THE STANDING SENATE COMMITTEE ON LEGAL AND CONSTITUTIONAL AFFAIRS
OTTAWA, Tuesday, February 2, 2021
The Standing Senate Committee on Legal and Constitutional Affairs met with videoconference this day at 9 a.m. [ET] to study Bill C-7, An Act to amend the Criminal Code (medical assistance in dying).
Senator Mobina S. B. Jaffer (Chair) in the chair.
The Chair: Honourable senators, I am Mobina Jaffer, a senator from British Columbia, and I have the pleasure of chairing this committee.
Today we are conducting a hybrid meeting of the Standing Senate Committee on Legal and Constitutional Affairs. Senators, as you know, we have experienced that hybrid meetings can be very challenging, so I ask that you please be patient with the clerk and myself. Should any technical challenges arise, particularly in relation to interpretation, please signal this to the clerk on the chat function, and the clerk will try to resolve it. If there are any other technical issues, please let the clerk know.
Senators, I will do my very best to make sure that all of you are able to ask questions of the witnesses, but in order to do so, I again ask you to please keep the preambles to your questions and your questions short so we can hear most of the witnesses. I want to remind you that most members will want to ask questions of the panellists, so I ask that you only signal to the clerk through the Zoom chat if you do not have a question. Otherwise, I will call all members of the committee for questions. If you are not a member of the committee, please signal to the clerks if you have a question and I will try my best to accommodate you, but I anticipate that the time will be short, especially this morning with seven groups.
Panellists, I would like to introduce the senators who are members of the committee as well as other senators: Senator Boniface; Senator Boyer.
We also welcome Senator Carignan, who is the critic for the bill.
We also welcome Senator Cotter; Senator Dupuis; Senator Griffin; Senator Harder; Senator Keating; Senator Tannas; Senator Gold, ex officio member; Senator Plett, who is also an ex officio member; and Senator Woo.
We also have several non-members participating in this important study.
We also welcome Senator Petitclerc, who is the sponsor of the bill.
We also welcome Senator Kutcher; Senator Moodie; Senator Seidman; Senator Pate; Senator McCallum; and Senator Miville-Dechêne.
Senators, I want to bring to your attention that yesterday we had exceptional challenges with our witnesses’ testimony. I want to especially thank Mark Palmer. With his compassion and convincing many people, he was able to get us to hear witnesses we would not have otherwise had the opportunity or the privilege to hear from. I want to thank multimedia service staff, who also worked hard to have us hear this rich testimony of witnesses. As well, a big thank you to the interpreters. They all worked patiently and diligently and did not give up on some of our witnesses. We heard the rich testimony we heard yesterday because the interpreters just worked with the witnesses. I want to thank the witnesses as well.
Senators, we have a very full panel today, and I will start off with our first panellist, Mr. Scott Robertson, Senior Associate, Nahwegahbow Corbiere, Indigenous Bar Association. Mr. Robertson, you have seven minutes. Thank you.
Scott Robertson, Senior Associate, Nahwegahbow Corbiere, Indigenous Bar Association: Thank you very much, Madam Chair, co-chairs and members of the committee, for the opportunity to participate in these important matters.
I would like to begin by acknowledging the Algonquin nation’s unceded territory on which we gather and call upon their laws and teachings to guide us in our discussions.
My name is Scott Robertson. I’m a Mohawk from Six Nations of the Grand River. I’m a practising lawyer with the firm Nahwegahbow Corbiere and the former president of the Indigenous Bar Association, the IBA.
The IBA, for those who may not know, represents a membership of Indigenous lawyers, scholars, law clerks, judges and elders from across Canada. The IBA’s mandate is to promote the advancement of legal and social justice for Indigenous peoples in addition to promoting the reform of policies and laws affecting Indigenous peoples. It is on this basis that I will address the proposed amendments to the Criminal Code with respect to medical assistance in dying.
I think it is important to remember the overarching purpose of the law before you, which is to ensure that we respect the rights of those people who lack the ability to bring a peaceful end to their lives at a time and in a manner of their own choosing.
Before I begin, I would like to acknowledge the efforts of the BC Civil Liberties Association and specifically their legal counsel, Joseph J. Arvay. Regrettably, Mr. Arvay passed away in December, and it now lies to all of us to continue to advocate for the most vulnerable.
My submissions will focus on two main points today: one, the systemic discrimination of Indigenous peoples within the current health care system; and two, the lack of consultation and accommodation to meaningfully address this ongoing discrimination in developing the current amendments to the act before you.
The views that I express today are in no way intended to represent Indigenous peoples as homogenous. The original inhabitants of this land are a diverse, culturally rich and vibrant people, each with their own laws, views and perspectives. This includes the right to die. Death to some Indigenous peoples requires ceremonies, medicine and prayers that will guide their spirit back to the spirit world. It is important to acknowledge these unique perspectives when discussing the amendments before you.
In February of 2020, Justice Minister Lametti and Parliamentary Secretary Virani hosted a round table discussion on this act with a focus on Indigenous perspectives. The following opinions were expressed by participants representing Indigenous health organizations: Indigenous peoples face many unique challenges with respect to the provision of health care, much of which is a direct result of historical and intergenerational trauma; Indigenous peoples continue to experience harm and violence within the health care system, including verbal and physical violence by hospital staff and health care professionals, systemically limited access to culturally safe care, both in the geographic and funding sense, forced medical procedures against their will and without consent, refusal to administer essential health care services, including traditional medicines and practices, and an overall lack of diversity and cultural sensitivity within the health care profession.
Widely recognized as an important determinant of health, access to health services is, however, not equally nor universally available to all Canadians. Most notably, Indigenous peoples continue to experience barriers to health care, resulting in significant and ongoing health disparities compared to other Canadians.
Indigenous peoples experience specific challenges related to the accessibility of health services across all geographic regions; however, the challenges are more acute in rural, remote and northern communities. The rural and remote location and small population size of communities in these regions can make it challenging to recruit and retain health professionals, leaving many communities with critical shortages of medical personnel. However, none of these challenges are addressed in the proposed amendments.
Longer wait times, prohibitive transportation costs, inadequate services and a lack of overall funding are systemic within the Indigenous health care system. These issues will all potentially impact MAID.
But even more disturbing is the systemic racism towards Indigenous peoples who access the health care system. Recent events, including Brian Sinclair, who waited for 34 hours in the emergency room of Winnipeg’s Health Sciences Centre for a treatable bladder infection before he was discovered dead; or Joyce Echaquan, a 37-year-old mother of seven, from Atikamekw First Nation, who was berated by hospital staff while she cried for assistance from her hospital bed, are all acts of discrimination against Indigenous peoples in their most vulnerable state.
It is against this backdrop that the proposed amendments to the Criminal Code on medical assistance in dying must be reviewed. The proposed amendments to the Criminal Code remain silent on how these critical issues impacting the provision of health care to over 1.6 million Indigenous peoples are to be addressed. This is unacceptable and falls well short of the current government’s commitment to reconciliation with Indigenous peoples.
Meaningful reconciliation must be based on a respectful relationship with Indigenous communities. The development and drafting of these amendments have been anything but respectful, and have virtually ignored the participation and insight of Indigenous peoples.
All parliamentarians, senators and this committee in particular have a role to play in ensuring that those laws that may potentially impact Indigenous peoples are fully canvassed and resolved with a view to advancing reconciliation and further ensuring society’s most vulnerable are protected.
There is a concern among some Indigenous communities that the proposed amendments may cause further harm to Indigenous peoples. Tyler White, Chief Executive Officer of Siksika Health Services, whom you’ll be hearing from later today, appeared before the parliamentary committee on Bill C-7 and stated the following:
The expansion of MAID sends a contradictory message to our peoples that some individuals should receive suicide prevention, while others suicide assistance.
In order to address the historical wrongs, foster reconciliation and end the systemic racism against Indigenous peoples within the health care system, this committee should undertake comprehensive and meaningful consultation with Indigenous peoples. Health care providers who work within Indigenous communities need to be consulted to ensure MAID is implemented and administered in a respectful and culturally appropriate manner. Failing to do so may lead to further harm and racism towards Indigenous peoples. There is much work to be done by this committee in order to reconcile this law with Indigenous people’s perspectives and interests. It remains to be seen how this will be accomplished within the time frame set out by Parliament.
In closing, the IBA would like to thank the committee for the opportunity to speak with you today, and I would be pleased to answer any questions you may have on addressing these critically important amendments.
The Chair: Thank you very much, Mr. Robertson.
I would like to introduce Senator Batters, who is deputy chair of our committee, Senator Boisvenu and Senator LaBoucane-Benson. They are also here to hear the panellists, so thank you.
We continue with the next panel. From the Barreau du Québec, we are pleased to welcome Jean-Pierre Ménard and Marie-Nancy Paquet.
You have the floor.
Jean-Pierre Ménard, Lawyer, Barreau du Québec: Ladies and gentlemen, I am pleased to appear before you today to present the position of the Barreau du Québec on...
The Chair: I’m sorry, Mr. Ménard, there’s a little problem with the interpretation. My apologies.
Mark Palmer, Clerk of the Committee: Madam Chair, can we suspend for a minute, please, while we check out what is happening?
The Chair: We will suspend for a few minutes to try to resolve this issue. Thank you for your patience, senators.
Mr. Ménard: Madam Chair, the Barreau du Québec thanks you for calling us to this meeting to discuss the work on Bill C-7. I am accompanied by Marie-Nancy Paquet. Our presentation will be divided into two parts and is the result of a long-awaited government bill, following the Superior Court judgment rendered by the Honourable Christine Baudouin in the case of Jean Truchon and Nicole Gladu against the Attorney General of Canada and the Attorney General of Quebec. This decision concluded that the “reasonably foreseeable natural death” criterion found in the federal legislation is unconstitutional. At the outset, let me say that I argued Mr. Truchon’s case before the Superior Court. I had been Mr. Truchon’s lawyer since 2017 and was his lawyer until his death last year. I am fully familiar with the case, and I will highlight a few aspects.
Bill C-7 was long awaited by the bar and everyone involved in the issue. We were waiting to see how the federal government would respond to the decision. We have read the bill and I will not hide from you that we were very disappointed with its content. The bill contains some positive aspects, such as removing foreseeable death as a criterion for access to medical assistance in dying. That criterion has been repealed in the bill, but another equally difficult form of access has been introduced.
In essence, therefore, the bill that replaces the former legislation now divides those who require medical assistance in dying into two groups: those whose death is foreseeable and those whose death is not foreseeable. For those whose death is foreseeable, the conditions remain essentially the same, with some slight improvements with respect to final consent and some simple accommodations to help implement the legislation. However, the fate of those whose death is not reasonably foreseeable is of real concern. For them, a special category has been introduced that places applicants under a different order. They will have to wait 90 days for their application to be accepted before medical assistance in dying is provided. This group is also subject to other conditions in the bill.
This means that we end up with two categories of people: those who need medical assistance in dying and who meet the criteria without any problems, and those whose death is not foreseeable. The situation will be much more complicated for those people.
In the Barreau du Québec’s opinion, having two groups is unacceptable, because some people are in the same situation. We are proposing that the clause simply be abolished or repealed, because it creates two categories of people and also implies that people whose death is not foreseeable are more vulnerable or need to think about it a little longer. This was not the spirit of the Truchon decision or what we expected to see in the bill. Therefore, we would like to see this provision removed and replaced with what the Truchon decision says.
I will now let Ms. Paquet conclude.
Marie-Nancy Paquet, Lawyer, Barreau du Québec: We could not have full consideration of the constitutional issues related to the eligibility criteria for medical assistance in dying without addressing another criterion required by the Criminal Code, namely the advanced state of irreversible decline in capability of those wishing to use it.
Beyond declaring the criterion of reasonably foreseeable death unconstitutional under the right to life, liberty and security of the person, the Truchon decision also highlighted the incompatibility of this criterion with the constitutional guidelines set out by the country’s highest court. In Carter, neither the criterion of reasonably foreseeable death nor the criterion of advanced state of irreversible decline in capability was accepted by the Supreme Court as a basis for setting constitutionally acceptable benchmarks for access to medical assistance in dying. Both the Carter and Truchon decisions have held that a permissive regime with properly designed and applied safeguards can protect vulnerable persons from abuse and error, and that vulnerability can be assessed on a case-by-case basis, using the procedures that physicians follow when assessing informed consent and decision-making capability in the more general context of medical decision-making. There is no legal justification for additions to the established criteria.
Since 2017, when Bill C-14 was introduced to legalize medical assistance in dying in Canada in the wake of the Carter decision, the Barreau du Québec argued that the reasonably foreseeable death and the advanced state of irreversible decline in capability criteria, since they had not been accepted by the Supreme Court, were likely to be successfully challenged before the courts, and the Barreau du Québec therefore recommended that they be removed. Today, we maintain that position. The Truchon decision seems to have proved us right on the unconstitutionality of the reasonably foreseeable death criterion, and we submit that, again, it is only a matter of time before the criterion of advanced state of irreversible decline in capability is also found to be unconstitutional by our courts. This being the case, section 241.2(2)(d) of the Criminal Code should be deleted.
Thank you once again for inviting the Barreau du Québec to share our thoughts and recommendations on Bill C-7 with you. We are of course available to answer your questions.
The Chair: Thank you for your presentations.
We will now go to Mr. Adams. Mr. Adams is Vice Dean and Professor of Law, University of Alberta Faculty of Law. Mr. Adams has written about how to balance constitutional rights in cases of MAID.
Eric Adams, Vice Dean and Professor of Law, University of Alberta Faculty of Law, as an individual: Good morning. Can I get a thumbs up if my audio is okay? I was having some trouble earlier.
Mr. Palmer: Just be sure you hold the microphone close to your mouth and speak slowly and clearly. Thank you.
Mr. Adams: Good morning. My thanks for the opportunity to speak today.
My perspective is that of a constitutional scholar and lawyer, but also, like many of us, as a Canadian who knows firsthand the vulnerabilities of persons living with disabilities as well as the extended suffering exacerbated by the existing MAID system that is closed to too many who are seeking medical assistance in dying.
This past December, I produced a report for Senator Brent Cotter outlining some of the constitutional issues in relation to Bill C-7. Anyone who would like an expanded, written version of my remarks can contact Senator Cotter’s office.
I will focus this morning on the most pressing constitutional issues as I see them in relation to this bill.
I will say at the outset that the legal regulation of death is as old as life. In Canada’s more recent legal history, Parliament repealed the criminalization of attempted suicide in 1972 but left intact the crime of aiding or abetting a person to commit suicide. That provision was upheld — as you know, I’m sure — by the Supreme Court of Canada in 1993 in the Rodriguez case but ultimately struck down in 2015 in the Carter decision. The amended statutory regime that came into force in 2016 as a result of the Carter case was recently declared unconstitutional in some of its aspects by the Quebec Superior Court in Truchon, which you’ve just heard about. That case set in motion this latest legislative process.
If there is a thread of continuity that runs between and through these decades of cases, as well as parliamentary debates, research, studies and scholarship about assisted dying, it is surely this. The questions posed are profound; they strike at the heart of our moral intuitions of what it means to live a good life and to die. In addressing those questions, people will continue to weigh the values of autonomy, dignity, liberty and equality — the key concepts of our constitutional order — differently.
Assisted suicide presents a particularly challenging policy area because it raises an array of directly conflicting constitutional claims. Some argue that Bill C-7’s proposed access to assisted dying is unconstitutionally lenient, while others argue that it is unconstitutionally restrictive. Still others will assume that those competing conflicts mean the legislative porridge is just the right temperature.
It may seem in such moments that the Constitution, or the Charter of Rights and Freedoms, is the very narrow eye of a needle to be threaded. While it is no doubt true that the Charter places definite limits on the scope of law in relation to MAID, I do not think the Charter should be approached as a set of precise Ikea instructions that, if you get wrong, will cause the bookshelf to collapse in your living room. There is scope within the Charter’s terms for parliamentarians to craft better and worse versions of law, guided by the Charter. Creating good law is the task of Parliament. Nonetheless, whatever the regime that is enacted, constitutional litigation about MAID seems likely to continue.
Let me examine, then, the argument that Bill C-7 grants access to MAID too broadly by removing the requirement of reasonable foreseeability of death. For such a claim to succeed, litigants would need to demonstrate that the existence of the autonomy of choice to access a legal regime of assisted dying infringed their equality rights under section 15 or their rights to life, liberty and security of the person under section 7. In effect, the argument is that to protect vulnerable persons susceptible to ending their lives prematurely, and in order to signal fully the dignity of lives of disabled persons, the possibility of choice must be denied to some categories of people. Very similar arguments by the Government of Canada failed at the Supreme Court in Carter, and they did not persuade the judge in Truchon either.
The most significant question a court will examine in trying to answer this challenge, that expanded access infringes the Constitution, will be whether MAID and its system of protections and safeguards adequately protect the truly vulnerable while allowing the dignity of choice to those who are not. Answering that question, it seems to me, will turn not on the eloquence of the argument but on the evidence of medical experts. Everything that I have seen suggests that judges will place considerable weight on the constitutional value of liberty for individuals to make fundamental choices about their own lives.
A constitutional challenge may also issue from the opposite perspective, that the regime is unconstitutionally restrictive by totally prohibiting those who would otherwise meet the criteria of accessing MAID but whose sole, underlying medical condition is a mental disability. Without question, that distinction activates the Charter’s equality rights guarantee because the law treats people differently depending on the nature of the medical origins of their suffering. It also engages section 7 of the Charter because it may encourage certain sufferers to end their lives earlier than they would have otherwise or through more painful means since they are denied access to MAID.
Can the law justify treating extreme and untreatable sufferers of mental disorders differently from others whose conditions are physical in nature? There will certainly be some individuals who fall within this category. We have already seen them raised in the cases, those who do not want the law’s protection but would rather want the opportunity to exercise their autonomy to end their suffering with medical assistance in an equal fashion to others.
Can the government uphold that differential treatment outlined in Bill C-7 as a reasonable limit of rights under section 1 of the Charter? Canada failed to convince courts in Carter and Truchon that a total prohibition on MAID for all in the Carter case and for those whose death is not reasonably foreseeable in Truchon was a reasonable limit. In those cases, the courts relied on evidence that safeguards could distinguish free choices between non-vulnerable persons and those in need of true protection.
In my view, the contemplated exclusion of individuals with a sole, underlying mental disability will only survive constitutional scrutiny if the evidence reveals that no safeguards, no counselling, no time delays or consent regimes can distinguish between vulnerable individuals suffering from mental disorders and those truly consenting to end their lives and suffering. That, to me, again is a question that will turn on the evidence —
The Chair: Mr. Adams, can you please wind up?
Mr. Adams: I will. That question will turn on medical evidence.
I’ll close with the words of the Supreme Court of Canada in Carter:
Section 7 is rooted in a profound respect for the value of human life. But s. 7 also encompasses life, liberty and security of the person during the passage to death.
I’ll be happy to answer questions if there are any. Thank you.
The Chair: Thank you very much, Mr. Adams.
We now welcome Jonas-Sébastien Beaudry, a teacher and researcher in health and disability law, disability studies, legal theory and human rights. He convenes the disability working group.
Jonas-Sébastien Beaudry, as an individual: Thank you.
Bill C-7 proposes to allow people whose death is not reasonably foreseeable to have access to medical aid in dying under specific conditions that act as safeguards. These safeguards should, in principle, protect vulnerable people and affirm that Canada is committed to recognizing that the life of all Canadians matter and should not be ended lightly.
Taking life and bodily integrity seriously are some of the key values underlying the Criminal Code’s offences against the person, including murder or aiding suicide. Medical aid in dying is contrasted with these offences and carved out as an exceptional normative sphere, within which the state can permit actively ending human lives on grounds of respect and compassion. This carefully delineated encroachment on the state’s constitutional commitment to the value of life would now be widened to include people who have the option of living but choose to die.
Legally speaking, there are at least two ways of formulating the concerns about Bill C-7 that one can reasonably have and that some people within the disability community share. One is on the basis of equality rights, and the other one is on the basis of the rights to life, liberty and security. Respectively, they are sections 15 and 7 of the Canadian Charter of Rights and Freedoms.
As for inequality and unjustified discrimination, by removing the proximity of death requirement, the law would not only target severe disabilities connected to impending death, not only dying people with disabilities, but the bill would legalize the euthanasia and assisted suicide of the larger population of people with serious and permanent disabilities.
People with severe disabilities have historically been the object of various kinds of injustice, such as distributive injustice, when they do not receive social goods or supports that would make their lives tolerable, let alone thriving, or epistemic justice, when scholars and practitioners alike assume their quality of life and well-being is lower than it actually is. Their very humanity and legal personhood has been challenged and their lives threatened or ended. It would not be responsible to read Bill C-7 outside of this long history of stigma.
Bill C-7 makes the MAID framework no longer about the dying and how they should die. It is about the living and whether their lives are reasonably enough worth living. It opens MAID not just to dying people with disabilities but to Canadian citizens who happen to be seriously disabled, just like they could happen to be Black, Indigenous or Muslim.
That is the analogy drawn by the United Nations Special Rapporteur on the rights of persons with disabilities and the Special Rapporteur on extreme poverty and human rights and the independent expert on the enjoyment of all human rights by older persons. They:
. . . expressed alarm at a growing trend to enact legislation enabling access to medically assisted dying based largely on having a disability or disabling conditions, including in old age. . . .
“Under no circumstance should the law provide that it could be a well-reasoned decision for a person with a disabling condition who is not dying to terminate their life with the support of the State.”
Yet that is the differential treatment that Bill C-7 would create, threatening the right of equal protection under the law.
If we want to avoid making highly controversial value judgments about life and let people decide for themselves what a life worth living is, then why not allow every Canadian citizen to receive assistance in ending their lives? The answer to this is, of course, that we take life seriously. Why not, then, take the lives of people with disabilities equally seriously?
If the answer is that serious disabilities sometimes correlate to intolerable lives, this is a probabilistic generalization that has been refuted in scholarship on well-being and disability. Surely, the state must fine-tune its statutory framework to avoid unnecessary, stigmatizing generalizations.
At the very least, it is our duty as a society committed to respecting life, liberty and equality to ensure that sufficient resources and supports are provided to people who are contemplating MAID so that Canadian citizens do not die deaths of despair, do not die because of neglect and social injustice, do not die because of insufficient caring and support-system arrangements, leaving them poor, lonely, resourceless and without access to sources of meaning, making their lives tolerable.
Currently, Bill C-7 only gestures at these positive obligations on the part of the state concerning social determinants of autonomy, life and security in paragraphs 241.3(1)(g) and 241.3(1)(h), which require the doctor or nurse to inform the patient of counselling, disability support and community services that may alleviate their suffering, but that does not guarantee their availability. It may end up being an empty formality rather than a robust nudge towards a tolerably meaningful life, the kind of nudge all non-disabled Canadians receive when they contemplate suicide.
I anticipate obvious objections regarding provincial competence over health care and social support, as well as social rights. I have some answers to these important objections, and I will gladly share them with the committee now or in writing. Feel free to contact me individually if you wish additional information I’m not able to give on the spot or don’t have time to give today. Thank you.
The Chair: Thank you very much.
The last witnesses are Mr. Richard Fowler, Board Member, Representative for Vancouver, British Columbia, Canadian Council of Criminal Defence Lawyers and Lucie Joncas, Board Member, Representative for Montreal, Quebec, Canadian Council of Criminal Defence Lawyers long.
Richard Fowler, Board Member, Representative for Vancouver, British Columbia, Canadian Council of Criminal Defence Lawyers: Thank you very much. I have to start by saying it is very early in British Columbia here.
Madam Chair and senators, as you have heard, I appear along with Lucie Joncas on behalf of the Canadian Council of Criminal Defence Lawyers. As a national organization representing defence counsel, we seek to maintain the important principle that the criminal law set out clearly the potential liability for either deliberately, recklessly or negligently violating laws prohibiting certain acts.
This is particularly important in the context of medical assistance in dying, which, as I’m sure you have heard and will continue to hear, is not something upon which all Canadian agree. There are significant moral, ethical and philosophical disagreements about medical assistance in dying. In this context, as defence lawyers, we believe that the substantive law must clearly articulate the potential jeopardy professionals face for failing to properly comply with the law, a law which is necessarily complex.
It must be remembered that section 241 of the Criminal Code explicitly prohibits aiding or encouraging a person to commit suicide. Breach of this section carries the maximum sentence of 14 years in jail.
Medical assistance in dying is an exemption to this general prohibition, provided that an individual acts in accordance with the sections that regulate medical assistance in dying, particularly all of the safeguards, which in the existing legislation are numerous and in Bill C-7 are even more numerous but include making sure that a person meets all of the criteria for eligibility and other safeguards around consent and capacity, which, parenthetically I note, have caused great minds to expend much ink or breath elucidating in other contexts.
If a medical or nurse practitioner or pharmacist knowingly fails to comply with the safeguards, with the exception of the eligibility requirements, they are guilty of an indictable offence with a maximum of five years in jail — that’s section 241.3. However, the current legislation and Bill C-7 are silent as to what happens if the practitioner fails knowingly, recklessly or potentially even negligently to form the opinion that the individual satisfies the eligibility requirements.
Under the heading of safeguards, paragraph 241.2(3)(a), the medical or nurse practitioner must be of the opinion that the person meets all of the eligibility criteria in subsection 241.2(1). However, under the heading “Failure to comply with safeguards,” section 241.3 specifically excludes failing to comply with the requirement to form an opinion that the person meets all of the criteria for eligibility as the basis for committing an offence. Both the existing legislation and Bill C-7 are also silent as to what happens if a practitioner negligently or recklessly rather than knowingly fails to comply with the safeguards.
It seems quite clear that if a doctor fails to comply with a safeguard, either knowingly, recklessly or even potentially negligently, then they are liable for the offence of aiding suicide because the exemption that has a requirement of acting in accordance with the medical assistance in dying provisions would not apply. In addition, a medical or nurse practitioner could be liable for unlawful-act manslaughter. In some cases, particularly if the practitioner has failed to adequately deal with consent or capacity to form consent to medical assistance in dying, there is the theoretical potential for a charge of murder.
In the context of conduct that is at the fulcrum of a moral, ethical and philosophical debate and conduct that results in death, this is troubling. Bill C-7 expands the entitlement to medical assistance in dying, thereby enlarging the risk that there will be cases where, after the fact, relatives complain that the appropriate procedures or safeguards were not followed, in the worst case scenario, complaining that the person had in fact withdrawn their consent, or never consented or did not have the capacity to consent.
Given how emotionally fraught this debate can become and the large pool of people impacted when a person dies through medical assistance in dying, it is imperative that the legal consequences of non-compliance with the eligibility and other safeguarding criteria be very clear. Right now, the intersection between the medical assistance in dying provisions and the offences of murder, manslaughter, criminal negligence causing death, administering a noxious thing and aiding suicide, for example, are simply not clear.
One of the prerequisites for valid medical assistance in dying is that the doctor be of the opinion that the person meets all of the eligibility criteria. This opinion includes an assessment of the person’s medical condition and the presence of informed consent. These are criteria on which reasonable people may disagree. But what level of disagreement might lead someone to conclude that the medical practitioner’s opinion could not possibly have been held because it was so patently unreasonable? What is the liability of the medical practitioner in those circumstances? Regretfully, I say in the current legislation and in Bill C-7, it is entirely uncertain, but theoretically, it could lead to a charge of murder or manslaughter.
Thank you. Those are my submissions, and I believe Ms. Joncas may have something to add. Thank you very much, Madam Chair.
The Chair: Thank you.
Ms. Lucie Joncas, Board Member, Representative for Montreal, Quebec, Canadian Council of Criminal Defence Lawyers: Two concerns also coexist. We are concerned about the exclusion of people with mental health problems. I had the opportunity to attend a conference with people who have experienced these problems. They hoped they would not be excluded if one day they had illnesses that coexisted with mental health problems. They also said that they would not want people with other illnesses not to be able to access medical assistance in dying.
The other concern is access to people who are remanded in custody or detained and who will make these requests. The concern is that the medical assistance in dying will take place outside the prison, and that for humanitarian reasons, those who want to have access to it will have to be released in order to be able to die with dignity.
These are the two additional concerns of the Canadian Council of Criminal Defence Lawyers.
The Chair: Thank you.
We will now hear from the Canadian Bar Association, Mr. David Roberge, Member of the Canadian Bar Association End of Life Working Group.
David E. Roberge, Member of the Canadian Bar Association End of Life Working Group, Canadian Bar Association: Good morning, Madam Chair and honourable members of the committee. Thank you for inviting the CBA to discuss Bill C-7 today.
The Canadian Bar Association represents more than 36,000 lawyers across the country. The CBA’s main objectives are the improvement of the law and the administration of justice.
Our brief was prepared by the CBA’s end-of-life working group. This working group is made up of representatives who work in a wide range of areas of expertise, including constitutional law, human rights law, health law, criminal law, estate law, seniors’ law, children’s law, privacy and access to information law.
While we applaud the government’s effort to harmonize and clarify the law about MAID following the Quebec Superior Court’s decision in Truchon, we have some concerns with Bill C-7. I would like to use my opening remarks to outline some of them.
Eligibility to MAID should be aligned with the criteria established by the Supreme Court of Canada in Carter, taking into account the protection of vulnerable people. The CBA supports the Quebec judgment in Truchon and highlights its interpretation of Carter, namely, that the essence of the Supreme Court decision is not proximity of death but, rather, the prevention of intolerable suffering, as well as dignity and autonomy of the person for those who are capable to clearly consent to the termination of their life. We also support a patient-centric approach for capacity and consent, as adopted by the Quebec Superior Court in Truchon.
