I said before, so many other issues need to be addressed. Their perspective — and I can’t speak for them, but this is the gist that I receive, the gist of what I hear from them — is that there are so many other issues. People want their youth to be alive and well. They’re trying to find solutions to the suicide crisis, rather than thinking about MAID.
I’m not saying we should not be having the conversation. I think we do need to have the conversation, particularly in light of what you just said around mental health. But I think we have not had a fulsome conversation, and we seem to continue to have the very same conversation over and over again but no action, no implementation.
I’m quite concerned about the lack of cultural safety, about the lack of leadership from the communities and the understanding of spirituality and death and dying. These are things that don’t seem to come to fruition in terms of any action behind it. There’s a lot of talk without real action. It has to happen from the communities, from the leadership and, in my opinion, not from what we would consider to be academia. Even though I’m Indigenous and from a community, we’re considered to be academics. It can’t come from us.
Senator Plett: Thank you very much, doctor. I appreciate that.
Senator Boniface: Good afternoon, everyone. Thank you all for being here. My question is to the B.C. Civil Liberties Association. I’m looking to get perspective here.
We seem to be at an impasse in the information we’ve heard from many witnesses that many believe that an exclusion of having a mental illness as a sole underlying condition will likely be up to the courts to decide as there’s a view that this could be unconstitutional. But others believe that the “not reasonably foreseeable” track created due to Truchon doesn’t hold constitutional muster either as it affects the rights of those with disabilities as a singled-out group.
It seems we’re getting pulled in two different directions on the constitutionality grounds. We’re either going too far or we’re not going far enough. Could you give me some comments on that and perhaps some clarity? Thank you.
Ms. Pastine: Thank you for the question. I’m not sure I see it as being pulled in two different directions. Our argument is that the legislation must pass constitutional muster. Bill C-14 did not. It was challenged in the courts. It was found to be unconstitutional. In our view, Bill C-7 is another piece of legislation that does not pass constitutional muster.
We certainly hope that this honourable body will make the necessary changes to the law so that it upholds the rights and freedoms of all Canadians and doesn’t single out one group for discriminatory treatment — that is, people who are deemed under the law to have a mental disorder.
We would also point out that the current end-of-life practises in Canada allow patients the right to refuse or to discontinue treatment. There’s a very strong value placed on the right of patients to have autonomy to make profound decisions about how much suffering to endure and when enough is enough. For example, a person could decide to be removed from kidney dialysis or not to receive a life-saving treatment. It’s their right to do that.
MAID is no different, although sometimes it’s singled out and it’s stigmatized but, really, it is part and parcel of compassionate health care. The Supreme Court of Canada in its unanimous decision set out what those strong safeguards ought to be and the category of people who are entitled to this compassionate health care. Our request is that the government recognizes and adhere to that very important decision.
Senator Keating: My question is for Ms. Pastine. I apologize because I had some technical difficulties and I didn’t hear all of Senator Boniface’s question.
We have heard over the past few days several witnesses who have told us the blanket exclusion with regard to the mentally ill is unconstitutional. Even those who agree with the exemption have told us it’s unconstitutional, but it’s saved by section 1.
Really, only the federal government continues to say that it’s constitutional. I was wondering with your experience, what would be the reasons, if any, by the federal government to justify that blanket exclusion? Would you be okay if the exclusion remains but with a sunset clause of one year let’s say?
Ms. Pastine: I’ll begin with the question of the sunset clause. The view of the Civil Liberties Association is that it’s far preferable to pass legislation that is constitutional in the first instance, rather than to pass unconstitutional legislation with a sunset clause.
That being said, we understand that many of the experienced professionals and stakeholders who have appeared before you and other groups have expressed concerns about the difficulty of assessing individuals whose sole underlying medical condition is a mental disorder or what might be termed mental illness.
It seems that a sunset clause in that context might be a reasonable comprise to allow groups such as that of Dr. Robert to promulgate effective guidelines and safeguards.
Returning to your first question about the constitutionality of a blanket exclusion, I think what’s really important to remember is that a number of courts have determined that the blanket exclusion of individuals with a psychiatric illness or a mental disability is not constitutional. That’s because there are less impairing ways to meet the goals of the government. The key to ensuring that rights are upheld and there are appropriate safeguards in place is ensuring that patients are competent to make the decision. What the Supreme Court of Canada determined on a very voluminous record, on a record where many experts from around the globe were cross-examined on this very point, is that there is, first of all, no disproportionate impact on vulnerable populations in permissive jurisdictions and that the safeguards are effective and work.
Namely, the capacity assessment, which is part and parcel of our medical system as it currently stands. It’s completely routine in the context of end-of-life care to refer a patient, for example, to a psychiatrist for a capacity assessment, to ensure they are fully informed, not under any coercion or duress and making a free and voluntary choice. This is already part of our medical system, and the experience in Canada in these last five years has shown that it is working very well and it’s also working well in the context of other end-of-life practises that are not legislated by the Criminal Code.
Senator Keating: Thank you so much. That’s refreshing, actually.
Senator Cotter: I had two questions for Ms. Pastine, but Senator Keating asked one of them in relation to the suspension of inclusion of mental illness in the legislation.
My question is slightly different. To some extent, I’m interested in your perspective on how lawyers and the Government of Canada have considered this question of mental illness and its constitutionality. Let me just present the context.
The Truchon decision was a decision from Quebec made 18 months ago or so, and the Government of Canada has not appealed it and has immediately responded in this exercise with respect to Bill C-7 to make some modifications to the existing Criminal Code provisions to respond in part or entirely to it. One’s judgment is open on that.
At the same time, and you referred to this case earlier, the E.F. case from the Alberta Court of Appeal, the unanimous decision of the Alberta Court of Appeal in circumstances in which the basis upon which E.F. was entitled to MAID was she was suffering a psychiatric disorder as the trial court judge and the Court of Appeal found.
I’m interested in your perspective as to why the Government of Canada doesn’t simply respond to that Alberta Court of Appeal decision in the same way that it is responding to Truchon and, in a sense, making mental illness as the sole condition underlying a legitimate constitutional basis for access to medical assistance in dying.
Ms. Pastine: At the Civil Liberties Association, we have the same question. It seems that there’s clear guidance from the courts as to how to structure legislation that upholds the constitutional right to assistance in dying for those who are grievously and irremediably ill.
I also think Canadians should take great confidence in the tremendous work of physicians and nurse practitioners over the last five years in making those rights a reality for their patients and for providing compassionate care in a very sensitive way. Now, colleges and territories across this country have promulgated robust standards for providing this care and ensuring that there are really robust safeguards in place.
I think there’s an opportunity now to do the right thing with this legislation. That is to ensure that those Canadians who are entitled to compassionate assistance in dying, be allowed to receive it after consulting with their families, after receiving guidance from their doctors and making this very personal, very difficult decision.
[Translation]
Senator Dupuis: My first question is for Dr. Robert and my second for Ms. Pastine. Dr. Robert, I remember very well the work done by the Barreau du Québec and the Collège des médecins du Québec, in which you and I participated as part of a social pedagogical exercise for the work of the Special Committee on Dying with Dignity of the National Assembly of Quebec. Do you have the impression that this educational exercise — in other words a very broad consultation of the population — helped to clarify the social acceptability of this extremely difficult question about medical assistance in dying?
Dr. Robert: I completely agree with you. The consultation exercise carried out in Quebec with the commission on the issue of dying with dignity between 2009 and 2012 has certainly contributed to the social debate and has made it possible to better define the reality of medical assistance in dying and to prepare the public for the adoption of this legislation in June 2014. There was also an educational exercise with professionals in general, and health professionals in particular, between June 2014 — when the legislation was adopted — and December 2015. We’re talking about 18 months during which we prepared ourselves to provide good patient care. Indeed, it has certainly been an educational exercise that has not been done in the rest of Canada. I observe these differences between Quebec and the rest of Canada, particularly with my colleagues from other professional orders, who have been somewhat less involved in the regulation and supervision of practices.
The other important element is that the responsibility for managing requests for medical assistance in dying has been assigned not to physicians, but to the health care system as a whole, which becomes responsible for providing these services. So there are expectations, and the acceptability has not only been very strong in Quebec, but much stronger than we originally expected. It is certainly an exercise that has made things easier and that explains why the requests to remove barriers to access to medical assistance in dying, particularly because of the Truchon and Gladu cases, have been so rapid in Quebec.
Senator Dupuis: When you talk about revising the legislation and mental health, the question for you is not whether medical assistance in dying should be allowed, but rather when and how.
Dr. Robert: Yes.
Senator Dupuis: The legislation could state that medical assistance in dying is available, but that if it is necessary to set out specific modalities for mental illness only, a provision would be made, with a specific time frame that would require a definition to be determined.
I have read the report of the Association des médecins psychiatres du Québec. The preamble clearly states that, over the past five to 10 years, a mass of information has been produced about mental illness alone. The documentation exists and research has been done. Would you agree that this issue should instead be the subject of a review of the legislation, if necessary, that nothing fundamental that infringes on people’s rights be specified in Bill C-7 and that, if specific safeguards are needed, a specific time frame be provided for their adoption?
Dr. Robert: Absolutely. This is somewhat similar to the question of Senator Carignan, who said that if we replaced this ban by an effective authorization in a few months, it would certainly be an option.
Senator Dalphond: Senator Dalphond.
Dr. Robert: I am sorry. This would allow us to prepare ourselves and prepare physicians to manage this kind of request.
Senator Dupuis: The nuance I am making is this. I think that people, including those living with a disability, have a constitutional right. If we want to limit the modalities that concern them, for security reasons, and we are able to define them, we can then specify them in the legislation.
Dr. Robert: Absolutely. You are absolutely right.
Senator Boisvenu: I will be very brief. First of all, thank you very much to all the witnesses. The perspectives you bring to us are very interesting.
Dr. Robert, on the subject of palliative care, yesterday or the day before yesterday, Senator Carignan gave us some rather disturbing figures on the funds distributed to the provinces by the federal government for palliative care. These amounts meet only 10% of the needs. Where do Quebec and Canada stand compared to other countries that have legislation comparable to ours on end-of-life care? I am interested in the availability of palliative care for people who do not want to obtain medical assistance in dying, but who prefer to choose palliative care. How does this compare, as a province or as a country, to other countries that have similar legislation?
Dr. Robert: That’s a good question. I am not an epidemiologist, and I do not have any figures to give you on that. Our impression, as regulators, is that there has been some improvement and standardization of practices. In the past, there were a lot of disparities from one region to another in Quebec. The situation has improved over the last five years because of the Act Respecting End-of-Life Care, which is not legislation on medical assistance in dying, but a much broader act on the ability to provide quality end-of-life care, including palliative care, continuous palliative sedation and medical assistance in dying. The legislation is not restrictive.
Since the legislation was passed in June 2014, there has been significant investment and standardization of practices. There is always room for improvement, but, curiously enough, the debate surrounding medical assistance in dying has raised the awareness of government authorities and made them decide to invest in the quality of palliative care.
Senator Boisvenu: Dr. Robert, there have been recent tragic events in Quebec where people have murdered citizens, while families, according to the media, had called for help to obtain psychotherapeutic or psychiatric services, and it was impossible to obtain these services within a year or even two years. If tomorrow Quebec gives access to medical assistance in dying to people suffering from mental illness, while the supply of psychiatric services is insufficient, how will you manage this situation?
Dr. Robert: There is a shift away from palliative care to mental health care.
Senator Boisvenu: One cannot be distinguished from the other. For someone who suffers from psychiatric problems, who asks for help and does not get an answer from the government, the solution is very often suicide or committing an unrecoverable act that results in ending up in a federal penitentiary. We are currently seeing peaks in mental health problems in federal penitentiaries. We are at 50% of women and 40% of men who suffer from mental health problems. We have only shifted the problem by sending people to these penitentiaries.
[English]
The Chair: Senator Boisvenu, you only have 15 seconds left.
[Translation]
Senator Boisvenu: I will let you finish, Dr. Robert.
Dr. Robert: Your question is good. The Collège des médecins du Québec is probably not in the best position to answer it, but the authorities of the Quebec health care system would be.
[English]
The Chair: Thank you to all the panellists. I want to thank you for all the extraordinary work you have done to speak to us today. We learned a lot from you, so thank you very much.
Senators, we will now go on to the next panel.
[Translation]
Senator Dupuis: Madam Chair, could we take a few seconds to thank Julia Lamb for sharing her own experience with us?
The Chair: Yes, of course.
Senator Dupuis: Thank you very much.
[English]
The Chair: Ms. Pastine, could you kindly tell Ms. Lamb that we very much appreciated her statement? She’s in our thoughts. She was courageous in sending her statement, so please thank her for us.
We will go to the next panel. Dr. Ewan Goligher, Assistant Professor of Medicine, University of Toronto and Dr. François Primeau, Clinical Professor, Psychiatry and Neurosciences, Physicians’ Alliance against Euthanasia. We have Dr. Thomas Bouchard, a family physician from the Alberta Committee for Conscience Protection. Dr. Goligher, you have five minutes. Thank you.
Dr. Ewan Goligher, Assistant Professor of Medicine, University of Toronto, as an individual: Thank you, Madam Chair. I thank the honourable senators for the opportunity to speak. I want to begin by introducing myself, so that you have some frame of reference for where I’m coming from. I’m an academic physician, a physician-scientist at the University of Toronto. I practise critical care medicine. I’ve published over 100 peer-reviewed papers and book chapters, including ones on the question of medical ethics and the ethics of euthanasia and conscientious objection. I’m currently involved in COVID-19 research and have raised millions of dollars to support research for COVID-19 this year, and I’m leading a global clinical trial. I’ve dedicated my life to improving outcomes for patients with respiratory failure.
I’m telling you this not because I’m trying to impress you but rather so you can understand that, as an objecting physician, I’m still a serious, thoughtful and altruistic physician. I’m deeply concerned about the welfare of my patients, just like those who are supportive of euthanasia.
I want to begin by expressing my dismay about Bill C-7. The thought that we, as a society, are willing to support assisted suicide for a specific group of patients with physical disabilities is deeply grieving. When I had the opportunity to speak to the House of Commons on this matter, I shared a story about a patient with a severe disability I saw as a medical student who made a profound impression because so much of his suffering had to do with loneliness and isolation, the need for affirmation and value, and the deep hopelessness he felt. Now, as a society, we’re telling patients like him that his life is potentially not worth living, that we would be supportive of his act of suicide.
As the father of a child with physical disabilities, this law would send a message that is exactly contrary to what I try to teach him, which is that he matters, not because of what he can do but because of who he is.
Nevertheless, based on the discussions I’m hearing, unfortunately, there seems to be tremendous political will to push forward with this legislation, so I want to specifically address the question of conscience; namely, whether objecting physicians should be forced to refer patients for euthanasia.
I want to point out that if euthanasia were still illegal, referring would be a criminal act of aiding and abetting an active suicide or homicide. This legal culpability signifies the moral culpable attached to a referral.
Second, euthanasia may no longer be illegal, but that doesn’t settle the question of whether euthanasia is actually ethical. Making something legally permissible is not the same as making it ethically permissible, as indicated by the justices themselves, who said that nothing in their decision in the Carter case should compel anyone to provide euthanasia. I want to give you a simple argument. If euthanasia can reasonably be regarded as unethical, doctors should not be forced to refer patients for euthanasia.
So let’s begin by examining this question: Can euthanasia be reasonably regarded as unethical? I want to give you several reasons. I’m not doing this because I recognize this is not the time or place to adjudicate the ethics of euthanasia, but rather, once you understand that those of us who object, have deeply and sincerely held reasons for our objection.
First of all, euthanasia treats the patient as a means to an end. In order to end their suffering, we are destroying them; we are ending the patient; we are ending the person. This treats them as a means to an end, and people should never be treated as a means to an end. It’s inconsistent with affirming the intrinsic and incalculable worth of persons.
Second, willingness to end the person and treat them as a means to an end undermines any basis for respecting their autonomy. The duty to respect their autonomy derives from the duty to respect persons. When we treat them as a means to an end, as we do with euthanasia, we’re undermining any basis for respecting their preferences. If the person themselves is not sacred, it’s not clear why their autonomy is sacred. But, of course, both are sacred.
Third, it violates the basic purpose of medicine. This is controversial, as there’s no settled consensus on what the purpose of medicine may be. However, those of us who object — and we inherited a tradition that’s objected for hundreds of years and millennia — feel that this violates the basic purpose of medicine, which is restorative rather than destructive. This is what distinguishes palliative care from euthanasia — the restorative versus the destructive.
Fourth, there’s no evidence of medical benefit whatsoever. Claiming that euthanasia is beneficial relies on blind metaphysical assumptions of what it’s like to be dead. And I can assure you that doctors have no idea what it’s like to be dead.
I would point out that all of these arguments are rooted and grounded in respect for the patient and a concern for the patient’s well-being.
So given that euthanasia can reasonably with regarded as unethical, should doctors be forced to refer for euthanasia? To argue “no,” I want to point out simply that a famous physician by the name of Asperger, who originally described Asperger’s syndrome, has had his name removed from the condition. Why? Because historical investigation revealed that he referred his patients for euthanasia. Now, he was referring them for involuntary euthanasia, and that’s not the same as voluntary euthanasia.
That’s beside the point; the point is a referral makes a physician morally culpable. Just as I should not refer for euthanasia, nor should I refer for conversion therapy nor should I refer a patient to a physician who will sell prescription opioids — all of those acts of referral would be unacceptable and ones for which I ought to be liable.
I conclude that physicians should not be forced to refer for euthanasia. I ask you to amend Bill C-7 to achieve what Bill C-14 failed to achieve, which is meaningful conscience protection for Canadian physicians and nurses.
The Chair: Thank you, Dr. Goligher. We will now go to Dr. François Primeau.
[Translation]
Dr François Primeau, Clinical professor, Psychiatry and Neurosciences, Physicians’ Alliance against Euthanasia, as an Individual: Thank you for this invitation. I am a psychiatrist with more than 30 years of experience and I am also a clinical professor in psychiatry at the Université Laval. I was also the first medical specialist to receive a bursary from the FRSQ to study clinical ethics at Louvain and Chicago more than 30 years ago.
Let me jump to page 3 so that I can talk about mental conditions. I find it surprising that the legislation proposes that mental illness is not an illness within the meaning of the act. This lack of a definition, with the possibility of requesting euthanasia for intolerable psychological suffering, clearly opens the door to euthanasia for mental conditions, despite statements to the contrary. Even if one believes that mental conditions are excluded, one must not underestimate medical comorbidities. For example, psychiatric patients have twice as many chronic illnesses, such as hypothyroidism, pulmonary disease, and diabetes, and seven times as many electrolyte disorders. Suicidal thoughts are a symptom of a number of mental conditions. The end goal of therapeutic interventions in psychiatry has always been to restore the patients’ autonomy and freedom, not to suppress that autonomy by eliminating them as people.
It is alleged that there must be no discrimination against psychiatric patients who ask for euthanasia. But the crying need for appropriate resources to which Senator Boisvenu alludes, is, in itself, blatant discrimination. The culmination would be to kill them under the pretext that they have asked for that, in a situation when their suicidal thoughts cannot be adequately and quickly treated because of the delay in obtaining care.
As for cognitive disorders, the anticipated guidelines for cognitive disorders — and I am a geriatric psychiatrist — are difficult to put into operation. In situations where aptitude may fluctuate, those guidelines may even lead to abuse in the advanced stages of dementia, as in the case of a 74-year-old woman in the Netherlands, about whom I could talk later, if senators are interested.
Would physicians proposing or agreeing with euthanasia for individuals suffering from dementia not be validating the lack of meaning of those individuals’ existence? Recent studies on resilience confirm the pivotal role of meaning in everyone’s life. Killing a person’s meaning is killing the person. Devaluing their existence by endorsing their desire to die by euthanasia seems to me to be the height of discrimination, masquerading as the compassion of the moment. Subtle pressure for euthanasia is everywhere in the media, who amplify this systemic ageism by leading elderly people with cognitive disorders to believe that they are a burden to themselves and to society.
In fact, Bill C-7 devalues the psychiatric profession, which exists to save the lives of patients struggling with suicidal thoughts, not to do everything, out of a false sense of empathy, to put those thoughts into action. Requesting euthanasia represents a clinical imperative to start a dialogue between patients in existential distress and physicians, in order to understand what the request means. Moreover, there is no adequate scientific consensus on the irremediable nature of psychiatric disorders.
In 2012, a former socialist physician in France emphasized the point that euthanasia is an act of great violence that might have been contemplated as a progressive idea in the 1970s, when the means of combatting pain were limited and when physicians were often cloaked in their omnipotence, but it has now become an archaic concept. Those words are still true. To give physicians the power of euthanasia over those with mental and cognitive disorders is to make them all-powerful at the expense of the patients’ autonomy.
To claim that euthanasia for suicidal patients prevents suicide, or to say that there is no link between suicide and euthanasia, is pure sophistry. Killing patients quicker by means of euthanasia rather than waiting for the suicide later, has the same result and the same intent: death.
Furthermore, the issue of safeguards is an illusion. Yesterday’s safeguards in the 2016 Act become obstacles that must be done away with in 2020. They are all meant to disappear little by little.
Finally, it seems to me that there is an unbelievable failure in Bill C-7. This is that, unlike other legislation to legalize euthanasia, this bill contains no provision on the obligation to provide, especially in the case of mental illness, all possible therapeutic options before culminating in euthanasia. I will stop there.
[English]
The Chair: Thank you, Dr. Primeau. We’ll now go to Dr. Thomas Bouchard.
Dr. Thomas Bouchard, Family Physician, Alberta Committee for Conscience Protection: Honourable senators, I’m pleased to be with you today to discuss these important issues.
I’m part of a growing group of physicians who come from a variety of backgrounds and walks of life. Our goal is to respect patient values while highlighting the importance of mutual freedoms of patients and physicians. We don’t want to frame disagreements as a rights competitions or even conflicts. Every day, conscientious physicians strive for solutions that lead to mutual respect, even if there are differences between what a physician might recommend based on professional and personal experience, and what a patient might be looking for.
I want to stress that the relationship of trust exists in such a way that the vast majority of situations that patients and physicians might disagree on never arises to the level of conflict. It’s in that light that I want to highlight that conscience protection is not primarily about protecting a physician himself or herself, but about protecting the therapeutic relationship of trust between the two of them.
That trust exists when neither the physician nor [Technical difficulties] fear consequences from their disagreements, but are supported to find new ways of caring. This is a creative process. It’s a team approach, and it requires conscience protection for the physician-patient team.
The patient first requires protection from coercion. A physician can’t coerce a patient because of the power they have, and especially by bringing up things that the patient is not bringing to the table. For example, bringing up MAID unsolicited by the patient. Second, the physician requires protection from coercion. He or she must not be made to do something that in their judgment is harmful to patients. Protecting that physician-patient relationship of trust means that questions of access must not enter into the equation. Many politicians, ethicists and other observers are suggesting that an essential part of the physician-patient relationship is access, when in reality access is something guaranteed by the provincial health care system.
In 2018, Dr. Diane Kelsall, an editor at the Canadian Medical Association Journal, wrote that: “The responsibility to ensure access to MAiD does not rest with an individual physician, but with society.”
She highlighted that the Ontario Ministry of Health established a care coordination service where patients and caregivers can request directly to be connected to a doctor or nurse practitioner who provides MAID, and yet she mentions that, ironically, the provincial college still requires physicians to provide a direct referral. How would it be possible for a physician in a small town to ensure access to MAID if he was not a MAID provider? Every intervener for this bill has agreed that no one should be compelled to provide MAID. Conversely, how could a physician ever be construed as obstructing access to MAID if the provinces have done their job to provide an accessible system that doesn’t require a referral? Policies enforcing effective referral are solving a problem that doesn’t exist, as Dr. Kelsall points out in her editorial.
What I would highlight to you is that the patient-physician encounter has to be one of the safest places in society. What I and many others would call a medical home. For me as a family doctor, sometimes that safe place involves choosing a physician who is like-minded. For that, we need to respect the diversity of views that Canadians hold. We need to feel at home with our physicians, and that means we have different types of homes for this pluralistic Canadian society we live in. I’m not naive to the fact that many of my patients might be strongly in favour of MAID, and in some circumstances we might come to a disagreement. Maybe that means that I’m not a good fit for them as a physician. In rare cases, that may involve a transfer of care to another colleague, but a transfer of care is different from a referral. In my experience with the vast majority of patients of mine, we can agree to disagree on many issues and continue to carry on that relationship of trust. I would say this medical home is a place of creativity, where we work together to improve their lives. For me, every suffering person is an opportunity to find new ways of caring.
John Fletcher, another editor, at that time editor-in-chief of CMAJ when MAID was being legalized, said:
Canadian society may soon allow some doctors to redefine their role, but this should not compel the majority of physicians who are not comfortable with this to abandon their convictions.
Even if the Supreme Court, Bill C-14 and now Bill C-7, have exempted physicians and nurse practitioners from the crime of homicide when ending the lives of their patients, there are many of us who don’t want to be included in the exemption. Our participation, including the form of arranging or referring for this legal service, would be an endorsement or recommendation of falling through with MAID, which we can’t do. Conscience, I would highlight, is not a matter of personal taste or preferences, but a deeply held conviction that prevents us from sharing the will of somebody to pursue certain courses of action. Freedom of conscience is not the freedom to do what I want, but the freedom to do what I must.
I strongly urge you, dear senators, do not abandon us as we try to care creatively for our patients in the best way we know. Don’t abandon us as we try to defend our vulnerable and voiceless patients who are sometimes too afraid to speak up against discrimination. We won’t abandon hope for our patients in a time of need, and I ask you not to forget us in protecting the relationship we have with our patients. Thank you.
The Chair: Thank you very much, Dr. Bouchard.
[Translation]
Senator Carignan: My question is about the obligation to act. When Bill C-14 was passed, Criminal Code section 241.2(9) was also passed. It reads as follows:
For greater certainty, nothing in this section compels an individual to provide or assist in providing medical assistance in dying.
After hearing your presentation today, I gather that you believe that that section is not sufficient to protect you or to protect your freedom of conscience, and you do not wish to be forced into an action with which you disagree?
[English]
Dr. Goligher: Sorry, may I ask who the question was posed to?
[Translation]
Senator Carignan: To all the witnesses.
[English]
Dr. Goligher: Thank you, honourable senator. If I may begin, I appreciate that there was a good-faith effort in Bill C-14 to protect conscience on the part of all health care professionals. Unfortunately, there are two jurisdictions in Canada where physicians and nurse practitioners are required to make an effective referral for euthanasia, and that’s Ontario and Nova Scotia. In Ontario, I have friends and colleagues who have been forced to change practice, in particular, to stop practising palliative care because they are put in a difficult situation where they could face professional discipline for being unwilling to make an effective referral for euthanasia.
I also know of colleagues who have retired early, and I also know that applicants to medical school are being screened with respect to their beliefs about this practice when they’re interviewing for medical school. Despite the good faith effort in Bill C-14, there is a genuine problem with protecting conscience, and it’s important to find a way that we can all live together in a pluralistic society. Those of us who have been involved in efforts to protect conscience, have put forward good faith efforts to propose reasonable approaches that would accommodate the desires of patients while also upholding the freedom of conscience of Canadian physicians and nurses.
Dr. Bouchard: I’ll dovetail into that and say that if Bill C-14, if paragraph 9 of 241.2 was adequate, I don’t think there would be so much confusion among the panels of people you’ve heard regarding referral. Since you’ve heard so many different opinions with regard to referral, I think it’s unclear and needs to be clarified. Further than already clarified.
[Translation]
Senator Carignan: If I still have any time; do I still have any time?
The Chair: No, I am sorry.
[English]
Senator Batters: First of all, to Dr. Goligher — I’m sorry if I didn’t say that right, correct me if I didn’t. I wanted to give you a brief chance to tell us what the amendment is that you proposed because you ran out of time in your opening statement.
Dr. Goligher: Thank you for the opportunity. We’re proposing amended language to the statute that would state clearly that no one is compelled to aid or abet in the provision of assisted suicide, euthanasia or medical aid in dying. We think that the language of aiding and abetting would be appropriate and sufficient according to the legal opinions we’ve received, to ensure that effective referral would not be permitted under the law.
Senator Batters: Thank you. A further question to you: There seems to be in general a consensus among many senators that conscientious objectors have the right to not physically administer a lethal substance to a patient. However, there does seem to be more understanding needed about the importance of a physician not being forced to provide an effective referral for something as morally controversial as assisted suicide.
I do recall when we studied Bill C-14, Dr. Jeff Blackmer, a member of the Canadian Medical Association, when testifying at the very committee that we’re in right now, said that a referral is effectively an endorsement of a procedure and that is morally problematic for many practitioners.
Dr. Goligher, I’m wondering if you agree with that characterization, and can you please elaborate on why practitioners should be protected from having to provide an effective referral? Thank you.
Dr. Goligher: Thank you, Senator Batters. I agree with Dr. Blackmer’s characterization of what a referral is. I can understand that many people who don’t practise medicine aren’t familiar with what it means to refer a patient.
When I refer a patient to another physician, I am responsible — I’m doing so in order to benefit the patient as an act of care to the patient. I’m sending them because they will receive care or expertise that I cannot provide, but I’m doing so in good faith that the patient will be treated with the appropriate respect, treated ethically and with the appropriate expertise.
The patient is putting their faith in me to ensure I’m referring them to someone who will provide appropriate medical care. So there is still that act of faith independence on the part of the patient, and I’m still legally and morally culpable for the referrals I make. I try to emphasize that by pointing out that we all agree that when Asperger referred his patients for something unethical, he did something wrong for which history should hold him accountable.
I suspect none of the honourable senators would look kindly upon me referring a patient for another unethical practice like, as I mentioned, the sale of prescription opioids. It’s a profoundly significant act to make an effective referral and one for which we feel a great deal of responsibility to ensure patients receive the very best care.
Senator Batters: Thank you very much. Madam Chair, if I do have additional time, I’d like to ask an additional question to Dr. Bouchard. If I don’t, I’d ask to get put on the second round.
The Chair: I’ll put you on the list.
Senator Dalphond: The question is for the members of the panel. I think the first and the third one. I have difficulty understanding what you’re proposing. The Criminal Code already provides that nothing in this section compels a doctor to provide or assist in providing medical assistance in dying.
You say that the problem is with the decisions made by the medical college in Ontario and in another province. So it’s a matter of discipline and a matter of ethics and the Criminal Code is not there to govern the ethics of doctors. I fail to understand. You want to address a problem which is a problem with the governance and ethics within the governance body by amending the Criminal Code?
Dr. Goligher: I’ll allow Dr. Bouchard to speak more to that, but I’ll briefly say that clearly if this body and the House saw fit that it was necessary to state that no one should be required or compelled to provide this service, that there was a need to provide for such legislation, and that it must be appropriate within the law to specify some constraints on expectations.