Returning to Bill C-7, in our view, mental illness should not be excluded from the scope of the legislation, especially given the full MAID review initially planned for June 2020 and now pending. This exclusion forecloses a thorough review of the issue and suggests a conclusion that has not been debated or recommended.
In Truchon, the court stated that vulnerability must be assessed from an individual perspective through informed consent. In our view, the general exclusion of all persons suffering from mental illness, and the failure to include in Bill C-7 a mechanism to enable these persons to have access to MAID, is likely to be constitutionally challenged as infringing equality rights.
Bill C-7 proposes two different sets of safeguards that must be met before medical assistance in dying is granted, each of which applies depending on whether or not the person’s natural death is reasonably foreseeable. However, the reasonable foreseeability of death, which was declared unconstitutional in the Truchon ruling, has been the source of much uncertainty in practice, and Bill C-7 provides no guidance on how to apply it.
If these two sets of safeguards are maintained, we recommend that guidance be provided to avoid confusion as to which measures are applicable and to ensure appropriate access to medical assistance in dying.
On another topic, the CBA has reservations about the requirement to consult a practitioner with specific expertise in the condition causing the person’s suffering. Appointments with specialists can take several months and in some communities are not available. There is currently no requirement that individuals seek specialists when applying for MAID. It is up to the practitioners to determine their own level of expertise when assessing informed consent and to make an appropriate referral if need be. While some situations could justify seeking the opinion of a practitioner with specific expertise, we have concerns that a blanket requirement could have a disproportionate impact for some individuals and create a significant barrier to MAID.
Lastly, Bill C-7 provides that the waiver of final consent to medical assistance in dying applies only if death is reasonably foreseeable. It is our view that the waiver of consent should apply whether death is reasonably foreseeable or not, since in both situations it is possible to lose capacity to consent.
On behalf of the CBA, thank you again for the opportunity to present today. I look forward to answering any questions you may have during today’s session.
The Chair: Thank you, Mr. Roberge.
We will now go to our last witness, Mr. Daniel Weinstock, Professor and Director of the McGill Institute for Health and Social Policy. He has studied issues around access to MAID and can speak from a constitutional and ethical perspective.
Daniel Weinstock, as an individual: Thank you very much. I will do the same as my colleague and thank you, while asking that someone give me a thumbs up to make sure I can be heard very well. Thank you.
With your permission, I’m going to depart somewhat from my speaking notes because, as the last speaker, I don’t want to simply repeat things that have been said by others. I hope the interpreters will also forgive me.
I want to start by saying one prefatory thing, which is that I think all of us — senators, legislators in the House of Commons, jurists — have a responsibility towards Canadians to get it right this time. There is a risk that the debate over the right way in which to institutionalize MAID in a set of laws will be a kind of political-juridical ping-pong game for years to come and create uncertainty —
Mr. Palmer: Professor Weinstock, I’m sorry to interrupt. I’ll ask you to slow down a bit. Thank you.
Mr. Weinstock: The risk is that there will be a game of constitutional-legal ping-pong that will continue for years, and perhaps even decades, in a way that will create uncertainty and anxiety for Canadians.
I start from the assumption that there is a very clear idea at the heart of the Carter decision, reiterated in the Truchon decision, which is that MAID should be made available when suffering caused by a medical condition is judged by the individual who is suffering to be intolerable and not remedied by any available means. There are two very deep moral ideas here, that of suffering and its alleviation, and that of the individual’s own judgment about her own suffering. Somehow we have to arrive at a law that ensures that people who meet those two conditions, whose suffering is irremediable by their own lights, and also by the lights of medical practitioners, are allowed access to MAID, and that others who do not meet these criteria are, though dealt with compassionately by the health care system, not given access to MAID. Therefore, we want a system neither under- or over-inclusive.
In order to do this, I think we have to pass legislation that takes the Carter and Truchon criteria seriously. We also have to pass a law that can be seen by Canadians as having taken seriously their moral concerns with the law. The problem is that those moral concerns are, at least on the face of it, divergent. Some people think that the law opens the door too widely and some people think that it opens the door not enough. But I think that if we dig a little deeper, we will see that most Canadians agree with the substance of the Carter decision. They just disagree about whether we can get it right through institutional means, through safeguards. I think we can, and I think we can do better.
When one looks at the complaints that have been voiced in recent months and years about the proposed legislation, we’ll see two claims of arbitrariness that are being made by two different groups. On the one hand, people whose only medical condition is that of a mental disorder and their advocates quite rightly complain that exclusion of their suffering amounts to not taking their suffering seriously enough and ends up perpetuating prejudices that we have about mental health, which is that mental health problems are not really health problems and that they are therefore not as serious. This is reflected in a number of ways, including inadequate funding that continues to be devoted to mental health throughout this country. On the other hand, we have a concern that was voiced by my colleague this morning, Jonas-Sébastien Beaudry, from members of the disability community who feel that the naming of disability within the bill as a particular path, as a source of suffering that is peculiar, in that it qualifies people for medical assistance in dying, whereas as other medical sources of suffering do not, perpetuates stigmatization of that group.
There is a very simple solution to addressing both of those legitimate claims of arbitrariness and inequality, which is to say that what we are aiming for is the alleviation of intolerable suffering as evaluated by individuals themselves and that the medical source of that suffering is immaterial and should not figure as a qualifying condition for MAID. What matters is suffering and a person’s own assessment of their suffering. That should be the only thing that is mentioned in the legislation, or else we run the risk of confirming the fear that people in the disability community have that there is somehow something special about their suffering that makes them and not others qualified for MAID. I think that is the first way in which this law should be amended in order to address legitimate concerns of arbitrariness and inequality.
There is a second way. I would like to end my remarks by addressing the second perhaps deeper way, which has been voiced by people in the disability community but elsewhere as well. We have heard testimony from people who say that the source of their suffering, though rooted in a medical condition, is also contributed to greatly by the way in which their condition is dealt with in the health and social services systems of the provinces that they live in.
We also know that many of the conditions that might be included if mental health, as I think it should, were to be included are ones that are not distributed in an even manner across the population. To put it more concretely, research into mental health has told us that poverty, discrimination and childhood abuse can be powerful causes of some of the mental health problems that people face in later life and that cause them intolerable suffering.
We need as a society to ensure that people are asking for MAID because their suffering is intolerable taken in and of itself and not because it has been generated by social determinants that we can, as a rich, prosperous society, address through policy. Some of that policy would necessarily be upstream. It would be social policy addressing some of these causes — discrimination, poverty, marginalization, violence, et cetera — which lies outside the scope of this particular bill but should nonetheless be part of our total picture of what we need to do. Within this bill, I think there are things that we —
The Chair: Professor, can you please wind up?
Mr. Weinstock: I am wrapping up.
There are things we can do to address the issue as well, which is to expand the range of expertise that we call to the bar in order to determine whether there are social fixes that can be proposed to a claimant in order to address their suffering, so specialist social workers and specialists of that kind might also be brought to bear.
I’m sorry I took a little longer. I was going freestyle off my notes. Thank you very much.
The Chair: Thank you very much.
To all the panellists, I want to say thank you for your patience this morning. It has been unusually difficult today. Thanks for your patience.
Mr. Fowler, you and I both had to get up very early this morning. These are the challenges of living in a great country.
Senators, we will start with questions. We will have the sponsor of this bill Senator Petitclerc start.
Senators, because of the challenges we have had this morning, we’ll have to cut the questioning to four minutes each. We will go on until 11:30 today.
Senator Petitclerc: My question is for Mr. Ménard, of the Barreau du Québec. Thank you, Mr. Ménard, for being with us and for taking the time in your presentation to emphasize the importance of dignity, the right to autonomy and the ability of individuals to make decisions about their own lives. This brings me to my question. You yourself talked about these safeguards, and you seem to be saying that there may be too many of them and that they are unnecessary. However, it is the responsibility of the government to establish these safeguards. As you have heard here today, some groups, organizations and individuals are saying that there are not enough safeguards; for example, 90 days.
I want to hear from you on this: how do you strike that balance? What do you think of the safeguards that are currently in place, and what would be your position on that?
Mr. Ménard: First, the safeguards we currently have in place have proven their worth. The Quebec law has been in place for almost five years; there have been no abuses, and nothing has happened that should not have happened. Justice Baudouin evaluated all of this as well, and she did conclude that the system has proven its ability to detect cases; those who must pass do, those who don’t meet the conditions, don’t pass. I don’t think there’s any need to add to that.
Secondly, Justice Baudouin took a completely correct approach to this issue, an individual approach, based not on a category of persons, but on each individual, to see what each person experienced as life conditions and life experience, and the reasons why a person seeks medical assistance in dying.
I think that this individual evaluation should remain. It has proven its worth. No one has been improperly excluded or included in the process. I think it is important to maintain these criteria. The introduction of two groups, because of the basic criterion of reasonably foreseeable death, is likely to generate all sorts of difficulties. There is no agreement on the definition of reasonably foreseeable death. In 2016, when Bill C-14 was being considered, it was not known what it was. Nor do we know now what it is. It is a non-operational criterion that will lead to more incongruities and dead ends. On behalf of Mr. Truchon and Ms. Gladu, I have successfully attacked the law on those grounds. I would be prepared, as early as tomorrow morning, to attack the current text of Bill C-7.
Senator Petitclerc: Do I still have a minute, Madam Chair? How do you respond to those who say that one group spoke at the time of the consultations and said that the second part, with these specific safeguards, was necessary and responded to concerns and a need for balance?
Mr. Ménard: There is no balance to be found in this. Balance means that each case is treated individually. I think the balance is there. It is not about group balance. People with disabilities are not better or worse off than the rest of the population. They must be treated like everyone else.
Senator Petitclerc: Thank you.
The Chair: Thank you, Mr. Ménard.
Senator Carignan: My question is for the Barreau du Québec and the Canadian Bar Association, but mostly for the Barreau du Québec. In your brief, you say that the exclusion of mental illness is discriminatory and should be eliminated. However, you send the message that we need to give greater thought to the issue of mental illness. We are stuck with this bill. I, too, think it is unconstitutional on the issue of discrimination against people with mental illness, but on the other hand you say we need to think more about it.
Should there be a sunset clause that would make this exclusion last for a maximum of one year, for example, to allow the provinces and the federal government to set criteria for these situations? Would one year be long enough or too short? This was already part of Bill C-14. We were supposed to do a study in June. The judge will certainly take into consideration the timeframes, both those related to Bill C-14 and the current timeframes, to determine the reasonableness of this sunset clause. I would like to hear your views on this.
Mr. Ménard: First, there was provision for consent to review cases of individuals with mental illness. Reading the preamble to the bill, it was clear that this was going to be studied further, except that in the legislation there is a contradiction with the preamble. Mental illness is excluded outright and for an indefinite period of time. There is an incongruity here as well.
The legislation cannot be passed as it is written now. It is an additional constraint for these people. This constraint is not justifiable and is not justified by the Carter ruling nor by the Truchon ruling in particular. When we look at the text of the bill proposed to us, we do not agree with that. The text of the bill is far too broad and far too imprecise, and it opens the door to a constitutional challenge.
Senator Carignan: What do you think of the one-year sunset clause?
Mr. Ménard: As a compromise, we would be prepared to consider the issue, except that there should be a provision within this sunset clause that provides that in individual cases the court may authorize medical assistance in dying, if necessary. This would prevent these rules from becoming entangled with the current rules. Under the current rules, only mentally ill people can access medical assistance in dying. They can and, in a limited number of cases, it will work. These gains should not be lost, but the Barreau du Québec is not opposed to further study of the issue.
Senator Carignan: And the Canadian Bar Association?
The Chair: I’m sorry, we need to continue.
Senator Batters: Mr. Beaudry, you wrote a very strong opinion piece that concluded with the statement that “Bill C-7 is too little, too soon.” You also stated in that piece:
The role of doctors and nurses in confirming eligibility for a “reasonable” suicide adds a veneer of objectivity to complex ethical considerations of quality of life, right to life, equality and systemic discrimination. Moreover, these medical practitioners need not have a particular expertise to assess and treat suicidality in the context of intolerable medical conditions. . . .
With this in mind, Mr. Beaudry, do you think safeguards are an effective way to mitigate the dangers posed to persons with disabilities by this bill, or should this bill be scrapped altogether?
Mr. Beaudry: Let me think about it for a moment.
I can only offer a few considerations, one of them being that if this bill is effectively opening access to medical aid in dying, which would be better characterized as physician-assisted suicide or euthanasia in this case because people would not be dying. They are not dying. That’s the point. They can choose to live, but they opt to die. So the safeguards that would be needed for this bill to protect people are much more substantive than the ones that are actually there right now. Of course, one way to go, which has been the way that, for instance, some people in the disability community have taken is to say, well, let’s keep the door more narrowly shut. As Professor Weinstock just said, a lot of people are discussing whether we should open the door, close it completely or open it more or less. My research is about the fact that we are discussing opening and closing the door of a building and there is no roof on the building. Those are social rights, and nobody is really talking about that, and that is what I am interested in.
Senator Batters: Okay. Mr. Beaudry, I’m just going to quickly go on to another aspect.
Three UN human rights experts recently stated in their report about the expansion of MAID in non-terminal cases, “Disability should never be a ground or justification to end someone’s life directly or indirectly.”
The vast majority of Canada’s disability community is united in their condemnation of Bill C-7, claiming that it promotes stereotypes, ableism and enshrines in law the message to persons with disabilities that their lives are not worth living. Could you please briefly provide us with some information and, if required, maybe you could get us something after this meeting if possible, how this legislation impacts the section 15 equality rights of persons with disabilities and why you think it would not be saved by section 1 of the Charter?
Mr. Beaudry: Yes, indeed. I like to think slowly about these things, and I think we are rushed now. I will be happy to follow up. But to give the beginning of an answer, the idea behind the UN experts in saying that it was discriminatory is that people with disabilities are being targeted as one of the eligible groups. They are being targeted by the bill in a way that no other non-disabled Canadians are. Of course, you could say, “Well, they have to be severely disabled, there is a seriousness to it, there is a decline in capacity.” That is still a very large population that will soon be welcomed to that building that I’m saying metaphorically has no roof on it, and a population that has been historically a victim of discrimination. That is the section 15 argument based on differential treatment.
The Chair: Thank you.
Senator Plett: Mr. Robertson, thank you very much for your testimony. I’m indeed saddened to again hear that the Indigenous consultation on a bill dealing with life and death has been so inadequate. It’s amazing that the government still does not fully understand the issue by leaving out such a critical perspective.
I have two questions for you. The first deals with conscientious protection for Indigenous communities. How important is it, Mr. Robertson, that conscience rights are expressly protected, from an Indigenous perspective?
Mr. Robertson: Thank you very much, Senator Plett, for your question. I think it’s extremely important. The considerations I spoke of during the submissions today put Indigenous people, first of all, in a very unique category, and unique is not beneficial.
When you have the actual discrimination from the health care system itself being applied to Indigenous people, there is a very long, historical mistrust of the medical system in Canada toward Indigenous people, so you’re dealing with a power imbalance before you even implement the bill of MAID, and I’m not suggesting that there aren’t some principles within MAID that are very specific and would apply to Indigenous communities. Again, I want to stress it’s not homogenous across the board in terms of the perspectives.
I think it needs to be strongly considered with respect to the conscientious protections. We talk about guidelines, and we talk about considerations that can be given in terms of alternates, your suffering, and what can we do to alleviate some of those sufferings. The problem is that this bill is drafted in the sense that people live across the street from a hospital or have access to health care services, and that’s not the reality. Those kinds of considerations don’t come into play and don’t have any factor in terms of considering what the alternatives are. I think it’s extremely important to look at that perspective, which has been overlooked.
Senator Plett: Thank you. I do have another question. Thank you very much for that answer. I know the chair is being very disciplined in giving us the proper amount of time and not more.
Mr. Robertson, you referenced a quote from Tyler White of Siksika that the expansion of MAID sends a contradictory message that some individuals should receive suicide assistance while others suicide prevention. Could you elaborate on this point and expand on the impact this legislation could have on suicide prevention efforts in the Indigenous communities?
Mr. Robertson: It’s well-known, unfortunately, that suicide rates in Indigenous communities are well in excess of what you would look at in any kind of westernized nation, so there is a very large effort in First Nation communities on the prevention of suicide. This does kind of contradict that. When we talk about the implementation of what we consider to be mental health issues, obviously that comes into play from an Indigenous perspective.
Now, overlaying that are some very strong cultural perspectives from Indigenous communities that have to be taken into consideration. It is almost like creating a surge of awareness and, at the same time, allowing people to consider, again for whatever reasons, that assisted dying might be an option. You can see how in small, isolated communities this is going to cause some extreme tension.
Senator Plett: Thank you very much, Mr. Robertson.
Senator Harder: Thank you to the panel.
I have two questions which I’ll ask of Maître Roberge. One concerns the legal vacuum that would be created if we adopted what some witnesses have suggested, and that would be to allow the Quebec Superior Court’s suspension of the invalidity to lapse and thereby creating a legal vacuum. I would like you to comment on the practical challenges of such a legal vacuum. What would it mean for Canadians outside of Quebec who may seek MAID despite their death not being reasonably foreseeable? I presume they would have to seek a constitutional exemption, and that would be a costly procedure both in time and money.
My second question is also to Maître Roberge with respect to mental illness. According to Minister Lametti, the exclusion of persons whose sole medical condition is a mental illness is grounded in concerns from experts who disagree on whether mental illness can ever be found to be irremediable and, more fundamentally, on whether and how MAID could be safely made available for such individuals. Given the lack of consensus among experts and the serious nature of these concerns, wouldn’t the most cautious approach be to maintain the exclusion until the matter has been more sufficiently studied?
Mr. Roberge: Thank you for your questions.
On the first question, it’s not really the mandate of the CBA committee on end of life to provide a legal opinion on the consequences of Bill C-7 potentially being rejected. I would just say that obviously the Truchon decision in Quebec only invalidates one part of the federal law, namely the concept of reasonably foreseeable death as an eligibility criterion. That said, the CBA recognizes the need to harmonize MAID legislation across the country, but the purpose of our comments today is really to identify concerns with respect to Bill C-7.
I know we are short of time, so I’m trying to address quickly both of your questions. The second was pertaining to the rationale put forward by the government to justify the exclusion of mental disorder from the bill, essentially raising risks related to those cases. Well, in Carter, the Supreme Court of Canada stated that risks are “. . . part and parcel of our medical system.”
While we recognize there are specific challenges related to MAID and mental disorders, there is evidence that competent professionals can assess vulnerability on a case-by-case basis, so in our view, respectfully, removing risk by cancelling out people with mental disorders cannot be the solution. The choice of means to respond to this balancing exercise is up to Parliament, but we’re really advocating for a case-by-case approach that will take into account the diversity of circumstances among the group of people with mental disorders.
Senator Dupuis: My first question is for Mr. Ménard, and my second is for Mr. Robertson, of the Indigenous Bar Association.
Mr. Ménard, someone just referred to the lack of consensus. The minister often tells us that, since there is no consensus, he chose to include this rather than what is in Bill C-7. Isn’t it a problem to base the protection of the constitutional rights of individuals, as the Carter decision says, on the fact that there is no consensus, rather than on the fact that we want to protect the constitutional rights of individuals?
Mr. Ménard: It is a matter of political choice. The minister has indeed done some nitpicking. It is a bad approach, because it is not based on solid foundations. There are a few things that are based on a solid foundation, but most of them, such as the 90 days and mental health, do not have a specific scientific or practical basis. At that point, it’s thrown up in the air like a balloon and, unfortunately, it’s a bad approach that seems to creep in. This approach would need to be reviewed and consolidated, and work should be done on the lessons learned from the Carter and Truchon rulings, which have a solid foundation. What the minister is proposing is absolutely unknown. We do not know where the 90 days comes from. Mental health... The entire population that has a mental health problem is excluded. So that raises important questions. Perhaps my colleague Marie-Nancy could add something.
Mr. Paquet: Indeed, in this respect, it is important to mention that neither in the Carter decision nor in the Truchon decision, despite the overall analysis of the points of view, is there any mention of the need to collectively exclude certain populations in order to protect rights. This even goes against the principles that have been established in this context. In the Truchon decision, in particular, the judge is very clear when she states that it is the individual basis that will make it possible to ensure real protection of rights, and not collective exclusions. It is important to note this.
However, in the current context, where, as Mr. Ménard mentioned, the preamble announces that the matter will be the subject of further discussion, this subject has not been addressed by the bar, and we do not have a clear position to convey to you. However, it is clear that the blanket exclusion of a person with a disability on the basis of mental illness contravenes established rulings, including the Carter ruling.
Senator Dupuis: Mr. Robertson, you talked about Indigenous communities as being diversified and not homogenous, and that is very well understood...
If you have an opportunity to elaborate on that at another time, Mr. Robertson—and this is what we have heard from other witnesses—do you think the issue of health care, within the continuum of health care related to medical assistance in dying, should be under the authority of each community, just to respect that diversity of views on this issue?
Mr. Robertson: Thank you very much, Senator Dupuis.
As sometimes indoctrinated into Indigenous communities, there is a historical context that the Canadian government has assumed a patriarchal role over Indigenous communities, and harking back to the original relationship that each community is governed as a self-determining nation, they should therefore have the ability to control both whether or not MAID applies in their circumstances and in their territories and whether it is applicable under their own laws. They should be able to interpret that as well.
There should be guidance on whether this is overarching. Obviously, the Charter has application to all Canadians, but there is certainly space within Indigenous laws and perspectives to interpret what that means and how it gets incorporated in their own communities, especially under the guise of the historical discrimination and colonization of Indigenous people and those practices and procedures. You can go through residential schools and what’s happening now in terms of the health care. There is a very long history in terms of harm being done to Indigenous people under the purposes and guise of health care. There is something that needs to be carved out, and it is up to the individual communities to determine how that applies to them.
Senator Boniface: Thank you to the panellists.
My question is to Professor Adams. In a brief to our committee, the B.C. Civil Liberties Association suggested that the mental illness exclusion should be removed completely, but they recommend, should the exclusion remain in the bill for any reason, that it be moved to the safeguards of the “not reasonably foreseeable death” provisions. Their reasoning for this was, by situating the mental illness exclusion in this section of the legislation, the government would ensure that the legislation does not discriminate or stigmatize persons with mental illness by legislating that mental illness is not an illness, disease or disability. They suggested, then, that the safeguard to be added to clause 3.1 of Bill C-7 would read, “The medical practitioner or nurse-practitioner must be of the opinion that the person does not have a mental illness as their sole, underlying medical condition.” Could you comment on their recommendation and, particularly, whether you would agree with that?
Mr. Adams: Thanks for the question, senator.
I’m not sure I was able, just in listening, to follow completely the nature of that recommendation, and I don’t have it in front of me, so I apologize for that. I think the suggestion was that if you were to remove or partially remove the exception for individuals with mental illness, how would you treat them in the legislation? If I’ve followed along, the suggestion that maybe you would treat that category like others whose death is not reasonably foreseeable is sensible to me.
To the extent that there are differences between individuals who are proximate to death and individuals who are suffering but whose death is not proximate, it seems to me there are reasonable arguments that those are different kinds of communities that require different kinds of procedures. But I see no rationale to distinguish whether mental illness places one in one category or the other. To me, proximity to death is a reasonable dividing line. Origins of suffering is not.
Senator Boisvenu: Thank you to all our guests and witnesses, who are providing us with very relevant information. My question is for Mr. Ménard. To begin, I know that you have been affected by the disease recently, and I would like to wish you the best of luck for your recovery. Mr. Ménard, does the bill offer an opportunity to people who suffer from a degenerative brain disease, such as those who suffer from Alzheimer’s? Is the bill clear? Can these people get medical assistance in dying?
Mr. Ménard: The answer to your question is no, because in principle, people with Alzheimer’s disease, at the onset of the disease, are still in good enough condition to decide their fate. However, as the disease progresses, that ability is lost. It can be lost a year, two years, or three years before the final deadline. So I think the person is no longer able to consent until the end.
Senator Boisvenu: Yesterday, we were informed that Quebec was about to legislate to amend its law to include these diseases at a later date. Do you think this bill should be amended along two lines? The first would be to include the possibility of proxy authorization, or there could be a component that would recognize provincial specificities. For example, Quebec is ahead of the curve in terms of social adherence and consensus. Would it be a good idea to leave some aspects of the implementation of Bill C-7 to the provinces? I am thinking in particular of degenerative brain diseases. If a province has taken a step forward in terms of the legal framework for implementing the legislation for these individuals, could the bill not provide for the delegation of this responsibility to the provinces?
Mr. Ménard: This poses a difficulty because if we are talking about delegating responsibilities to the provinces, there could be different laws from one province to another, and the difference is difficult to justify on these issues. It would not be unthinkable, eventually, but it would be difficult. As for recognition for moving forward on this, it is difficult to imagine a province that could, like Quebec, include Alzheimer’s disease.
Senator Boisvenu: What about an approval by proxy?
Mr. Ménard: The problem with advance directives is that we do not know whether or not the person changed their mind before falling ill, and we do not know whether the advance directive was made before the illness took effect. We also do not know whether the person would still agree with the directive. As such, it clearly compromises other rights, such as the right of people to change their mind and refuse. We know, in fact, that a number of people have changed their mind between the time they requested MAID and the time that they were to receive it. People with Alzheimer’s disease could no longer change their mind. This raises significant problems. I am not saying we should not consider this issue, but we have to think long and hard about it, because it would open the door to all kinds of things, such as questions about who could decide to end their lives, under what conditions and in which situations. We know that terminal stage Alzheimer’s does not make people unhappy. Simply put, they have no awareness whatsoever. So this raises all kinds of difficulties.
Senator Boisvenu: Thank you.
The Chair: Thank you, Mr. Ménard.
Senator Keating: My question is for Mr. Roberge of the Canadian Bar Association (CBA). Mr. Roberge, first of all, thank you very much for your presentation and for the position taken by the Canadian Bar Association. You raised an issue that no one else has raised and that has been of great concern to me from the outset. Those who provide MAID, even in my province of New Brunswick, have said that they consider it impossible to impose a restrictive measure requiring a second opinion from an expert. Even in my province, obtaining a specialist’s opinion for certain illnesses is simply impossible. I would therefore like to hear your views, if possible, on the following. The Supreme Court, as well as the Superior Court in Truchon, have both ruled that people have a constitutional right to determine when their suffering becomes intolerable. Therefore, do you believe that the measure requiring a second expert opinion infringes on an individual’s constitutional right to MAID?
Mr. Roberge: Thank you for your question. The CBA noted that the specific expertise provision was amended at third reading to make this criterion more flexible. As a result, the bill now requires a consultation with a specialist who has that expertise, rather than with one of the two practitioners assessing the eligibility criteria. While we acknowledge the bill’s greater flexibility in that regard, we still have concerns about access, because, as you said, medical resources are even more limited in certain communities, regions and provinces. Our concern here, of course, is that without timely access to specialists, some people may remain in a state of prolonged suffering and be forced to continue living in that state. The Bar believes that this type of impact would be inconsistent with Carter, as, in fact, the Superior Court suggested in Truchon. This raises important issues with respect to the principles of fundamental justice and could lead to constitutional challenges, as it would have a disproportionate effect on certain categories of people.
Senator Keating: Thank you very much.
Senator Pate: My question is for Mr. Robertson of the Indigenous Bar Association. You spoke about Mr. Sinclair and Joyce Echaquan and their experiences in the system. A witness yesterday talked about the concern that the government has spent years contesting and appealing court and human rights tribunal decisions, including in situations where the government spent as much as $100,000 in legal fees to avoid paying $8,000 for a First Nations child who required braces. In light of this, could you please elaborate and express for us any concerns you might have about the government’s decision to make Bill C-7 a priority, particularly in light of the fact that it will operate within a health care system where systemic racism, poverty and ableism remain significant problems?
Mr. Robertson: Thank you very much, Senator Pate.
As you can imagine, there is a litany of concerns not only with the current health care system and the health provisions provided to Indigenous people across Canada, but also in layering the impact of Bill C-7 and what that will mean to First Nation communities and many of the things discussed today in terms of how the Charter applies, the balance of interests between different groups and how it’s interpreted. One of the conditions we talked about was that it’s on a case-by-case basis. Regrettably, when you start to dig into the case-by-case basis, you will find yourself in situations where Indigenous people are faced with incredibly dire situations within their communities with living conditions where communities have had boil water advisories for 35 years or more, where the suicide rates, as we have already discussed, are extremely high or there is very little economic opportunity. Health conditions are a challenge at the best of times. The concern that is created by C-7 is not only the assistance in dying, but the application of how that works.
We have also talked about jurisdiction and how that gets applied, and it would appear that the provinces and territories are going to have control in terms of how that is played out into the health conditions and the health care system. That will also be affected and impacted by funding. There will be a huge discrepancy in the funding and how this gets rolled out. We just talked about how the province of New Brunswick has difficulty providing its citizens with the specialization required to facilitate this. Well, if New Brunswick as a province is having difficulty, you can imagine how that is going to be relayed into many of the northern communities, Inuit, First Nation and Métis communities.
It’s one thing to pass the law, but it’s the logistics of how it gets applied into these 633 First Nation communities across Canada. Again, layered on top of that is that there has been no substantial and meaningful consultation on what that is going to look like. I know that guidelines and regulations follow the act, but this is concerning. It has been expressed by many different groups, including health care, constitutional law and Indigenous groups looking at this who have said they haven’t been properly consulted. We have many concerns culturally, historical grievances we talked about, as well as a mistrust of the health care system itself. How that gets applied to First Nation and Indigenous communities across Canada is unknown, and the unknown, unfortunately, creates fear. That’s the best way to try to sum up what Indigenous communities are thinking.
Senator Pate: Thank you.
Senator Griffin: Professor Beaudry, Bill C-7 has been described as expanding rights for some people at the expense of inequality for those marginalized by ableism, racism, classism and sexism, who do not have adequate access to health, social housing and economic supports. In your brief, you comment that “oppression has a habit of being packaged as a benefit for the oppressed.” Can you explain what you mean by that with regard to Bill C-7? Thank you.
Mr. Beaudry: Yes. Very briefly, I don’t do very well at very quick interventions on such complex issues, but I will do my best.
The idea behind systemic oppression — and we’re becoming aware of it because the pandemic and because of what some of the people say about Indigenous communities, so we are aware that it exists. We are also aware that oppression is not something that is the deed of an evil wrongdoer who designed Bill C-7. Oppression is often the byproduct of long-standing negligence, long-standing short-sightedness and long-standing neglect of some communities.
I heard, for instance, the witness speaking on behalf of some Indigenous communities refer to a lot of social issues. To me, there are a lot of social needs that need to be responded to that are more urgent. I heard a lot of compassion for social needs for many groups: prisoners, people with cognitive differences, Indigenous people, people with other disabilities, et cetera. I hear a lot of concern for these people, and the way this concern is cashed out is by giving them access to a quick way to end their lives. And that might sometimes be the way to go — sometimes — but most of the time, our society should face the fact that all these groups have been socially neglected in vast ways that are not being attended.
So my contribution to this debate — I come back to my metaphor of the roof that is the social rights — is that we need to set up a system that really ensures that people don’t die socially preventable deaths of despair. I’m not talking about those who have advanced cancer and who don’t have any other options, but right now, Bill C-7 opens medical aid in dying. This is a very drastic, new legal medical mechanism of life and death in our society that is no small thing. It opens it up to people who do have the option to live, and I want to make sure, along with my fellow citizens, that if people do die, it’s not because of social neglect. Are we doing enough? We don’t think enough about that question in terms of what it would mean in terms of setting up basic thresholds, basic conditions, and safeguards of social care and support.
The disability community has a lot to say about this. They have been consulted in a rather pro forma fashion. More needs to be done. Federalism, the sharing of powers or social rights and their costs are all excuses that cannot constitutionally be used here.
Senator Griffin: Thank you.
Senator Miville-Dechêne: My question is for Mr. Roberge of the Canadian Bar Association.
Mr. Roberge, I wonder about the expert consultations, which are a necessary part of the safeguards with medical assistance in dying. I heard you say that this could be problematic from a constitutional perspective. I must admit that I also have my doubts, but for the opposite reason. Could not consulting an expert deprive patients of the choice or possibility to hear about a treatment if they have a complex illness and have not been able to consult experts recently? We are talking about safeguards here. The issue, then, is to inform patients who, if I understand correctly, have the freedom to choose.
I would also like to hear about what you told the House of Commons, namely your objection to paragraph 241.2 (3.1) (h), which stipulates that medical practitioners and patients agree that all treatments and means to relieve a person’s suffering have been given serious consideration. Some still feel that medical practitioners are being manipulated by saying that they had discussions and reached a consensus, which may not even be possible. But that is not one of the means being considered.
Mr. Roberge: Thank you for your questions. Regarding the specific expertise for diseases, the Canadian Bar Association recognizes that certain situations could warrant seeking the opinion of a medical specialist. For us, the difficulty and the issue are with the general obligation to consult those specialists, as Bill C-7 provides. We believe that this general obligation could create an obstacle for those applying for medical assistance in dying and living in communities where there are difficulties and long delays in seeing specialists. It should be noted that, for the time being, there is no such obligation to consult a specialist when someone applies for medical assistance in dying. However, in practice, there is evidence that it is up to the medical practitioner to determine their own level of expertise when assessing applications for medical assistance in dying, when receiving informed consent, and when deciding to ask a colleague for additional expertise if necessary.
I believe that this also perhaps raises the implicit question about whether this provision of the bill, namely, the medical practitioner requesting a referral to another expert, is an issue of criminal law, or of standards of care and provincial law. That is the position of the Canadian Bar Association.
Your second question was about the bill’s requirement for medical practitioners to acknowledge that the person applying for medical assistance in dying has seriously considered all the options. Much has been said today about the importance of the person’s autonomy in making this very personal choice for medical assistance in dying. From the perspective of the Canadian Bar Association, the medical practitioner’s role is to ensure that consent is informed. This involves discussing different treatment options. Ultimately, however, it is up to the patient to decide, once they have received all the information and been made aware of the risks.
With respect to the bill, the agreement between the medical practitioner and the patient is irrelevant in our view. What is important is that all means, all information, about the different treatment options have been discussed and that patients have all that information.
The Chair: Thank you.
I have a question for Mr. Robertson. Yesterday, we found out that the minister and officials had not carried out any race-based analysis. Based on your experience working with Indigenous communities, do you believe that access to disaggregated data, specifically race and Indigenous identity based, could improve the issues of culturally sensitive and equitable care and treatment as well as enable governments to better identify, acknowledge and address systemic racism in the health care sector among other social services?
Mr. Robertson: Thank you, Madam Chair, for the question. Two issues jump out at me when you ask that question.
I often speak to school groups and lawyer groups about how Indigenous people are the most studied in all of Canada. There are more studies conducted on Indigenous people than any other group, whether it be race or religion or however you want to define it. There is some value to that, but, obviously, there is a reason why they are so studied. I have an issue in terms of the motivation and how they are being studied.
I just wanted to interlace what you were asking with the response that was previously provided by Mr. Beaudry when he talked about certain aspects of our social systems that have been neglected. I would counter that by saying that Indigenous people have not been neglected. They have purposely been oppressed. If you look through the historical development of legislation dealing with medical procedures without consent, medical experiments being conducted on Indigenous people without consent, residential schools and all the harm that brought, the Sixties Scoop, these are very focused, legislated schemes adopted to oppress First Nations people. It’s not because they have been neglected.
When you bring along yet a further fleet of legislation dealing with something specific such as medical assistance in dying, it’s going to obviously raise eyebrows. People are going to be concerned about how it’s developed, who has been consulted and how it’s going to be implemented.
If you think there is value to specifically studying Indigenous people as to how we should implement that, then absolutely. I would do it not so much as a study but a consultation. Bring in Indigenous people, like they should in every aspect of legislation with respect to Indigenous people, and ask them, “How does this incorporate into your own values, into your own perspectives and into your own laws? How do we address these issues that are glaring in terms of social disparity, and how do we make it work for you and your communities?” That’s an informed conversation, and it’s meaningful.
Obviously, along with consultation goes accommodation. What can we change? How can we make it work for Indigenous communities? Don’t leave them on the sidelines until it’s too late and then enforce the legislation. It’s not going to work. We will have all kinds of issues, and there is going to be harm inflicted where people don’t want to inflict harm.
The Chair: Thank you very much, Mr. Robertson.
Senators, panellists, this brings us to end of the questioning and also the presentations by the panellists. I want to again thank the interpreters. I know that today has been really hard for them. The sound quality has been bad, but they have still soldiered on and worked hard so that we can hear all the witnesses.
To the panellists, all days are not like this, so I appreciate your patience. I want to thank you for your presentations, which will really assist us in our work, especially with Bill C-7.
I welcome our second panel, starting with Health Canada Health Care Policy Directorate panellists, Abby Hoffman, Senior Executive Advisor to the Deputy Minister, and Karen Kusch, Senior Policy Advisor. May I please ask you to make your presentation? Thank you.
Abby Hoffman, Senior Executive Advisor to the Deputy Minister, Health Canada: Thank you very much. Thank you, senators, for the opportunity to speak to you today on the subject of federal monitoring and our annual report.
As you may know, in July 2020, Health Canada published its first annual report on medical assistance in dying in Canada, based on data for 2019 collected under the federal monitoring regulations required by Bill C-14. Four interim reports had been released previously using information supplied voluntarily by provinces and territories.
Let me start with some background on the current monitoring regime and the key considerations determining the type of data we collect and publish.
Monitoring is a key activity in virtually all jurisdictions that permit assisted dying. The importance of monitoring and public reporting were underscored in the judicial, consultative and parliamentary processes leading to the passage of the original MAID legislation in 2016. To that end, Bill C-14 required the federal Minister of Health to develop regulations and implement a pan-Canadian monitoring regime on the delivery of MAID in Canada.
The aim of the federal monitoring and reporting system is to provide accountability and transparency to Canadians on the real-world implementation of Canada’s MAID framework. This includes monitoring the application of the eligibility criteria and safeguards, identifying trends and helping to determine whether the legislation is meeting its objectives. This is a reminder, importantly, that provinces and territories and their professional regulatory bodies in each jurisdiction retain responsibility for oversight of compliance with the law in individual cases.
When it comes to the mandatory collection of data, the monitoring regulations must be clearly rooted in the provisions of the law. That means two things: first, that information can only be collected from physicians, nurse practitioners, and pharmacists, as these are the individuals explicitly exempted from prosecution in the Criminal Code; second, the information these individuals are required to submit must connect back directly to the provisions of the legislation, specifically, the nine eligibility criteria, the process for determining eligibility and the application of safeguards.
In addition, as medical practitioners and pharmacists are the sole source of the information, the information collected must be aligned with what these health professionals can reasonably be expected to know about individuals in their care. This means there are limits on the nature and scope of socio-demographic data and personal information about applicants for MAID that can be collected from providers. Of course, from purely practical standpoints, we needed to avoid placing an unreasonable administrative burden on providers and we needed to balance the desire to collect a broad array of information with respect for the privacy of individuals seeking MAID and provider-patient confidentiality.
With those considerations in mind and after very extensive consultations with provinces and territories, providers, data experts, researchers and other interested parties, the federal regulations for the monitoring of MAID came into force in 2018. These regulations authorize Health Canada to collect information about people seeking MAID, such as their age, gender, health insurance number, underlying conditions and nature of their medical condition and suffering. Information is also collected on access to and use of palliative care and disability support services and from the providers specifically on key elements of the MAID legislation, including how the practitioner has applied the eligibility criteria and the procedural safeguards.
The data on the 7,336 requests, the 5,631 actual MAID deaths involving 1,271 practitioners formed the basis of the findings that are contained in that first annual report on MAID that I mentioned.
I will comment on how we think the MAID monitoring regime can be improved. First of all, I think almost everyone is aware, or anyone who’s been associated with MAID is aware, that we would all like to have more information. There are several routes to acquiring those insights.
The first involves making improvements that can and will be made to the current monitoring regime. Quite specifically, as an example, right now our collection of information is based solely on written requests received by physicians and nurse practitioners. This has resulted in some significant data gaps simply because preliminary assessments may be carried out by other professionals or a care coordination service, and the consequence is that formal written requests may only be filed toward the end of a MAID assessment process. As a result, we may not know about earlier, unreported requests that are turned down or withdrawn and the reasons for those ultimate decisions.
One of the amendments to the federal monitoring system proposed in Bill C-7 would allow for the collection of data on all assessments for MAID, not just those formalized in a written request. These changes will provide a fuller understanding of who has requested MAID, their circumstances, why they were or were not deemed eligible, and how many applications for MAID are ultimately withdrawn and at what stage in the process and why.
Secondly, following the enactment of Bill C-7, assuming that occurs, we will revise the MAID monitoring regulations to reflect the amended legislative framework. It is our intention again to consult with a wide range of stakeholders to inform those amendments.
I will note specifically, given the concerns expressed by members of the disability community, that the updated monitoring regime must enhance our understanding of MAID in the context of disability, vulnerability and autonomy.
At the same time, these changes must take into account the considerations I mentioned earlier — the linkage back to the legislative framework and the protection of privacy rights of patients and providers. But we know the significantly expanded safeguards for applicants will, of course, be reflected in the new monitoring regime.
We would like to have authority to ask about all kinds of services that may be offered, the relationship to social services, the applicants’ personal circumstances and so on, and we will have to figure out how best to get access to that information, while, again, respecting privacy.
I want to conclude by underscoring that while data collected through the MAID monitoring system provides important insights into MAID cases across Canada, it cannot be the sole source of information. Based on our knowledge and experience with MAID implementation to date, we know additional research is needed in several key areas, including things such as the evaluation of MAID delivery models and perspectives on MAID from the standpoint of requesting individuals, their families, practitioners and societies. Case reviews, for example, could be the source of additional information, a lot of which is collected by provinces and territories. Some of this research is already under way in academic settings and in provider communities of practice, and we will consider ways this work could be further strengthened and supported.
Thank you, Madam Chair. My colleague from Health Canada, Karen Kusch, and I look forward to responding to any questions about the monitoring process and our first annual report. Thank you.
The Chair: Thank you very much, Ms. Hoffman.
We will now hear from Dr. Gus Grant. He is the registrar of the College of Physicians and Surgeons of Nova Scotia. He brings the unique perspective of a regulator, plus an expert physician on the issue of conscience rights.
Gus Grant, Registrar and CEO, College of Physicians and Surgeons of Nova Scotia: Thank you. I am grateful for the opportunity to provide the perspective of a medical regulator.
All medical regulatory colleges have a legislated mandate to serve the public interest, and that’s a broad term that embraces both public safety and the maintenance of the public’s confidence in the medical profession and its regulation. The daily work of the regulatory colleges is to set the standards of the profession —
Mr. Palmer: Mr. Grant, we lost your sound. We were hearing you clearly and you’ve cut out. Perhaps we could go on to the next witness while we try to get Mr. Grant back on-line.
The Chair: We will go to the next witness, Dr. Raphael Cohen-Almagor. He is the Chair in Politics at the University of Hull, United Kingdom. He has published extensively in the fields of political science, philosophy, law and ethics, including medical ethics, and has knowledge of legal systems and MAID data in Belgium and the Netherlands. Dr. Raphael, please start.
Raphael Cohen-Almagor, Professor, University of Hull: Thank you for the opportunity to speak to you today. This is a privilege. I sent you some remarks before, so I’m going to base my testimony on these papers. Please consult them for a more elaborate version of what I’m going to say today. I send you greetings from England today.
In these papers, I have summarized what I’ve discovered in a survey over the last 30 years looking at end-of-life issues in several countries — I’ve been to nine countries studying end-of-life practices. For me, as a person, because we’re talking about end-of-life issues, matters of life and death, it is very important for me to go to hospitals and research centres and to speak to patients and all the people around the patient’s bed.
I think what we need to do is to try to find a way between different considerations that are equally important.
The first one is the autonomy of the patient. We as a liberal democracy would like to have a voice for people to decide the moment of their death. This is a crucial consideration in liberal democracy, and I actually titled one of my books The Right to Die with Dignity: An Argument in Ethics, Medicine, and Law. So I give it a lot of emphasis and it’s an important consideration.
The second is the dignity of the patient. Until the very end, we would like to see the patient perceiving himself or herself as a human being, not as a test case or a number or someone who occupies the bed. For that purpose, this person should enjoy the respect of all the people around him or her. These two very important considerations should be balanced against two no less important considerations.
The third one is the duty to prevent abuse.
The fourth one is the state duty to protect vulnerable populations.
So we have to balance one against the other, the autonomy of the patient and the dignity of the patient, and these should be balanced against the duty of preventing abuse.
I should tell you that for a number of years I supported euthanasia, and then I went, for the first time, to the Netherlands. I discovered from the word “go,” as I landed, that there were things that were not reported in the literature, and I witnessed abuse — the abuse of physicians shortening the life of patients and of patients that are put to death against their will or without expressing any will. This is something, of course, that we should prevent. We should be cognizant of the fact that when a physician and nursing care team have the power to decide the life and death of people, we have to make sure that everything in terms of monitoring, records and documentation is safeguarded, promoted and reserved so we can prevent abuse from happening.
The second key research finding is the importance of maintaining trust between physicians and patients. In Canada, as in Britain, the Netherlands and Belgium, you have a general practitioner who has consolidated a longtime relationship with the patient. Sometimes they have known the patients for 20, 30 or more years. It’s very important when a patient comes to the end of life that he or she will be able to trust the physician. Therefore, one of the things that I think a physician should not do is to propose or offer patients death. I don’t think that’s part of the realm of physicians. I think that this has to come from the patients. In a country like Canada, where you have had MAID for some time now, I am sure people know about the availability of MAID. If there is a reason for the patient not to raise this issue, the physician should not raise it. Otherwise, it will compromise the relationship between the patient and the physician, and maintaining trust is an extremely important factor.
The third key research finding is the importance of palliative care. I know there will be some occasions in which there will be strong-minded individuals who would like to decide their destiny and decide the moment of their death. For them, palliative care is not going to be the solution. But for many other patients, palliative care can be a vital factor for them to decide whether they want to continue living or to die, because many people are afraid of suffering and pain. We have the knowledge of how to soothe pain and deal with suffering, so if we are able to eliminate the issue of suffering, it is possible to avoid euthanasia. It will be possible for patients to continue living.
The next key research finding is the prohibition of terminal sedation. In England, where I’ve done a survey of physicians, the term “terminal sedation” is not even in use. They don’t use it. We have to be careful not to sedate people to death but allow people to say farewell to the loving people around the bed. I think it’s extremely important. When you see patients without their knowing that they are going to die at the end of the process and without having the ability to say farewell, I would say this is wrong. I would say avoid terminal sedation. Avoid the terminology and, of course, avoid the practice.
Another key research finding is the issue of advance directives. They should be taken care of seriously and carefully. I’ve seen at least 60 different versions of advance directives, from fluid and general ones, like “I would like to die when I don’t know my children,” to very detailed ones. The problem, of course, comes when we have advance directives from, for example, patients with dementia who say that they want one thing when they are in a certain stage of the disease, and then when they advance to the next stage, they no longer want what they pronounced in the advance directive, and the doctor or the care physicians are now going to abide by that advance directive, although what the patient wants now is very different. So we have to be cognizant of changes that happen in the minds of patients as they progress with the disease.
Another key research finding is the paradox of dementia. I oppose any form of euthanasia and physician-assisted suicide for non-competent patients, especially for patients with dementia. I explain why I’m opposed to that in the little table that I provided. I say that in every stage of dementia, it’s going to be problematic to euthanize patients.
I also found that children require extra protection. They are extra vulnerable because their mind —
The Chair: Dr. Cohen-Almagor, can you wrap up, please?
Mr. Cohen-Almagor: Yes.
Children require extra protection. I also spoke about the role of the patient’s beloved people, not only family but also close friends. I warned against organ donations at the end of life, meaning planning for patients to give away their organs and to exert pressure on them to give away organs.
Lastly, I warn against this tendency — intoxication — about euthanasia that you are putting certain rules and certain laws, and then pushing the boundaries further and further away from what the legislator spoke about at the beginning. The boundaries of euthanasia have become extended to non-terminal patients, to patients who are suffering from psychological problems, patients that are tired of life and other incompetent patients.
Thank you very much.
The Chair: Thank you very much. May we go back to Dr. Grant? I think Dr. Grant’s issues are fixed. Please continue.
Dr. Grant: The role of the regulatory college is to serve the public interest. That’s a term that means both serving public safety and maintaining the public’s confidence —
Mr. Palmer: Dr. Grant, it happened again. We lost your sound again. Senator Jaffer, next witness, please?
The Chair: Senators, we’ll go to the next witness: Dr. Jaro Kotalik, bioethicist and professor at Lakehead University, author of Medical Assistance in Dying: Challenges of Monitoring the Canadian Program. Doctor?
Dr. Jaro Kotalik, Professor, Northern Ontario School of Medicine, as an individual: Thank you, Madame Chair.
I have been in medical practice in Canada for over 45 years, often caring for very ill patients or people near death. I have served as an oncologist and later director of the regional cancer centre in Thunder Bay. After more university studies in medical ethics and law, I moved into this field. I am presently a professor in Northern Ontario School of Medicine, and a researcher and consultant with the Centre for Health Care Ethics at Lakehead University.
My recently published study, as you mentioned, deals with the monitoring and reporting on the national MAID program. I had to conclude that the program is not being monitored as required by law, but at this time I just want to address a couple of concerns about Bill C-7. There are two issues I will raise. O
Bill C-7 creates a new track of eligibility for persons whose natural death is not reasonably foreseeable. The problem is that the way this new track is presented in the law would result in thousands of Canadians being put in a precarious state of entitlement to have their lives shortened, perhaps even by decades. A young person recently diagnosed with diabetes or an older person with arthritis, a person with a long-standing disability or with a recent debilitating injury — they will be all equally eligible for assisted death. Why? Because these are all serious and incurable conditions, often leading to the irreversible decline in capacity, and these are two main eligibility criteria for this intervention. Individuals only need to add that they experience intolerable physical or psychological suffering that cannot be relieved under conditions acceptable to them. In other words, they can become instantly eligible for medically administered death even if they did not actually receive treatment.
Furthermore, the mere rule that any medical condition that is serious enough and produces suffering is sufficient reason for access to MAID is itself a source of profound pressure that will negatively affect the will to live. This is why people with disabilities voice disapproval of Bill C-7. In fact everyone, I believe, not just people with disabilities, would be at risk. The current Bill C-7 could be actually seen or read as a suicide-promotion document and would complicate any effort to have a suicide prevention program in the country.
I suggest that it should be possible to amend the bill in such a way that it could accommodate those infrequent situations where people have truly unbearable and untreatable suffering, and justifiably access medical death even if they are not at the end of their life. At the same time, the new law should not be so comprehensive and generally applicable that it would signal, for example, people who are seriously ill, the elderly and those dependent on others for care — and we have millions of those — to think and feel that they are living in a society where they are expected to choose death, or a society where medical and nursing practitioners feel pressure to provide death on demand.
In my view, such an amendment, which could help the situation, would be to say that medical assessment must be followed by authorization obtained from a consent and capacity board, or from a similar tribunal, at which time an evidential review of all the circumstances that may have had impact on the patient’s application for death will be reviewed.
I will now turn my attention to the second topic: freedom of conscience for all medical and health professionals whose moral and professional commitment does not allow them to be associated with MAID even by direct referral to a MAID practitioner.
In spite of the statement in the law of 2016 that nothing in this MAID act affects the genuine freedom of conscience — guarantees the freedom of conscience — it remains the fact that practitioners are under pressure, especially in some provinces, by administrators and medical colleges to set aside their deep-held convictions. This attitude, I believe, arises from a common fundamental misunderstanding of what conscience is.
Conscience is not just some luxury which physicians claim and can be asked to suspend in order to satisfy patients’ requests. Conscience is a chief motivator and affects the behaviour of the physician constantly: to be altruistic rather than selfish in a patient’s care; to be truthful rather than stretching boundaries when billing for services; to report child abuse rather than looking the other way — in all the situations where the physician is motivated by a well-functioning conscience.
In medical school, we teach professionalism, which really in substance means that we are trying to educate and fine-tune the student’s conscience. We have to provide them rules and some process, but the conscience is so substantial.
The conscience is indivisible, so it is dangerous to tell the physician they can ignore conscience in dealing with medically assisted death, because next time they may ignore their conscience call for a personal gain or for a professional advantage. Medicine is too complex. No one can monitor physicians’ every act in order to prevent harm to patients or society.
I would like to suggest that Bill C-7 requires an amendment that would make it clear that compelling or pressuring a practitioner to provide, refer or assist in MAID would be an offence in criminal law.
In closing, I will only say that the original MAID law introduced a radical change in our health care, but the legislation was cautious and measured. The current version of Bill C-7 would seriously undermine the delicate balance that was built into the MAID law. Therefore, I would like to suggest that Bill C-7 needs to be rejected or several significant amendments would have to be implemented.
Thank you very much.
The Chair: Thank you very much, Dr. Kotalik.
We will now hear from Jocelyne Saint-Arnaud, Associate Professor, Department of Social and Preventive Medicine, School of Public Health, Université de Montréal. She studies access to health from an interdisciplinary perspective, ethics law and public health. She has a deep understanding of European-made frameworks.
Jocelyne Saint-Arnaud, Associate Professor, Department of Social and Preventive Medicine, School of Public Health, Université de Montréal, as an individual: Good afternoon. It’s a pleasure to be here today. Thank you for inviting me. I’ll start by discussing the reasonably foreseeable natural death criterion and the reasons why I think it should be removed from the eligibility criteria for MAID.
First, removing the criterion would be consistent with Canadian case law further to Carter and Quebec case law further to Truchon. What’s more, the criterion is open to interpretation, which can range from one week to one year, thereby resulting in unequal access to MAID. Some people have gone on hunger strikes to end their lives, something that is ethically unacceptable. From a clinical standpoint, making a specific prognosis with respect to end of life is difficult, and survival statistics can’t be relied upon to determine with accuracy the amount of time a particular individual has remaining, let alone their quality of life. In my view, the criterion should be removed altogether so that the legislation does not establish two categories of deaths, those expected in the near term and those that are not, as is the case in Belgium. Bill C-7 mustn’t make an exception for people with mental illness, who would thus not have access to MAID for a variety of reasons.
Second, the 2016 amendments to the Criminal Code are contradictory given the reference in the eligibility criteria to “physical or psychological suffering that is intolerable” at paragraph 241.2(2)(c): It does not say “and”, but, rather, “or.” Mental health cannot be dissociated from physical health. According to the Canadian Psychiatric Association, research shows that mental illness is caused by a combination of biological, genetic, psychological and social factors that result in disturbances to the brain, so anyone can develop a mental illness if sufficient risk factors are present. It would therefore be discriminatory to establish a separate category for individuals with mental health issues. Mental illness can cause considerable suffering, chronic suffering that gives rise to significant limitations that affect quality of life. In that regard, mental illness is no different than other types of illness. In addition, some neuropsychiatric conditions can be severe, such as in certain cases of schizophrenia, becoming chronic and resistant to all treatment. Out of desperation, people with mental health problems may turn to suicide. Some attempt suicide in hospital, where staff intervene every time to prevent the patient’s death. Medical assistance in dying would be a more humane practice if safeguards were added to the criteria in place to protect those with existing mental illness.
Data from Belgium’s federal commission for the control and evaluation of euthanasia show that the proportion of euthanasia cases involving people whose primary diagnosis was a psychiatric disorder dropped by 4% between 2009 and 2019. Thus, there is no reason to fear abuse in that regard.
Third, rather than deny people with mental health issues access to MAID, it would be preferable to base access on an assessment of the requester’s competence, along with additional safeguards. The autonomy of the person is an underlying principle of Canada’s and Quebec’s medical assistance in dying laws. Why make an exception for those with a mental illness when the empirical literature shows that a significant proportion of individuals hospitalized as a result of serious mental illness are capable of making their own decisions? You’ll find the references in my brief.
That is why I suggest using competence as the criterion to determine MAID access for individuals with mental illness. Consultant psychiatrists would have to apply the same assessment criteria to ensure more equitable access. Clearly, MAID requests compel health care providers and patients to discuss end-of-life treatments and levels of care.
A retrospective study of cases in Quebec showed that 21% of patients received palliative care after requesting MAID. In Belgium’s case, De Hert and his fellow researchers revealed that 50% of euthanasia requesters with a mental illness whose request had been examined put their request on hold after having the opportunity to discuss it. According to the authors, when the request is adequately addressed and the patient is given the ability to talk extensively, the discussion is part of the therapeutic process and can decrease suffering. The requirement that the patient be capable of making decisions about their care at the time of the MAID procedure should be eliminated, because it often results in MAID being administered sooner. It can also lead to ethically unacceptable behaviour where patients refuse pain relief out of fear they will lose the capacity to consent or refuse care.
Fourth, as an additional safeguard, the assessment of competence by a psychiatrist would address the need for reassurance when it comes to identifying the mental illness symptoms, competence, the type of suffering and the degree to which it cannot be alleviated, as well as potential treatments. If the patient chose to receive one or more treatments, their impact on the patient’s overall health would need to be examined, which could take years; the patient’s persistence in accessing MAID over the course of treatment would also need to be assessed. Furthermore, in order to determine that the illness is incurable, the psychiatrist must assess biological, pharmacological, psychological and social data, so it would be appropriate to involve a multidisciplinary team in the treatment process, to assess the effects of the prescribed treatments. With the patient’s consent, loved ones could also be involved in the process.
Fifth and finally, I recommend that medical assistance in dying be permitted on the basis of advance directives, subject to an assessment of competence at the time of the advance request. The Netherlands and Belgium allow euthanasia requests on the basis of advance directives. That is not currently possible in Canada. However, advance directives can be determined and assessed in advance, which would result in better monitoring of individuals with mental illness.
The Chair: Ms. Saint-Arnaud, can you wrap up, please?
Ms. Saint-Arnaud: You can look at my written paper on the importance of including medical assistance in dying in advance directives. For example, even people who have Alzheimer’s disease could, in the early stages of the disease, plan for medical assistance in dying in the later stages of the disease. Thank you.
The Chair: Thank you very much, Ms. Saint-Arnaud.
We will go back to Dr. Grant.
Dr. Grant, don’t worry. We are all undergoing the same challenges. You don’t need to say anything. We want to hear from you. Please proceed.
Dr. Grant: I hope you can hear me and I appreciate your generosity, senator.
The job of the regulatory college is to serve the public interest, which means protecting the public and also maintaining the public’s confidence in the medical profession. The daily work of our college is to set the standards of the profession and to hold physicians accountable to those standards in such ways as investigating and adjudicating complaints. It’s what we do.
To meet our mandate, regulators must make clear, consistent and non-arbitrary decisions. To be enabled to do so, regulators require legislation that is itself clear, not vague, and is consistent with the standards of the medical profession. It’s through that lens of clarity that I want to focus my comments regarding Bill C-7.
I gave evidence to the Senate and House of Commons joint committee on Bill C-14 in 2015. At that time, I was the president of our national federation, FMRAC, the Federation of Medical Regulatory Authorities of Canada. I submitted then that the provisions regarding reasonably foreseeable natural death were too vague to enable regulation. On behalf of the regulators, for similar reasons, I also urged that language be added to contemplate the plight of the eligible patient with failing capacity.