Also to say the justices themselves in the Carter case made clear their decision did not compel anyone to provide the service. It does seem to me — and I’m not a lawyer, so you no doubt know better — there is a place to ensure that the law puts appropriate constraints on what it permits.
Dr. Bouchard: What I would say just to clarify how this has a position in the Criminal Code, mainly because I agree with Dr. Goligher, that paragraph 9 certainly does leave places for the Criminal Code to comment on this. I think it needs to be further clarified because the confusion that exists among all your panellists, including that referral, seems not to be an issue in paragraph 9. So maybe considering how to amend paragraph 9 to include not being compelled to refer because of the reasons that we’ve described why referral is participation in the act but needs clarification further.
I would also say that we don’t consider ourselves as exempt from these actions that are related to homicide and suicide. Even though exemptions did exist for physicians as a whole, for us it still remains a problem to be participants in homicide or suicide. If you take a step back to five or six years ago, before this was legal, aiding and abetting were still a crime. We’re saying that for us, if we don’t see the exemption as applicable to us because we don’t want to be exempt from these problems, then the same things in the Criminal Code apply to that, meaning aiding and abetting as a problem.
Senator Dalphond: So you think that a Jehovah Witness who is a doctor, if he feels his patients will need a treatment that will include a blood transfusion he will not refer the patient to a specialist who could provide the blood transfusion?
Dr. Bouchard: I think that’s not actually relevant to Bill C-7 or Bill C-14 because this is specifically related to MAID. I don’t think there is a federal bill that I’m aware of that is related to the Jehovah Witnesses.
Dr. Goligher: If I may comment more generally. I think the senator raises a good point, which is the freedom of conscience that a physician has, is not unlimited. It’s constrained by what is good for the patient. Our point is that we oppose doing so because we think this is wrong. It’s an inappropriate way to treat the patient. Our objection is grounded in respect for the patient.
I wholeheartedly agree with you that there is no absolute freedom to refuse to do anything for the patient that you don’t want to do. You, as a physician, have a duty to show that your objection is grounded in a concern for the welfare of the patient. We tried to lay that out briefly before you today.
Senator Plett: Thank you, witnesses. We’re having some sound problems again. At least I’m getting a lot of echo. Maybe I’m the only one.
Senator Dalphond: Same for me.
Senator Plett: Dr. Goligher and Dr. Bouchard, there seems to be, in general, consensus among senators, and indeed I think even with the government, that conscientious objectors have the right not to administer a lethal substance to the patient.
However, there seems to be a lack of understanding about the importance of a physician not being forced to provide an effective referral for something as morally controversial as assisted suicide. I think even in my colleague Senator Dalphond’s questions there seemed to be some question as to what it is you were asking for. I think I have a pretty clear understanding because I’m very much of that same ilk.
At the committee study on Bill C-14, Dr. Dawn Davies of the Canadian Pediatric Society stated quite fervently that there has been a shift that has been imposed upon physicians. She stated:
I would agree that in almost every other case there is a duty to refer or a duty to transfer care. I think that at a provincial level they’re collecting lists of physicians willing to perform this procedure and that patients will navigate their own way.
To say there is a duty to refer makes people, that may not be comfortable with this in any way, shape or form feel complicit and part of it. There’s enough of a groundswell that people will be able to navigate themselves.
Many have suggested to the contrary, that there is not that and that enshrining these protections will create a barrier of access for patients.
So to both of you: Do you believe that to be the case? And what can be done to ensure that both patients and physicians are accommodated in the context of conscientious objection?
Dr. Bouchard: In Alberta, I have asked the people who developed the Care Coordination Services if there’s been any evidence of obstruction on the part of physicians who might be opposed to referrals, and there has been none. So I think we can’t rely only on anecdotal evidence of potential obstruction. We have to say that if the province has allowed for direct access, then it’s the province who has resolved that problem. We can’t impose on physicians when the provinces already arranged the system of self-referral for patients.
Dr. Goligher: In Ontario, for example, there is a similar care coordination service that patients can access. There are various routes. In my own hospital, if I were to receive such a request, I would be happy to transfer the patient to a MRP, most responsible physician, who would then oversee the process and make a referral if they deemed it appropriate.
There are many ways by which this can easily be accommodated, and good-faith proposals have been submitted. But I can honestly say that I know of multiple people — in particular, palliative care physicians — who have left practice because they are put in this very difficult position, and unfortunately that does decrease access for patients to good palliative care.
Senator Cotter: I had not intended to join the conversation with respect to Dr. Goligher, but I do have one or two questions in light of what was said.
My suggestion to you, doctors, is that this is not quite as confusing a question as you or others are suggesting. This matter was addressed fully in the Ontario courts, including a distinguished panel of judges in the Ontario Court of Appeal who decided unanimously that this question should be resolved in favour of doctors having the responsibility to provide effective referrals pursuant to the directives of their own College of Physicians and Surgeons.
If you and your colleagues had thought that was so problematic and unclear, you had available to you the option of appealing to the Supreme Court of Canada, and you did not do so. It seems to me that this is a kind of eleventh hour, desperate effort to get the Government of Canada to intervene in circumstances where your own colleagues think that this is a legitimate choice in terms of service delivery.
My second observation is more a question. You were invited to describe the legislation that you would present, and you described that doctors should not be required to aid and abet. I’m shocked, actually, that some lawyer would propose that kind of language. The language of “aid and abet” implicitly declares crime. You suggest that this is to protect your conscience, but embedded in that language is an allegation that others are committing crimes. Aside from my disinclination to be sympathetic to your argument, I’m offended that that would be the way in which you would present this point. Now, I think —
Senator Plett: Maybe Senator Cotter should offer to be a witness in the next panel.
Senator Cotter: I’m just joining your style here, Senator Plett, and I’d invite the witnesses to respond.
Dr. Goligher: As a physician living in Ontario, I’ll respond first. I thank the honourable senator for the observations. Unfortunately, as I said before, making something legally permissible or declaring something to be the law does not make it ethical. We’re here today on the grounds that there’s an ethical problem that we are facing and that the judges in the Ontario court freely admitted that what was required in an effective referral was a serious violation of Charter rights of freedom of religion.
Secondly, the case was not litigated on the grounds of conscience. Moreover, it seemed in the judges’ opinion that effective referral was necessary to ensure access, and I think that was a mistake.
Respectfully, judges reaching a decision doesn’t settle the question. As you know, the original prohibition against euthanasia was upheld by the Supreme Court in the 1990s and subsequently overturned by the Carter decision. So we think that the decision was wrong.
I wasn’t involved in the legal issues. I’m here representing myself and asking that you and the federal government ensure that this version of the bill achieves the benefit that was intended in Bill C-14. Certainly, if you have superior wording about how to achieve that without implying a criminal act on the part of others, I would welcome that. We have very reasonable disagreement. I’ve discussed this with many colleagues who see it differently. We work together in a tolerant and respectful fashion. If there were better wording that achieved that end, we would welcome it.
Dr. Bouchard: I’ll briefly add that I think the enforcement of effective referral, like I said before, is trying to solve a problem that doesn’t exist if access is guaranteed already by a care coordination service.
Senator Keating: I want to endorse Senator Cotter’s comments. You present this as if it was a topic that was still up for discussion. I know you’re not lawyers, but we live in a constitutional democracy, and the Supreme Court of Canada has vested an absolute right in individuals and Canadian citizens of choice of the right to die. Not only that, but there is the decision of the Court of Appeal of Ontario, which also is now the law in this province, and in this country probably — unless it was appealed, which I understand it wasn’t — where the Court of Appeal says the following, and I will quote it for the benefit of everybody:
Physicians who object on moral grounds to providing health care services such as assisted dying, abortion and birth control must offer their patients an “effective referral to another doctor.” And given the importance of family physicians as gatekeepers in the health care system, there is compelling evidence before the court that patients will suffer harm in the absence of effective referral.
Let’s leave aside Senator Dalphond’s comparison with Jehovah’s Witnesses, and I’ll ask you this question: This case wasn’t just about effective referral for assisted dying, was it? It also includes referral for birth control. Do you feel the same way about referral for birth control?
Dr. Goligher: Thank you, senator, for the question.
Senator Campbell: I don’t believe that’s an appropriate question to be asked. I don’t think that’s any of our business.
Senator Plett: I would echo that entirely.
Senator Keating: Well, you’re making a case here —
Senator Plett: And I would ask the witnesses not to answer that question because it’s not relevant to this topic.
The Chair: We’ll go on to the next — did you have any other questions, Senator Keating?
Senator Keating: I will make a statement. The witnesses do not have to answer the question. However, they have brought up their moral obligation — they have suggested to us that we amend the Criminal Code to make it a crime for them to have to refer a patient. So I don’t think that asking them if they feel the same way about either Jehovah’s Witnesses — which they kind of skirt the question — or the statement of the Court of Appeal about referring for birth control is a bad question to answer. But if they don’t want to answer, then we do have our answer. Thank you.
Dr. Goligher: Respectfully, I’m happy to answer the question.
The question is whether the thing for which you are referring is unethical. If you have good reasons to regard it as unethical, you ought not to refer for it and that’s the general principle in medicine.
The argument I’ve given you is with respect to euthanasia. I do not think euthanasia is ethical. I think it’s quite reasonable for me to hold that belief, and that’s why I’m here talking about euthanasia specifically.
Senator Keating: Thank you for your answer.
The Chair: Thank you, Dr. Goligher.
[Translation]
Senator Dupuis: I have a question for Dr. Goligher and then for Dr. Primeau. Dr. Goligher, you spoke about palliative care as restorative, as opposed to medical assistance in dying, which you see as destructive, and therefore as homicide. How can you present palliative care, which by definition is care provided to patients who can no longer receive treatment that will “restore” their previous state, as restorative medicine, as opposed to medical assistance in dying?
[English]
Dr. Goligher: Thank you, Senator Dupuis. That’s a very thoughtful question. I recognize the distinction is not obvious to everyone.
With respect to palliative care, the purpose of drugs and treatments that are administered as part of a palliative care regimen is to maximize the patient’s ability to live as they’re dying, to function and to flourish. That’s really the original dream, vision and philosophy of palliative medicine.
Even at the end of life, the goal of administering opioids to relieve dyspnea or pain, even though they may render the patient relatively more drowsy, is to allow that patient to be as human as medically possible while they go through the dying process. It is to maximize our humanity. It never takes deliberate aim at the person themselves with an intention to end them. That’s the distinction that I make between something that’s restorative and something that’s destructive.
Now, the law itself refers to this as an act of homicide. It says that in the case of medical assistance in dying, it doesn’t count as illegal homicide. I recognize that just because something is homicide, that doesn’t make it wrong. There’s a key distinction, a very meaningful distinction to be made between euthanasia and other forms of medicine.
[Translation]
Senator Dupuis: Thank you, Dr. Goligher. Dr. Primeau, you stated that killing just because someone asks for it goes against your conscience. Currently — with no reference at all to medical assistance in dying — you may have a patient at the end of her life, whose physician makes the decision to provide care that will render her comatose and unaware of her surroundings. He acts without her asking him to. She has asked him for nothing. How do you believe that that physician will reconcile with his conscience? Basically, you are saying that physicians do not want to kill anyone. I understand that very well, but how do you decide on that current issue?
Dr. Primeau: Thank you for the question, senator. That comment applies to psychiatric patients, of whom it is often said that they must have trust, in order to make good decisions. As you know, those patients often have suicidal thoughts or plans. The problem that I was seeing was this: With the delays in current care, how can patients have trust? Let me give you two clinical examples. Last week, a young, 19-year-old woman — I interviewed her myself — said that, after she was hospitalized in 2018, the CLSC told her that they would be back in touch with her for a follow-up in 24 to 48 hours. She received the call two years later. Yesterday, I interviewed another 26-year-old patient with an autism spectrum disorder. She was referred to the CLSC. They told her that someone would get back to her in a year, at the latest.
I made those remarks in the context of psychiatric care. How can we claim that the period of 90 days in Bill C-7 is sufficient, when the delays in obtaining care are much longer? At that point, a proposal for euthanasia would become the first treatment “available” of all the others, because patients cannot obtain care —
Senator Dupuis: Do you agree with what professional medical associations have told us... I would like to ask my question in the second round, please.
[English]
The Chair: Senator Dupuis, I’m really sorry. You have run out of time. I apologize. If you want, I’ll put you on second round.
[Translation]
Senator Carignan: I am going to explore the same issue as Dr. Primeau, about the delays in obtaining care and consultations. The 90-day period begins at the first assessment. If a year or a year and a half is needed to get that assessment, the 90 days makes that time much longer.
Setting your experience in psychiatric care aside, you seem to have a lot of experience in palliative care, and I also saw that you are also a deacon. Does your experience in palliative care come from your work as a deacon or as a psychiatrist?
Dr. Primeau: Most of my experiences is in psychiatry. I am testifying from a professional standpoint. Yes, I am a deacon and that is qualification, a specialty, that I acquired much later in my career. I have 30 years of experience as a psychiatrist and I have been a deacon for only 8 years. My activities as a deacon are not clinical in nature, they are pastoral.
In the clinical context where I work, the difficulty I see is that not enough care is available. Earlier, you alluded to the fact that the time starts at the first assessment. I actually wanted to emphasize the fact that the first assessment is done by a psychiatrist for care recommended by a family doctor. If, for example, I diagnose an autism spectrum disorder or any other condition, a lot of time is needed before community care or monitoring can be obtained. The wait time is very long and beyond what is reasonable. It’s a serious problem. There was even a manifesto on behalf of Quebec psychiatrists on access to mental health care. I hope that the concern shown for psychiatric patients and patients with mental health problems by senators — particularly those on this committee — is real. I find that it’s excluded as an issue, and dealt with last.
In my testimony, I showed the extent to which psychiatric patients often have very significant medical comorbidities. Psychiatric illness itself is an obstacle to seeking medical care and it’s more difficult for those patients to access basic medical care. In that context, in my opinion, the bill does not respond adequately to the problems these patients are experiencing. Euthanasia is suggested to them as an option, but they are having suicidal thoughts and not obtaining the treatment they need. Rational suicides exist, but, in my 30-year career, I could not count the number of rational suicides on my hands because I have too many fingers. In general, suicidal thoughts are rooted in a context of significant mental disorders. How do we deal with that problem when we can’t get care or the wait is too long? Other speakers, like Dr. Bouchard, have alluded to the fact that it is up to provincial health care systems to guarantee access to Canadian legislation. But actually, we have to keep fighting to get care. We hear reports every day about people who have no access to care, or who have committed suicide because they were not able to get the appropriate care in time. A Senate committee is studying Bill C-7, but why is no Senate committee studying a bill to improve access to mental health care? As a psychiatrist, my great disappointment is that there is a lot of attention on this issue of medical assistance in dying — or euthanasia, as I call it — but that, for five or six years, governments have paid much less attention to the problems of access to mental health care.
The Chair: Thank you.
Senator Carignan: I understand. Thank you.
[English]
Senator Batters: Dr. Primeau, thank you for making that very important point about how long it takes to get in to see psychiatrists in Canada. Millions of Canadians deal with that, unfortunately, every day.
Dr. Bouchard, do you have examples to provide us of patients who are fearful of our medical system because of coercion that they’ve experienced to consider MAID or assisted suicide?
Dr. Bouchard: Thank you for the question. One example that comes to mind right off the bat is a patient — she has given me permission to share this because she feels strongly about it — who got a tattoo that says, “Don’t euthanize me.” She knows I’m not in favour of it and I wouldn’t refer for it, yet she still wanted to get this tattoo. This means she feels at risk in our medical system, that if she were to go to a hospital, which I don’t work at that people would potentially target her, for example, this 83-year-old who is very frail and vulnerable.