I’m pleased to see the changes in Bill C-7 with respect to reasonably foreseeable natural death and as well the incorporation of what we call Audrey’s Amendment. On these fronts, to this physician and regulator, Bill C-7 is a clear improvement on Bill C-14.
The challenging issues that Bill C-14 left to the regulators, and on which Bill C-7 remains silent and refer to matters such as physician conscientious objection, have been addressed by the colleges and tested and supported by Canadian courts. When I look at Bill C-7, I’m primarily concerned with the provision that sets out that mental illness is not an illness, disease or disability and thus excludes from MAID patients suffering solely from mental illness. This provision is vague, it’s inconsistent with the philosophy of medicine, and this provision will not enable good, strong and consistent regulation. Let me explain.
In the medical world, mental illness is not a clear or precise medical term. It may not mean what you think. I’m not sure what the term “mental illness” means as used in Bill C-7. To physicians, there is an important distinction between disease, being a biological entity, and illness, being the patient’s experience with disease.
I think I understand what the drafters of Bill C-7 were attempting to get at. My sense is they were looking to exclude from eligibility patients who suffer exclusively from a psychiatric disease, the diagnosis of which was unsupported by physical or pathological evidence. If this was their intent, the language I just suggested would be better and clearer for both physicians and regulators.
It remains the question of whether or why such patient should be excluded. These questions might be seen by some as strictly political or social. There is a regulatory component of a regulator, like myself, that good medical practice involves appreciating the whole of the patient before you. We require patients to treat both the disease and the illness as inseparably one. These aren’t semantics. This is the human face of medicine. We don’t want a surgeon treating the gall bladder in Room 4; we want the surgeon to treat the patient in Room 4 who has gall bladder disease.
Bill C-7’s exclusion creates a dilemma. Patients with identical illnesses, if arising from different diseases, will not have the same treatment options simply because of different lab work or MRI findings. There becomes two tiers of disease, those with and without a pathological basis for diagnosis, and thus, two tiers of illness. This is inconsistent with good medical practice. It’s inconsistent with the philosophy of medicine, and it will weaken medicine by forcing regulators to make decisions without logical consistency.
Why is psychiatric suffering seen as different? I worry that the Bill C-7 exclusion arises from specific concern that consent from psychiatric patients is inherently unreliable. You will certainly have heard or will hear from other voices how this thinking furthers the stigma long imposed on psychiatric patients as being incompetent and unable to participate in their decisions.
Practising medicine is hard. Getting informed consent is often hard. It’s a foundational cornerstone of medicine. The profession can determine competence. It can identify decisional capacity, even in very difficult situations. Physicians regularly assess whether a psychiatric patient should be involuntarily hospitalized. Whatever the underlying political or social reasons, decisions to exclude these patients should not be influenced by the notion that medicine cannot assess competence. This will weaken the entire foundation of our medical system. The challenges for assessing competence should not be the rationale for denying suffering patients a constitutionally valid treatment.
Allow me to briefly advocate for a small group of potential patients. Please consider the example of a patient with advanced anorexia nervosa who meets all criteria for medical assistance in dying. She will lose her eligibility upon the promulgation of Bill C-7. I worry that she and others like her will rush to proceed with medical assistance in dying earlier than she might otherwise wish. Ironically, she will be forced to confront the same choice faced by Kay Carter years ago.
With respect to the logistics to accommodate any sunset clauses, let me say this: The regulators can and will act as quickly as is required.
To close — and again I appreciate, senator, your indulgence with the technological difficulties — I welcome the language of Bill C-7 as it pertains to reasonably foreseeable natural death and Audrey’s Amendment. However, I submit the provisions excluding patients with mental illness from MAID are problematic. The present language in Bill C-7 is too vague and non-medical for good regulation. Moreover, the intent of the language will weaken regulation, will weaken medicine and will weaken the public’s confidence in medicine by setting a standard inconsistent with good medical practice. I would urge that this provision be reconsidered. Again, I thank you.
The Chair: Dr. Grant, we also thank you for your patience in sticking with us. Thank you for your presentation.
We would now like to go to our last presenter, Ms. Julie Campbell, who is a nurse practitioner. Ms. Campbell brings a wealth of experience in running a MAID program as well as personal expertise. Please proceed.
Julie Campbell, Nurse Practitioner, as an individual: Thank you, Madam Chair, and good afternoon, everyone. I’m Julie Campbell, and I speak today as a nurse practitioner, a MAID assessor and provider, and from my experience coordinating, navigating and providing leadership in this area.
I want to commend all the senators on the thoughtful investigation that has been undertaken to understand this work and our patients. As I follow this process of legislative review and the media surrounding it, I often think of two words: trust and fear. It would be impossible to legislate every aspect of medical care, and so we have a system where legislation provides a framework, and clinicians act within that framework to establish and uphold the public trust.
Fear is fuelled by inaccuracies or lack of information. Trust is built by ensuring access to transparent, comprehensive and accurate information.
I challenge each of you to hear each witness and ask yourselves if the information presented accurately depicts how MAID has been implemented and how changes in Bill C-7 would affect this practice. Or does the information presented simply reflect fear of what could be?
I challenge you to ask, when individual stories are shared, whether or not this individual was actually approved or just assumes that they may be. This is a key point in wading through fear and into the careful analysis that we apply in each individual circumstance when determining eligibility.
Having experience as an assessor is important. Almost every week, I correct inaccuracies in how people not involved in MAID believe MAID is implemented or who may be eligible. Just a small inaccuracy, or worse, a small inaccuracy fuelled by conflicting personal ethics, can lead to fear, and fear is contagious.
As I reviewed Bill C-7, I reflected upon situations I have been in where my patients would have been granted additional peace, privacy and relief from suffering had these changes been in place. I have had patients who, like Audrey Parker, chose an earlier date because they feared a loss of capacity. This fear seems more realistic to me than the assertion that an eligible and approved patient with a persistent request and a completed waiver of final consent does not wish to proceed should they lose capacity.
Bill C-7 does broaden the number of people who will be eligible for MAID. However, it retains the important aspect that only the patient can consent, and whether or not final consent is eligible to be waived, the initial consent is always from a competent patient.
Individuals have shared their fear that Bill C-7 could include them involuntarily. The truth is Bill C-7 does not include anyone who does not wish to be included. Patients must be eligible and be given all of the information about their options and resources, and they must have the capacity to fully understand these options, demonstrate insight and be able to make decisions independently and voluntarily.
We have worked hard as providers and assessors to earn the trust of patients and families. In Ontario, where I practise, every single case is reviewed by a skilled group of nurse investigators at the Office of the Chief Coroner, and all documents are provided for their review.
Each month, I speak to more than 140 new patients and families. Their most common concerns are losing capacity before the final consent and having a 10-day reflection period. I’m grateful that the passage of Bill C-7 will address these issues.
I’m also grateful for the changes regarding who can witness requests. Allowing care providers to witness is a positive step towards protecting patient confidentiality.
Each MAID assessment requires the individualized, thoughtful approach of a skilled assessor. We are intentional in this work. We share best practices nationally as we strive for excellence. Before each assessment, I do a thorough review of each patient’s medical conditions, previous treatments and outcomes, consultation notes and any other relevant documents. I speak to other team members, and then I sit down and I spend time with my patient. I get to know them. I ask them about what’s important to them, about who is important to them and about how they would like their death to be. I carefully explain the assessment process, the provision of MAID and what they and their family should expect. I explain the role of the coroner and all of their options, including but not limited to palliative care. If I feel at all uncertain, I make another appointment and see them again. I give them my direct phone number for any questions they may have, I make sure they understand the information and I clearly communicate my decision. I ensure they know they will continue to receive our very best care no matter what end-of-life choice is best for them.
Assessors with expertise in MAID eligibility are a knowledgeable group with diverse backgrounds. However, I was concerned with the original wording proposed in Bill C-7 and was happy to see the amendment supported. Some patients have incredibly complex or rare conditions, and we have relied on consultation with experts in these cases. Bill C-7 had suggested that the expert on the condition should also have expertise as an assessor, and they may not be willing to participate due to conscience rights. Having a consultation with a person with expertise in the condition and an assessment by an individual with expertise in MAID eligibility is best for the patient. Requiring one person to possess expertise in both of these areas may severely limit access for our most complex patients.
Lastly, I would be remiss if I did not mention that the implementation of this federal legislation relies on collaboration with provincial governments. Inequities of access exist due to regional and provincial differences. Examples include coverage for oralsecobarbital, scope of practice limitations and remuneration for nurse practitioners, many of whom have been doing this work for free since 2016 despite numerous attempts to remedy this with provincial governments.
The law will only provide Canadians patients a choice if it can be implemented. I appreciate your time and thank you for your hard work.
The Chair: Ms. Campbell, we appreciate you for the work you do and taking the time to present today. Thank you.
Senators, we will now turn to questions, starting with the sponsor of the bill, Senator Petitclerc.
Senator Petitclerc: My question is for Professor Cohen-Almagor. I don’t know if you’re familiar with Canada’s first MAID report, but one of the things we learned from the data that we collected is that, in Canada, the majority of persons who have received MAID also reported that they have received palliative care, and that is 82.1% of those who received MAID received palliative care. I would like to hear from you because you have international experience and done studies. How does that compare with different countries? I know that you’ve mentioned the importance of palliative care in your report. How do you see that?
Mr. Cohen-Almagor: Thank you for your question. I’m pleased to hear that, because 82% is very high. I don’t think this is comparable to what I’ve seen in other countries, with the exception of Britain. In Britain, there is very good palliative care.
I’m concerned — and I’ve witnessed this time and again in Belgium, in the Netherlands, and in Switzerland, the three countries I’ve studied — because I hear time and again that physicians do not offer palliative care to their patients. Many physicians are not familiar with palliative care. When I asked the director of the intensive care unit in the largest hospital in Brussels whether he consults with palliative care specialists, he said, “Why should I? I know everything. There is no palliative care physician who can tell me anything that I don’t know.” This kind of disdain for palliative care is very worrying to me. For many years, there were no palliative care specialists in the country. I was in Switzerland in 2018, and I was told that palliative care is limited.
I’m well aware there might be patients who want to decide the moment of their death, and I respect that. I also know that there are plenty of patients who, if you offered them good palliative care, might change their minds.
I’m very pleased about what you told me, and I plead with the Canadian government to provide resources for medics to provide palliative care, to ensure there will be enough palliative care physicians in each hospital in every region, because this can save lives.
Senator Petitclerc: Thank you. One thing the senators agree on is that we support palliative care in this country.
One more quick question because my time is limited: There is a discussion on what is too permissive and what is too restrictive. What would be your criteria for a MAID approach that is too permissive, for example? What are the criteria we should look for?
Mr. Cohen-Almagor: Thank you for your question. Please look at the papers I provided you with. One of the papers has 20 guidelines that outline how to do it right. It is based on the careful study of nine countries, which I visited myself, and dozens of hospitals and research centres. I should also say that I was one of the drafters of the Israeli Dying Patient Act, where a group of 60 people studied everything around the patients for two years. I also consulted with seven other governments around the globe. Please, look at these guidelines. They’re important.
I have a clear guideline here, and this is the guideline between competent patient and non-competent patient. All the laws in the Netherlands and in Belgium started with competent patients. Then, after a while, they began this argumentation about justice and non-discrimination, and slowly but surely, non-competent patients were creeping into the equation as well.
I find it very worrying if you want to make sure that there is no abuse. If you allow non-competent patients to get MAID, I think this is when you open the door to abuse. Who is able to make that decision? Use your own terms of autonomy. Is an incompetent patient autonomous? I don’t think so.
Look at the issues of competency and of our knowledge today of the brain. The brain is still a mystery to us. We know a lot about many organs, the heart, the lungs, the kidneys and so on. The brain is a mystery. So when you are dealing with issues that have to do with the brain, just be careful. That’s my plea.
Senator Batters: My first question is to Dr. Kotalik. As you know, Dr. Kotalik, Bill C-7 dismantles some safeguards from the existing regime. In your view, do we have sufficient data to justify removing any safeguards from the existing regime?
Dr. Kotalik: Thank you very much for this question. I think that is a very important question to address at this moment.
This bill removes a number of safeguards without actually providing any justification for that. When you look at the annual report of the federal government from the last year, there is a lot of data there about societal impacts of the MAID program, but that does not contain any references to any of the safeguards or admitting criteria. I don’t see much justification for those changes.
The safeguards put in place in 2016 were considered absolutely essential in order to prevent abuse and to have a balanced program. Removing them without actually having an evaluation of how they work in practice, which we don’t have right now, is not a very good idea. The annual reports from last year only provide a piecemeal look at some of those criteria and some of the safeguards, but no systematic review case by case, which would be required to detect any program with applications of those. The problem is this bill is coming in at a time when we haven’t had an independent review done and in the early stages of our attempts at trying to monitor a national MAID program.
Senator Batters: Thank you.
My second question is to the Health Canada officials. How many of the thousands of people who have received medically assisted death since Bill C-14 became law in 2016 have received MAID for a mental illness as a sole underlying condition? I ask this because we’ve had a couple of witnesses before this committee recently who have suggested this has happened. I want to know how many times this has happened and for which mental illnesses.
Ms. Hoffman: Thank you for the question, Senator Batters. I think that, based on the data that we have collected and that we have reported, while there are individuals — and a significant number, a minority but nonetheless a significant number — who are identified by the assessor and MAID provider as a person suffering a neurodegenerative disease, there are not people who would be defined as having had a mental illness, say a psychiatric condition, to use that term, as their sole underlying condition who would have been deemed to be eligible for MAID and therefore have received it.
Senator Batters: Despite the witness saying there have been people she has known about, that is not correct according to the data that you have?
Ms. Hoffman: That’s correct.
Senator Batters: Thank you.
The Chair: I have a question for Ms. Hoffman.
Ms. Hoffman, the minister released to our committee a Gender-based Analysis and a Gender-based Analysis Plus, and I asked the minister why there was no race-based analysis carried out. I later asked this question of your colleagues at the Justice Department, and they encouraged me to follow up with your department regarding my concerns about the lack of race-based analysis and the data collection in the Gender-based Analysis Plus study in Bill C-7. I was very disappointed and disheartened to see there was virtually nothing considered on race in the GBA+ document that I had received. Given these regulatory powers belong to the health ministry, to your knowledge, is disaggregated race-based data collected by the federal government?
Ms. Hoffman: Thank you, senator, for the question. I will just say, as I think was implied yesterday but I will certainly state it clearly today, that at the moment, as far as the federal monitoring regime is concerned, we are not collecting race-based data or other information with respect to ethnicity.
As was implied by Minister Lametti yesterday, we need to do better in that area and we will. We heard your comments yesterday and took them to heart and to mind very seriously. We will be looking very clearly at how we can include information about ethnicity, not only in the monitoring regime itself but in our more general consideration of our societal and sociodemographic issues that influence both access to health care and access to MAID and consideration of eligibility for MAID. I think I can give our assurance that we are looking at that very clearly, and we’ll make appropriate adjustments in the monitoring regime that will follow the enactment of Bill C-7.
The Chair: Ms. Hoffman, I appreciate your answer. Thank you.
I am puzzled with everything that happened last July with the Black Caucus agreeing that we would have race-based data. Minister Lametti and Minister Hajdu were at our caucuses, and they heard it. It was a demand. It shouldn’t be my one lone voice that is now saying, “Okay, we’re going to look at it.” The bigger issue is how can a whole group of people’s realities not be taken into account? That is what’s worrying me.
Ms. Hoffman: I think, senator, if I may respond quickly to that, that is fair comment. Clearly these issues have been in the spotlight for quite some time and long before, as you well know, July 2020. In order for us to change the basis and the nature of the information we collect, we have to have regulatory change. Every item of information and data that we collect is set out in the seven schedules attached to the monitoring regulations. We will be working on revising those, and we will do that as quickly as we can.
We will do what we have done with provinces before when we have produced our interim reports, which is even before we have a regulatory regime. We will engage with provinces and territories and make sure that, in the interim, we have ways of collecting data that ultimately will be codified in the regulations. We know that in some jurisdictions there is some data on ethnicity that is collected — not in all but in some. We will try to build on that where we can until such time as we have the necessary regulatory changes.
The Chair: Thank you, Ms. Hoffman, for your answer.
That leads me to my final question. Is the government taking any real steps to establish a national framework for the collection and analysis of race-based or Indigenous identity data in Canada? I ask you that, and I heard your answer. I want to put that on the record. Is there any collection at all of data?
Ms. Hoffman: If you’re talking about race-based data related to MAID specifically or even access to health services more generally at the federal level of a comprehensive nature, I would say the answer to that is no. Having said that, it is possible, through linked datasets at StatCan, to actually tease out some specific ethnicity data, but it is not a single database. This would be through examination of linked datasets.
The Chair: It is possible, so now we need the intention, right?
Ms. Hoffman: It’s possible, but there are issues of timing. We pride ourselves on the fact that we’re producing this MAID data and monitoring report as soon as we can after the period in question. If we waited to pursue linked data with Statistics Canada, another year or more would elapse before we could actually shed light on the issues you’re talking about. We are committed to figuring out how to do that in a more efficient and timely manner.
The Chair: Ms. Hoffman, you and I worked together many years ago. You say you were in such a hurry that you didn’t look at one large ethnicity group in Canada, and I just leave that on the record. I know you cannot answer anything further.
Dr. Kotalik: In this regard, I must defend the Ministry of Health. The racial designation in our health care system is not systematically done and is difficult. As chair of the ethics committee, I tried to develop some way to find out what percentage of Aboriginal and Indigenous patients we actually have and we discussed the way we can do it. The problem, first, is patients who have Aboriginal ancestry or belong to a tribe may not be comfortable to share that with us. They may not do it because they don’t want to be treated differently. On the other hand, from the care perspective, we were concerned that it perhaps would be a divisive element if the person were to be labelled with the Aboriginal ancestry and that would perhaps make discrimination possible. For this reason, we could not proceed to routinely collect this information at the time of admission of our patients.
Senator Harder: Professor Saint-Arnaud, in countries where MAID for mental illness only is permitted, the number of patients who qualify remains extremely low in the data I have. We’ve heard some testimony this afternoon suggesting otherwise. My data says in Belgium, for example, 57 reported cases of euthanasia for psychiatric patients in a two-year period, so that means an average of 28; in the Netherlands, 68 cases in 2019.
This does not suggest to me that there is a slippery slope and, in fact, it’s rather restrictive. Given your professional interest and experience in international comparisons, would you comment on the Benelux experience and the slippery slope theory being described here?
Ms. Saint-Arnaud: I didn’t notice any abuses. The figures that I have for 2009, which come from Belgium, show that there were 36 cases. This means that 4.89% of euthanasia cases involved people with mental health issues. In 2019 there were fewer cases, 23, which amounts to 0.86% of euthanasia cases. I don’t see any abuses from this perspective.
I think that doctors and nurse practitioners will ensure that the necessary precautions are taken for people with mental health issues, should the law ever permit medical assistance in dying for these people in Canada.
Senator Harder: Thank you for that clarification.
Senator Martin: Thank you to all of the witnesses.
Dr. Kotalik, you spoke about the importance of respecting conscience of health care practitioners, and that issue has been front and centre in my mind and that of others throughout the debate. You also articulated the importance of respecting conscience when it comes to physicians, especially when it comes to their ability to provide good care. That was well described about how inseparable it is as to what guides them in the care they do. Yesterday, Minister Lametti reiterated the conscience clause from Bill C-14, that protections are there, but can you discuss why that clause has been insufficient in practice? We have heard from witnesses that it is insufficient, so I would like to hear your perspective on this.
Dr. Kotalik: Thank you. That’s very simple actually. In Bill C-14, the protection of conscientious objection is wrapped up in the preamble. This is sort of a package that people are supposed to provide, but when you come to the end of the act you don’t find there is an actual protection in the criminal law. We would need a clause whereby forcing anybody in that area would be a similar offence within the criminal law such as providing false information about MAID or failing to provide information for which there are certain consequences outlined in the law. We need to move it from the preamble into the body of the law so it could be under the auspices of the criminal law. Thank you.
Senator Martin: Thank you for that. I know we will be looking at amendments at third reading. This is one of the amendments I’ll be examining carefully.
Dr. Cohen-Almagor, thank you for the extensive work you have done in examining the euthanasia regime in various countries. You talked about the importance of safeguards, advice and guidelines that you are giving to us for our regime. However, the one very important question that hasn’t been satisfactorily answered for me — and I asked this of the Minister of Health, who didn’t answer my question but addressed it in a different way — is in relation to actual stop mechanisms in the MAID process to ensure that every opportunity is given and that there can be interventions. I was curious about specific stop mechanisms that you have seen in other jurisdictions that we need to make sure we have in Canada.
Mr. Cohen-Almagor: Thank you for your question. You need mechanisms of control and inspection if you want to have a good practice. Of all of the countries I examined, the best that I’ve seen — it’s not perfect but the best of all — is Oregon. Study Oregon and see what they’re doing. Oregon had been very proactive and transparent, because each year Oregon publishes an annual report, which is elaborate and detailed, unlike other countries that don’t do that, unfortunately. If you want to follow a good model for Canada, I would recommend Oregon.
Senator Martin: Thank you. That’s something we will have to do very carefully as well.
My next question is for Abby Hoffman. When you talked about examining the monitoring regime and you’ll be taking the concerns from the disability community that has been expressed, you didn’t mention the concerns expressed by Indigenous communities. Would you confirm that this too will be taken into careful consideration?
Ms. Hoffman: Yes, indeed, it has been pointed out. Despite some considerable effort to engage appropriately with Indigenous communities in this most recent round of consultations — that is, last January — I believe that is generally regarded as not sufficient. We don’t disagree with that. I think that we’re very clear. There is a huge diversity of views across Indigenous communities, not just from a distinctions-based standpoint but more broadly than that. We will ensure as we develop a new monitoring regime that Indigenous groups, in their diversity, are part of the consultation process.
If I may just say, I think we were particularly struck by some comments made by Senator Sinclair prior to Christmas about a specific experience with MAID. This was an Indigenous woman who actually had chosen MAID, but the circumstances under which, in fact, that process was pursued on the part of the providers clearly had some problems. Those are issues that are not just matters of the monitoring regime. They are matters of practice.
I’ll just note, I was very impressed with what Julie Campbell said today in drawing attention to the care and the compassion and the thoroughness with which a MAID assessment or the provision of MAID is undertaken. We need to be sure that those processes reflect an awareness of sensitivity and respect for the diversity of people from many groups in the country who may ultimately seek MAID. Even if there might be a predominant view that MAID is not really compatible with the dominant culture in that community, that doesn’t mean that some people will not still seek MAID, and they will need to be treated with sensitivity and respect.
Thank you for the question, Senator Martin.
Senator Boisvenu: I want to thank all the witnesses for their excellent presentations. My question is for Ms. Saint-Arnaud. I’ll address the minister’s statement regarding medical assistance in dying eligibility for people suffering from neurodegenerative diseases. We don’t have sufficiently comprehensive knowledge, and this could lead to abuses.
I gather from your presentation and from the statistics that you cited that, in these cases, at least in Quebec, we haven’t seen any abuses. When we talk about neurodegenerative diseases, we aren’t only referring to pain, but also to practically inhumane end-of-life conditions. For example, some people have seen their loved ones die of Alzheimer’s disease. Their experience has made them much more sensitive to the topic. They don’t want to experience these situations themselves. People would like, at the time of their diagnosis... Yesterday, I spoke about a lady who was featured in La Presse. She saw her father die of Alzheimer’s disease at the age of 53 in inhumane conditions. She doesn’t want to go through this, and she just found out that she’ll get Alzheimer’s disease. My question is as follows. How can we change or propose an amendment in this bill to ensure that people suffering from neurodegenerative diseases... We’re talking about a physical issue here. The cells, as they deteriorate, take away any awareness of life or perception of life.
So, how could this bill be amended to ensure that these people could, either by proxy or by advance directive, receive medical assistance in dying when they’re no longer aware?
Ms. Saint-Arnaud: First, I’d say that the criterion for capacity, which must remain until medical assistance in dying is provided, should be removed. This would be the first condition, the first change to make in Canadian law and also in Quebec law. People with Alzheimer’s disease would be able to request medical assistance in dying through advance medical directives, which currently isn’t possible. It’s possible in other countries, such as the Netherlands and Belgium. For example, a person who receives a diagnosis and who is still considered able to make their own decisions when they give their advance directives, would be able to decide, for example, to receive medical assistance in dying in the later stages of Alzheimer’s disease.
I haven’t had time to go any further on this topic. However, in terms of a change, I want capacity to be assessed when the person gives their advance directives. This currently isn’t an option. Right now, a person can fill out a form and can refuse, for example, any treatment that would keep them alive if they were suffering from a certain condition, such as an imminent death, a persistent vegetative coma, or if they were suffering from dementia in the later stages of the disease. A person can, in Quebec, refuse treatments that would keep them alive if they had the Alzheimer’s type of dementia. However, they don’t have the option of requesting medical assistance in dying. This could be addressed.
Senator Boisvenu: Thank you.
Senator Pate: Thank you very much for providing the information from Health Canada. It actually does show that the adequacy of services isn’t necessarily assessed.
My question is for Dr. Grant. Bill C-7 requires that patients be informed of alternative means of relieving suffering. During the committee’s pre-study of this bill, we heard from witnesses in Nova Scotia that in many cases these alternatives are not available and, in fact, are the subject of ongoing human rights litigation related to practices of confining people with disabilities to hospital institutions due to a wait-list of many years and more than a thousand people trying to access community-based care. I’m curious, therefore, what your plans are, in terms of from a regulatory perspective, about how to approach the requirement to inform patients about such alternatives and, when they do not exist in practice, how you will be documenting this and how we can assure rigour in terms of the documentation of these kinds of records and practices. Thank you.
Dr. Grant: Thanks for the penetrating question. The regulators share everyone’s concern about the adequacy of the availability of palliative care. Permit me to speak as a doc because I still think of myself a little bit in that regard. We see palliative care as being absolutely complementary to medical assistance in dying as it has evolved to be in all the Benelux countries. I remember when the Benelux countries took on medical assistance in dying. There was a resistance from the palliative care community. Now it’s a fundamental ingredient in palliative care.
Your question pertains to whether there would be a duty to advise. I think it’s reasonable to assume that there would be. This is a recognized treatment. What documentation would be required? We would require full documentation of both what was said and the logic tree behind it. You get me, however, to an impossible point as to what would be specifically required in a situation where recommendation was for a service that was unavailable. I think you can appreciate that that can’t be answered specifically. My swim lane to oversee the conduct and care delivered by physicians in Nova Scotia has to have a reasonable lens, and if the service is not available, it’s simply not available. I would hope other wings of the system would work to make it available.
Senator Pate: Ms. Hoffman, I’m curious, given what we have just heard and the concerns being raised by the disability community, given the fact that in the Benelux countries a much higher percentage of the GDP is devoted to the kinds of support services that need to be provided as a preemptive measure to the decision for MAID, what are the plans in place within Canada to improve those services? Where are we in terms of the development of national standards in that regard?
Ms. Hoffman: Thanks for the question, Senator Pate.
I’m not sure I’m best placed to talk about the breadth of disability support services. If I understood your initial commentary correctly, what you were referring to is less palliative care and more the support services that relate to people who may seek MAID because their conditions, particularly their institutional conditions, are such that, lacking alternatives, they may turn themselves in the direction of MAID.
Clearly there is an agenda around improvements in disability supports. I think what we can do on the health side — back to the issue of data and monitoring and so on — is to make sure that we have as full an understanding as we can possibly get through the regulations, the monitoring and reporting process of what kind of services were available, and what it is that both the provider who is reporting and the individual who may be seeking or considering MAID is saying about the appropriateness of those services and the adequacy of them.
We have asked questions in the monitoring report today of a fairly modest nature, admittedly, about disability support services. We will have to drive further into that realm. It will still bring us to this invidious issue, however, of — and these will be decisions for providers to make — how a decision is made in the absence of sufficient access for an individual at a point in time. How should that influence the eligibility decision? Because the sea change that may be required to ensure that services are sufficient is not going to be solved in the time frame of that individual’s request.
These are the intractable problems of this file. We know that. The best I think we can do, as I say from a monitoring standpoint, is to try, both through formal monitoring and through other studies and assessments, to really understand how the adequacy and accessibility of services plays into MAID decisions by individuals and assessments of those requests by providers.
Senator Boniface: Thank you to all the witnesses for your contribution.
I would like to direct my question to Ms. Campbell. Thank you for your evidence and for the work that you do. I just want to make sure I was clear. The question is as follows: What impact, if any, might Bill C-7 have on physicians’ and nurse practitioners’ willingness to conduct assessments and provide medical assistance in dying? For example, will the removal of the requirement for a reasonably foreseeable natural death discourage some practitioners from offering the service? If so, why or why not?
Ms. Campbell: I think it’s fair to say that it could impact how many available providers and assessors there are. What I see is that we’re in a very different place than we were in 2016. In 2016, those numbers were very limited, and what we have done is built a national network of support and shared best practices to support more people to learn how to do this work and feel supported doing so. I anticipate that this could affect those numbers, but I also anticipate that, over time, we will put systems in place to support one another and continually share our knowledge to ensure safety for our patients and safety for us as providers and assessors.
Senator Dupuis: My question is for Ms. Hoffman and Dr. Grant.
Ms. Hoffman, you spoke about the fact that you collect data on the practice of medical assistance in dying.