To see somebody going to that length to try to object to this practice that we have that’s legally available for people who ask for it, but that she feels the need to put a tattoo on her frail 83-year-old skin is a sad state of affairs. I would ask you not to just see us as doctors who want our rights protected but as physicians who have this therapeutic relationship with their patients, and we’re asking you to protect them, too, through us.
The Chair: Thank you, Dr. Bouchard.
Senator Plett: I will be very brief and only make an observation. My question was answered when Senator Batters asked it, but I do want to make a respectful observation.
Many of us were involved in Bill C-14. Bill C-14 was as difficult a bill for us to deal with as Bill C-7 is. It is the most personal legislation that probably any of us will deal with in our time here.
In Bill C-14, those of you who were in the Senate at that time will recall how respectful that debate was, both at committee and in the Senate. When people held differing views than I do or others, we respected those opinions. We did not belittle witnesses because of their views. Many senators hold the same views as these witnesses. I, for one, do.
I would be happy to answer questions about how I feel about euthanasia from conception to end of life, but that isn’t the point. The point is, we ask witnesses to come here and give their time to answer in their capacity. They’re not necessarily lawyers, Senator Cotter. They’re doctors, and they came here to answer in their capacity as doctors and how they feel. We need to respect them. I need to respect those people who do not agree with me, and people who have the same opinion as I do also need to be respected.
The Chair: Senator Cotter, Senator Plett named you, so I feel bound to give you an opportunity to respond to that.
Senator Cotter: It’s kind of you to say. Senator Plett and I will take this up when the committee discusses these questions in the future. I just want to say, I agree with his core sentiment about the need to respect witnesses, but on the debate on the substance, he and I will sort this out at the committee.
[Translation]
Senator Dupuis: Thank you for giving me the floor. I have no further questions. Thank you.
[English]
The Chair: To all three panellists, I want to say that you certainly have had us think a lot about your presentations. You can see how much senators think about these issues and are listening to you. I want you to understand that we are listening to you very carefully, and we respect you having taken the time to be here today. Thank you for coming on very short notice and being well prepared. Thank you for your presence today.
[Translation]
Thank you so much for being here today, I am very grateful to you.
[English]
I want to thank the panellists for coming this afternoon. We know that we put this week together very fast, and the fact that you made yourselves available — not just available but to even make a presentation — at such short notice is very much appreciated by us. The legal and constitutional committee members are very grateful to you, and we look forward to hearing from all of you.
This afternoon in the panel are Vince Calderhead, Lawyer, from Pink Larkin; Dr. Harvey Schipper, Professor of Medicine and Adjunct Professor of Law, University of Toronto; Disability Rights Coalition of Nova Scotia, Claire McNeil, Lawyer from Dalhousie Legal Aid Service.
Panellists, I can only give you five minutes, so please keep your remarks short. Thank you very much. We’ll start with Mr. Calderhead.
Vince Calderhead, Lawyer, Pink Larkin, as an individual: My name is Vince Calderhead. I’m a lawyer and have been for 35-odd years. My background through legal aid, and now in my current practice, is exclusively in the area of social and economic rights, that is to say income support and housing for the poorest of the poor. My clients are typically, not always but typically, people with disabilities. Most recently — and perhaps what brings me to make a presentation to this committee. In the past many years, but intensively for the past three years, myself and others have been involved in a very focused human rights act proceeding in Nova Scotia, the core of which is about the discriminatory lack of supports and services for people with disabilities, that is to say in comparison with people who would qualify for social assistance, generally, non-disabled people. The situation in Nova Scotia is so bad that the matter is now before the Nova Scotia Court of Appeal.
I really wanted to take a moment to give you the highlights of this situation as it exists in Nova Scotia. Supports and services for people with disabilities — and by that I mean the supports and assistance required to live in community, that is to say a place to live, support staff for those who require it and the kinds of supports that would be required to go through one’s day, whether it’s bathing, eating, going to shops or whatever — are in very short supply. Over 1,000 people with disabilities want out of institutions in Nova Scotia, and they want to enjoy the right to community living. Unfortunately, there has been a freeze or cap on the opening of additional community spaces since the mid-1990s. As a result, the current wait list is over 1,600 people, and the wait that they endure goes on for many, many years. As a result, people often give up waiting.
With that kind of background — and the Court of Appeal will be rendering a discrimination ruling fairly soon about that — when I review the provisions of Bill C-7, there are two things that come to mind. First of all, there is a requirement to provide counselling for persons with disabilities in clause 3.1[g]. The idea of the counselling, clearly, is to ensure that people with disabilities are aware or made aware of services that could provide support to them, so that they can then exercise a meaningful choice about whether to end their lives.
Our submission is the fact that our very focused and intensive litigation in the last few years leaves absolutely no doubt at all that, in Nova Scotia, those services simply are not available in a timely way for people who don’t have them and who do need them.
What is the impact there? There are two things. First, the provision counselling sends a message to people with disabilities, but to Canadians more generally, that they are being offered a choice, or that choices are available. The reality is that way too often in Nova Scotia, that kind of suggestion is a complete sham. Those services are not available, certainly not in a timely way.
The second point, more broadly, is that people with disabilities facing and enduring this kind of social context have their real-life choices constrained by the absence of these supports and services. As a result, you will very often hear that people have chosen to end their lives because they can’t take institutionalization any longer, they can’t take the lack of services, they’re living in homeless shelters. It’s really those that ought to be addressed, rather than providing an open door for them to end their lives. It’s the contextual misery that needs to be addressed. There are ways to do that, of course, and Canada used to have a very robust federal-provincial cost-sharing arrangement that required essential public services of reasonable quality, as is contemplated by section 36 of the Constitution. That has now fully fallen off the rails, certainly for people with disabilities.
I think the remedy here, as lawyers say, is really to hit the pause button on this legislation because the governments for the last two decades have fully allowed social services to deteriorate to the point that now opening the door for people with disabilities to end their lives is simply an acceptable, morally, ethically and quite probably constitutionally from an equality rights —
The Chair: Mr. Calderhead, I’m going to have to — I apologize.
Mr. Calderhead: That’s fine.
The Chair: We will now go to Dr. Schipper.
Dr. Harvey Schipper, Professor of Medicine and Adjunct Professor of Law, University of Toronto, as an individual: Thank you very much. I very much appreciate the opportunity to meet with you and to help in any way that I can in these very difficult deliberations. This is not an easy issue to resolve. I’ve been involved in it for quite a long time. In many respects, it’s intractable. Though you will ultimately come to a decision, the opportunity you provided for many of us to have our voices heard is much appreciated.
My interest is both personal and professional. I’m an oncologist. Among other things, I opened the now core discipline of quality of life research worldwide, and it culminated in the creation of the WHO Collaborating Centre for Quality of Life Research in Cancer, in Winnipeg, three decades ago. In addition to running a regional cancer program, I was a global leader in the development of palliative care.
I’ve also found myself at the centre of very sensitive high-profile public policy issues. For example, I was a founding member of the board of directors of Canadian Blood Services in that very difficult time of the tainted blood crisis. More recently, I served on the Council of Canadian Academies’ expert panel on medical assistance in dying.
I have been painted by some advocates, such as Dying With Dignity Canada, as a shrill opponent of assisted dying. As my record clearly shows — and you have parts of it — I am not. My concerns can be summarized in four areas leading to three quite specific recommendations.
The first is that the Government of Canada, in opening this window in the criminal law to allow MAID, still has a very important obligation to oversee that the opening in the window is managed in a way commensurate with the intent of both the court decisions, Carter and other, and the legislation that comes forward.
The second thing is that Bill C-14 explicitly mandated the very careful, detailed examination of our experience before moving forward. That was to happen at about the five-year point, and that time is coming now. It did that because it recognized the complexity of the issue and that we would have to really understand what was going on. Mature minors, advance directives and mental illness as a sole criterion were to be the focus, but not the sole focus.
Third, in Carter, Truchon, Bill C-14 and now Bill C-7, we’re taking a legal approach to what is, in fact, a medical issue. I can cite many issues, including a very tragic one in the United States where legal argument around access, like those being offered now, led to hundreds of women coming to a premature death, or inappropriate marrow transplantation to prevent their breast cancer from coming back. When trials were finally done, over great moral objection, three of the four trials found that those patients were harmed, and the fourth trial was found to be overtly fraudulent. This is what happens when we use the wrong metric. The damage to patients and to medicine of belief overriding evidence is felt to this day. The other thing is the concept of autonomy that the court used. I understand, but it actually comes from a very narrow perspective that’s not shared by many other people in our country.
So the three recommendations are: We need to examine in much greater depth than the initial report that came out in July does. We have to get the first-person experience of what it really means to be in this situation; we have to establish clear standards for the selection, training and active oversight of MAID providers and assessors; and we have to ask the right questions of patients and providers to get that information. I’d be glad to help with that.
Let me leave one concluding thought with you. That is, while no other jurisdiction has done this, we’ve created a new law out of a handful of cases. Now we must learn from that new law by the firsthand, lived, clinical experience of 13,000 and growing Canadians. We have not set up the mechanisms, the processes or the means of doing that properly. We need to understand that before we move forward. Thank you very much for the opportunity to be with you.
The Chair: Thank you, Dr. Schipper.
Claire McNeil, Lawyer, Disability Rights Coalition of Nova Scotia: Thank you very much for inviting me to speak here. I’m following Mr. Calderhead’s comments and I am also from Nova Scotia, so I plan not to repeat his very detailed and eloquent description of what people with disabilities face in Nova Scotia in their efforts to access their necessities of life. I’ve also had the honour of following Dr. Schipper, who obviously has a great deal of expertise and experience in this area and speaks very strongly of the need to have careful monitoring, evaluation and review of the data under the current legislation before even thinking about passing a bill, such as this. His recommendation is very much consistent with that of the group that I’m appearing on behalf of, which is a Disability Rights Coalition of Nova Scotia, a non-governmental organization that’s made up of 32 other provincial organizations, many individuals committed to the equality rights of people with disabilities and the rights as guaranteed under the convention of the rights of persons with disabilities.
I will focus again, like Mr. Calderhead, on one particular aspect of this bill. I’ve provided my speaking notes to members of the committee and I don’t plan to repeat what’s in those notes. Those are available to committee members, I’m assuming, and I’m happy to answer any questions you might have about those notes. But I want to just speak about the notion of safeguards. I think this is an area that Mr. Calderhead has spoken about as well.
The reason that I’m focusing on this is because it’s something that has been a top-of-mind concern for people with disabilities in this province for some time, in the fact that they do not have meaningful access to the kinds of disability support services that are anticipated in this bill. Right away, that caused a great deal of concern for people reading this proposed legislation because to suggest that safeguards are necessary presumably means something more than simply counselling someone about what are non-existent services. It’s important that those services actually exist in fact.
The meaningful access to the disability support services envisaged by Bill C-7 doesn’t exist in Nova Scotia currently. People with disabilities in need — and I should explain that phrase. By that I mean those living in poverty who have no other resources or abilities to meet their needs and find themselves unnecessarily institutionalized in Nova Scotia in homeless shelters, hospitals, jails and other provincially funded facilities. This is well documented. On the other hand, there are many other people who are not so institutionalized who find themselves facing extremely long delays, in some cases decades-long delays, and an indefinite wait list in order to obtain the community-based services and the kind of disability support services envisaged by this bill that will allow them to live in the community. It’s very well documented here in Nova Scotia. Nova Scotia might be an extreme example of this problem, but I don’t think it’s unique. I think it’s wrong to view it as sufficient to provide for counselling for services that exist only on paper.
The notion of autonomy that seems to underlie this bill is a fiction in the absence of true equality and access to the necessities of life. Our position is that before moving forward with this type of legislation to broaden the availability of medical assistance in ending one’s life, that precondition would be to ensure that the proper services are in place for people with disabilities.
Our concern is that the approach taken in this bill in speaking of counselling regarding safeguards without any true examination of whether people with disabilities have meaningful access to those safeguards is rooted in a society designed around the needs of able-bodied people, where the true needs of people with disabilities are ignored or relegated to second-class status. Our recommendation, like Dr. Schipper’s and not unlike Mr. Calderhead’s, is that this bill must be put on hold until there has been a true consultation with first voice individuals and a thorough review of the monitoring information and evaluation of the current legislation before moving forward to broaden this area of the law.
Those are my comments.
The Chair: Thank you very much.
[Translation]
Senator Carignan: My question is for the witnesses from Nova Scotia. Can you tell us about palliative care in Nova Scotia? Do you have an idea of the number of available beds? Are there waiting lists?
When I looked at the data from the Parliamentary Budget Officer, I was not able to specifically identify the assistance that the federal government provides for palliative care. I am not sure whether there is any, and I don’t know the extent of that federal assistance. So I would like to hear from you on the matter, given that you are in the trenches.
[English]
Ms. McNeil: I’m not sure who that question is directed at. Is it to Dr. Schipper?
[Translation]
Senator Carignan: My question goes to the witnesses from Nova Scotia, so to you and to Mr. Calderhead.
[English]
Ms. McNeil: I’ll just lead off and Mr. Calderhead, I’m sure, will have further to add to this. The availability of palliative care I can speak only in the most general terms. Any non-hospital-based services in Nova Scotia are in extremely short supply. So I don’t have any data to provide you on the specifics of your question, except to say that there is a very great divide between what is available in institutions like hospitals and what people can access in the community.
What has resulted as a result of that is that hospital beds are now being filled with people who don’t need to be there, who could be living in a more humane environment in the community, whether palliative or otherwise, who instead have to remain in hospital while they wait for the type of community-based supports and services they need to be made available.
We had a witness at a recent human rights hearing from the Nova Scotia Health Authority, a very senior individual, Dr. Scott Theriault, who said each year when he meets with the provincial government, that is the number one problem facing the health system, the fact that there are not community-based supports and services for patients who need to leave the hospital. There is no medical or legal reason for them to be there, but they are unable to leave because of this lack of community-based services.
I’m sorry that I’m not able to provide more specifics to you in relation to palliative care, but those would be my comments with respect to that issue.
Mr. Calderhead: Maybe I can just add a couple of words to what Ms. McNeil has informed you about. My area is not medical or health care facilities that are available, including palliative care. Mine are more generally on the ongoing supports and services in the form of social assistance available to all Nova Scotians, but particularly those who need them, that is to say people with disabilities.
The overriding point is that these services simply are not available. As a result, the disproportionate impact of who it is who is interested in considering the MAID health care, or death care I should say, is too often people with disabilities who have simply given up because they’re remaining in institutions.
So palliative care really for too many of my clients is not the issue. It’s that their quality of life has been allowed to drop to such an abysmal level, as found by you and human rights treaty bodies, that they are not in a position where their choice is fully open and unconstrained.
[Translation]
Senator Carignan: Thank you. Do I have any more time, Madam Chair?
The Chair: You do not, Senator Carignan, but I will mark you down for the second round.
[English]
Senator Batters: My question is to Dr. Harvey Schipper. We’ve had witnesses suggest that Bill C-7 should be amended with the insertion of a sunset clause on the exclusion of MAID from people with mental illness as a sole underlying condition.
Senator Plett: I think, Senator Batters, you should repeat what you said. I don’t think any witnesses heard anything until now.
Senator Batters: Okay. I’ll go a little closer to the mic if that helps. My question is to Dr. Schipper.