I’ll refer to page 94 of the report published in 2019 by Quebec’s commission on end-of-life care. The report includes data collected between 2015 and 2018. The report states that, of the people who received medical assistance in dying, 1,453 had both physical and psychological ailments, 93 had only physical ailments, and 75 had psychological ailments.
I can see that here, at least as far as the Quebec system is concerned, the data is broken down into physical ailments, psychological ailments or both. Do you have this data on hand?
Ms. Hoffman: The issue is not whether or not we can get the data. The issue is that our data requests that we make of providers map directly back to the legislation. We ask them to identify the health conditions that people have, and they do that along with their assessment of whether there is a decline in capacity, irremediable suffering and so on. Unless I stand corrected by my colleague at this session, we didn’t have reports of psychiatric illness as the principal cause of the person’s request for MAID. So it wasn’t that there is no data.
If what you’re asking is whether one of the explanations for why people were refused MAID — because we do report on situations where people were deemed to be ineligible — again, a psychiatric illness was not reported as one of the factors for people being declared ineligible. A number of other factors were related to competence, informed consent, not having irremediable suffering and not meeting the other eligibility criteria.
Senator Dupuis: Thank you, Ms. Hoffman, but I’ll ask you this question.
If, in the real world, official statistics are published to the effect that medical assistance in dying is allowed for people whose only medical condition is psychological, we must make sure that this appears somewhere in the official data. Ms. Hoffman, my additional question is as follows.
As part of the gender-based analysis plus, or GBA+, which is conducted by the Department of Justice to assess whether a law complies with the charter, what work is being carried out with Justice Canada and Health Canada to ensure that the data collected will be used to perform this analysis?
I can see data collected by Health Canada and, at the same time, an analysis conducted by Justice Canada. What’s the relationship between the two departments? Does the Department of Justice ask you for a certain amount of specific data so that it can then conduct an analysis based on actual data?
Ms. Hoffman: Justice Canada, in the course of preparing the GBA+ for Bill C-7, had access to all of the data that we had collected from the provinces through the interim reports. By the time the first formal report was available, Justice was well under way with the GBA related to Bill C-7. In fact, they had actually completed it about six months earlier. They have the benefit of that data.
Also, I think I made this point earlier, but in the report we publish, virtually every piece of data we collect is reported, with the exception of validating that applicants had a valid health insurance number. So our Justice colleagues do have access to that.
Senator Dupuis: You didn’t answer my question. I want to know whether the two departments are working together to determine the type of data needed. You’re telling me that the Department of Justice has access to the data at Health Canada. My question is as follows. How are the Department of Justice and the Department of Health working together to determine the data that the Department of Justice will need and that you’ll give them so that they can conduct their analysis?
Ms. Hoffman: I’m sorry if I did not properly understand the question. First of all, we work very closely with our Justice colleagues all the time, and that starts at the ministerial level on down. To the extent that these issues — some of which you have raised, as have Senator Jaffer and others — show some deficiencies or gaps in what we are doing, we will absolutely be working with Department of Justice Canada colleagues, among many others, to make the proper adjustments for the future. There is no question about that. We work very closely.
Senator Dupuis: Thank you. I have a question for Dr. Grant. At the start of your presentation, you explained to us —and thank you for your patience and for joining us again—
The Chair: Senator Dupuis, you have more than had your time. I’m sorry. We must move on.
Senator Wallin: My question is for Ms. Campbell. I just want to come back to the issue of those dealing with MCI, dementia and Alzheimer’s. What do you think needs to be said — I don’t know how precise you can be — in this legislation so that we could undo the catch-22 that seems to keep people diagnosed with variants of those illnesses out of the system?
Ms. Campbell: I think the Bill C-7 ability for a waiver of final consent will assist those patients. At the time that their illness meets the criteria for that first track with the ability to make that advanced request — or advanced waiver, because I don’t want to mix up what I mean by advance directive versus waiver of advanced consent — but I think that will help some of those patients be able to use this law.
Senator Wallin: How much weight does an advanced waiver have?
Ms. Campbell: I’m not sure I understand “how much weight.”
Senator Wallin: If the waiver were signed in the very early stages, say after a diagnosis of MCI but before the symptoms had really developed into dementia, Alzheimer’s, how often would that have to be updated? Is there an ability to do that, and secondly, a willingness to do that as part of the system, not the individual?
Ms. Campbell: I think a limitation of Bill C-7 is that the waiver of advanced consent applies only to those whose death is reasonably foreseeable. With that criterion, it doesn’t apply to those other patients until they meet the other criteria, advanced state of decline being key in that one. So they will have trouble.
When does it get updated? That’s not clear in Bill C-7. It’s certainly been a topic of conversation among assessors and providers for patients with a reasonably foreseeable death. What would that look like? We have started that conversation, but there is nothing in the law so far that limits how much or how often that would have to be updated.
Senator Wallin: Obviously, clarification there would be helpful.
Ms. Campbell: It would, thank you.
Senator Wallin: Thanks.
Senator Kutcher: I have a question for Dr. Grant and one for Ms. Campbell.
Dr. Grant, we heard much discussion about conscience protection. Can you share your knowledge of how physician conscience rights are currently protected in Canada and whether, in your opinion, Bill C-7 would limit those rights?
Dr. Grant: Thanks for the question, Senator Kutcher. It goes without saying, and everyone in this hearing would know, that no physician can be compelled to provide MAID. When Bill C-14 became law, it was incumbent upon the regulatory colleges to put in place accommodations for physicians who, for reasons of conscience, opposed this. Most, if not all, of the regulatory colleges have language similar to ours in Nova Scotia and Ontario that requires a physician who conscientiously opposes to achieve an effective referral that refers a patient to a physician who does not have this conscientious objection. That provision has been tested in the courts and found to be constitutional.
When you get to issues of conscience and physicians, I think the first six words of the Canadian Medical Association’s Code of Ethics and Professionalism on the fundamental commitments of the medical profession are the most important: “Consider first the well-being of the patient; . . .” It’s part of the oath I took and that, as I recall, you did, too, Senator Kutcher.
There was talk earlier by — and I am afraid I’m not sure if it was Dr. Kotalik, but I believe it was — who said that conscience can’t be separated and that it was an act of conscience, for instance, for a physician to refer when they saw child abuse. I think that was the reference made by Dr. Kotalik. That’s not just an act of conscience; that’s an act required by law and required by regulatory colleges.
Physicians who practise medicine and are licensed to practise medicine are held to answer to many duties. I do not see either Bill C-7 or Bill C-14 effectively intruding on that. There are physicians who, for deeply held reasons of conscience, can’t participate in MAID, and they need not; they simply need to refer the patient along.
Senator Kutcher: Thank you very much, Dr. Grant.
Ms. Campbell, it’s indeed refreshing to have a Canadian MAID provider testify before this committee. It was very helpful for us to hear how carefully, compassionately and thoughtfully you assess MAID requests and deliver MAID. In your personal and administrative experience, are Canadian MAID assessors competent to conduct thorough and comprehensive capacity assessments for MAID requests?
Ms. Campbell: I believe they are. We do that with every single patient. We really do take our time. We reach out to our colleagues when we need their assistance, and we make sure we really know our patients. I have had so many say to me, “Oh, you’ve already read all of my information before you came? That’s so refreshing.” I want to spend that time getting to know their thought process behind it, not regurgitating what I can read in their chart.
As MAID assessors and providers, we really do take upholding this public trust very seriously. That’s why you haven’t seen any legal discipline actions since MAID was incepted in 2016.
Senator Kutcher: Thank you. You said that if you weren’t sure, you would naturally seek assistance from a colleague. Does that mean that if you had any concerns at all about what you were assessing, that you would ask somebody?
Ms. Campbell: I do.
Senator Kutcher: So you would already do that as part of usual practice?
Ms. Campbell: Yes. That led to my comments about the original wording of Bill C-7. We already do that. I feel like I can’t reach out to an expert in that field who is a conscientious objector and also ask them to do both the MAID assessment and share their expertise, because it puts them in a very difficult position. But if I reach out to them and say, “I really need your expertise on this patient to ensure that they know all of their options,” then they can willingly share all of that expertise with me. That’s the way that we’ve approached this so far, to make sure that we connect with people who have more experience than we do when we need that.
Senator Kutcher: Thank you very much.
Senator Miville-Dechêne: I want to start by thanking all the witnesses whom I’ve heard from, especially Ms. Campbell. This presentation has given us an inside look at what’s happening with medical assistance in dying.
My question is for Professor Cohen-Almagor. The data collected in Canada, and no doubt in several other countries, is gathered through a system of self-reporting by doctors. The goal is to determine the number of cases of medical assistance in dying and how the cases proceeded. I’m told that the Netherlands has another parallel system of independent verification by inspectors. Every five years, the inspectors review certain cases to ensure that the laws and regulations are being followed. Is this system necessary in the different countries that practise medical assistance in dying?
Mr. Cohen-Almagor: My sincere advice to you is to not follow the Dutch or the Belgian systems. I do not think they are not very good systems. I’m sorry that I am very blunt about this.
When I first came to the Netherlands, I came as a supporter of euthanasia. I wrote about it for eight years. I wrote articles preaching euthanasia because I believed, and I still do believe, that we need to respect the autonomy of the patient, but there is a difference between respecting the autonomy of the patient in philosophical terms and then seeing how policy is being implemented. Policy is not about an individual case, and it’s also not about an individual nurse or an individual doctor. Policy concerns millions of people. When you see that regulations are being broken time and again, it is very worrying. It is worrying to me as a human being.
I believe there should be reports once a year, as I said, for a good model. You are practising a dangerous health system in which people who would like to die are asking a doctor to [Technical difficulties] system and about cultural aspects of this thing. It’s very important if you do the correlation between the minority groups in your society, poverty and education, because these are correlated.
In Belgium, everyone can understand how crooked the system is when you have the major champion of euthanasia as the chair of the control committee. How can you put the person who preaches euthanasia and promotes from euthanasia to chair the committee? It cannot be a more blunt conflict of interest, but nobody raises a voice in the Belgian establishment to say, “This is impossible.” It’s impossible that the control committee is comprised of people, all of them in support of euthanasia.
You need a good control mechanism to see that there won’t be abuse. I’m not saying change the entire system. You want to balance between different considerations. Do it in a transparent and ethical way to see that those who are going to benefit from this will have what they want, and those who want to avoid death are not going to be put to death against their will.
I published an article showing that the life of a great number of people in Belgium was shortened without their consent. This should be worrying. This should be something that people should look at. When my article was published, there was a debate in the Belgian Senate, and they attacked me as a religious fundamentalist. I mean, it’s just crazy.
Ms. Saint-Arnaud: First, the situation in Oregon is very interesting. Assisted suicide was legalized there. Before the assisted suicide is provided, efforts are made to meet the needs of the people. As a result, at least a third of the people change their minds because some of their needs, such as their social or other needs, have been met.
With regard to your request, Senator Miville-Dechêne, the Netherlands has a research team that’s separate from the government and from the commissions that receive the doctors’ reports. This team selects a significant number of death certificates to see how many euthanasia cases weren’t reported. I think that this system is very good, because some euthanasia cases aren’t reported. Generally speaking, the unreported cases are the ones that don’t follow the rules.
I find it interesting that a government would fund an independent research team that can access death certificates, which requires special legal permission. These death certificates include a requirement to state how the person died. That way, it’s possible to verify the completeness of the data collected by the commissions.
Senator Miville-Dechêne: Thank you.
The Chair: Thank you very much, senators.
Thank you very much to all the panellists. As you can see, this has been a very lively discussion. On behalf of all the senators, we thank you all for participating today. We know it takes a lot of time away from your work. We very much appreciate it. Thank you very much.
We are now ready for our third panel. As you know, we will have four today. We have five witnesses. We will start first with the Siksika Health Services. We have Tyler White, chief executive officer, and Dr. Thomas Fung, physician lead. They will both present. Can I ask you to present, please?
Tyler White, Chief Executive Officer, Siksika Health Services: Thank you and good afternoon, senators. It is a real honour and a pleasure to be here.
[Indigenous language spoken]
That means, in our language, “Hello. My Blackfoot name is Holy Eagleshield.”
Myself and my colleague and friend Dr. Thomas Fung are pleased to present to you this afternoon.
We’re here to speak on behalf of Siksika First Nation, a member of the Blackfoot Confederacy and Treaty 7 in Alberta. We have grave concerns over the implications of Bill C-7 on our Indigenous community. The expansion of medical assistance in dying beyond those whose death is foreseeable will have a lasting impact on the Indigenous populations in Canada. Compared to non-Indigenous persons, we experience health disparities in areas of life expectancy, complexity of chronic diseases and access to health services, as well as higher rates of disabilities, mental illness and chronic pain. Our people also live with higher rates of poverty, food insecurity and unemployment — all negative social determinants of health.
It is alarming that the consultation thus far on Bill C-7 with Indigenous peoples of Canada, whom this bill will disproportionately impact, has been grossly inadequate.
Let us be clear. MAID, with its administration of a lethal substance to end a person’s life, is countercultural to our values, belief systems and sacred teachings. Our concept of health and wellness does not include the intentional ending of one’s life. While Indigenous communities may have a diversity of languages and customs, we share a common belief in recognizing the dignity of life. Our cultural heritage teaches us to honour the natural passage of life from the physical world to the spiritual. Efforts to suggest to our people that MAID is a dignified end for the terminally ill or those living with disabilities is a form of cultural colonialism.
We are also concerned about the impacts of Bill C-7 on our efforts to combat the youth suicide crisis in our communities. The expansion of MAID sends a contradictory message that some individuals should receive suicide assistance while others suicide prevention. Our consistent message to our youth has been that suicide is not the answer to the difficulties and challenges we face as a people. Bill C-7 will send a message in direct opposition to ours.
In its current form, Bill C-7 does not contain any language protecting individuals and institutions, such as ours, from stigma and repercussion by choosing not to participate in MAID. We believe that our people should not be forced to participate in the administration of lethal substances to end the life of another. It is in direct conflict with our cultural beliefs around life and death. The Truth and Reconciliation Commission of Canada calls upon those who can effect change within the Canadian health care system to recognize the value of Aboriginal healing practices and respect Indigenous people’s right to self-determination in spiritual matters, including the right to practise our own traditions and customs. We call on this government to amend Bill C-7 such that those who opt out of any participation in MAID directly and indirectly will be protected from discrimination in their place of employment and in the health care system.
Dr. Thomas Fung, Physician Lead, Siksika Health Services: Thank you, Tyler.
There are unique challenges to Indigenous health care.
First, despite years of advocacy, primary care remains entirely unfunded in Indigenous communities, leaving many to travel great distances to see a physician.
There are also barriers to accessing specialty services. Our rural psychiatric service has a current wait time of upwards of 60 days, and for palliative care there is no locally accessible hospice. The waiting period in Bill C-7 does not take into consideration the realities of accessing health care from Indigenous and remote communities.
Looking at our health outcomes, it is fair to say that Indigenous services are failing our people. It is not uncommon for non-insured health benefits to decline coverage for therapies that would improve quality of life. Two of my patients — one with an incurable lung disease and another with advanced liver cancer — were denied home oxygen. Under Bill C-7, these patients would likely qualify for MAID, even though it would go against one’s conscience knowing that we have not provided them other ways to relieve their suffering. Some Indigenous people do not even have access to non-insured health benefits because of unresolved issues with their status application and agency red tape.
Can the government assure us that every person who qualifies for MAID can also qualify for government assistance or disability income?
For the vulnerable and disadvantaged, assisted death should be an option of last resort and not the path of least resistance. We call on this government to put in amendments that would require provision of appropriate therapies aimed at relieving suffering before MAID is pursued and to provide meaningful access to medical care and social support.
Finally, as physicians practising in Alberta, we are required to take sensitivity training to provide culturally appropriate care to Indigenous people. For me to initiate discussions of assisted suicide would demonstrate a complete lack of understanding of Indigenous beliefs and traditions — or, worse, be viewed as a subtle form of coercion or racism during their moments of vulnerability and despair. As such, Bill C-7 should include an amendment whereby only patients should initiate conversations around MAID and that health care workers not be mandated to initiate the conversation, as some have advocated. Indigenous people already do not feel safe accessing health care due to stigma and racism. The notion of offering a lethal substance to them will only perpetuate a culture of distrust, resulting in delay in seeking medical care and worsening health outcomes.
Last week, at the summit on anti-Indigenous racism in health care, Minister Marc Miller announced the federal government’s intention to overhaul Indigenous health, aiming to ensure Indigenous control over development and delivery of health services.
We put forth our calls for amendments to Bill C-7 —
The Chair: Dr. Fung, can you wrap up, please?
Dr. Fung: Yes. We now implore the Senate to consider our recommendations and to take the opportunity to recognize First Nations as full partners in the development of health delivery.
The Chair: Thank you very much, Dr. Fung.
We will now hear from the Correctional Investigator, Mr. Ivan Zinger. The Office of the Correctional Investigator has worked with the Human Rights Commission on MAID for prisoners in correctional facilities.
Ivan Zinger, Correctional Investigator of Canada, Office of the Correctional Investigator: Committee members, thank you for the invitation to appear before you. I’m appearing today in my role as Correctional Investigator of Canada.
In my remarks, I’ll describe the lessons learned and my concerns regarding three known cases of federally sentenced individuals who received medical assistance in dying. In one of the three cases, the procedure took place inside a federal penitentiary. I’ll also refer to a briefing on these matters that I submitted to the Standing Committee on Justice and Human Rights in November 2020.
As I see it, there are three substantive problems with current law and policy governing the application of provisions for medical assistance in dying in federal corrections.
First, internal Correctional Service of Canada, or CSC, policy gives the agency discretionary authority to facilitate medical assistance in dying inside federal prisons under extraordinary circumstances.
Second, under current law, CSC is exempted from investigating the death of an inmate who received medical assistance in dying. CSC isn’t required to notify my office of a death of this nature.
For incarcerated people suffering from terminal illness or intolerable chronic pain, alternative release options such as geriatric release or medical parole are lacking. Current provisions, such as compassionate release or the royal prerogative of mercy, are difficult to access, highly restrictive and underutilized.
To my first point, I would point out that the first case of assisted death of this kind inside a penitentiary was provided to a non-violent drug offender serving the minimal two-year sentence allowed under federal law. The decision to deny him parole, even as he was suffering from a terminal illness, only to provide MAID in a penitentiary strikes me as out of step with the gravity, nature and length of this man’s sentence. My review of this case raises serious questions of omissions, delay and the misapplication of law and policy. It highlights the lack of release alternatives and inflexible sentence administration in managing chronic or terminal illness among Canada’s inmate population.
To be clear, I have no issue with the proposal to extend MAID to people under federal sentence. My concerns pertain to the nature and context of incarceration itself. The intent of MAID is to provide Canadians with a legal option to end their life with dignity, at a time and place of their choosing. It is simply not possible or desirable to provide for or meet these intentions in the particular context of incarceration. In the case I just raised, this man ended his life in prison not out of choice but, rather, because every other option or alternative was denied or not considered.
To my second point, it is not clear to me what the intent in 2016 was in exempting CSC from reviewing or investigating MAID deaths. Removing the requirement to provide notice to my office of a death involving MAID strikes me as a serious oversight. As it stands, CSC is not required to inform my office of a death in custody involving MAID procedure. In fact, there is no statutory requirement for CSC to report or review a death of this nature. I do not believe it was the legislature’s intent to exempt CSC from internal or public scrutiny in such matters. Surely, there must be some provision in place to assure Canadians that all release options were considered, that the quality of care provided met professional and community standards of care and that all other procedural or legal safeguards were adequately and appropriately met.
Ideally, I believe that the decision to seek MAID should occur in the community as a parolee, not as a prisoner behind bars. As I see it, the problem is not whether MAID should be extended to people under sentence, but rather how and where. It is puzzling, but the way the law is currently written and applied makes it easier for a terminally ill prisoner to qualify for MAID than to obtain parole by exception.
Every year, up to 40 federal inmates die of natural causes behind bars. Most of these deaths are expected or, to use the current legislative criteria, reasonably foreseeable. Presumably most of these individuals would have met MAID criteria either in its current or contemplated form. In prison settings, MAID does not necessarily expand the realm of choice in palliative or end-of-life care. It seems highly improbable that a person of sound mind but physically suffering, presented with a viable alternative, free from coercion and fully informed of their conditions and prognosis, would choose an assisted death in prison. It serves no public safety interest for an inmate who becomes terminally ill, who may have already served the majority of his or her sentence up to that point, or perhaps is years beyond their eligibility date, to be kept behind bars.
Medical assistance in dying for prisoners isn’t an option that necessarily extends end of life choice. It isn’t a solution for an inflexible system of sentence administration. In short, medical assistance in dying should never be allowed to take place behind prison walls, and certainly not without any scrutiny of any kind.
Thank you for your attention. I would be happy to take your questions.
The Chair: Thank you very much, Mr. Zinger.
We will now go on to François Paulette. He is a respected elder and a chair of Yellowknife Stanton Territorial Health Authority Elders’ Advisory Council. Mr. Paulette, please go ahead.
François Paulette, Denesuline Elder, as an individual: I first want to say that I had heard of this bill some time ago, when it was introduced.
I’m going to describe to you our world view, and we have terminology to describe that. It’s Dene Ch’anié. Dene Ch’anié, literally translated, means the “path we walk” in the past, today and tomorrow. In this world view of the Dene, there is no description or word for “medical assistance in dying or suicide.”
The first recorded suicide in our tribe happened in the 1700s. In the 1700s, when the English came to our part of the world and we helped them build Fort Prince of Wales in the Hudson Bay, there was a famous leader. His name was Matonabbee. He had a huge following, and the fur trade just came into existence. It was the beginning of when our people began to be colonized, to thinking that the killing of fur and making a lot of money was the answer to their way of life.
Matonabbee led a huge group of people from the Hudson Bay to the west and the north. In the Seven Years’ War between the French and the English, the French took over the fort, and Matonabbee was devastated by that, meaning that Matonabbee had a monopoly on the fur trade. When he heard of that, his army was out in the country. They couldn’t be part of the war. That same year, Matonabbee took his own life, and that was the first recording of a suicide amongst our people. It is like in the 1930s when the stock markets fell and people were jumping out of the windows. The same kind of incident happened with Matonabbee.
That was the beginning of suicide. Today, suicide runs rampant in our communities. It’s become like a way of life. As I said, we have no word for suicide. It’s totally against the spiritual laws of how we live. All tribes have rites of passage, right from birth to becoming a young man, to becoming a hunter, his first steps out of the tepee, out of the tent, to dying — all those are rites of passage.
The closest thing that has been heard in our tribe is that when people were moving — and these were huge tribes moving — if there was an elder that could no longer move with the tribe, by choice, the grandfather or the elder would request that he stay behind. The wish was granted by the extended family, and they would leave with her or him all the necessary food that they would need to survive, the medicines and so on, in the weeks as long as he could survive. There are stories in which these elders eventually joined the group.
This world view that I’m talking about is quite different than Western thinking. Western and Dene traditional Indigenous knowledge are two different perspectives on how we see the world, on how we see each other, on how we see dying and on how we see suicides.
There is palliative care around the country. Palliative care is where a member has chosen to stay there. Even the palliative care unit, that place where this person is going to pass on, is not built and designed for an Indigenous person. One, a bed that is constructed of steel is not the place for a dying elder. So many times, we’re always requesting that the person go home.
Suicide has really caught up to our young people, and by that I mean iPads, television and all the gossip that happens on Facebook and other social media. Young people are getting hurt by that and killing themselves. That is unnecessary. That should not happen, but it is happening because of colonization and people being assimilated.
Our country up here, because of the tar sands, is impacted — the air that we breathe, the water that we drink. There are more people with respiratory problems than we have ever had. It is not only the people but also the livelihood that we live on.
I look at this Bill C-7 as not belonging to us. I know that Western people, the way they do business, is quite different, very different. I am asked now in the late stages to amend this act. I should have been asked right from the beginning. You should have had Indigenous people sitting down with government people and designing this legislation.
I think Indigenous people are going to be hurt if you don’t put the right, constructive and rational reasons why our people should get involved in medical suicides. In the Dene nation that I belong to, we have debated this. So far, it has not really reached anywhere. I just caught wind of this talk in the last four days, so I’m kind of playing catch-up here, but at the same time, I’m providing material from Denesuline, our world view, and our spiritual laws that are laid down about how we follow this. We are not going to stray from that.
So if you’re going to proceed with this law, you should carefully design it where First Nations who want to opt out of it stay out of it by default of their own laws and their own rules that have been given to them for thousands of years. Do not think that everyone is assimilated so we will be part of this change.
I know that Bill C-7 to amend the Criminal Code (medical assistance in dying) for our people is out of touch with our involvement in this process. That goes with any other legislation that comes along by the Government of Canada.
You’re asking me. I’ve been a chief and a leader for many years. I have travelled the world talking about who we are as a people. As a Dene, I have some very grave questions, and at the end of the day, I know that this is a done deal, so my point of view is irrelevant.
I just wanted to say that much, and I hope that you have understood to some degree my thoughts as a Denesuline that lives by the rules of our people. Our history is long. Our history is what guides us, but more so our language. Our language is descriptive. If there is not a word in our language, then it has never been part of our history. I just want to say that much.
Thank you so much.
The Chair: Thank you very much, Elder Paulette. It was very beneficial to hear from you. My colleagues may have questions afterwards, so there will still be an opportunity to learn from you.
May we now go on to the next speaker, Suzanne L. Stewart, Director, Waakebiness-Bryce Institute for Indigenous Health and Associate Professor of Dalla Lana School of Public Health, University of Toronto. She is also Chair of the Aboriginal Section of the Canadian Psychological Association and is committed to advancing Indigenous healing issues through the discipline of psychology.
Suzanne L. Stewart, Director, Waakebiness-Bryce Institute for Indigenous Health and Associate Professor Dalla Lana School of Public Health, University of Toronto, as an individual: Thank you very much.
I just want to thank our Elder Francois Paulette. Mahsi’cho.
My colonized name is Suzanne Stewart. My real name is Etsey Doctor Wedson. I am from the Yellowknife Dene First Nation in the Northwest Territories. I have lived and worked on Haudenosaunee and Anishinabe territory at the University of Toronto for the last almost 15 years. I am grateful to be here and thank you all for inviting me and making the time to hear some of my comments about the revisions to the Criminal Code around medically assisted dying.
I have a number of issues that I would like to share with you that come from the last 20 years of both clinical and research work that I have done in Indigenous mental health and health. In addition, I was actually also a member of the Expert Panel for the Canadian Council of Academies 2018 report on medical assistance in dying.
Given that sort of background, depending on the time that it takes me to share this, I have about five interconnected and overarching issues that are really critical to these revisions to Bill C-7 as they relate to medically assisted dying with Indigenous people. I’m going to conclude the presentation of these issues by posing questions back to all of you, the government, regarding your accountability to the issues that I’m raising.
I think one thing that isn’t adequately addressed within the bill is the issue of diversity. There is a diversity of Indigenous peoples and a diversity of views of medically assisted dying. For example, we have regional, urban and remote First Nations reserves. We have individuals who are First Nations people who are status or non-status Indians. We have the Métis. We have Inuit. We have two-spirited and transgendered perspectives. These perspectives on the issue of MAID are all highly variable. Further, different Indigenous individuals and communities have varying world views based on Christianity and on traditional Indigenous cultural belief systems. In some regions, there are traditional medicines and traditional healers that historically have had methods of relieving suffering through ending life, but these are based on traditional spiritual knowledge and not in Western medical science.
Other critical issues that I do not believe Bill C-7 has adequately addressed are the issues of racism and exploitation. It’s well documented that Indigenous communities have historically experienced and presently experience racism and exploitation in medical systems of all sorts in Canada. Medical procedures have been documented as often being unethically imposed on Indigenous people, frequently without consent, and for social and political reasons based on the Indian Act and Euro-Christian-Canadian values, not medical rationale based on Western science. Indigenous people mistrust the medical system on these accounts and will not have equitable space or access to MAID, given this context. Adverse outcomes, such as death, for Indigenous people seeking health care have occurred as a result of both personal and institutional racism and exploitation. A trusting, transparent relationship between Indigenous patients and health care professionals is one of the key pieces that is missing, and this is particularly critical for MAID within the health care system. As Indigenous peoples cannot currently have a trusting and transparent conversation with any health care provider regarding MAID, they are possibly or potentially being excluded and exploited the way that Bill C-7 is currently written and would be rolled out.
Another critical issue is health literacy. Due to the burden of the legacy of residential schools and child welfare systems, which include but are not limited to the Sixties Scoop, Indigenous people may lack the Western health literacy that would enable them to make an informed decision regarding MAID compared to people who do not live with this colonial trauma.
Further, Indigenous peoples do not have equity due to the colonial construction and operation of Canadian society in the health care system and may not be able to advocate for themselves, particularly with loaded issues like MAID, to ensure they are not influenced unduly and without their voice being present. There is a lack of support for Indigenous peoples holistically in society, including in the areas of housing, food security, sovereignty, education and employment, career development, mental health services, medical services, and child and youth support. These are all strong factors that need to be addressed, as these create greater vulnerabilities regarding health literacy and access to MAID.
Another critical issue is community needs and interests. It is contentious that the Canadian federal government is currently investing in MAID for Indigenous populations when communities are unanimously interested in life-affirming, healing solutions rather than end-of-life solutions. For Indigenous peoples —
The Chair: Ms. Stewart, may I please ask you to wrap up? Thank you.
Ms. Stewart: These resources devoted to MAID may be viewed as part of the government’s continuance of its goal to perpetuate the legal and systemic genocide of Indigenous people.