We’ve had witnesses suggest that Bill C-7 should be amended with the insertion of a sunset clause on the exclusion from MAID of people with mental illness as a sole underlying condition. Some have argued that this prohibition should be dropped in as short a time as six months. Even the justice minister, whose job it is to defend this legislation, has stated that he hopes excluding mental illness as a sole underlying condition would be only temporary.
Let’s be clear. What we’re talking about here is this would be a sunset clause to actually sunset the lives of vulnerable Canadians. Parliament already voted in Bill C-14 that more study was needed on the issue of MAID being extended to people with mental illness, minors and for advance requests. Now proponents of expanding assisted suicide are trying to force the government’s hand, regardless of Parliament’s instructions, a total lack of consensus in the mental health community and a backlash from vulnerable Canadians.
Dr. Schipper, do you believe we should consider a sunset clause for the exclusion of the sole condition of mental illness? And if not, why not? Thank you.
Dr. Schipper: I heard about that. No, I couldn’t begin to support it on my last day on earth.
Let me take you inside the Council of Canadian Academies’ deliberations. I was part of the advance directives panel but was very close to what was happening, as we all were, in the mental health panel. Nowhere more so than in that panel was the lack of understanding of means of gathering evidence and decision-making culture between lawyers and doctors more profound. The lawyers would say, we have a case, the case has been adjudicated and the law is clear. And medical professionals would say, that may be true in black-letter law, but in medicine at the bedside, it’s simply not the case.
Let me give you a couple of examples of this kind of thing. Firstly, one of the characteristics of mental health disorders is they’re very much less predictable as to their outcome than a lot of other things, like the cancers I treat.
The second thing is they are very deeply cultural and amenable to all sorts of interventions, drug and otherwise. There are times when all of us can feel very black and can’t see the sun rising in the morning. Let me give you a direct clinical example of one of those. I was asked to see a patient — and I’m not a MAID assessor, I’m not a MAID provider, but a professor of medicine and an oncologist and all that stuff. This was an elderly, very alert woman who had a fall and had what is called a subdural hematoma. It is a very slow bleed over the surface of the head. It doesn’t cause pain but can cause all sorts of deterioration of mental function in an unpredictable way. This woman said, “I want MAID.” Now, MAID wasn’t the law, quite then. “I want MAID. I don’t want to go on.”
She repeated this over several days. To anyone listening from the outside, she seemed rational and reasonable and committed. As it happened, a neurosurgeon came in and said, “I can fix this with a very simple procedure.” They did the procedure. A week or so later, she was fully back to normal. The neurosurgeon said, “You had made a very strong, convincing argument for MAID and maybe, a few months from now, that would have been possible. And you sustained it for a while.” She said, “I wasn’t in my right mind. That subdural changed my thinking. That’s not the way I think.”
That is just one example. To bring in a more permissive intervention, I don’t think anything should be sunset. I don’t think we should make it less accessible or more accessible until we really understand. A sunset clause, frankly, strikes me as politically dishonest.
The Chair: Thank you, Dr. Schipper.
Senator Dalphond: My question is for the three panellists but most especially for Dr. Schipper. What do you say to those who state that the only option left, if we don’t broaden access to MAID, will be to resort to either suicide or to go to Switzerland to one of these clinics that are providing MAID?
Dr. Schipper: Though I’m not a MAID assessor or provider and on grounds of, I suppose, conscience, I will not be one, I do see that there is a place for such. The real issue is addressing the basis of people’s suffering. It may well be that there are circumstances where, despite our best efforts, even with good facilities in place, dealing with the issues that Mr. Calderhead had raised, you can’t relieve that suffering. I know of such cases, and that’s fine. But what I am hearing, frequently, is that that suffering is not being explored. We document it.
If you look in the report that came out in July, in section 6.0, it talks about 78% of the people, for example, having difficulty engaging in normal activities. There is a whole list of things. But nowhere does the report bear down and say, “Okay. So what was done to address that?” And I can cite case after case where that question isn’t asked. In other words, in a way, MAID is a therapeutic option beside morphine, antibiotics and surgery.
Really, this was conceived, even in Carter, as a last resort when other means of relieving the suffering, are addressed. What we aren’t doing is being very aggressive about saying we need to not only identify the suffering; we need to understand it. If we understand it, if we have done our best and if we can’t meet it, I think in a very small proportion of cases this is what we are left with. But you know what? Each one of those cases should be a reminder to us of how we have failed as a caring community. If all we can do to relieve suffering is to end someone’s life, then it says to us, why is that the case? What can we do to make it better?
Senator Dalphond: Sorry to interrupt. I understand and we agree that there will be some limited cases where this is the only option left and that it makes sense for the decision that was made. But for the other cases, you say that it’s a failure to understand the source of the suffering and to address it. Do you think we should ask for more stringent safeguards for those making assessments in order that they address specifically that issue?
Dr. Schipper: For sure. It’s like any other specialty training. You have to understand it and have a skill set. We don’t have that kind of training. I have heard a number of stories of people who don’t understand and who aren’t prepared to or capable of probing that deeply. The biggest safeguard is education.
The Chair: Thank you, Dr. Schipper.
Senator Plett: Welcome, witnesses. My question is for Dr. Schipper. Doctor, we have learned in the last few days that there is absolutely no consensus on the best way forward on this legislation. There is no consensus around our own table here. There is no consensus from the expert witnesses we have heard. I believe, after the testimony this morning from Minister Qualtrough, there is indeed no consensus around the cabinet table.
This is a bill that quite literally deals with life and death, to meet a deadline set by the lower court in Quebec. You have advocated, doctor, for the need to exercise extreme caution when expanding this regime, and I could not agree more wholeheartedly.
In your opinion, Dr. Schipper, how should the government have responded to the Quebec Superior Court’s Truchon ruling? And what can we do at this point to ensure that caution is being appropriately exercised when we go to vote on this bill or possibly to present amendments?
If I have time, I will have a supplementary question. If not, I will go on the second round.
Dr. Schipper: You may have noticed, I’m an adjunct professor of law and I teach biotech law at the law school, but I’m actually a fake lawyer. I’m an engineer and a doctor. So a detailed legal opinion is far beyond my pay grade, although I understand actually, from some of my colleagues, that a single lower court’s opinion is not necessarily binding even on the lower courts. So I won’t go any further than that.
Whether or not the judgment is binding, I think it’s Parliament’s responsibility to stand back and say, we have to do the right thing. We have to understand this before we move ahead. I think simply saying that the court has set a time frame misses the point. Some things take time. This is going to take time. We are going to have to live with this. We are going to have to understand it. Maybe three or four years from now, we’ll have much greater clarity because we’ll have looked at the data. We’ll have understood it better. We will have heard voices, and a path will be clear.
I understand why you are conflicted because it’s a deep moral, legal and, I would argue, medical fog. You can’t just blow the wind to make it clear. We really have to slow down and study it.
Senator Plett: Let me quickly follow up so I can get this in, Dr. Schipper. As you know, before any parliamentary review has taken place, the government has already proposed to remove several safeguards from the existing regime. This I don’t think is a legal opinion. In your view, does enough evidence exist to warrant the easing of safeguards at this stage? And which of these safeguards would you suggest are the most essential to preserve?
Dr. Schipper: Well, I don’t think we have the evidence to remove any safeguards. In fairness, I don’t think we have the evidence to add new ones. We just don’t know. You have got trivial data from 13,000 cases. Certainly taking out the waiting period is really, really foolish. It’s un-biological.
We have addressed putting in a sunset clause. I can’t see any grounds for doing that kind of thing.
Taking away the need for a second voice — I mean, this is actively ending someone’s life. We need to have as much assurance of that safety as we do not only for cardiac procedures, but any other thing where a life is directly on the line. Actively ending someone’s life is a unique thing in Canadian law. I’m all for being very strict until we understand, and that’s not a back door way of saying I don’t want it to happen at all.
Senator Plett: Thank you.
Senator Pate: Thank you to all of the witnesses for all of your work and for joining us today. I was going to ask two questions, but it sounds as though I already know the answer to the first one, which is whether you think the government should be seeking an extension to more fully examine the provisions. They could be seeking an extension from the court on the Truchon decision.
My second question is: Do you think the government should amend the Health Act so that not only is medical assistance in dying available, but, as we have seen during the pandemic, the need for national standards of the sort that Mr. Calderhead has spoken about in the past? And for resourcing, so that there is a requirement for the development of the types of services that are clearly lacking for so many? Not just those who are seeking palliative care, but those living in poverty, those with disabilities, and those requiring other kinds of supports.
The third question is probably more for Mr. Calderhead and Ms. McNeil. Constitutional experts have raised an issue around the Fraser decision and asked us to consider whether the voluntariness of a choice can be used to shield a law like Bill C-7 in light of Fraser, given that the choices are themselves shaped by systemic inequality and the fact that Fraser talked about the need for contextual analysis of the decision and the assessment of choice. So when people are seeking death as a result of suffering, that is not inevitable but rather is the result of systemic policy failures to equally fund, support and ensure access to such resources as palliative care, home care, mental health care, housing, income supports and the like. Should we be reconsidering on that basis as well?
I apologize for putting them all out there. If you don’t have time to answer them all, I would go in second round if possible.
Mr. Calderhead: On the question of extensions and looming deadlines flowing from the lower court’s decision, I think that Canadians and, most importantly, the Parliament of Canada ought to see that as a housekeeping or procedural item that can be dealt with in a couple of ways. One would be to simply to seek an extension to deal with the legislation and seek extension for leave to appeal. Yes, that would be extraordinary, but these are extraordinary circumstances. The third one, and I know that several disability rights groups are promoting this, would be a direct reference to the Supreme Court of Canada where the constitutionality of the removal of the reasonable forseeability clause can be looked at in an authoritative way. That’s my first point. I would submit it’s not that big an item. I don’t think that Canadian legislators should feel that their hands are tied or that we are in a huge rush.
Moving to the second point talking about medical standards in dying, absolutely, without putting into place the social supports that are required to ensure that people with disabilities are able not just to navigate a society designed for people without disabilities, but supports that allow people to have a decent quality of life will be put into place. Clearly that entails a return to a kind of fiscal federalism with the federal and provincial governments coming back to the table, much as you have indicated in the context of the pandemic, where the purse strings, the legislative creativity and the policy creativity can quickly return to the table so that we are in a situation where people have real choices as opposed to facing constrained choices.
This moves me to the third point you raised. I was thinking about Fraser earlier. Fraser is the Supreme Court of Canada decision that came out in October. It was a very good, almost lawyers manual for working with and litigating equality rights. One of the items they deal with is the notion of voluntariness and the notion of people having freely chosen to enter into statutory regimes which are found to be discriminatory. I think that applies here. The idea of constrained choice, and in this context hollow choices being made by people with disabilities, which can be described as decisions without really being choices.
[Translation]
Senator Dupuis: I have two questions for Dr. Schipper. Dr. Schipper, my first question is this: What do you know about the experience Quebec has had with medical assistance in dying for more than 10 years?
[English]
Dr. Schipper: I don’t know it in great detail. Although one day Veronique Hivon and I had a long conversation about it at McGill. In Quebec you are certainly following this more diligently in many respects than other provinces. But we still aren’t clear. In an administrative sense, we understand more maybe from Quebec than any other province about categories and levels of suffering, but from the standpoint of what we have actually done to relieve the suffering I don’t think we are much further ahead. That’s my impression, but I haven’t taken a detailed look at the Quebec record.
[Translation]
Senator Dupuis: My second question is this: When you use the words “actively ending someone’s life” in reference to medical assistance in dying, how do you view the same expression, meaning active participation in the end of a person’s life, when a doctor, quite outside the context of medical assistance in dying, administers a palliative sedative to a patient on his own initiative?
[English]
Dr. Schipper: I’m not sure I entirely understand your question. Could you rephrase it?
[Translation]
Senator Dupuis: Let me try to be clearer. I understand that, in this context of medical assistance in dying, patients can ask physicians to end their suffering. In your judgment, that means an active participation in the end of a person’s life. However, currently, when a physician decides to actively end a patient’s life on his own initiative, using exactly the expression that you used, what is your judgment on that action, if the patient has not requested it?
[English]
Dr. Schipper: If I understand you correctly, I think a physician actively ending someone’s life without their permission is violating more than the law. If we are thinking about palliative sedation when someone is at the end of their days, and to relieve their suffering they are given a cocktail of drugs that relieves their suffering and allows, if you will, nature to take its course, I think that’s a different circumstance. Unless I fundamentally misunderstood your question, the notion of actively ending someone’s life without a patient’s consent is just not on.
[Translation]
Senator Dupuis: I think you understood my question very well Dr. Schipper. My question, as you well understand, actually deals with the fact that when palliative sedation is administered, that is active and direct participation by a physician, on his own initiative, to end someone’s life. There is no substantive difference between the two types of actions: one happens at a patient’s request, the medical assistance in dying, and the other happens because of the physician’s own initiative.
[English]
Dr. Schipper: I don’t think the physician takes the initiative without the consent of the patient. I don’t quite understand where you are coming from. I may be profoundly missing it.
Having been involved in palliative care for a long time, there are patients whose natural course is very clear. They are coming to the end of their days. In short days or weeks there is a lot of suffering, and you do what you can to relieve the suffering.
There is a concept, more commonly called upon within the Catholic faith, which talks about double intent, where you are there to achieve the relief of suffering, not to actively end a life. But in the conduct of that, if you, without intention, end a life, that’s not the same as going in and saying, “Okay, I’m going to end your life now.”
When my palliative care colleagues give palliative sedation, everybody is clear. The patient is clear that this is to comfort the end of your days. You are going to gradually deteriorate, fade away and die. Palliative sedation typically does not extend beyond 10 days. But that’s very different than walking in and saying, “I know you are suffering a great deal. I’m going to give you a big shot of morphine.”
The Chair: Dr. Schipper, I have to cut you off. I apologize. We’ll now go to second round.
Senator Batters: My second question is again for Dr. Schipper.
You alluded to this, I believe, in how you answered the first one. You were a professor of medicine and an adjunct professor of law — and, frankly, you could be a fake lawyer at my firm any time; I think you’re pretty well qualified there — at the University of Toronto. As you stated, you’re a member of the Council of Canadian Academies study on advance requests.
I think you were alluding to this, but I understand that there was a handful of academics working on the CCA studies who produced their own report, which was promoting the expansion of MAID to people with mental illness as the sole underlying condition. This so-called “Halifax group” was led by Dr. Jocelyn Downie and was comprised of a number of witnesses we have already heard from this week, including Dr. Mona Gupta.
Dr. Schipper, you were a member of that expert advisory group who wrote a critique of the Halifax group report. I think that is what you were referring to when you were speaking about lawyers who view it very black letter and medical people who do not.
Could you please give us an analysis of the findings of your report, the expert advisory report, and whether you think the Halifax group’s views are representative of a consensus on that issue?
Dr. Schipper: Well, you ask such simple questions of a fake lawyer. The fundamental difference — and I don’t want to go into the Halifax report, but there is a school of thought — and Jocelyn and I have jousted over time — that says this is a legal, strictly human rights issue based on the Charter, and so on. The report makes that argument. I go back to my original observation.
Let me tell you a story. This was raised at a legal conference at the University of Ottawa a couple of years ago. They said to me, “In view of Carter, how do you interpret Carter by the bedside?” I had my Andy Warhol day where I said, “I don’t. I interpret the Hippocratic oath, and my job is to relieve suffering.”
What you have is two cultural ships passing in the night. The problem with the legal approach is it tends to be black and white. Do you have competence, capacity, or do you not? By the way, there is a study that looks at capacity to consent in the face of intolerable suffering. It says we don’t know how to measure it and there is no expertise. I hope that answers it for you, senator.