Further, health care in general is not equitably accessible to Indigenous people, and MAID information, assessment and provisions face similar barriers. This also speaks to the need to develop Indigenous, community-driven psycho-education materials; clinical Indigenous culturally safe and trauma-informed training for all MAID health professionals; and Indigenous culturally based services for MAID as standard practice in all health care settings offering MAID. These issues are really not adequately addressed in the current legislation or the suggested revisions.
The Chair: Thank you, Ms. Stewart.
We will go to our last panellist for the third panel, Dr. Rod McCormick, Professor and Research Chair, All My Relations Research Centre, Thompson Rivers University. Dr. McCormick has experience in counselling, psychology, and Indigenous mental health and suicide.
Dr. Rod McCormick, Professor and Research Chair, All My Relations Research Centre, Thompson Rivers University, as an individual: Thank you. I would like to say, “What she said,” but I’ve been editing my notes to try to keep it under seven minutes.
Shé:kon. My name is Rod McCormick. I’m Mohawk, Kanien’kéha. I would like to thank the senators for this invitation to appear before you. I am talking to you from my partner’s traditional and unceded territory in Tk’emlúps te Secwépemc Nation. I’ve been asked to provide my opinion on Bill C-7. I’ll limit it, because of time, to two sections: the one about mental illness and the one requiring a person’s natural death to be reasonably foreseeable.
I was trained as a psychologist and psychotherapist, and after many years of clinical experience with Indigenous peoples, I like the fact that the proposed change to MAID states that a person whose sole underlying medical condition is a mental illness is not eligible for MAID. As was mentioned by previous witnesses, I do not believe we have adequate safeguards in place for this provision of allowing MAID due to mental illness.
One of the areas of psychology I have worked in is suicide prevention. For several years, I ran a suicide prevention support group for teenagers in the Yukon. I also conducted research on the healing journeys for suicidal youth and adults who had recovered from being suicidal.
A few common messages emerged from those who recovered from being suicidal. The first was that youth shared how their thinking was very distorted when they were suicidal. Other distorted beliefs were that there was no hope of helping with their suffering and no chance of ending the pain. They believed life wasn’t worth living and that others wouldn’t care if they killed themselves.
In recovery, they realized how inaccurate these beliefs were. In hindsight, they shared the message that they thought suicide was a permanent solution to a temporary problem. The message that MAID presents to those who are suffering is that when the suffering becomes more than they can tolerate, they can have medical professionals end their lives for them. This message undermines the whole concept of suicide prevention.
My next comment refers to the proposed change in Bill C-7 that removes the requirement that a person’s natural death be reasonably foreseeable. Referring to the semantics of the term MAID when considering Bill C-7, the proposed change would mean that the act should more aptly be called medical assistance for dying versus medical assistance in dying, where the latter implies just speeding up the death due to terminal illness. From an Indigenous perspective, it seems ironic to discuss these new opportunities to die when we are second class citizens in Canada with regard to medical assistance in living.
Although there are many variations of thought amongst Indigenous peoples in Canada, there are some common similarities in terms of how we view life. One belief is that life is given and taken by the creator, and humans shouldn’t be interfering with this. This is also the belief of the Catholic religion, which has a big influence on Indigenous peoples. It’s interesting to note that bishops in the Northwest Territories, a territory where half the population is Indigenous, released guidelines instructing priests to refuse funerals for people who choose assisted dying.
For Indigenous peoples, there is an emphasis on responsibility to our families, our communities and to our lands. This is different, I believe, from the Western focus on the individual and on individual rights. MAID and Bill C-7 are, therefore, culturally encapsulated in that they emphasize the individual’s right to autonomy and choice without taking others into consideration.
To paraphrase another witness, we, as Indigenous peoples, live shorter lives. Our babies die more often of preventable diseases. Our friends and family die of preventable diseases. We watch many prematurely end their lives and experience death in custody, in the care of social services and the justice system. Our people die of complex and higher rates of disease than the general population. So when we’re already overrepresented at every stage of this health system, it seems ironic to provide yet another path to death.
Just quickly, the barriers: Remoteness, accessibility barriers, transportation issues, and limited access to disability, health and social services are a real problem. The COVID pandemic has made things worse. We have seen an increase in domestic violence, suicide and drug overdoses. Instead of a new tool for assisted death, we would really like better access to counselling services and mental health services and palliative care and disability services.
I’m concerned about access issues as well, as physicians are unlikely to fly into remote communities to administer this. Does this mean community nurses will do this? Most of them live in very small communities, so assuming the role of the death provider can be problematic. I don’t think people want to travel to the big city hospitals to have this performed.
Palliative care, as our elder mentioned, is different for us. We need big rooms because we have lots of visitors come. We don’t tend to have culturally appropriate and accessible palliative care.
Lastly, in terms of disabilities, roughly one third of Indigenous peoples in Canada have a disability that limits them in their daily activities, and about 40% of those have a severe or very severe disability. Bill C-7 seems to open the door to anyone with disabilities to seek MAID. This is not going to make things any better for our people given the high rates of disabilities.
Given our history with coerced sterilizations and other strategies for cultural genocide, it is understandable that Indigenous peoples would be distrustful of this proposed bill.
Finally, we need data. We don’t have data on MAID and the problems and so on experienced by Indigenous peoples. I think it’s only responsible to provide that information before you make changes to repeal provisions that require a person’s natural death be reasonably foreseeable.
I’ll end there. Thank you, Nia:wen.
The Chair: Thank you very much, Dr. McCormick.
Thank you very much to all the panellists. You certainly have brought a point of view that we must take very seriously. Thank you, Elder Paulette, once again for making time for us as well. Senators, we will go to questioning.
Senator Petitclerc: My first question will be for Mr. Zinger. Thank you for bringing to us the very unique perspective on MAID in federal corrections. I am wondering if you had the chance and if you looked in your expertise and what you considered at what falls under Bill C-7, which we have in front of us and which, as you know, amends the Criminal Code, and what would or should fall under the Corrections and Conditional Release Act and its regulations. Do you have a perspective on that?
Mr. Zinger: Thank you.
I think I’ll respond to this by saying that one area that I mention as the second area of concern is the fact that under the Corrections and Conditional Release Act, until 2016, any death in custody had to be investigated by the Correctional Service of Canada, and the report of the National Board of Investigation had to be sent to my office.
In 2016, with the arrival of MAID, for a reason that is still unclear to me because certainly my office was never consulted, Corrections succeeded by putting provisions that would exempt them from conducting internal investigations of MAID. That is, in my view, unacceptable. It is escaping accountability. It’s not open and transparent, because a death by MAID is not just a cause of death that we’re looking at. It’s often issues about whether Corrections was able to fully provide proper health care and that the death was not, if you want, premature because of poor access to health care provided by Corrections.
The same thing can be said that in those investigations you should look at whether Corrections did everything they could to facilitate the placement of an individual who is palliative or end of life into the community where MAID can be provided much more consistently with the legislation in terms of choice and time and how.
Senator Petitclerc: Thank you very much.
I have a question for Dr. McCormick. The question I have is: You are probably aware that in January, the government announced the launching of a new engagement process for the co-development of distinctions-based Indigenous health legislation for First Nation, Inuit and Métis health care. I want you to let us know what you would want this to look like or what should be considered when it comes to MAID and how MAID should be, if you think it is the case, a part of this engagement. Do you have an opinion on that?
Dr. McCormick: I’m sorry. On these national engagement meetings, looking at changing health care for Indigenous peoples, I haven’t been part of them. I haven’t been invited so I can’t comment on what they are deliberating about other than the fact that I think what precipitated it was clear evidence of racism in the health care system.
Accessibility is a huge one for us. Some of the safeguards for mental illness, for instance, talk about having various mental health professionals assess the person and to ensure that people are aware of all the services or alternatives they have to medical assistance in dying. Unfortunately, a lot of those services, even the assessment services, are very difficult to access realistically. I think that sense of hopelessness often comes from not realizing what alternatives are out there because they are not evident in small communities. I do think, however, we have our own Indigenous ways of helping people, and those are often underutilized. I have argued for the need for mental health navigators within our communities who can help Indigenous people access mental health services, because it’s really a hard thing to do.
I don’t know if I answered your question, senator.
Senator Petitclerc: Yes, thank you.
Senator Batters: My first question is to Tyler White from Siksika. I would like to ask you, with respect to the inadequate Indigenous consultation on Bill C-7, Minister Lametti told our committee yesterday that they did the best they could within the time frame they had. Could you elaborate on why extensive Indigenous consultation should be imperative on a bill like this? Also, could you please tell us what you think the government still does not fully understand about this issue due to a lack of meaningful consultation with Indigenous peoples?
Dr. Fung: If I may. Tyler regretfully had a family emergency and had to step out of the meeting, but I could answer on his behalf, if you would like.
Senator Batters: Well, actually, I might direct that question then — and I may repeat it, if she wasn’t quite listening — to Suzanne Stewart. Would you mind answering that question, Ms. Stewart? Do you need me to repeat it?
Ms. Stewart: No, I was listening to the question.
Senator Batters: Okay. Thank you.
Ms. Stewart: Why is the consultation important? Well, because Western biomedical health systems and services such as MAID — we’re talking about MAID as a health service and how we’re going to regulate it — have historically been imposed on Indigenous people, usually to their detriment at the least and harm and death in the worst case. It really boils down to a basic issue of autonomy and self-determination around health care as well as access.
Indigenous people lack the type of autonomy and self-determination to be well that all other non-Indigenous people have in Canada and that all other non-Indigenous people take for granted. It really boils down to the racist, colonial, patriarchal legislation that created all of these rules that we are all still living by and working by in Canada and that govern this system. In order for this system to change, Indigenous people need to be consulted and asked, “How does this system need to be changed so it’s not harming you?” Clearly, in 2020, society and its governmental systems are still not able to understand what it is that’s harming Indigenous people, even though it’s patently obvious and it’s all around us all the time.
I don’t know if that answered your question or not.
Senator Batters: Yes, it did, and I really appreciated your opening statement. You had a very precise term I’m going to look back at later, because I thought it was very well put.
Ms. Stewart: Remind me what it was so I can use it again.
Senator Batters: I’m trying to remember. I made a note to look back at that later.
I would also like to direct a question to Mr. François Paulette. Thank you, Mr. Paulette, for joining us today. You are a respected Dene elder and leader, and you provide us with an important perspective. I know that you’ve previously spoken to media about doctor-assisted suicide, stating that medically assisted suicide is not part of Indigenous culture. You had a bit of time today. Of course, we would love to hear from you for unlimited time, but we don’t have unlimited time. Mr. Paulette, given the government’s inadequate consultation with Indigenous peoples on this issue, what do you think the government has missed on this issue from your perspective?
Mr. Paulette: I think first and foremost the knowledge holders, the Indigenous knowledge keepers, should have been at the table right at the onset. No two ways. I’m not talking about politicians. I’m not talking about people that are in the mainstream. I’m talking about the elders — knowledge holders. If that approach would have been made, and if I had been asked, maybe at that point I would have maybe sat at this table and provided you with historic knowledge dealing with suicide. As I said from the beginning, suicide never entered our vocabulary until 300 years ago, so it’s new. The suicide today is gone out of proportion.
I’m a recovering alcoholic for going on 47 years. I am a professor at the University of Alberta in the School of Public Health. A lot of my work is around traditional knowledge. I’ve spoken at COP. I’ve been to eight or nine COP meetings at climate-change conferences and talked about traditional perspectives on how we should look after the planet, how we should walk in balance.
To answer your question, I think if it’s not too late to bring in knowledge holders to review, maybe, a specific question that you may have entered into this act that they can speak to. Thank you.
Senator Batters: Thank you very much. I appreciate that.
Senator Carignan: My question is along the same lines as Senator Batters’ question. It’s for Mr. Paulette. Since the minister said that he consulted the Indigenous nations, and you’re saying that you weren’t consulted, can you tell us who was consulted, who was invited, and what process was undertaken, to your knowledge? If other witnesses want to respond, go ahead.
The Chair: Yes, you were heard, and I think Dr. Fung wants to answer.
Dr. Fung: Only if Mr. Paulette would like to pass.
Back in 2016 when Bill C-6 was being discussed, Graydon Nicholas, the thirtieth lieutenant-governor of New Brunswick, an Indigenous lawyer and attorney, had expressed the severe lack of Indigenous consultation. This sentiment was also echoed by the Indigenous Physicians Association of Canada, Dr. Lafontaine at the time. Regretfully, five years later, we’re still in the same boat. No one in our community is aware of the details of this bill, and certainly no one in leadership has been consulted on this. When Australia had debated euthanasia laws, part of the delegate had spoken to over 100 Indigenous communities to get their thoughts on assisted suicide. Over 99.7% of the consulted individuals had expressed strong opposition to it. Now, I’m not aware of any such data of consultation in Canada, but it would have been a start.
The Chair: Thank you.
Ms. Stewart: I think one of the main issues here that’s not being understood, maybe, is that engagement with Indigenous communities requires certain protocols to engage with Indigenous communities and their leaders. After 150 years, the Canadian government has yet to understand or even being close to defining meaningful and genuine consultation or collaboration with Indigenous communities. Backtracking to figure out what the protocol is to engaging with Indigenous communities would be a great start to that. The way that Indigenous communities are approached is usually fairly insulting and disrespectful at an extreme, and dismissive and superficial at best. I think that is one of the issues that needs to be addressed in a genuine way by the government.
Senator Pate: Thank you to all the witnesses and elder for joining us.
My question is for Dr. Zinger. You commented during your presentation as well as in your brief that “the law is currently written and applied makes it easier for a terminally ill prisoner to qualify for MAiD than to obtain parole by exception” and that medical assistance in dying should not take place behind prison walls and should not be a response to an inflexible sentencing regime. Do you agree that prisoners eligible for and seeking medical assistance in dying should first receive compassionate release? Could you please explain what the current barriers to that kind of compassionate release are — particularly to obtain parole by exception — and what the situation is for those with disabilities who are terminally ill in prison at the moment?
Mr. Zinger: Thank you, Senator Pate, for your question.
Two years ago, my office, in conjunction with the Canadian Human Rights Commission, conducted a systemic investigation called Aging and Dying in Prison: An Investigation into the Experiences of Older Individuals in Federal Custody. You can see the publication here. When we did this systemic investigation, we interviewed over 250 men and women incarcerated or serving the remaining of their sentences in the community. Overwhelmingly, none of them said that they would want to die in prison.
The issue becomes why our prisons still have so many people who die, about 40 a year, who are palliative, who are end of life, who suffer severe disability, who are bedridden and who have either Alzheimer’s or dementia. We have at least 700 inmates over the age of 65. The cost to manage these individuals can be two to four times the average cost of a person not in that category. The average cost, as you know, is about $120,000 for men and about $200,000 for women. Two to four times is an extraordinary amount. There are alternatives that would not jeopardize public safety, that would respect more human dignity and be by far greater for society at large.
There are barriers, but the barriers, in my view, are mainly dictated by Corrections itself, by failing to create some of those alternatives proactively, making sure that there are beds out there in the community for those aging and dying offenders. They can certainly finance those beds. This is what myself and the chief commissioner of the Canadian Human Rights Commission recommended, that CSC proactively creates those things so that decisions like MAID would never be made in the penitentiary setting. It would be made in the community, because as soon as a person is palliative or end of life, they would be released proactively and quickly. Only in exceptional circumstances could somebody’s health deteriorate so rapidly that the decision would be made in the penitentiary and the procedure done in an outside hospital. But that would be in exceptional circumstances.
Most of those 40 people who die every year have chronic diseases and are expected to die in the foreseeable future. Most of them would qualify for MAID, and most of them should be released and not managed inside a penitentiary.
Senator Martin: Thank you to all of our witnesses. I feel like we need so much more time to talk about this topic in so much more detail. We’re learning a lot even from today. I feel like we are just scratching the surface.
Elder François Paulette, you said the word for “suicide” is new. It was almost 300 years ago, which is almost double the age of Canada.
Here we are at the very late stages of this bill. I feel really torn in what we have to do. We’re in this process. At this point, I come back to a topic of great importance to me. It’s the explicit conscience protection that needs to be in the bill. We’ve heard from physicians saying even though there is a clause from Bill C-14, the provision in Bill C-14, in practice, doesn’t give the type of protection they need to have in order to practice medicine in Canada. So I was curious. This question is for Dr. McCormick or one of the other witnesses. Would you speak to the importance of explicit conscience protection at the federal level with respect to Indigenous physicians and nurse practitioners?
Dr. McCormick: Senator, I’m not a physician, but I can give you my comments.
I definitely think there needs to be protection both for physicians and, I guess, nurse practitioners or whoever is going to administer this in Indigenous communities. There definitely needs to be those provisions for service providers and for people in the medical profession. I’m also concerned about those compassionate health care providers who might be more prone to use MAID. I guess that’s the flip side of it.
When I worked as a mental health consultant for First Nations and Inuit Health, I reviewed a lot of the treatment centres for Indigenous peoples. In one of them, they were showing me the bubble packs that all the patients receive. There were about a dozen in treatment at the time. I noticed they all had similar drugs — and a lot of these people were younger than me. I asked what that was all about. They said, “With all the local patients, we take them to the local pharmacist who reviews their drugs and gives them prescriptions.” I said, “What is this one that everyone has? It looks like vitamins.” They said, “No, they are T3s.” I said, “Wait a minute here. So all 12 people have been prescribed T3s? How can that be? Two to four a day?” And they said, “Well, the local pharmacist figured that if you are Indigenous, then you are probably in pain, and just prescribes it to anyone who asks.”
The flip side worries me of not wanting to administer it to those who might overutilize it. I’m not trying to sound paranoid here, but we have a bad history in terms of certain medical interventions with the mainstream health care system.
Senator Martin: I think Dr. Fung wanted to respond to this also.
Dr. Fung: Yes, if I may.
A Queen’s University professor and Ontario research chair, Dr. Udo Schüklenk, has asked universities to deny medical school admissions to individuals who hold conscientious objection to MAID. In the cases of Indigenous communities, if a candidate would otherwise qualify for admission, will medical schools deny their admission based on their Indigenous beliefs?
Here at Siksika Nation, we also have an elders’ lodge, and we’re fearful about measures in other provinces. For example, in B.C., with the Delta Hospice, when they declined to administer MAID on site, the government authority evicted the entire hospice staff and had to transfer all of the patients to a different location, only to swoop in to take over administration. What is there in legal language, in the law, to protect our Indigenous institution and care facilities from something like that happening to us? That is very alarming.
Senator Boniface: Thank you all for being here. It has been an interesting and informative panel.
Mr. Zinger, in terms of some of your comments around the administration of MAID in the correctional facility, it comes as a surprise to me that you don’t have access to a case review as such. With respect to this legislation, it appears from your comments that this is correctional policy and correctional practice that is making it occur in the way it is. Specifically in relation to Bill C-7, what would you be looking for in terms of an amendment or some way of addressing your concerns or, in fact, is it more to do with addressing the broader correctional policy at the federal level?
Mr. Zinger: Thank you, Senator Boniface.
I would say two things, and the first one would be to prohibit a MAID procedure to be done inside a penitentiary. For me, that is really important. Canada should not be in this business of having state-sanctioned euthanasia in a correctional facility. It’s bad optics. It’s bad policy. It’s terrible. If it has to happen, the inmate should be transferred to an outside hospital, and Corrections should have very little to do with respect to the MAID process. It’s much better for Corrections not to be involved in these things.
That is one, and the second one I think is important. I have no idea why, but in 2016 the Corrections and Conditional Release Act was amended to exempt the service from conducting an internal investigation. By law, typically those reports on death in custody are sent to my office. I think that exemption should be removed. I think it was ill-conceived. My office was never consulted by Justice, by Public Safety or by Corrections on this. If they had, I would have been up in arms about it. I don’t know what motivated that. I don’t know whether Corrections thought that there would be dozens of cases and the workload would be untenable, but clearly that has not been the case. I believe it’s very poor policy to have that requirement.
You’re correct that when we’re talking about having more options like geriatric releases or medical parole, these are broader issues that go far beyond Bill C-7, but unfortunately they are interlinked because the lack of options that Corrections has pigeonholed itself in is having an impact on MAID decisions and MAID processes. Thank you.
Senator Boniface: I want to be clear. From your comments, it’s not that you’re saying individuals should be denied MAID because they’re in prison; you’re saying if they exercise a request for MAID, it should be done in a setting other than prison. Am I correct?
Mr. Zinger: That’s correct. The best-case scenario is when Corrections is dealing with people who are at the end of life or meet the requirement, they should be pushed outside Corrections. They are no longer required to be in Corrections. If they are in Corrections, then at a minimum the procedure should be done in an outside hospital. In the exceptional cases of the compassionate release or Royal Prerogative of mercy, all of that should be done outside. There is a big onus and responsibility on Corrections to create those alternatives. The simple fact that there are no alternatives creates the ethical dilemmas we’re in currently.
Senator Boniface: Thank you.
Senator Dupuis: My question is mainly for Mr. Paulette. I also want to hear from Ms. Stewart and Mr. McCormick, since I understand that Chief White wasn’t available.
My question is as follows. As elders, you told us that you’re the knowledge holders. I certainly understand that a great deal of Indigenous customary law lies in your knowledge.
In your opinion, should community leaders and elders be the people consulted regarding the issue of medical assistance in dying? Should decisions and discussions take place in each community? Should these discussions involve community leaders and elders or just elders? I want to know where you stand on this.
Mr. Paulette: Can you repeat the question?
Senator Dupuis: I’ll repeat my question, Mr. Paulette.
You told us that you and other elders are the knowledge holders, meaning the keepers of a large part of a community’s customary law. You also said that, as elders, you should have been consulted from the start.
Should these medical assistance in dying issues be discussed and resolved in each community? Should these discussions be held with community leaders and elders, or only with elders?
Indigenous doctors and nurses came to tell us that we must pay attention to and respect the wishes of certain people in the communities who want to receive medical assistance in dying. In your opinion, who should discuss this first and then make the decision?
Mr. Paulette: Thank you for that question.
Yes, all tribal people have their knowledge holders. Depending on the position or the subject matter, there are different elders that hold different sources of medicine holders. Like, in my language, when we say:
[Indigenous language spoken.]
This word means grand. It has a high place. It’s like saying the river, the grand river, or the grand mountain.
Now there are other people that are descriptive, and you say:
[ Indigenous language spoken. ]
That means someone who knows that particular subject matter.
[ Indigenous language spoken. ]
The person who knows about medicine.
So there are all these variables of knowledge holders. That question lies with the tribe, and sometimes the questions are asked of the chief and the council. To some degree, that’s the right protocol, but eventually, the protocol lies with the knowledge holder and the person that is seeking research or questions of a sort that is like this suicide talk. Do you understand what I’m saying?
Senator Dupuis: Yes. I think that I understand.
If I understand your explanation correctly, depending on the issues, and in this case they’re all health issues, the leaders should have the authority to discuss the issues. However, the leaders should do so with the direct involvement of the people who hold the power, meaning the elders, who hold the knowledge in the field of health. Is that right?
Mr. Paulette: Yes.
Senator Dupuis: Thank you.
Do Ms. Stewart and Mr. McCormick have any other perspectives to share on this issue?
Dr. McCormick: No, I defer to what the elder said.
Ms. Stewart: I also agree with what Elder François says. Meegwetch.
Senator Boisvenu: Thank you. My question has already been asked.
Senator Harder: The panel will know that Canada has had medical assistance in dying now for almost five years and this bill seeks to perfect that law in light of court rulings.
My question is for Professor Stewart. In your view, can suicide prevention efforts co-exist with medical assistance in dying? Suicide and MAID are two vastly different moral, ethical, emotional and, indeed, legal acts. What measures can the government take to ensure the distinction is clear for Indigenous communities beyond those efforts that have obviously not succeeded since MAID was first introduced almost five years ago?
Ms. Stewart: Thank you for your question, senator.
You’re raising a really critical point. There is such a differentiation between suicide and medical assistance in dying. Part of it is being able to provide people — and not just Indigenous people, for instance, but also health care providers and other auxiliary supports to wellness in Indigenous communities — with the correct information.
The misinformation that exists in Indigenous communities around anything to do with health care is at least tenfold more than what you see in the general population. That also includes health care providers. For some reason, health care providers who seem to go to Indigenous communities have blinders on in terms of what the real information is and how that needs to be handled.
In terms of the safeguard to that, I think providing Indigenous-based, culturally safe, culturally based information to people about what MAID is, how it’s used and what it is, is really the key thing here, to provide accurate, community-driven, psycho-education to people at all levels within Indigenous communities about this.
I don’t know if that’s the sufficiently glamorous answer you were looking for.
Senator Harder: It is indeed. I want to emphasize that, in your view, MAID is not incongruous with Indigenous society. In other words, is it hostile in and of itself, or is it the application?
Ms. Stewart: I don’t think it is. It’s the application that is, as well as what almost every witness has spoken to today, and that is the issue of diversity. There is a vast diversity in world views and belief systems around medically assisted dying. We will call it that in a Western biomedical context, but I have also sat with palliative care doctors who are Indigenous who have told me they’ve worked with many traditional healers in different regions who had traditional ways of ending people’s suffering when there was no hope to recover. That was, again, in consultation with the family, with the community, and based on spiritual knowledge, and not on these other perhaps mitigating or non-mitigating factors that come up in this complex colonial position that the health care system is and Indigenous people are, by virtue of how everything is set up.
Senator Harder: That’s very helpful to me. Thank you.
Ms. Stewart: I just want to add one thing. Remember that it’s going to be different in every community. That’s part of the issue here. We are taking a pan-Indigenous view. Someone earlier asked, should we have different policies and programs for each community? Absolutely. Every community needs to make their own decisions about how this is going to look based on consultations with the knowledge keepers in each of those places, including in urban areas, where most of our people live right now.
Senator Harder: Right, but that doesn’t require a different legal context; it’s in the application of the legal context?
Ms. Stewart: Exactly.
Senator Harder: Thank you.
Senator Cotter: This is really a follow-up to Dr. Stewart regarding the question Senator Harder asked.
One aspect that the government is facing right now, as best we understand it, is a kind of a constitutional and legal imperative to address some of these more recent questions of medical assistance in dying. Many of you this afternoon have noted, and as we heard from Dr. Lafontaine and many others in our pre-study, that the dialogue has been insufficient with Indigenous communities.
I’m wondering if you could speak a little more to what you think could happen at the same time that there is some kind of legislative initiative around Bill C-7, where there is an agenda that is driving that forward that even the government can’t resist. What could happen in the coming months or years that could be more responsive to and culturally respectful of the needs of Indigenous communities to receive and adapt the medical assistance in dying regime to their cultural philosophies? What thoughts might you have there?
Ms. Stewart: From my perspective as an Indigenous person who does Indigenous health service and policy research as well as delivers clinical psychology services to communities, if someone were asking me how I would do this — I’m sure there are many other ways to do it, and I think Rod should also answer this question — but I think that should be left to every community, however that is grouped, if it was regional or culturally based. It’s ridiculous that we even have to talk like this still, but we would allow Indigenous communities to create their own policies and programs around the delivery of MAID within their communities.
That would give agency to Indigenous people who may have a higher level of agency and autonomy to decide something like the following: “I will go back to my community and engage in MAID there. I will have the option to do that where it’s culturally based and culturally safe,” or, “I’m going to do it in a city, in an urban Indigenous health care context,” or, “I will go to a non-Indigenous health care context and deal with it as a non-Indigenous person.”
But the idea is giving that autonomy to Indigenous people to be able to do that.
Senator Cotter: Thanks. Maybe Dr. McCormick might also have a view.
Ms. Stewart: I would like to hear what Dr. McCormick thinks, too.
Dr. McCormick: Thank you, senator. I would add just two points. I agree with what Dr. Stewart had said.
In terms of alternatives, I think the term was “reasonable treatment alternatives.” A difficulty is that people have a sense of hopelessness because they don’t see alternatives within their community. They are not sure how to stop the pain. They are feeling a sense of hopelessness. They need to be aware of alternatives. Those need to be provided to them.
The other part is that, too often, what helps people who are suffering is that the community declares a state of emergency, often with the case of suicide, and all kinds of services pour in for a brief period of time. Unfortunately, the way to fast-track mental health services is to declare a state of emergency. That shouldn’t be the case at all.
I have been arguing with First Nations and Inuit Health to please move the continuum of care up from crisis intervention and post-intervention to prevention. With MAID, we have yet another aspect of the continuum of care. It seems to me that so much money and attention is focused on the wrong end of that continuum of care.
So those would be my additions to those comments.
Senator Cotter: Thanks to you both.
Senator Richards: Thank you very much. I was going to ask Mr. White a question, but I guess he is gone now, so I will just say that Dr. Stewart pretty well answered what I was going to ask.
However, I’m just wondering if Dr. McCormick could mention if there would be an existential derailing of our common obligation toward others here. The line between MAID and the line between suicide becomes blurred, not only in Indigenous communities but across the country. I’m wondering if you, who worked with people all your life in this regard, might be able to answer that.
Dr. McCormick: Thank you. That’s a tough question. It’s a good question.
I would have to think more on this one, but the similarities for me, from an existential point of view, is that sense of meaninglessness or hopelessness. If we can address that and if we can have that sense of hope, then I don’t think we’ll have the demand for either the suicide or MAID, because I think that occurs often for people who just can’t see any alternatives.
I don’t think I’ve really answered your question.
Senator Richards: No, doctor, you have. I agree with you about this. It’s a very difficult question to answer, but it’s an important thing to contemplate. Thank you.
Dr. McCormick: Thank you.