Senator Batters: Thank you.
Senator Pate: I would like Dr. Schipper and Ms. McNeil to have an opportunity to answer the questions I asked previously, if that’s okay. Then I won’t waste time asking them again.
The Chair: Do you want to refresh their memories? They have had many questions.
Senator Pate: Whether the government should be asking for an extension; whether we should be looking at an amendment of the health act; and, in light of —
The Chair: Just choose one, Senator Pate, because we have only two minutes.
Senator Pate: I’ll let them choose which one they want to answer.
Ms. McNeil: I would say, very quickly, yes to an extension.
With respect to Fraser, I think this legislation is a good example of formal equality. On its face, it seems to treat everybody the same, but it’s based on able-bodied norms. The fact that we would have a section that suggests people should be counselled about services to alleviate their suffering that do not exist in fact should be a very troubling thing for the Senate.
In terms of amendment to the health act, somehow the federal government, in enacting these amendments to the Criminal Code, has to exert its influence to make sure the provinces are providing the necessities to people who are in these situations, whether it’s a medically advised route to alleviate suffering or another route that’s needed. Many doctors will say, “Our hands are tied. We have gone as far as we can with the medical system.” It’s not a health issue; it’s a failure of government to provide the social supports that are necessary to people with disabilities that creates this problem.
Dr. Schipper: I would certainly defer legislation until we understand what’s going on.
Second, I think we need national standards. I think that’s an obligation of the federal government in opening the window in what is federal criminal law. In fairness, I’m not qualified to comment on Fraser.
Senator Pate: Thank you.
The Chair: When Senator Dupuis asked you a question, I cut you off in the middle. Would you like to finish? Do you remember her question?
Dr. Schipper: Senator Dupuis, did I answer it for you?
[Translation]
Senator Dupuis: Dr. Schipper, let me say that I feel that you understand my question very well. I just wanted to make sure that, basically, there is no substantive difference in the action taken by the physician.
The only difference with medical assistance in dying when compared to the previous situation is that, up to now, the power was entirely in the hands of the physician. Medicine has evolved in such a way that now, we say, in terms of the relationship between a physician and his patient, that the patient’s wishes must be respected. In fact, that is what allows patients to refuse treatment. I just want to make sure that we are on the same wavelength.
[English]
Dr. Schipper: Well, clearly, the patient’s opinions must be taken into account. I would differ with you if you’re suggesting a paternalistic notion where, in the past, the physician walked in and sort of said, “I think your number is up, and I’m going to help you leave this earth.” That’s a great movie story but I don’t think it reflects the vast majority of medicine.
One of the issues, though, with MAID is that there are people who are passionate advocates for MAID, 99.9% with the best of intent but a tiny percentage perhaps without the best of intent. In presenting the case, they actually do exactly what you’re suggesting old-time doctors used to do. We have to be as careful of that as we were in the past.
The Chair: Thank you very much, Dr. Schipper.
Thank you very much, Mr. Calderhead and Ms. McNeil. As you can see, we could spend a lot of time with you today. It has been so interesting. There are so many new questions that we are asking. You certainly got us thinking. Thank you very much for your presence today, and we appreciate it.
Dr. Schipper: It is indeed an immortal topic.
The Chair: We’ll take a few minutes to on board the next panel. Because of the nature of the issues we will discuss in the next panel, it will be from 5:00 to 6:30.
Welcome our panel today. All of you have spent a lot of time to be present today. Thank you for your efforts and thank you for making yourselves available. We truly appreciate it. We are really looking forward to hearing from you.
The first panellist is from British Columbia Aboriginal Network on Disability Society, Neil Belanger, Executive Director. The next panellist is from the Indigenous Physicians Association of Canada, Dr. Cornelia Wieman, President. The third panellist is Canadian Indigenous Nurses Association, Marilee Nowgesic, Executive Director. The last panellist is from the Alberta Health Services, Dr. Alika Lafontaine, Physician and Medical, Aboriginal Health Program, North Zone.
Mr. Belanger, we will start with you. I know you all know this and you have been told a number of times but, after five minutes, I’m forced to cut you off. The floor is yours.
Neil Belanger, Executive Director, British Columbia Aboriginal Network on Disability Society: Honourable senators, thank you for this opportunity to speak to the committee today, and I acknowledge each of the territories we are all participating from.
I’m Neil Belanger, the Executive Director of the British Columbia Aboriginal Network on Disability Society, an Indigenous cross-disability organization that provides a variety of disability programs and services across Canada over the last 29 years.
Our organization stands with all disabled persons’ organizations in Canada in the call for MAID to be limited to end of life.
The Indigenous peoples of Canada experience a higher rate of disabilities than that of the non-Indigenous population, higher rates of suicide, lower health status and life expectancy, higher unemployment and poverty rates, overcrowding in homes and are overrepresented in the justice system. They also experience the loss of culture and spiritual identity and face the continuing intergenerational effects of residential and Indian day schools and the Sixties Scoop.
Despite these conditions, the individuals our organization serve do not describe themselves as “suffering with a disability,” a term we have heard used during these proceedings. The suffering they describe is due to the systems they are forced to exist in.
Gross inequities are experienced by the majority of both Indigenous and non-Indigenous people living with disabilities in Canada and in most aspects of their lives.
As we have witnessed too often, when we add ableism, discrimination and racism toward Indigenous peoples in the systems designed to assist, their existing health and disability conditions are exacerbated. Persons living with disabilities may become more isolated, demoralized, experience a loss of hope and the desire to escape, and in their vulnerable state they can be more susceptible to the option of MAID.
Logically the first response would be to change those systems, increase health and disability resources and services, ensure adequate financial support for Indigenous and non-Indigenous persons living with disabilities and ensure the required time for them to access all supports.
Bill C-7 isn’t about providing adequate supports for persons living with disabilities. With the proposed removal of the end-of-life criteria, it perpetuates the continued negative portrayal of Indigenous and non-Indigenous peoples living with disabilities as having lives not worth living because of that disability. This is dangerous and perpetuates the idea that these people are of less value and therefore worthy of a state-assisted death.
No other charter-protected group is afforded such a choice. We have to ask ourselves, why are Indigenous people living with a disability?
Racism toward Indigenous people permeates through our health care system, and it would be dangerously naive to suggest that MAID would be exempt from this system failure and to suggest that Indigenous persons living with disabilities would be adequately protected without the end-of-life criteria under MAID.
We don’t have to look far to support this statement; the recent and tragic death of Joyce Echaquan, a 37-year-old mother of seven who died while enduring the taunts of health professionals telling her that she was only good for sex and would be better off dead; or the case of Brian Sinclair, a 45-year-old Indigenous man living with disabilities who died in an emergency waiting room after being ignored for 34 hours by health professionals; or the coercion of health professionals toward healthy Indigenous women to have unnecessary tubal ligation surgery performed. There are many stories reported and unreported.
This type of treatment has become so common that Minister Hajdu and Minister Miller recently held a meeting with 400 Indigenous organizations and persons in relation to systemic racism toward Indigenous people in health care, with another scheduled for January. This alone should be enough to warrant that the end-of-life safeguard under MAID must be maintained.
But our organization is only one voice. Where is the voice of the Indigenous peoples of Canada in Bill C-7 and their membership living with disabilities? It wasn’t at the Justice Committee. Our organization asked to present, but we were declined. I am only aware of one meeting held by the government with Indigenous organizations, many of which could not attend.
Additionally, I heard testimony this week from a witness that 86% of Canadians support the changes to Bill C-7. However, when I looked further into the survey that produced these results, Nunavut, with a population that is 89% Indigenous, was not engaged, nor was the Northwest Territories with an Indigenous population of 50% or the Yukon with an Indigenous population of 25%. As well, it would appear that despite the existence of over 630 First Nation communities in Canada, they too were excluded. Before we start offering Indigenous persons living with disabilities the opportunity to die with dignity, we should provide them with dignity of having their voices heard.
The Indigenous peoples of Canada, including those living with disabilities, do have a voice, however, the opportunity to speak to Bill C-7 has not been adequately conveyed or provided. As such, changes outlined in Bill C-7 without their involvement is a direct contrast to the spirit and intent of reconciliation, self-determination, United Nations Declaration on the Rights of Indigenous Peoples and the Convention on the Rights of Persons with Disabilities, all of which this government of Canada has publicly stated it is committed to.
Each senator, member of Parliament, MAID providers, MAID advocate and disability organization must ask themselves if the Government of Canada, or even themselves, have authentically engaged Indigenous leadership, communities and the Indigenous peoples of Canada living with a disability in discussion and recommendations on MAID and Bill C-7.
If the answer is, yes, we ask to show the documentation and input provided from your Indigenous constituents, communities and clients. If the answer is no, then we must eliminate the two-track system being proposed and maintain the reasonably foreseeable, natural death safeguard. To do otherwise will send a clear message to the Indigenous peoples of Canada and their members living with disabilities that their voice and their input into a law that will have a significant impact on their lives is of little matter. Thank you, senators.
The Chair: Thank you.
Dr. Cornelia Wieman, President, Indigenous Physicians Association of Canada: Boozhoo, Aahni. I would like to thank the chair, deputy chairs and members of this standing Senate committee for the invitation to appear before you.
I am originally from Little Grand Rapids First Nation in Manitoba. I am a psychiatrist by training and the current president of the Indigenous Physicians Association of Canada, IPAC. I also work as the Acting Deputy Chief Medical Officer at the First Nations Health Authority in British Columbia.
Here are some of the key messages that IPAC would like to convey regarding medical assistance in dying, MAID, organized around various themes.
Representation. IPAC does not represent the many diverse views of Indigenous people across Canada in this instance regarding MAID. Indigenous people are not a singular, monolithic group. We are comprised of many nations and there are as many thoughts and opinions on MAID as there are individuals.
Self-determination. We respect all Indigenous peoples’ rights to self-determination. It is within their rights and ability for an Indigenous person to make their own informed decisions, in this case about their medical care, and to work with health care providers in a good way including end-of-life care and access to MAID.
Cultural safety and humility. As Indigenous people, our view of life and death is holistic and circular. Our teachings and ceremonies around death are varied, but more inclusive of death compared to mainstream society. In other words, we regard death as part of our life’s journey. It is important to continue to strive to achieve culturally safe health care for all Indigenous people, including end-of-life care. When MAID is requested, the supports required for MAID need to be in place, culturally safe, and concurrent ceremonies respected.
Access to MAID. Access to health services, including MAID, is also related to cultural safety. There is a lack of health services, including palliative care, assisted devices, and home care services for many Indigenous people in their communities. As Indigenous physicians and medical learners, we are concerned about Indigenous people having equal access to MAID, palliative care, and other parts of end-of-life care, especially for those living in rural and remote places in this country. Having equal access to MAID requires respecting the charter rights of Indigenous individuals who are entitled to the same health services as those accessed by those in the general population.
We are also concerned about existing injustices and inequities in the health care system such as the anti-Indigenous racism that is now receiving national, federal and provincial attention. This was brought to the forefront in the recent tragic death of Joyce Echaquan in Quebec.
We strongly advocate for dignity at the end of life, and that includes care free of racism. It is important that the MAID legislation not provide additional barriers for those who would consider an assisted death, while providing strong safeguards to protect those who may feel pressured.
Lastly, clear messaging to build trust. Given the multitudinous past harmful, negative experiences of Indigenous people in the health care system, historically and in contemporary times, it is important to clearly articulate to Indigenous people, communities and nations about what MAID is and what it is not. This includes reinforcing that safeguards are in place in the legislation. We are concerned about how Indigenous people will be informed about MAID should they want to know more about MAID or how to access MAID. There are fears and apprehensions in some communities and nations about MAID based on inaccuracies and misinformation.
Lastly, the Indigenous Physicians Association of Canada’s members are Indigenous people who are diversely rooted in our ancestry and our relationships with the natural world and our homelands, and who have also had the privilege of medical training. It is our collective intent to collaboratively use our skills, abilities and experiences to improve the health and wellness of our nations, communities, families and selves. This includes advocating for our patients who may wish to access medical assistance in dying, so they may complete their circle of life in a self-determining way, according to their individual wishes. Thank you, Chii-meegwetch.
The Chair: Thank you very much, Dr. Wieman. We will go to Ms. Nowgesic. I apologize if I mispronounced your name.
Marilee Nowgesic, Executive Director, Canadian Indigenous Nurses Association: No need to apologize. It’s an Ojibway name; Nowgesic is the anglicized version of it; the Ojibway version means “middle of the day” or “middle of the sky.” I want to thank all Senate members for having us with you here today to present on this bill.
I am the Chief Executive Officer of the Canadian Indigenous Nurses Association. CINA is the longest-standing Indigenous health professional organization in Canada, with over 46 years of experience and expertise as the national voice for First Nations, Inuit, and Métis nurses in the country. There is a long history of our expertise under the Indigenous nursing lens and our Indigenous ways of knowing. When we first came to the table in the discussion regarding MAID, we were very concerned about the impacts, not only to the people at the community level, but also to the leadership, to the scope of practice for the nursing professions at all levels and for the traditional people who are in the healing practice at the community levels — if we are indeed allowing traditional healing to become part of that practice.
At the same time, we know that the bill has other considerations, and we are trying to be fair in light of both of those groups. With that in mind, we know that the bill allows for patients to consent in advance to MAID, but it has currently not been promoted. Not enough information has been provided, about the consent and the requirement for prior informed consent, to be given to Indigenous people and for them to exercise all of the options right up until the final second.
Where are they going to practise? We are concerned, in the Indigenous nursing lens, about the limitations. How do we strip that Indigenous nurse of what it is that he or she may have learned as part of their traditional approach and incorporated it into their professional practice? As my colleague has already said, cultural safety, competence and humility need to be considered here if we are going to be the judges of somebody’s end of life.
In most of the cases, we know this is a palliative care issue. However, where others may have that option, they may have set the date for their death in the foreseeable future. What happens to that MAID provider? What must they do if the patient refuses or resists at the last moment? Simply wait and try again later? What do we do under the bill when the groups of patients who have come forward for this medical process are not being listened to? What do we do when traditional practice needs to be invoked. What do we do for those who are eligible for MAID but are not yet ready to die? What do we do to fill out the paperwork when literacy levels and the comprehension of our people is low, and you know that. What do we do? How do we explain it? And who does the responsibility and the role of that explanation there lies upon? Do we, as Indigenous people, have the right to enter into such ceremonial process given the fact of the hardship that we have to deal with, of ending this person’s life? Who, has the creator said that we can do that? And how will we make sure the mental health and well-being of the health care workers who have to administer this process will be positive in the end? Meegwetch.
The Chair: Thank you very much. We will now go on to Dr. Alika Lafontaine.
Dr. Alika Lafontaine, Physician and Medical Lead, Aboriginal Health Program, North Zone, Alberta Health Services: Thank you. Good evening senators and fellow panellists. I’ll do my best not to repeat some of the things that you’ve probably heard over and over again through these days of testimony. I greet you from the traditional territory of Treaty 8 in northern Alberta. As I prepared my remarks, I’ve thought back to the testimony I gave when MAID was first being considered in 2016 as a past president of the Indigenous Physicians Association of Canada. I’ll add my voice to Dr. Wieman, who is our current leader within that organization. Since that time, I have had the chance to consider MAID from many organizational perspectives, from my point of view, within my own provincial health system, Alberta health services, and through roles at the Royal College of Physicians and Surgeons of Canada, Canadian Medical Association, HealthCareCan and as a member of the advance directives task force of the CCA report commissioned by the federal government.