Senator Pate: Mr. Zinger, I want to follow up with a question that Senator Boniface raised. In terms of the issue, for some people who haven’t worked in and around prisons, it may be less obvious, but when I do training for lawyers, judges, social workers, doctors or psychologists over the years, we spend a lot of time talking about the challenges of people being able to make choices in prisons. Your office has documented well the inadequacy of complaint mechanisms and that sort of thing. Louise Arbour and the commission of inquiry have talked about the unwillingness of many doctors to work in prisons because they can’t ascertain that someone is giving free and informed consent to even procedures sometimes. Is that what is behind your suggestion of not having medical assistance in dying in prisons?
Also, given that one of the pushes is to look at also making it available for those with mental health issues alone — and I can’t imagine how many requests you are getting at your office — I know that, since the introduction of the medical assistance in dying bill in 2016 and my entry into the Senate, we have received many requests from individuals to assist them to access medical assistance in dying because of mental health issues, because they end up in segregation, whether it’s called medical observation, et cetera, most of the time.
I would like to have your response to the first question. Then, second, what would you think about expanding the use of medical assistance in dying without the kinds of amendments that you have already recommended?
Mr. Zinger: Thank you.
I don’t envy your position as legislators. This is an area where, unfortunately, good intentions can have unintended consequences. In this area, there are some policies that may appear to apply equally to all and appear to be sound but that might, in the end, have differential or discriminatory outcomes.
We have to ask the question about who are those men and women who are in prison. To give us a framework to think about, there was a recent report by a group of expert and the special rapporteur from the UN that issued some pretty stern cautionary notes. Those experts were in the area of extreme poverty, disability and older persons. What they suggest is that there are vulnerable groups, and we certainly heard today from many eloquent panellists on Indigenous issues. The men and women who are in prison, who are they? Thirty-five per cent of the men have serious psychological or psychiatric issues that require services. For women it’s about 50%. There is a gross over-representation of Indigenous people in prison, reaching now 31% when they only represent about 5% of the Canadian population at large. We have an inordinate amount of brain injury, intellectual deficits, cognitive deficits, prevalence of substance abuse, low level of employment history and very low education.
The problem here is that we need some safeguards if this is going to be rolled out and won’t have these unintended consequences.
One area where I’m disappointed with Correctional Service Canada is a year ago when legislation was amended to introduce the structured intervention units, the legislation called for an independent patient advocate, and funding was actually provided to the service. To my knowledge, that has yet to happen. These are the kinds of safeguards that are required so that the men and women who are incarcerated can know about their rights when it comes to accessing health care. Unfortunately, the recommendations that my office and the Canadian Human Rights Commission made two years ago fell on deaf ears, so we are in a situation where we have an inordinate number of people who should probably not be in prison and could be managed in the community better and are now caught in a system that may have very tragic consequences for them.
The Chair: Senators, this brings us to the end of our panel.
I want to thank Elder Paulette and all the panellists for presenting today. I can tell you that we are much richer learning from you, and we are also very much aware we have a long way to go. Thank you very much for your presence here.
Senators, as we begin our last panel for the day, I want to thank you all for your patience and understanding as we navigate the technical issues related to virtual and hybrid hearings.
In our final panel today, we have Dr. Derryck Smith, Clinical Professor Emeritus, Department of Psychiatry, University of British Columbia. He is on the Dying With Dignity advisory board. His expertise and research are related to traumatic brain injuries, ADHD and disability assessments. He is a past member of both the BC Medical Association and the Canadian Medical Association.
Dr. Derryck Smith, I want to say to you that I really appreciate your coming back and not giving up on us. I assure you that we really do want to hear from you. Welcome. The floor is yours, doctor.
Dr. Derryck Smith, Clinical Professor Emeritus, University of British Columbia: I’m a psychiatrist in Vancouver, and I wanted to speak to you particularly about the provision in proposed Bill C-7 that deals with psychiatric patients. I wanted to speak about my experience with two patients who have received MAID based entirely on a psychiatric illness. I believe you were told earlier that no one in Canada has received MAID just for psychiatric illness, and that’s not correct. There are probably about five people. I’m going to tell you about the two people I’ve been involved with.
The first one is a matter of record because it was heard before the courts in Alberta. The case is E.F. and it was before Bill C-16 came into force. Persons wanting to get MAID had to apply to the courts. E.F. applied to the court, and the Court of Queen’s Bench granted her assisted dying. Canada and B.C. appealed that, and it went before the Court of Appeal. They came down with a compelling discussion of E.F. and the difficulties she was having.
I will read from the judgment:
E.F. is a 58 year old woman who endures chronic and intolerable suffering as a result of a medical condition diagnosed as “severe conversion disorder”, classified as a psychogenic movement disorder. She suffers from involuntary muscle spasms that radiate from her face through the sides and top of her head and her shoulders, causing her severe and constant pain and migraines. Her eyelid muscles have spasmed shut, rendering her effectively blind. Her digestive system is ineffective and she goes without eating for up to two days. She has significant trouble sleeping and, because of her digestive troubles, she has lost weight and muscle mass. She is non-ambulatory and needs to be carried or use a wheelchair. Her quality of life is non-existent. While her condition is diagnosed as a psychiatric one, her capacity and her cognitive ability to make informed decisions, including providing consent to terminating her life, are unimpaired. . . .
This is a woman I assessed, and I put my report before the court. I was not asked to examine her. However, the trial judge did speak with her family physician, her husband and her children, and granted her assisted dying. She was the first person in Canada to have assisted dying based entirely on psychiatric illness. That is, as I say, before Bill C-14.
The second patient, whom I saw in Vancouver, was a 45-year-old woman who’d suffered from anorexia nervosa since she was 17. She had undergone a gauntlet of treatments, including inpatient and outpatient. She had been trialled on numerous medications and had been certified on a number of occasions under the Mental Health Act. She had been forcibly re-fed with tubes, against her will. At the time I assessed her, she had virtually no social life. She was living by herself. There was no joy in her life. I was convinced she was suffering. She was very concerned she would be re-certified under the Mental Health Act and re-fed. Re-feeding left her feeling violated, and when she gained weight as a result of it, she was full of self-loathing. I assessed her to have the capacity to agree to MAID.
My usual practice is that I try to interview as many relatives as I can. In this case, she came along with her husband. Her husband is a retired Supreme Court judge. I asked him what he thought about his daughter’s wish. He told me that although it was breaking his heart, he strongly supported his daughter because her life was miserable and he could not bear to see her carry on. I also asked him what he thought about her capacity, as he had considerable skill in assessing capacity. He agreed that she could agree to assisted death, and she did.
The reason you don’t hear about assisted dying with psychiatric patients is that the national registry does not gather these statistics. There is a category called “other,” and I suspect that people with psychiatric illness are lumped in there. From my contacts across the country, I believe there is probably a total of five people who have had assisted dying because of a psychiatric illness.
This is an important group of people because they are suffering just as much as anyone else who has other so-called medical illnesses. In fact, it’s very difficult to separate psychiatric illness from medical illness. The seat of psychiatric illness is the human brain, and the human brain is part of the body. I see no reason why psychiatric illness should be separated from medical illness. I think that to do so is a gross discrimination against psychiatric illness. It adds to the stigma of psychiatric illness and probably, in my humble view, violates the Charter.
You’ve also heard testimony that doctors are not capable of providing capacity assessments. I don’t know where this idea came from. Canadian doctors — and, in particular, psychiatrists — are fully trained to do capacity assessments. I have sent in a number of materials. There are aids that Canadian doctors can use to assist with capacity. The Hopkins Competency Assessment Test and MacArthur Competence Assessment Tool are two of the many tools available to determine if a person has the capacity to agree to any kind of medical intervention, including assisted dying. So I don’t have a problem with that.
The Royal College of Physicians and Surgeons, which trains all specialists, has a special module on teaching capacity assessments. Family doctors routinely have to do capacity assessments, because without a person being able to agree to medical treatment, we, as doctors, can’t do anything.
I also sent along a paper that I published in the Canadian Journal of Psychiatry, which outlines the legal history of what’s gone on with assisted dying, particularly in relation to psychiatric illness. There is nothing in the Carter decision that prohibits psychiatric patients from applying for MAID. That is what the Court of Appeal found in Alberta. There is nothing in Bill C-14 that prevents psychiatric illness from being the basis for MAID. That is the basis upon which my patient with the eating disorder had this. Bill C-7, for some reason, has decided that psychiatric illness needs to be excluded. I am very much opposed to that principle because we will be sacrificing an albeit small number of people who otherwise would qualify for MAID if they meet all the other qualifications.
That’s, in brief, what I wanted to say. I’m more than happy to address any questions that members of the Senate have concerning this issue. Just to summarize, I don’t like to see the exclusion of psychiatric patients. I want to assure the Senate that Canadian doctors are perfectly capable of assessing competency to determine whether a person really has the capacity to agree to assisted dying or, for that matter, any other wide range of medical interventions.
The Chair: Thank you very much, Dr. Derryck Smith. We appreciate your presentation.
We will go next to the presentation by Dr. Timothy Holland. Dr. Holland is a physician and MAID provider and assistant professor at the Department of Bioethics, Dalhousie University.
Timothy Holland, MAID Physician Provider and Assessor, as an individual: First off, let me thank you for the invitation to speak on such an important bill. It is truly an honour.
While I could speak at great length about every line of this bill, I recognize that I’ve been invited here because of my role as a MAID assessor and provider. As such, I would like to do a quick walk-through what a MAID assessment and procedure look like because I feel like there’s been a lot of confusion about what is truly involved.
Let me be clear. A MAID assessment is no trifle affair. In order to perform a MAID assessment, we must have full knowledge of a patient’s comprehensive medical status. We must perform a robust capacity assessment. We must ensure the patient fully understands all options available to them so that we can be sure the patient is making a truly informed decision. And we must also understand who that patient is as a human being and understand the values that have guided their life. Only then can we truly assess if they meet the criteria for MAID and feel confident that this is truly the patient’s own decision, free of coercion.
These assessments often take hours. While the complexity varies from case to case, even the least complex cases will take an hour on average. Even before we meet a patient, we will review their medical file. When we do meet with the patient, we spend time to understand how they’ve experienced their journey through their illness. We invite the patient to bring any loved ones to the assessment so we can take the time to speak to these loved ones and place the patient within the context of their family and network of care.
Even after the formal assessment, we often have many calls with other health professionals and loved ones to answer their questions and also to gather more information to inform our assessment. We recognize the assessments are an incredible responsibility, and we do not take the task lightly.
It is also worth walking through what a procedure looks like. Personally, I had a very different understanding of what a procedure would be before actually becoming a provider. In Canada, there are three primary medications commonly used in MAID — midazolam, propofol and rocuronium.
The first medication we administer is midazolam; this is similar to Ativan or Valium. In this medical regimen and dosing range, it is used to create a sense of relaxation. Many patients do drift off with the midazolam. Many remain awake, in a state of relaxation.
The next one medication is propofol, which creates a deep medical coma. If the patient is not already asleep, they will certainly drift off to sleep at this point. At the large doses used in MAID, the propofol may induce such a deep coma that the patient stops breathing. However, this is not distressing to the patient. In fact, the reason they stop breathing is because the brain no longer worries about breathing.
Finally, once the deep coma is induced, we administer the rocuronium, which is a paralyzing medication. If the patient has not yet stopped breathing, they definitely will do so at this point. Once the patient stops breathing, the body cannot receive oxygen. Without oxygen, the organs shut down, one by one by one, until the heart stops beating and the patient dies.
From the patient’s perspective, this is a relaxing drift into sleep. From the family’s perspective, they watch their loved one drift off to sleep and then slowly stop breathing.
There are some other adjunctive medications that are often used, namely lidocaine and bupivacaine. If the committee would like any more information on these medications, I invite your questions.
However, a MAID procedure is more than just the medications. I think many people envision the procedure as a mercy or simply an end to suffering. However, it is so much more than that. It is a beautiful and inspiring event. We must understand that the patient’s medical condition has robbed them of their life long before the MAID assessment and provision. The loss has already happened. MAID gives the patient back control over their life and disease. It is a positive thing.
We are all going to die. When that time comes, we all hope to be surrounded by the people we love and to be able to say those perfect last words and have that moment of peace to allow our loved ones to say those perfect farewells. That’s what happens at a MAID procedure.
I feel so incredibly fortunate that I have the great privilege to be witness to these events, a lifetime of love and connection all culminating in this one beautiful goodbye. When it’s done, the families are universally appreciative and thankful. I just really want the committee to understand that this is a positive thing. The tragedy is the illness that has occurred. MAID is the blessing that allows the patient to have control over that loss.
MAID assessment and procedure aside, I would like to quickly turn to some specifics of Bill C-7. My main contention with Bill C-7 is clause 1(2) which proposes to add:
(2.1) For the purposes of paragraph (2)(a), a mental illness is not considered to be an illness, disease or disability.
As an ally to those who suffer from mental illness, I find it very problematic that there would be any line in Canadian legislation that says that mental illness is not to be considered an illness, regardless of the context. However, even beyond the philosophic implications of this clause, I would like to highlight the confusion that this clause will create for assessors.
The term “mental illness” can be interpreted in many different ways. It doesn’t have a fixed definition in medicine. It could mean depression, anxiety and schizophrenia, and often does. However, it could be interpreted to mean dementia or Parkinson’s. In some interpretations, it could be meant to understand grief or even sadness.
Further, as I mentioned earlier, during our assessments, we consider many aspects of a patient’s condition, values, life, when we determine eligibility for MAID. Sadness, grief, depression — these all factor into that.
One of the most important components of eligibility is intolerable suffering. The current wording in the Criminal Code, section 241.2(2)(c) on intolerable suffering, allows the assessor to consider both the illness, disease and disability, which is (2)(a), or the state of the decline, (2)(b), when determining the enduring physical and psychological suffering that is intolerable to that patient. If mental illness is then excluded from (2)(a), this has the potential to create considerable confusion as to whether or not psychological suffering can contribute to (2)(c), intolerable suffering. One might argue that psychological suffering is a mental illness and has been excluded from (2)(a), and therefore cannot contribute to (2)(c), the suffering. However, another assessor could interpret that the patient’s psychological suffering flows through (2)(b), the advanced state of decline, in which case the psychological suffering can’t contribute to (2)(c).
I know it might seem like I’m diving into the subtle nuances of the legislation. However, we assessors spend countless hours interpreting every word in this legislation and trying to sort out how it translates from this legal context into a medical context. The current wording around mental illness exclusion will create confusion and has the potential to create a mosaic where patients with the same circumstances could be denied MAID in some areas and approved in others, depending on how the legislation is understood.
There are a lot of positives here. I’m very happy to see “reasonably foreseeable” is gone. That has been a great source of confusion among assessors since MAID became legal. I’m very happy to see the final consent waiver. However, I do believe there are certain things that could be refined better. Maybe it requires a sunset clause on the mental health exclusion. However, I do congratulate you on this piece of legislation. There are just some other factors that I would like to see a bit further refined.
Thank you very much, and I invite your questions.
The Chair: Thank you very much, Dr. Holland. You certainly helped us.
The next witness is Laurel Plewes, Director of the Assisted Dying Program for the Vancouver Coastal Health Authority.
Laurel Plewes, Director, Vancouver Coastal Health Authority (VCHA): Thank you, chair and honourable senators, for providing me the chance to speak with you today. I am a nurse and the director for the Assisted Dying Program, as you mentioned. My job is to create and run the central hub for MAID within our health authority, that continues to hum with activity, all aimed at addressing and responding to patients’ suffering.
Coordinating MAID allows us to travel through the process with patients, both those found eligible and ineligible, and hear the stories and the impacts that MAID has on their care journey.
We also work with closely with MAID assessors and providers, as well as care teams, to address a variety of issues that arise when a patient requests MAID that identify systemic barriers we then hope to address and remove. I will be happy to expand on those experiences during the question period.
I and others facilitating access to MAID in British Columbia, including many MAID providers, have spent a substantial amount of time considering how to operationalize Bill C-7. The issues I bring forward to you this evening are aspects that require clarification in order for people like me to ensure that a patient’s wishes are kept at the centre of the process, while also ensuring that a patient’s safety is upheld.
In that vein, I would like to address the waiver of final consent and the assessment process for those without a reasonably foreseeable natural death. Let me be clear: I support Bill C-7, and I believe with a few clarifications we will be able to address patient suffering more efficiently.
The waiver of final consent, which to me is one of the most important aspects of this bill, would be tricky to enact in its current state. In order to keep a patient’s wishes guiding the process, I propose that a timeline be placed from when a patient and MAID provider sign the agreement to when the death can take place. Without a timeline, this bill is essentially allowing for advance directives prior to the upcoming judicial review.
I believe the sweet spot would be six weeks from signing the waiver to the potential date of death. This agreement can be amended if the patient wants. The intention of this waiver is to keep the patient’s autonomy over their own death. Once a patient is not able to communicate their wishes, their autonomy is more difficult to maintain. Without a timeline, that patient cannot maintain control over their death. By adding a timeline, it would be more likely that a MAID provider would be available and could provide MAID.
It also keeps families accountable. Some families do not want their loved ones to die, and if the wishes of the patient are not kept recent and central to their thoughts, they may decide to cancel the death. By adding a timeline, it would increase the likelihood of patients receiving MAID deaths as requested.
I now move on to the assessment process for those without a reasonably foreseeable natural death. I ask that clarity be provided in regard to who is ensuring that the patient is being informed of services outlined in 3.1(g). Without additional guidance, that aspect of this bill will be difficult to operationalize.
In my opinion, I believe the safeguard ought to be carried out by the expert, or with guidance from an expert, to guarantee the patient is fully informed and has seriously considered all the services available to address their suffering. If left ambiguous, these responsibilities will fall to MAID providers and MAID programs who cannot be aware of all services available to all groups. Therefore, the patient would not be fully informed, as I believe the safeguard intended.
We also need clarity surrounding the definition of “consult” used in 3.1(e)(1). I believe the intention of this was to require MAID assessors and providers to speak with an expert, without the patient being seen by that expert, to reduce wait times. What this bill leaves out is what information the MAID assessors and providers are charged with gathering when speaking with a consultant. One can infer the intention was for them to gain an understanding of the patient’s trajectory, learn of available care options and hear about potential outcomes. If left up to interpretation, this is a hollow safeguard that will not ensure a patient’s safety. Clarity is required.
Without further guidance and clarification, patients who are suffering will be forced to go to court to address these ambiguities found in Bill C-7.
In summary, I generally support Bill C-7, but we need clarity to keep patients’ wishes at the centre and to ensure patient safety. With that transparency, this bill will address a broader range of Canadians who are suffering intolerably and allow for equitable access to MAID across Canada.
Thank you for your time and for your hard work in hearing all of our thoughts about this bill.
The Chair: Thank you, Ms. Plewes, for your presentation.
We will now go to the next presenter, Delphine Roigt, lawyer and head of the clinical ethics program at the University of Montreal. She is the head of an interdisciplinary support team that provides support to individuals and families seeking MAID and to health care workers who are confronted with this new regime.
Delphine Roigt, Lawyer and Clinical Ethics Advisor, as an individual: First of all, thank you for inviting me. I understand that Senator Dalphond heard me at a conference in 2013, before the law came into force in Quebec, and that is why I came to be invited today. So, thank you, senators.
I have been an ethics counsellor and clinical ethicist in the health care system for 22 years. I had the pleasure and privilege of participating in the consultation that preceded the adoption of the law in Quebec, which has now been in force for several years. Therefore, my intervention today will be rather brief and reflective, because my reflection has been ongoing since the law came into force in 2015.
In Quebec — and I understand the difficulty — the idea was that medical assistance in dying had to be care provided in a continuum of end-of-life care, until the end of life.
Of course, removing the end-of-life criterion, from an ethical point of view, changes things. I’m not saying that it’s good or bad; I’m simply pointing out that the dimension of the therapeutic relationship that was promoted by Minister Hivon in Quebec at the time was that our society had reached that point, and we wanted to make sure that people had a dignified end of life.
Therefore, removing the end-of-life criterion will change the intent of the legislator at the time — in fact, it is called the Act Respecting End-of-Life Care. We are therefore now faced with a law on medical assistance in dying and other types of end-of-life care that will have to be considered.
The reason I’m talking about this is that if I read Bill C-7, I think it’s a good thing to remove the end-of-life criteria. We need to allow people who are not at the end of life to make decisions about their lives when they meet the other criteria, such as the degree of intolerable suffering, incurable diseases, and so on.
The only issue I see — and this is from discussions I’ve had with caregivers in the field, but I don’t know if it’s the same for Dr. Holland or in other provinces — is that we were already starting to see a lot of cases of illness, comorbidities and chronic diseases, and doctors were increasingly questioning where we are in the life and end-of-life process. Over the last couple of years, we’ve realized that the end of life is a situation where you could say, “Would I be surprised if this person died within the next year?” So there were times [Technical difficulties] at the beginning when we were wondering, in terms of criteria, whether we were talking about three months, six months, a month or a few weeks. That led to a lot of discussion. The Collège des médecins du Québec had clarified the issue by saying that we could look at the question more broadly.
So, there is something in the therapeutic relationship that makes it impossible in Quebec for a patient to kill himself with the help of a physician. Assisted suicide, as I would call it, is not provided for in Quebec; we are really talking about medical assistance in dying. It also changes the dynamics, and I look forward to these discussions. This morning, Mr. Ménard spoke to you about certain elements, and he believes that there are still too many restrictions. I don’t know.
Having said that, what worries me is that we are creating two regimes where there would be predictable death and unpredictable death, especially since in Quebec, the patient cannot kill himself. So there is a different process for him or her. There is the question of the length of the assessment, which changes a lot. We can see it from the point of view of equity between two types of patients, those who are at the end of life and those who are not; this could create injustice for some. Others might ask why we are moving so quickly with patients whose death is predictable. I don’t have an answer. I am just raising the question.
Unfortunately, what I often see in my practice in the pandemic are discussions related to, for example, triage protocol, with people saying, “It’s not true that it’s going to be decided for me, I want to live, I have a right to access care.” A lot of these people were in CHSLDs. We know that, in CHSLDs, the prognosis for life is around 18 months, so we have a lot of people who are technically at the end of their lives. Basically, my question is the following: Could we promote access to palliative care to the same extent? I speak for Quebec; I don’t know how it is in the other provinces, but access to palliative care is what we have always asked for.
I’ll end with the question about mental illness, which was, shall we authorize medical assistance in dying, or not?
I am for opening that up, but I don’t know if we should do it now. I think we would benefit from collecting more provincial and pan-Canadian data on how things have been going since the implementation of physician-assisted dying for physical reasons.
When I look at a document such as Access to medical assistance in dying for people with mental disorders — a discussion paper written by the Canadian Psychiatric Association — I find very thoughtful consideration, particularly on alternative proposals. People with mental illness are asked to try other therapeutic options.
I’m wondering if, to the extent that many of these options are not available or not available in the area of physical health — including palliative care — this creates inequity between people with physical and mental health problems.
I’ll conclude my remarks on these thoughts. Of course, I will be happy to answer your questions.
The Chair: Thank you very much, Ms. Roigt, and you are right that it was Senator Dalphond who wanted us to hear from you. He was right, so thank you very much for being here.
We go next to Dr. Joel Zivot. He is an associate professor at Emory University and adjunct professor of law at Emory Law School.
Dr. Joel B. Zivot, Associate Professor, Emory University School of Medicine, Vancouver Coastal Health Authority (VCHA), as an individual: Thank you for the opportunity to speak today. I see once again that I must suffer the perils of having my name begin with a letter zed, so I come up at the end, or as in America we say zee.
The Chair: You are not at the end.
Dr. Zivot: Thank you for the opportunity to speak with you today. I’m going to talk about something that I don’t think has been specifically addressed up to now.
My area of focus here is on my concerns about Bill C-7, which will, in some circumstances, expand access to MAID, but my claim here is that the technique of MAID will produce death that will be in a manner that is painful and akin to drowning. The Canadians who seek MAID must understand that MAID employs a technique that will very likely cause painful dying.
Now, I’m not here to debate the rightness or wrongness of MAID. That is for others. I’m going to confine my concerns here to the technical aspects, and I’m going to explain to you what I suspect it feels like when one is killed by MAID. So what does it feel like to die when the cause of death is MAID?
Just to give a little bit of background about myself, I am a Canadian citizen. I’m a physician. I went to medical school at the University of Manitoba, and then I did my residency at the University of Toronto in anesthesiology. After that, I went to the Cleveland Clinic in Cleveland, Ohio, and did my fellowship in critical care medicine. I have been practising anesthesiology and critical care medicine for more than 25 years both in the U.S. and Canada. I consider myself an expert in both of these fields, including the pharmacology of many of the medications that are used here in MAID.
A number of years ago, I discovered that a drug called sodium thiopental that I and all anesthesiologists commonly used at the beginning of an anaesthetic, disappeared from the world market. I wondered how that could be, so, of course, logically, I investigated to see if I could determine what happened to sodium thiopental.
My investigation led me to the last company that was manufacturing sodium thiopental, a company called Hospira. At the time, Hospira was manufacturing sodium thiopental in Italy, and Italy, being a member of the EU, was under the rules of the EU, which stipulate that no company can produce a compound that will be used for the purposes of execution. Hospira understood that the sodium thiopental it was making was being used for execution in the United States, so it decided to cease manufacturing. Execution basically eliminated the production of sodium thiopental. I was dismayed, of course, because I thought here was a drug made for the purposes of medicine, and now it was being repurposed for killing.
I then became interested in lethal injection as a form of execution in the United States. Again, as a Canadian citizen, this was all new to me. Canada, of course, does not use execution as a form of punishment, but in the U.S., it is a lawful form of punishment, under certain provisions, specifically, that it must not violate the eighth amendment of the U.S. Constitution, which proscribes any cruelty in the setting of punishment. There are other techniques that are used to execute individuals, but lethal injection is the common technique used currently.
A few years ago, I was handed a file that was a series of autopsies. Within this file were individuals who had been executed by lethal injection, and I was asked as an expert to look to see whether I could speculate that the blood levels of the pentobarbital, in this case, would be sufficient and likely to cause death in these individuals. I looked at that but also discovered that what I was handed was, in fact, entire autopsies of individuals, so it included the gross description of organs within the body.
When I looked at the autopsies, to my surprise, I found that, in most of the cases, the individuals who had been executed by pentobarbital had fluid congested in their lungs. The lungs of these individuals were twice the normal weight, full of water. Now, the only way that this could have happened would have been as a direct consequence of the pentobarbital that was injected into these individuals. When one watches an execution, it’s not clear that this is happening. There is not much to see. Executions, like, I imagine, medical assistance in dying, are a rather bloodless event; not much can be seen outwardly. But the autopsies revealed a very disturbing and surprising finding.
Now, with this information in hand, I approached a journalist and became connected with journalists at National Public Radio here in the United States, and they undertook a freedom of information investigation and collected 300 autopsies of individuals executed in the United States, the largest collection ever brought together. Two hundred of those autopsies showed findings in the lungs, and again, in 85% of the cases, the lungs were filled with fluid.
What does this mean? It means that when a person dies by lethal injection, they basically drown. Their lungs fill with fluid, and I would describe that the experience of dying under that circumstance is more akin to death by waterboarding, which we recognize to be cruel.
Now, I will tell you that when I looked at the method of dying by medical assistance in dying, the technique is strikingly similar. The pharmacology is similar in design to the death by lethal injection in the United States, and it is stated that the autopsies performed on inmates executed show the presence of significant quantities of fluid, and in my comments that I sent earlier, I link to the National Public Radio story that goes into this in more detail.
The Chair: Dr. Zivot, could you wrap up, please?
Dr. Zivot: Sure.
Let me add that what is most distressing about this is the fact that MAID includes in its protocol the use of a paralyzing drug. Now, once a paralyzing drug is given, a person can no longer move, so all bets are off. To claim that this is a death that is peaceful, well, it can be nothing else because now a person is unable to move in any way, but whether or not they have any conscious experience of what is happening is unknown. I will tell you again that paralytics are not even used in the United States as part of euthanizing animals, so the fact that we are using them in medical assistance in dying is most distressing.
Finally, I would say that it’s important that if MAID is to be used, it should be clear to the Canadian public that the kind of death that they will experience as a consequence of MAID will be something other than the way it is represented. It could be exceedingly painful and more akin to drowning.
I will now take questions. Thank you.
The Chair: Thank you very much. We will now go to Dr. Janet Smylie. She is a director of Well Living House Action Research Centre for Indigenous Infant, Child and Family Health and Wellbeing at St. Michael’s Hospital, is a Métis physician, has experience in addressing inequalities in the health of Indigenous peoples, including developing guidelines for health care professionals working with Indigenous peoples.
Dr. Janet Smylie, Director of Well Living House Action Research Centre for Indigenous Infant, Child and Family Health and Wellbeing at St. Michael’s Hospital, as an individual: Honourable senators and esteemed colleagues, I am here to share a little bit about Indigenous people, First Nations, Inuit and Métis people, and MAID and Bill C-7.
End-of-life care and choices for First Nations, Inuit and Métis people can be considered to be traditional Indigenous practices. Therefore, the right to self-determine these could be considered part of the inherent rights to traditional healing, which are protected domestically and internationally. As such, any legislation regarding MAID, including Bill C-7, needs to be aligned with these rights.
For myself, as a Métis family doctor and Canada research chair, I think a lot about end of life, and I have been taught by my traditional teachers and elders to think about end of life as a reflection of birth. I have spent a lot of time working with traditional Indigenous midwives and talking to elders who were midwives, so our death attendants were actually also our birth attendants.
If we think about end of life in the same way that we think about birth, and then we think about how this legislation is being developed, it may help us identify some of the serious gaps and some of the undermining of First Nations, Inuit and Métis peoples’ inherent rights that are happening as this legislation progresses.