At that time, I stated that medical assistance in dying has existed in our community since the beginning of colonization, and one of the solutions we require to truly integrate MAID into the workflow of both our traditional and western approaches to health and wellness is to have a strategy for ensuring that medically assisted living exists within our communities. I will make a few pointed comments before turning the time over to questions. The World Health Organization estimates that almost 4 in 10 patients encounter health care harm in general. In Canada these numbers are probably closer to 1 in 20 to 1 in 10. Within Indigenous communities, the harm to Indigenous patients likely rises much higher than the general population. Health care harm is common, and MAID is one of the few treatments where the solution to health and wellness is actually creating harm as defined as creating permanent disability or death.
When I look at MAID in the context of today, one of the things that I urge the honourable senators to consider is that not all disempowerment is the same. Not all patients are disempowered in the same way when it comes to health care harm. This has a direct impact on the operationalization of the changes being suggested in this revision to the legislation. When Indigenous patients consider disempowerment, there are two main parts I would like to focus on. The first is autonomy and the second is consent.
Autonomy is not a cultural norm in many Indigenous health systems. It’s classically broken down into three components: agency, independence and rationality. But agency requires the ability to actually make a choice, and in health care it also requires the person in the position of power to provide a choice. When it comes to MAID, many health care practitioners do not provide the choice for access, and, conversely, many health care providers may only provide the choice of MAID versus other ways to deal with health and wellness within our communities. Agency requires health systems to actually provide the infrastructure for other types of health and wellness. It requires us to integrate our traditional ways of healing, for them to be valued in the same way as western ways of healing and for providers to understand that autonomy is not the cultural norm in many of our health systems.
Consent as described in the suggested revisions of the law is not the kind of consent that physicians commonly discuss with patients. As a member of the task force on advance directives over many months, I took a long time to realize why I had a high level of discomfort when it came to the way that advance directives were being framed. I realized within a few months that it really came down to a difference between the legal definition of consent and the type of living consent that physicians classically provide to patients. Living consent requires renewal of consent with each health care encounter leading up to the moment when the actual procedure intervention is provided. It requires the patient to be able to revisit and rethink, either for themselves or through a representative, the opportunities and also the disadvantages of proceeding with a certain type of treatment.
With the advance directives in the frame of the new legislation, a legalistic definition is provided, where once a patient signs on a piece of paper and provides a to-do list within a variety of check boxes, that consent then becomes permanent and unchangeable going into the future. This is not the type of consent that’s classically provided by physicians, nurses and other providers when it comes to health care.
As I mentioned at the beginning, not all disempowerment is the same. For patients who continue to push for expansion of MAID, their access to services is the same lack of access that all Canadians have. For those who lack autonomy and empowerment when it comes to consent, Indigenous patients, those who suffer from disabilities, as well as many other vulnerable populations as you have likely heard over the last few days, I would suggest to you not to judge the impacts of these revisions from the point of view of these relatively more empowered patients. You can’t understand these perspectives unless you ask.
I thank you for the opportunity to participate in the questioning today and encourage you to continue to receive opinions from disempowered groups that you may not have considered.
The Chair: Thank you for your presentations. We really appreciate them. I want you to know that this is just the beginning. If there is any other information that you can provide to us, please forward it to the clerk.
Senator Batters: I want to start by saying thank you to all of the witnesses. This is a very important viewpoint which we hadn’t heard too much about yet. I’m pleased you are here. I know that, unfortunately, the House of Commons committee did not have many meetings. We have tried to rectify that and make sure that we had a substantial number of witnesses. It filled some definite gaps that the House of Commons committee had, so thank you for being here.
Mr. Belanger, my first question for you is around consultation. From your perspective as the Executive Director of the British Columbia Aboriginal Network on Disability Society, are you aware of the consultation process that took place with Indigenous communities on Bill C-7, and do you feel that the consultation process with your communities has been adequate?
Mr. Belanger: Thank you for the question, senator. I believe I am familiar. As part of the process, I was at two meetings. One was in Vancouver, which was an invitation-only meeting. The other meeting — I was in Ottawa with both my colleagues here — was an Indigenous-focused meeting. At that meeting, there was quite a lengthy list of people and organizations who were invited, but in all reality, very limited participation [Technical difficulties] organizations were not able to attend.
I would be confident in saying that I don’t believe the Government of Canada has reached out to the [Technical difficulties] peoples, to Métis or to First Nations in a substantive way on MAID or Bill C-14 or Bill C-7. In particular, Indigenous persons living with a disability. [Technical difficulties] and thousands of clients have ever been engaged from the community level or by government. I don’t believe there has been any engagement in a proper way.
Senator Batters: Thank you. Mr. Belanger, you co-wrote an article in The Hill Times about the singling out of people with disabilities with Bill C-7. You note that people with disabilities are already turning to assisted dying, not because of their disability itself but because of what you stated as “suffering from unconscionable social and economic deprivation as a result of their disability.”
I find this very disturbing, and I wonder if you could please elaborate on the social and economic consequences of having a disability in Canada and whether you believe that we are offering Canadians with disabilities an honest and fair choice between life and death.
Mr. Belanger: Thank you, senator. Certainly persons with disabilities predominantly in Canada or, for instance, that we serve live in poverty. They are subjected to racism and discrimination because of their ancestry and because of their disability, limited opportunity for employment. Many live in rural locations with limited access to transportation. Housing is a problem. It’s one thing after another, a continuous thing.
The supports that provinces provide to persons with disabilities across Canada is woefully low. They are expected to live on approximately $1,000 a month to meet all their needs. Pull themselves up by their bootstraps we hear people say. Many of the people we serve, don’t have boots. We spend our time looking for the supports to give them a better life, with their consent and by their direction, but it’s a difficult thing. We shouldn’t be offering them, because they’re living with a disability, the option of dying because we haven’t provided them with options in life. It’s unfathomable.
Senator Batters: Absolutely, to say nothing of mental illness and addictions and all of those types of issues.
Also in your article in The Hill Times you mentioned several other disadvantaged groups in society who undergo grievous suffering, and you say:
But in the case of persons with disabilities, the government suggests we should look into their eyes and say, “You’re right, people like you do have a good reason to die and we are going to help you make it happen.”
What message do you believe this generally sends to the disability community?
Mr. Belanger: I believe it sends the message that if you live with a disability, that’s a reason you might want to consider taking your own life or asking for medical assistance in dying, because your life does not have the same value as someone who does not —. Realistically, what kind of life would you possibly have? How could you be successful? How could you enjoy life? How could you be part of your community? Here is an option for you to take. We don’t offer that to other Charter protection groups so why for persons living on disability — .
They contribute across Canada on a daily basis. But it’s the mindset that my life will end if I ever — live with a disability. I wouldn’t want to live if I have a disability. It’s a mindset we have to change. It’s a problem.
Senator Batters: Thank you.
Senator Dalphond: Thank you to our witnesses. I thought it was very interesting.
My question is for Dr. Wieman. I read your short brief with great interest. Would you please elaborate more on how MAID fits within the concept of dignity and the holistic view of life for First Nations?
Dr. Wieman: Thank you, senator, for that question. I should preface my remarks by saying that I am a Western-trained physician, and I do not, in any way, identify myself as a traditional healer or someone who leads ceremonies. I do participate in ceremonies from time to time, but I do not lead them myself.
What I have heard over my many years of experience — I practised for over 20 years clinically before changing to public health, including 8 years on an on-reserve community — is that in many cases — and it’s hard not to generalize, but also, I don’t want to leave out people’s specific views because there is a diversity of views across the country among Indigenous people. So it’s that careful balance between being pan-Indigenous in my answer and trying to respect the diversity at the same time.
I do know that there is, for example, a very holistic encompassing view of one’s life and one’s death. For example, if we look at the medicine wheel, it is a circle. For example, we come into life through the eastern door, and we exit life through our death through the western door. In other Indigenous cultures around the world there are many similar types of analogies — the longhouses of the Maori in New Zealand, for example.
What I was trying to get at with that comment was that we have to always keep in mind the diversity of Indigenous people when considering these issues. Some people are very traditionally oriented and actively speak their language and participate in their ceremonies, but other people are not necessarily as engaged, for a variety of reasons.
I was trying to say, death is more a part of our thinking. It is not necessarily as sterile as it may be considered in other Western societies or cultures. For example, when I worked on the reserve, people actually had their deceased relatives in their homes awaiting the funeral. There wasn’t always this tradition of taking the person to a funeral home, with set visiting hours and the fake grass and all of that kind of stuff. It’s much more organic and inclusive.
We have to take that into account when we’re talking about trying to give people access to something such as MAID that is part of that life cycle, in this case focused on end of life and death.
Senator Dalphond: Would you say that, so far, there is a very limited access to MAID for those who might be interested to receive it?
Dr. Wieman: This is the only answer I can get, and I think it’s important. I think the reason I identified at the beginning of my statement was that I also work in British Columbia in the First Nations Health Authority. Sometimes I wear both hats at the same time. It’s kind of difficult to separate out those roles. I have heard in the B.C. context that access to MAID for all British Columbians, particularly for those who live in rural and remote areas, is limited though not necessarily impossible.
I can also share anecdotally that some First Nations people have accessed MAID. I don’t have a definitive number to give you but I would say that access to health care overall and access to specialized services like MAID are still limited for many people who live in rural and remote areas.
The Chair: Thank you, Senator Dalphond and Dr. Wieman.
Senator Pate: Thank you to all of you. Thank you especially, Mr. Belanger, for the masks that you provided to all of us for this month in recognition of Indigenous peoples with disabilities.
I want to ask this of all of you, those of you who are comfortable answering. I’m sitting in for Senator Boyer today. She wanted to know whether, in fact, any of you have run into challenges providing services on reserve versus off reserve. I think there’s been a bit of an answer to that but if you could elaborate.
Also, some Indigenous communities have expressed concerns at the possibility that the expansion of MAID could be countercultural to some Indigenous cultures and traditions. Taking into account Indigenous people’s right to self-determination, how can Bill C-7 be amended or how can we ensure that Indigenous people who are eligible for MAID — as well as those who don’t have access to programs and services in the community and are only given access to MAID — are assisted in a way that is culturally safe?
And a question from me: You all know the over-representation of Indigenous peoples in prison. Because of the issue of the lack of choice in terms of other treatment options for prisoners, the Correctional Investigator has called for a moratorium on the ability of prisoners to access medical assistance in dying because all the recommendations say they should be provided with access to palliative care in the community before the option for MAID is provided. Yet many, many prisoners are requesting MAID because they’re not getting access to that kind of compassionate release option. If anyone wants to comment on that as well, it would be appreciated. Thank you.
Dr. Lafontaine: Thank you, senator, for your questions. I’ll try to answer each one quickly to give the other witnesses a chance to respond.
As far as access to health care, if you don’t exist within Indigenous health systems, it’s kind of hard to wrap your head around just how little access there actually is. Within urban centres and in the North Zone of Alberta, we have 15 to 20% of our population at the hospital where I work coming from Indigenous communities in northern Alberta and in northern B.C. Patients who come into the hospital often receive fewer options when it comes to choices for their care. They often have different interactions where they sometimes get the impression — and this has been told to me by Indigenous patients — that their providers don’t want them to have certain options, so they don’t pursue it out of fear of offending the provider, even though they do know options are out there.
As you move into the periphery, smaller communities and fly-in communities in particular, there actually is no service unless a physician chooses to visit. I’ll underline by saying, “chooses to visit.” It’s not up to the patient. It is not up to the community. It is not even up to the health system; it’s whether or not someone will volunteer to go there.
The idea is that we have some sort of underlying structure on which to overlay any type of access within certain Indigenous communities. There actually is no access at different times during the month. In some of our fly-in communities in northern Alberta, they are locum services for maybe a week. That means for five days, you have access to a provider who can send you for testing, investigation, do evaluations or maybe refer you to a specialist to whom you can’t refer yourself to. That’s the answer to question one.
To question two, introducing MAID to the community and cultural and social considerations, in the context of not having a well-established baseline for health systems, going from having no health systems to having a greater access within urban communities. You can imagine that introducing something that is supposed to be provided to all Canadians would be received in different ways. If the only service that is required by the federal government to be provided within communities across Canada is medical assistance in dying — and I’ll go as far as to say it probably is the only service that has been approached this way — in a community that has no services, the reception is going to be very different than in an urban community with other services available.
That communicates very specific things to the community because of the nature of MAID — that the treatment is harm — as I mentioned at the very beginning, has impacts on the ongoing trust and engagement of communities with the health system.
The third comment about treatment options for prisoners is a timely one. We know that Indigenous patients in particular suffer from a type of racism that leads to worsened health outcomes. That’s a byproduct of the choices provided to patients, the cultural norms on what’s tolerated for patients, and then the choices of providers who actually control resources in the system when it comes to making choices for patients.
We know from the tubal sterilization inquest that has been led by Senator Boyer and other champions within the Senate, that this is a reality. This is not a remote nor a historical reality. This is a lived reality today.
I remember in residency, 10, 12 years ago, sitting in ORs providing anesthetics for patients who would begin crying once the surgeon told them their tubes were being tied.
I always assumed, as an Indigenous anaesthesiologist, that maybe my spinal anesthetic was insufficient or that the patient was just doing a little bit of grieving. It would never have crossed my mind that they had never been engaged in a conversation where someone provided them the space to make a decision about their health care.
The Chair: Thank you very much, Dr. Lafontaine.
Senator Boniface: Thank you all for being here. This is such an important discussion.
I would like to direct my questions to the nursing association. It’s obvious that there are accessibility issues to MAID in many rural and Indigenous communities. I come from a rural area, and I see it firsthand. A lack of access to medical specializations is one of the obvious issues. The House of Commons adopted an amendment at committee this week that essentially allows for a case where if neither medical nor a nurse practitioner has a specialization in the area of a person’s suffering, that they be able to consult with someone who does. To that extent, would this amendment help to address the issue of access for rural and Indigenous communities, keeping in mind the jurisdictional divisions between the various governments?
Ms. Nowgesic: Thank you for the question. I think the response is much more complicated than the time would allow us to respond to it here efficiently. I think it signals a major legal challenge with some untold ramifications. Dr. Lafontaine has already pointed that out because the disparaging level of access to adequate health services — not even specialized, just adequate — is something that is of great concern to us. Under our Indigenous nursing lens we are saying that more comprehensive consultation needs to be done in order to assess the efficacies or the groups that could be involved in being just eligible for MAID. That is compounded by the eligibility for concurrent services under non-insured health or the eligibility under current services for palliative care to end of life.
At the same time, we are very concerned about and want to look at the meaningful protection of the conscience rights of health care workers. Are they going to be punished in their workplace if they do not because they’re the only nurse or nurse practitioner in that community that could do this? We’re concerned about the stewardship of the medication coming to the community. There are so many things that come into play, and without proper consultations with health care workers or health allies we are once again failing the system, which is not ready. We can say that. We are failing the health care workers. Thank you.
Senator Boniface: Thank you very much for your response. It doesn’t surprise me, but I thought it was important to be heard.
Senator Plett: Welcome to all the witnesses. A special welcome to Dr. Wieman, being from little Grand Rapids, I know it well. I think I’ve been in every Indigenous community and village in Manitoba many times, so a special welcome to you.
My question is for all of you or any one of you. We’ve heard from Mr. Belanger that he believes the government should have appealed this decision when they had the chance, but now we have this bill before us. Senator Pate asked this question and I don’t think she got an answer because Dr. Lafontaine had a number of answers there.
What do you believe is the right thing to do? Do you think this bill is beyond reproach or are there amendments we could make that would make the bill more palatable to the disability community?
Mr. Belanger, if you want to start and, please, I would like a few others to jump in. That will be my only question.
Mr. Belanger: Thank you, senator. Certainly, I think the Government of Canada should have appealed the court decision. Right now, as some of my colleagues have said, we need further consultation. We need further engagement with the Indigenous communities and Indigenous persons with disabilities. Until that happens, we need to get rid of track two and stick to end-of-life criteria. That will serve persons with disabilities best. As we heard in testimony before, the cut-off date is December 18 and if the legislation isn’t changed by then, MAID will still be in effect, it will [Technical difficulties]. It was an opportunity to have the government properly engage Indigenous peoples living with disabilities in Indigenous communities and [Technical difficulties]. Because we don’t have that knowledge. We don’t have their input and that’s what we need. Absolutely, that’s where I stand.
Senator Plett: Thank you. Dr. Wieman, I would like your comments and, please, the others as well if we have time.
Dr. Wieman: Thank you, Senator Plett. What I would echo and add to what Mr. Belanger has said is that one of the real challenges we’re facing is the diversity of Indigenous people that we’re talking about. That is really a difficulty. I mean, it’s a richness of our cultures, but on the one hand, trying to find consensus among different groups and different groups within the Indigenous population is really challenging. What I do hear is that people feel that there has been inadequate consultation on this particular topic that could, perhaps, be remedied by speaking to more people and more groups. I think that’s one thing.
There is a lot of work that we need to do as Indigenous health organizations, depending on the outcome of working with our partners to ensure, as I said in my opening statement, that the communication that comes out is clear and accurate, because I am aware that there are a lot of preconceived notions and misperceptions out there. Thanks.
Senator Plett: Let me ask each of you a question for a one-word answer, so it won’t take long. I want a one-word answer: Yes, no, or maybe.
Do you think we should hit pause on this bill until more consultation has been done? Should we hit pause?
Mr. Belanger: Yes.
Senator Plett: Dr. Wieman?
Dr. Wieman: Maybe.
Senator Plett: Dr. Lafontaine?
Dr. Lafontaine: Yes.
Senator Plett: I’m not going to try to pronounce the last name.
Ms. Nowgesic: Not a problem, it’s Nowgesic, and I say yes.
Senator Plett: Thank you very much. I appreciate your testimony.
Senator Keating: Thank you so much for being here for this really critical conversation that should have happened a long time ago.
I am somewhat distraught by the fact that MAID has been in place for some time and that there are absolutely no provisions even mentioning the application of cultural or sensitive standards for the holistic application of MAID in Indigenous communities. This might seem like a menial question at this point considering all of the other voids in access, et cetera, and the needs of Indigenous disabled people.
I’ll ask this question to Dr. Lafontaine. Do you think that at this juncture, if the bill is not paused, is there anything you think that could be added to this bill to — I hate to use the word “fix” because that’s not going to do it, I know — but to attempt to fix the lack of inclusion?
Dr. Lafontaine: Thanks for that question. This has been alluded to by some of the other witnesses. We often view death within Indigenous culture and philosophy as just a part of life. I think MAID heretofore has been structured as an end point instead of an option. I sympathize and empathize much more based on my experience on the task force on the very tough decisions that patients have to make within the context of suffering, but that suffering can’t only have the end point of MAID. The way that MAID is structured and shared with Indigenous communities, that is the perception that I feel many of the people who I have talked to — and it’s not a perfect consultation — often feel that way.
To improve the structure of the legislation, there are some specific things which I would recommend. The first one is that within health care we often have surrogate decision makers. I’m still confused why this hasn’t been considered in a draft form within MAID, within our own communities having surrogate decision makers who are cultural or traditional leaders within the community would make a lot of sense to me. That way, it’s more of a partnership. The Choose Life Initiative that was brought forward has caused big impacts on suicide rates within children and youth across the country. That was based on co-creation.
The second thing I recommend is thinking through what component you should have with MAID to ensure it really is a tool or an option versus the only choice. And that may have to do with a patient bill of rights like they have in New Zealand or some other type of baseline.
So that is where I would start, and thank you for the question.
Senator Keating: Thank you so much.
[Translation]
Senator Dupuis: My first question goes to Dr. Wieman. First, my thanks to all the witnesses who have come here today and are helping us to understand this part of our reality. You mentioned a number of Indigenous nations, each with its voice and each responsible for its position. With medical assistance in dying, we have the bill that concerns us, to amend the Criminal Code, but services are administered by the provinces. To what extent should.... We need to create a space in which to hear First Nations voices in all the diversity of each nation’s voices. Have you given any thought to the forum where that space could be located — let me call it a discussion space — that would allow each Indigenous nation not only to state its position, but also to communicate, to discuss and negotiate that position with the government so that services can be established? In Quebec, for example, a number of Indigenous nations live in various regions. The Innu nation has a number of communities in different regions, where services are not necessarily provided in the same way. Have you been able to give any thought to that question? You are actually raising a very important issue.
[English]
Dr. Wieman: Thank you for the question, Senator Dupuis. The answer is very complicated, of course, and multifaceted. It is an impossible task in some way to gauge the opinions of so many diverse nations across the country. But I think what I would say in answer to your question are two quick things. One is that I think in order to have an engagement or that kind of discussion around MAID, related to what I said in my opening statement, Indigenous nations themselves need to have a very clear idea and understanding of what MAID is, what the legislation is, what the safeguards are. And I stress the safeguards because I think when people initially hear the term that they may, for example, jump to conclusions about it, and I have seen a couple of media articles to that effect. So that’s one thing. There needs to be very clear communications around this prior to engagement.
Second, I think it’s not a quick answer, but for example, there are different regional health authorities. The First Nations Health Authority in British Columbia where I work is the first provincial First Nations health authority of its kind in Canada. So we spend a lot of effort, well worth it, to engage with First Nations people in our five regions and sub-regions, and we have very frequent caucuses and consultations with them so that we have, in some ways, because we are a provincial health authority, that advantage, that we have that constant input and opinions that maybe some other provinces or territories don’t necessarily have. Again, it’s not a quick fix but it is very important to listen to the concerns of First Nations, Métis, and Inuit people. I can’t speak on behalf of all of those people.
The last thing I would add is to explain why I said “maybe” to the question, and it wasn’t meant to be humorous. It was meant from a perspective of a physician representing other Indigenous physicians. Even though the notice for this hearing was relatively short, we had a discussion among our board last evening. Many Indigenous physicians work on the front lines. We see the suffering of certain people. Granted, we need to provide more health services and supports to people who are, for example, in the midst of a terminal illness, services that they don’t necessarily have equitable access to. But on the other hand, for people who can make that informed decision for themselves, with the existing safeguards in place, people have had access to MAID; some Indigenous people have done that. I think it’s hard not to try to listen to that perspective of someone in that situation and suffering. I have had a very close friend of mine who died of cancer, and sitting with her just for one minute in severe chronic pain to me seemed intolerable, but I wasn’t the person with that pain. So we have to also bear in mind that we can talk about these issues in a professional academic way but we must also keep in mind that right now at this very instant there are people who are suffering intolerably. That’s why I said, “maybe.”
[Translation]
Senator Dupuis: Thank you. I have a question for the representative from the nurses association —
The Chair: Senator Dupuis, you have no more time. I am sorry.
[English]
Senator Cotter: Thanks to each of the four of you for outstanding and insightful presentations. They were very much appreciated. I have a question that I think is not the one-word answer at the tail end of Senator Plett’s questions, but along the same lines, and probably first to Dr. Lafontaine, if you can answer it. It’s nice to see you after a long absence.
My question builds on the observation you made about different conceptions of autonomy. So this might be more of a conceptual question than anything but, is it possible with legislation such as the medical assistance in dying and Bill C-7, in particular, to square the circle of autonomy for a more ableist people who advance it as a right for their life and to bring an end to their lives with dignity, on the one hand, and Indigenous conceptions of autonomy that you mentioned, whether there are ways to do that or whether this is just an impossible cultural and philosophical divide. If there are ways to bridge that gap, do you have any suggestions as to how it can be achieved?
Dr. Lafontaine: Thank you very much Senator Cotter. In answer to your questions, there are ways to make it work.
One of the hardest things with approaching medical assistance in dying through criminal law is that it’s a legalistic definition and remedy versus a medical remedy. So it lacks nuance and has a lot of sharp edges, so to say, when it comes to implementation.
When you are looking at the practical application of autonomy within health care workflows, you not only need policy and legislation to create the opportunity for consent and autonomy, but you also need some sort of monitoring system and some sort of concern and complaint system so that when people feel their autonomy has been impeded for or against whatever intervention, they have some remedy to turn to someone.
When it comes to MAID’s application within Indigenous health systems — and I feel similar to Dr. Wieman. I had the benefit of going through the task force over the year to work through some of those ideas and feelings. I think that legislation that is written in this way and through this entry point of criminal law needs to be written to protect the most vulnerable. We can’t assume that, in removing the criminality, the rest of the cultural things that go along with introducing new ways of providing treatment are going to follow. There is nothing within the legislation or with what’s demanded of regulators and provinces, et cetera, to comply with the law, to make a way for people to report when they feel harm has happened. I think that is one huge gap.
I do believe that patients who request or desire MAID have used the media and the courts in order to move their concerns forward. But that’s only one-sided. It’s not just those who want access; it’s also those who have access, who have a bad experience, whether it’s the individual or their family. That’s the first part.
The second part of the question is related to autonomy more generally within the MAID legislation and how to improve it. I think it really comes down to co-creation.
I picked up on Senator Dupuis’s comment — and hopefully this interpretation was correct — about negotiation. There are three types of health care negotiation within Canadian. There are inherent rights that we get because we are all Canadians. There are the norms that exist within provinces. Because I live in Alberta, I have access to this service. Then there is Indigenous health, where you can have nothing or everything, depending on how effectively you negotiate for your rights.
The reality is that, even for Indigenous people who live in Canada and who may not feel Canadian, they still have access to those constitutional and provincial rights. So negotiation does not fall into this conversation when it comes to certain parts of MAID.
That’s part of the nuance that I hope senators can get from us as witnesses. That’s a perspective we often bring to these programs, instead of looking at it in terms of how we provide the same level of autonomy as other individuals, even in the context of having limited resources. But I definitely do think it’s possible.
Senator Cotter: Thank you.
Senator McCallum: [Indigenous language spoken] I thank all the presenters for coming to help us with this issue. I have a question, but it can be submitted in writing.
The interjurisdictional problems that First Nations continue to face is concerning, as provinces continue to create gaps as they see health services as a federal responsibility for Indigenous people but not for other Canadians. Yet Parliament continues to put through bills that create more gaps or widen these gaps due to these interjurisdictional issues, and only one group falls into these gaps: Indigenous peoples.
This is an area no one seems keen to take responsibility for. Do you see this as an issue of discrimination? Does this bill address this issue in any way or will it create more gaps? What comments, recommendations or amendments would you make to address this issue? You can submit this in writing if you like.
My second question is this: A gender-based analysis was done on this bill to look at the multiple, complex and intersecting forms of barriers on the various groups and communities of Indigenous peoples, and particularly the disabled community. I don’t know if you had access to the analysis on this bill. What are your comments on this analysis? If you weren’t able to access it, would you be willing to request it and submit in writing your recommendations, comments and amendments on the GBA analysis?
If I could have Mr. Belanger start with the answer. Thank you.
Mr. Belanger: Thank you, senator. I haven’t seen the gender-based analysis, but I will request it and give you my comments.
In terms of the interjurisdictional problems, absolutely they are huge. Part of MAID is, for instance, to be informed of available resources. We find that unless you are working within the Indigenous sector and you’re familiar with non-insured health benefits or the compendium of programs offered in communities, physicians or non-Indigenous nurses often don’t know that. Particularly when we talk about disability, we still find doctors who are unaware of the Registered Disability Savings Plan, which is a federal program that has been around since 2008. That’s a national program. Understanding the nuances of Indigenous health, First Nation health services, contracts and programs that are there, but unless you work within that, I find that a lot of non-Indigenous providers are unfamiliar with them.
Senator McCallum: Did anybody else want to comment?
Dr. Lafontaine: I’ll make a quick comment related to the interjurisdictional gaps and whether or not MAID is widening these gaps. I think the biggest challenge lies with the funding mechanism, the Canada Health Act. There are no programs or services that are defined as a bottom, and because of that, Indigenous communities have no base services; it’s only what they negotiate. But if you don’t know what to negotiate for because you have never had a health care system, it’s impossible to negotiate properly. So I think it lies in the way that we define health federally. I think there is a place for the federal government in defining that bottom, in consultation with all partners.
Ms. Nowgesic: From an Indigenous nursing lens, part of the consideration is whether the federal legislation is identical to the provincial statute. This becomes a problem when we are looking at applications to non-insured health benefits or any other level of service within Indigenous health services. This poses a series of problems for Indigenous nurses, who are the primary point of contact at the community level in dealing with most of these issues.
When the gender-based analysis lens is applied — and there are several conditions that need to be factored in here — we need to look at empirical research on clinical practice and how that is being done with regard to the community. We know that, for the most part, the issues have not been adequately addressed. Therefore, we run into problems between jurisdictional issues and the GBA scope. Thank you very much.
The Chair: Anyone else? Senator McCallum, any other questions?
Senator McCallum: I thought I only had time for that one.
The Chair: You do. I just thought if you had another one.
Senator McCallum: No. I think most of the ones I had written have been asked by other senators. I thank the witnesses and wish them a safe weekend.
The Chair: Senator Dupuis will be our last questioner. You have two minutes, Senator Dupuis.
[Translation]
Senator Dupuis: My question goes to the representative from the nurses association, Ms. Nowgesic. I don’t know the situation in all the provinces, but, in Quebec, in a lot of Indigenous communities, the nurses are members of that community. I was wondering whether, with medical assistance in dying, that could pose any particular problems. With Indigenous police officers working in their own community, all kinds of particular problems have been experienced. I was wondering whether it is the same for nurses. With medical assistance in dying, could it pose particular problems for you, as a nurse in the community of which you are a member?
[English]
Ms. Nowgesic: Thank you, Senator Dupuis, for the question. In regards to Indigenous nurses at the community level, we know that currently under the First Nations and Inuit Health Branch, there are 672 nurses across Canada. We know that the majority of these nurses are from their home communities. We know that this causes additional problems because then that nurse becomes marked, and that’s why I said there needs to be meaningful protection of the conscious rights of health care workers. Are they going to be punished because they didn’t execute their duty as a nurse? Or will they be punished by the community people for taking a life?
That is why we are trying to say, put a pause on this situation until comprehensive consultation can be done. Quebec is a complex province with a number of varying issues and population in that province. You have Innu. You have Inuit. You have First Nations. You have on and off reserve.
How applicable is federal legislation, and do they mirror what is available under the provincial statutes for health regulation? We try to work with the Quebec Nurses’ Association, both non-Indigenous and Indigenous. We continue to try to strive for that happy medium. Thank you, Senator Dupuis.
Senator Dupuis: Thank you.
The Chair: We have learned a lot from all four of you. We wouldn’t have gotten this opportunity if it wasn’t for one of our committee members, Senator Boyer, who made sure you would be witnesses in this hearing. I want you to know we are much richer for your knowledge and in many other ways for your having participated. This won’t be our last time.
If there is anything else you think about in the next few weeks, please let the clerk know. We look forward to working with you. Thank you very much to all four of you.
Senators, this is the end of today’s panel. We will meet tomorrow morning at ten o’clock. Thank you.
(The committee adjourned.)