We all have had to think about what happened when health services for First Nations, Inuit and Métis families were set up. We still see pregnant First Nations, Inuit and Métis people having to travel very far away from home. There was legislation set up, and traditional midwifery was outlawed, including our inherent right to attend to our own community members at the time of death. What happened is that non-Indigenous perspectives and legal perspectives intruded on this important and culturally informed rite of passage that was birthing. Birth and death are incredibly culturally loaded.
My concern at this time is that this legislation and this legislative process aren’t well aligned with the domestic and international inherent rights of Indigenous people. I don’t think they would meet the bar of the United Nations Declaration on the Rights of Indigenous Peoples. And like almost all health and health services, there are gaps in world views. Most of the discussions that I have heard today have already introduced this. I know, fortunately, you have had some consultations with other Indigenous people, other physicians and nurses and organizations on this. However, I don’t think it actually begins to go deep enough.
There are challenges in the alignment with international and domestic law around the inherent rights of First Nation, Inuit and Métis people to self-determine their health and healing. There have been insufficient discussions with First Nations, Inuit and Métis people. That’s a tall order because we have cultural and linguistic diversity that is tenfold that of Eurasia. I can speak to my own understandings of end of life, and I could apply an elementary Cree-Métis world view to this legislation, but we would need to do that across the great diversity of First Nations, Inuit and Métis world views and diversity.
Then there are several other challenges. Health services in Canada, including this MAID legislation and the processes that I have heard about, have been set up without Indigenous people in mind. You can’t just add a few conversations with Indigenous people to make them work.
Right now, in the legislation, it’s good to see that only one health care provider is required when death is anticipated, but the requirement for one or two independent medical opinions is not going to be feasible to do in a culturally safe way and in a way that actually would respect that individual, their family and nation’s world views. It won’t be possible to do it in the Inuit Nunangat, it won’t be possible to do it in remote First Nations, and it wouldn’t be possible to do here in the City of Toronto.
I appreciate the comments that my colleagues have made in terms of explaining the process and advocating that we should think about mental health and maybe revisit the idea that it’s discriminatory to exclude people who have been diagnosed as having a mental illness. The senators need to understand that in some Indigenous languages, there is not even a word for mental illness. That’s an example of where the logic, the assumptions and the world views being used in this legislation are being developed in a paradigm that is very different than the paradigm of First Nations, Inuit and Métis people.
As you have heard from others, there is a high prevalence of mental illness, which for the large part is rooted in historic and ongoing colonial intrusions and inequities. Not only are there gaps to culturally safe physical care — and in fact, as we’re all aware, these gaps are, unfortunately, not limited to cities where we have hospitals — but more often than not, people are treated in a discriminatory manner when they come to the hospital. As I think I heard Senator Boyer say in a recent conversation, the exception isn’t the person that got discriminated against, the exception is the person who went to the hospital and got treated with respect.
The gaps in culturally safe mental health care that is grounded in First Nations, Inuit Métis world views, which are diverse, and not psychiatric frameworks are going to further limit the relevance of and access to this legislation for Canada’s First Peoples.
Some ways forward through this, because I have raised and problematized this whole legislation in the process: Initiate a process that would support First Nations, Inuit and Métis supports and exemptions to the MAID legislation. Just like in Ontario, where we have an exemption clause for Indigenous midwifery, and across the country, we see a resurgence of Indigenous midwives for birth, we need to be respectful and recognize that the choices and processes around end of life for First Nations, Inuit and Métis people are inherent rights, and they need to be defined by those people themselves to align with self-governance.
The other thing that would be important and could support some of the limitations over the short term while we’re getting there in terms of exemption processes could be to have Indigenous midwives who were actually death doulas and who can help facilitate and bridge some of the gaps in culture that have emerged are emerging for First Nations, Inuit and Métis people.
It would also be important to support national and regional —
The Chair: Dr. Smylie, can you please wrap up?
Dr. Smylie: I sure can. — to support national and regional First Nations Inuit and Métis governing bodies and Indigenous elders, knowledge keepers and scholars in preparing background materials to inform these processes. That’s something that did happen around Indigenous birth and midwifery, and it could happen around Indigenous death.
Finally, as I wrap it up, it’s always very important — and, of course, there are many populations in Canada — but if we want to make sure that Indigenous people don’t continue to die in an inequitable manner, just like two to four times more Indigenous, First Nations and Inuit infants die at birth, if we had the data, we would know that it’s much more common and there are disparities in access to dignified and pain-free palliative care services and end of life. We need to ensure any legislation is linked to policies and tangible investments that address inequities in access to end-of-life supports for First Nations, Inuit and Métis across geographies.
Thanks very much.
The Chair: Thank you very much, Dr. Smylie. We will now go to questions.
Senator Batters: My question is to Dr. Derryck Smith. Dr. Smith, in Dr. Sonu Gaind’s testimony at this committee during our pre-study, he voiced serious concerns about the risk to vulnerable patients when standards do not exist or are not followed. Regarding MAID for mental illness in Canada, Dr. Gaind had harsh criticism of the psychiatrist in the E.F. Alberta case who somehow assessed both irremediability and capacity without ever seeing or speaking with the patient. Dr. Gaind did not know how it was possible to clinically or ethically assess a patient as competent without ever seeing or speaking with them, especially when the assessment determines whether that patient lives or dies. From a 2016 survey that was done by the Canadian Psychiatric Association Task Force on MAID, only 5% of Canadian psychiatrists thought that this met the standard of care.
Dr. Smith, in the E.F. case, out of three doctors who approved that particular assisted suicide case, only one of those doctors ever actually saw that patient, and that was the patient’s GP, her general practitioner. We know from the E.F. court decision that the psychiatrist who approved the assisted suicide only reviewed her file or chart. The other doctor involved never met the patient and did a consultation by FaceTime at a time when that was much more rare than now.
Dr. Smith, I’m assuming from what you told us today that you were the psychiatrist who never met E.F. and who only reviewed her file or chart before approving her assisted suicide. Is that true? And how can you contend that the expected standard of care was met in that case?
Dr. Smith: I’m happy that you asked that question because I want to expand on this. The Senate has, unfortunately, heard a lot of misconceptions about E.F., and I would encourage you to go back and read what the trial judges had to say, because these issues were all dealt with in considerable detail, both by the Madam Justice from the Queen’s Bench and from the three-person panel.
Now, I can read to you what the Court of Appeal said on this particular issue. Justice Bast was the original judge:
The Court of Appeal held that Justice Bast had not erred in rejecting this argument. She had been presented with evidence from E.F.’s attending physician of 28 years, a second physician competent to provide assistance in dying, and a psychiatrist —
— myself —
— with expertise in severe conversion disorder, all of whom had concluded that E.F.’s condition was grievous and irremediable. The fact that E.F. had not been examined by the psychiatrist was not fatal, as “there [was] no reason to think that this experienced specialist would have rendered that opinion if he were not satisfied with the medical information he was provided, or if there was a treatment option that could or should be tried by the applicant.”
So the concern that you have has been adjudicated in court, and I stand by my role. This was before —
Senator Batters: So you reviewed the chart? That was your assessment? You didn’t meet the person? You assessed the chart?
Dr. Smith: I reviewed the chart, which was extensive, and I talked to her family physician. The family physician had been this woman’s doctor for 28 years. Her family and her adult children, her husband, were all in favour of this. This woman was suffering interminable suffering, as was adjudicated by the court. I would encourage you, senator, to read what the court had to say about this.
Now, was it ideal? It was not ideal.
Senator Batters: No kidding.
Dr. Smith: I was not asked to examine the patient. I was only asked to review the file. I did what I was asked to do. I testify in court at least five or six times a year, and I do what I’m asked to do. Would I have liked to have examined her? Yes, I would have. Would my opinion have been more thorough if I had examined her? Yes, it would. But as it stands, my opinion, my review of the file, was accepted by the Court of Queen’s Bench and by the Court of Appeal and specifically rejected the appeal from Canada and from B.C., who were appealing this matter.
So I don’t have any problem about my role in E.F. I regard E.F. as a woman who had been suffering for years and years and really deserved to have an assisted death under the rules from Carter. The rules from Carter did not say that you could not have assisted death with a psychiatric illness. That was also argued out in court, and the view of Canada, who appealed it, was not upheld by the three-panel Court of Appeal. So I don’t have any apologies about my role in that particular case.
Senator Batters: Sir, do you believe that you can also assess competency from reviewing a file as well?
Dr. Smith: No, I was not asked to assess competency. There are —
Senator Batters: How many doctors assessed her competency? Just one? Just the doctor who knew her?
The Chair: Senator Batters, let Dr. Smith finish and then you can ask the next question. Dr. Smith.
Dr. Smith: The competency was judged by her family doctor, who knew this woman for 28 years. The family doctor was perfectly competent to assess competency.
Things have changed considerably. That was the very first case. There was no legislation in place at that time. It was the first case to come down after Carter, so things would be much different now. If I was asked to adjudicate a case like this now, I would insist on interviewing the patient. Part of the reason why they asked me not to do this was this woman lived in Alberta and I was in Vancouver, and there would have been a tremendous expense and difficulty with getting me up there, and getting her down here would not have worked at all.
I did what I was asked to do. It was accepted by the court at two levels, so again I make no apology for my role in E.F.’s death. I think Dr. Gaind has consistently misrepresented what happened in that case to —
The Chair: Dr. Smith, we have to go to the next senator.
Senator Martin: Thank you to all the panellists today.
My question is actually for Dr. Zivot. Sorry if I’m mispronouncing your name. I was quite interested in what Dr. Holland had to say just to describe the moment of such a death. I have to say that my question to Dr. Zivot is just based on my understanding of any sort of medication or drug, and every person has a different reaction. I speak from experience with having very close members of my family who are living with schizophrenia or dementia, and myself, a reaction to a very commonly prescribed drug. So every person is different.
Dr. Zivot, there has been so much discussion, and you talked about the subject of pharmacology, the actual procedure. This has been left out of the discussion, so I’m really glad you brought this up in your presentation. I think this is an important perspective to hear. We know very little about how MAID is actually performed in Canada. We heard some testimony during these studies, but most Canadians are not aware. Yet, there seems to be a lot of information about lethal injections in the United States and the numerous court cases that have followed, some going all the way up to the Supreme Court.
As you have said, midazolam is the drug at the centre of both. We heard that lethal injections as practised in the context of MAID in Canada offer a peaceful death without complications. But based on your experience in the U.S., you began to talk about how this may not be a true statement.
I would like to hear further on what you were saying, but you ran out of time in your presentation. Also, I have a follow-up question, so if you could just elaborate further on what you were going to say in what is happening in Canada, and I have some questions about the protocol handbook in Comox Valley, B.C., my province, and what’s been described as potential side effects of this particular drug.
Dr. Zivot: These drugs that are used for lethal injection, let’s be clear that they are designed to treat people and to be used as medicine. Here in the setting of medical assistance in dying and lethal injection, they are now repurposed as poisons. The kind of dosage that you’re talking about here are not the way that we would normally give these drugs at all in a therapeutic sense. What is done here is really rather speculative. I think it’s clear that if these drugs are given in very, very large quantities, that things can happen to the body, all the way up, including death.
Midazolam in the United States was used as a replacement for pentobarbital. If it would be used the same way in Canada, it would be used as a replacement for propofol. That’s not exactly how it’s used here. It’s used as a method of creating some kind of extra component of unresponsiveness.
Let me also be clear, though, that the way a person would die with medical assistance in dying is going to be with a combination of the propofol but mostly the paralytic. The propofol is given in a very large quantity, 10 times what I would give in the operating room.
Let me be clear that when propofol is injected in one tenth of the concentration that is given in medical assistance in dying, it frequently causes a burning sensation. Dr. Holland talked about using a localized injection prior to the propofol so the person would not experience the burning. But let’s be clear, that burning is occurring in the lungs.
Now you’re using a very large quantity of a chemical as it races toward the lungs and very likely tears up the lung with the chemical effects of the propofol. On top of that, you add this paralyzing drug. This paralyzing drug is difficult for me to get my head around because what you are doing now — I think medical assistance in dying becomes theatre, because now a person is not able to move in any way or to indicate that they are uncomfortable.
To state that the death that the person experiences is peaceful, this is unknowable or false. To say that it outwardly appears to be peaceful, I suppose that would be true. But that is a chemical myth put in place. That is a trick of what is actually happening here.
Senator Cotter: My question is not so much a question but to invite Dr. Smith to conclude his answer to Senator Batters. My sense is she was referencing a Dr. Gaind who called into question your particular treatment of a patient. You didn’t get a chance to conclude your answer, Dr. Smith.
Dr. Smith: First of all, I want to make a few side comments. I want to say how much I appreciate the dedication of the Senate of Canada meeting late in the evening and hearing from a wide variety of views. I admire the process and your energy to this difficult issue.
Senator Cotter, I don’t know if there’s much more I can say about the E.F. case, except I think it has been misportrayed by Dr. Gaind, who was a past president of the Canadian Psychiatric Association and is personally opposed to MAID. I’m not sure what reason he’s opposed to it, but I think he was very off-base in his criticism of me. As I said, if you read the court judgment, you can make up your own mind about whether due process was followed. Thank you.
Senator Harder: My question is for Ms. Plewes, but I would also welcome the comments of Dr. Smith and Dr. Holland.
This committee has heard and, indeed, some members of the committee have expressed their view that the state of the current MAID framework does not sufficiently safeguard medical practitioners’ conscientious rights. Is that accurate in your experience? Can you talk about how the MAID program deals with conscientious objectors?
Ms. Plewes: Thank you for the question.
When a patient comes to us, we often reach out to the physician or nurse practitioner, that is their GP, and ask if they’re willing to act as an assessor or not. If they’re not, then we have assessors and providers within our program that step in and learn about the patient, meet with them, so that the physician or nurse practitioner does not need to be involved in the process. So they determine where they want to be. We have had GPs who have stated they are conscientious objectors but then have come to the assisted death because they wanted to support their patient. We try to make sure that this is very much up to the health provider to determine their level of involvement throughout the process.
Senator Harder: Would Dr. Smith and/or Dr. Holland like to comment as well?
Dr. Smith: Yes, I would be happy to say something about that. No doctor, nurse or other health care professional should ever be forced to do something they are opposed to, be it assisted dying, abortion or any kinds of surgery. No doctors are forced to do anything they do not wish to do. This issue has been debated at great length by the College of Physicians and Surgeons in Ontario. They have directed their members — these are all doctors — is that if you object to MAID, then your obligation to your patient, if they request it, is to refer that person to a colleague who would help them with this. I think that’s a perfectly appropriate thing to do. The last thing we want is to have patients forced to have MAID or have doctors or nurses forced to participate in something they are morally opposed to.
Dr. Holland: It is similar to the College of Physicians & Surgeons of Nova Scotia. The effective transfer of care and the Canadian Medical Association policy on medical assistance in dying, likewise, reflects that protection of conscientious objection amongst physicians such that they are not going to be in a position to have to partake and perform medical assistance in dying or something that they’re not comfortable with. We’ve not had any issues with that in Nova Scotia.
Senator Harder: Dr. Holland, do you have any comments relative to the testimony we just heard from Dr. Zivot?
Dr. Holland: Thank you very much. Yes. It’s hard to know exactly where to begin.
Midazolam is a benzodiazepine, and he’s talking about a barbiturate. Benzodiazepines and a barbiturate have similar pharmacology. Benzodiazepines don’t have the same respiratory depression as a barbiturate. However, midazolam in its use in this regimen is not to be ending life. It’s to create a sense of relaxation. It would be a poor drug to use to end a life. Likening propofol as the replacement for midazolam is not what is being done. Propofol is an inductive agent that induces a coma.
We do know what it is like when people have this. I use this in the emergency room all the time. I will use a dose of about 100 milligrams so someone will be unconscious when I reset a bone or do something that is incredibly distressing to that patient. They will wake up and have no memory of it and no sensation because their consciousness is not there. It creates a deep sense of unconsciousness.
I am sure Dr. Zivot has used it in the operating theatre where people are often cut — I do not want to get too graphic — and have other incredibly painful and distressing things done. No patient has woken up and said they felt all of the cutting, the paralyzing or the tube going down their throat because they are unconscious. We do have experience of what propofol does and have had people wake up from intubation and surgery. They wake up and were not conscious from that.
Further to that, we’re using these in much larger doses, 1,000 milligrams, such that patients are definitely not conscious. There is some irritation that has happened and I’ve had that expressed by patients in the emergency department, and we use a local anaesthetic, lidocaine, to help diminish that burning. It takes a while for the propofol to take effect before the person goes unconscious. During that time, they’re going to have multiple circulations of that propofol through their body. If they were actually sensing a burning of the lungs, they would have an opportunity to say that before they become unconscious and it takes effect on the brain. So the notion that this is burning alive their lungs has not been seen in operating theatres and when I set bones in the emergency department. It is an impossible thought that a patient could somehow be conscious as they are paralyzed with the rocuronium. It goes against everything we understand in medicine.
Likening the Midazolam to the propofol — it is not being used like it is in the States. These execution regimens in the States are unfortunately very crude. I would never want to see something like that be used in medical assistance in dying. What we have here is an incredibly elegant regimen of medications and ones that we have had experience with in emergency departments and operating theatres long before it was ever used in medical assistance in dying. We can be certain that this is a peaceful lull off to sleep for these patients.
Ms. Roigt: I wanted to add to the issue of conscientious objection. I don’t know about the other provinces, but I know that in Quebec there is less than 1% of doctors participating in medical aid in dying. It’s a lot of burden for so few doctors to do the job. I know there’s a lot of support offered to them and so on, but I’m being careful in the real possibility for those people who accept to do MAID to use their conscientious objection if they wanted to because there are so few of them and they want to be there for their patients. Without the criteria of end-of-life, I think there’s an issue for you, senators, and for provincial governments to do more, to have more hands, have more doctors participate, more doctors trained, and nurses and interdisciplinary teams around medical assistance in dying.
The Chair: Thank you.
Dr. Holland, I have a question for you, and it is going to be an unusual question. It’s unusual because I really want you to say yes or no, and then you can expand after I’ve asked you a series of questions, okay? It’s not a trap or anything. I’m just trying to understand what your job is.
You are a MAID provider, and you said that when you were assessing a patient you would look at their values and what kind of person that person is. Is that correct?
Dr. Holland: Yes.
The Chair: If I say something that’s not correct, don’t agree with me. You really need to know who this person is, what their experience is and what their background is. Is that correct?
Dr. Holland: Yes.
The Chair: And part of that providing would be all factors, like gender, race and age. All those factors would come in, right?
Dr. Holland: It often would, in certain contexts. I don’t necessarily go into depth requesting how a person defines themselves as man, woman, or their gender roles, but gender plays into your entire life system and the life you’ve lived and race plays into the experiences you’ve had. It often does come in. I don’t necessarily dive into how their race or gender has been experienced in their life, but oftentimes these things do emerge.
The Chair: But their race and values — their race is also important, right? You look at everything?
Dr. Holland: I consider all factors of what a patient would find valuable in life.
The Chair: Thank you.
I wanted you to expand a little bit about — you may have touched on it, but it really would help me — the medicines we use here, from what Dr. Zivot was saying, and how you ended your talk really touched me. Then when Dr. Zivot spoke, I was actually agitated. There are obviously two medical doctors looking at an experience differently. I get that. You said we don’t use those medicines. Can you describe what you mean by that? How does this work?
Dr. Holland: The autopsies he had done were using a barbiturate medication, which is not used anywhere in our regimen at all. That medication from those autopsies is not involved in any way in our medical assistance in dying regimen.
Midazolam, the very first agent we use, has been used in capital punishment in the United States, but in a very crude and inefficient way. They’re using it to try to stop someone from breathing, but midazolam isn’t very good at that. They are using it in huge doses on its own. We don’t use it for that purpose in this regimen. In this regimen, it is solely to create a sense of relaxation at the very start. The purpose is not to cause the person to stop breathing, nothing to that effect. You could take that medication out of this regimen and it would work just as effectively in terms of ending someone’s life. The propofol and the rocuronium are not medications that Dr. Zivot has mentioned, and these are the ones that are the effective ones in terms of ending a person’s life.
The propofol induces the deep, deep coma. We have experience with this extensively in operating theatres and emergency departments in inducing these comas to be able to cause incredible distress to a body in a necessary fashion, like taking out an appendix or setting a bone. The patient wakes up and they haven’t felt anything. They don’t remember. Their mind was not there. While their body was there, their mind is completely unconscious. Most people at those doses will die because their brain is so unconscious that it doesn’t want to breathe anymore. It’s not distressed by not breathing because it doesn’t feel the drive to have to do so.
With the rocuronium, we add it just to be sure that it paralyzes the lungs to ensure the person is no longer breathing so that the body has definitely died. Theoretically, the propofol might induce such a deep coma that you are unconscious but somehow still able to breathe just a little bit. You would not be distressed by it because, likewise, when we put people in an operating theatre at a tenth of the dose that we are using in medical assistance in dying, when we give them rocuronium they can’t breathe, they have a tube down their throat — all of these terrible things happen to their body, physically distressing things and they wake up.
Of the medications that Dr. Zivot describes, the main one is not used in our regimen at all. The second one, midazolam, is not being used in high doses and not being used to end lives. It is being used as a relaxation medication in a much smaller dose for a completely different intention. The ones we use to end life, neither of those medications have highlighted any research on causing drowning of lungs. These are things that we have used extensively in other aspects, and people go under and wake up.
It’s trying to liken two things that are not the same at all. The medications we’re using are extensively used throughout many countries and there are many experts on this who would back me up on it.
The Chair: Dr. Zivot, I want to be fair to you because I asked so many questions of Dr. Holland. Not to go into details, but I would like you to respond to him. That’s the only fair thing to do if we’re going to have a proper debate.
Dr. Zivot: I recognize that Dr. Holland is a sincere individual. I am sorry that I was not emotional in my presentation —
The Chair: I would prefer you not to talk about personalities. Just stick to the facts and let’s move on.
Dr. Zivot: Here are the facts. Autopsies for individuals who have died by MAID, to my knowledge, have not been done. I would ask Dr. Holland and others to perform these autopsies, and then we can put to rest the question of whether or not propofol will produce the same effect in the lungs as I speculate they would.
I see nothing elegant about this in any way. I see this as death by anesthesia and death with a paralytic. The paralytic serves no purpose other than to make it appear outwardly to witnesses that it’s peaceful. I think the interior experience of the people dying is not known and only speculative. To say that the operating room and the emergency department are the same as medical assistance in dying is false and that doses are not at all similar. I accept that Midazolam is used in a different fashion for execution than it’s used in MAID. I did read in the protocol that pentobarbital is the second drug that is available if propofol is not available or cannot be given for whatever reason. I imagine that perhaps pentobarbital has been used for MAID at some point somewhere. I’m not sure.
The Chair: Thank you, doctor. I gave you an opportunity to respond.
Senator Pate: Dr. Smylie, thank you for all your work and thank you all for your testimony.
You have talked, and so have other witnesses, about the issue of anti-Indigenous racism in the health care system. We know there is a recent report out of B.C. as well that highlights this. Many have also raised concern about the fact that Bill C-7 takes an approach that expands rights for some but doesn’t actually look at the inequalities of the health care system that you and others have identified for those who are most marginalized, including by race, disability, class and gender.
Are there measures you think need to be in place decreasing the health inequality? That would include, for example, an observation for federal funding in support of equitable access to health care options for Indigenous peoples, recognizing that Bill C-7 amends the suicide provisions of the Criminal Code. Therefore it’s difficult to provide an amendment that would look at the need for additional palliative care and community care options. Do you want to expand on any of the recommendations you have already made or do you have specific ways you think we could be incorporating this into this particular bill?
Dr. Smylie: It’s multi-layered, and we’re trying to focus on specific legislation.
First Nations, Inuit and Métis people have the highest mortality rates of any population in the country, so we’re dying like we’ve never died before, and we see that with COVID-19 as well. We have higher rates of death through cancer and other chronic diseases like diabetes that can result in the need for palliative care and medical assistance in dying, like I did to try to address the inequities that are persistent and getting worse with respect to something as simple as infant life.
With respect to end of life for First Nations, Inuit and Métis people, there is an urgent need to support the recommendations of the Truth and Reconciliation Commission to have Indigenous health and healing supported, so we need to support Indigenous midwives to address disparities in infant mortality. We need to support Indigenous midwives to address end-of-life care for Indigenous people. There needs to be concrete funding streams. It’s ironic that while we’re trying to use a rights-based legislation to advance the rights of people living in pain and discomfort, we’re infringing on inherent rights of Indigenous people.
It’s difficult for me because it’s late in the day, and I’m the one person trying to address this perspective. I do think there’s an urgent need to look at the inequities and the racism that is experienced. It’s systemic racism and attitudinal racism. We’re having a discussion, and I really appreciate all the hard work that’s done by my colleagues, but I can’t even begin to think about safe access to medical assistance in dying in the city of Toronto.
We have people dying painful deaths in shelters, without support. Ninety per cent of our population in the city of Toronto of 70,000 people lives below the low-income cutoff. One third of our population of 70,000 in the city of Toronto doesn’t have a primary care provider that’s so essential to help. Then we’re terrified to go to the hospital. We’re terrified even within my own family because as Indigenous physicians we get the call, so within the last six months my spouse had a horrible discriminatory treatment at a local hospital and I’m a physician.
I understand how wonderful my colleagues are in palliative care and end of life, but there are certain things about Indigenous world views that take a lifetime to understand. I’m sure that the present company that is doing such a wonderful job to support people in medically assisted death would do their utmost, but we need Indigenous models. That’s actually something that will be safe for us and it’s also something that the Canadian people, in the Constitution of Canada, are actually obligated to provide.
The Chair: Dr. Smylie, I know it must feel lonely for you here today. We’ve heard from 81 witnesses. We had a pre-study and we’ve been meeting this week, and we’ve heard some of the things you are saying. I want to assure you this is not the first time we’re hearing these things.
Dr. Smylie: That’s very kind of you, senator. Yes, I actually had access to some of the materials in the pre-study, and then I see some of my esteemed colleagues were presenting earlier on today and I’m glad some of what I’m saying might be resonating.
The Chair: It is. I wanted to assure you of that. I don’t want you to feel you are the only voice.
Senator Keating: Dr. Holland, in respect to the way you have described the administration of MAID as a peaceful experience, I can confirm that the MAID providers I spoke to in my jurisdiction have said exactly the same thing that you have. They haven’t been on record here, but that’s what they’ve told me.
I’m interested in knowing about the MAID experience of the loved ones who witness MAID, as compared, for example, to witnessing your loved one die from morphine, in pain, the way I did my father over the course of three days. Thank you.
Dr. Holland: That’s a big question.
In every single MAID provision I’ve ever done, the families have all been incredibly thankful. They all commented on how peaceful the entire experience seemed and commented leading up to it, once their loved one has met criteria and after the assessment and been approved, they often note a sense of peace comes over the individual who is awaiting MAID and understanding that there is going to be a conclusion to their illness and the appreciation of that moment to be able to say goodbye.
You highlight a different one, where someone who is having a more prolonged death with morphine. If that is what the patient wishes, I absolutely would be fine with that; however, the family members struggle with the more prolonged deaths. I’ve had loved ones standing by and waiting for that moment, and it’s tough because you’re not sure when that death will happen. It’s unsettling, whether I should be waiting, should I still be here and when do I say that last thing.
The MAID procedure does give a conclusion to the illness and to the patient’s life that you don’t necessarily get with prolonged sedations or a palliative care where a patient is in and out of consciousness over several days. However, I know many people who would rather go that way as well. As the provider working with the patient, I’m respectful of autonomy. I’m not a palliative care doctor, so I have not been privy to those three-day more prolonged ones, I can only speak to that as having been the family member. As a family member, that was very hard in a way that MAID is not.
Senator Keating: That was my question. Thank you very much.
Senator Dupuis: My first question is for Ms. Laurel Plewes.
I would like you to clarify some things you explained. You may not have had enough time to do it perfectly. When you were talking about things that needed to be clarified, the first item was about the case of waiver of consent. You said it was very important, but that there had to be a time limit.
You suggested a six-week delay to prevent families from refusing physician-assisted dying. I would like you to clarify this point which was not clear to me. What would allow a family to refuse medical assistance in dying?
Ms. Plewes: Thank you for the opportunity.
Once a patient has lost capacity and isn’t able to voice their concern, then family members are the ones calling the MAID provider and making those arrangements, so if, let’s say, a patient signed a waiver with a MAID provider for six months or two years away, there would need to be family involvement to make those arrangements to have that death. If during that time the family decided this is not something that we think our loved one would want, then the family is given the control over the patient having the death. The intention with MAID is that the patient is the one deciding whether they have the death or not. I think in order to address the intention to allow for these waiver form of consent, we need to think about what was originally happening, which was with the patient in Nova Scotia. She wanted to say, “I want to have control over my death,” so in order to make sure that she has control when not able to provide consent, we need to make sure that ability to say when they want to have the death is maintained.
Have I clarified that, or confused you?
Senator Dupuis: Yes, because, as I understand it, the idea of medically assisted dying is to allow a person to choose the moment when, from the moment when their suffering is intolerable, they can decide to stop suffering with that intensity. In this sense, do you think that advance directives could help avoid the possibility that the family might refuse to act on the person’s wishes?
Ms. Plewes: From what we have seen in Belgium and the Netherlands, there hasn’t been a large uptake for people that have put in their advance directive that they would like to receive an assisted death. I don’t think there has been enough investigation to determine why people who request MAID don’t receive death in their advanced directives. I think that’s why it’s important to delineate between those two, within this bill, to say this is not advance directive. This is a waiver of final consent to ensure the patient has control over their death.
Senator Dupuis: Thank you. My next question is for Mr. Zivot. Mr. Zivot, you referred to a protocol in one of your answers. Can you tell us which protocol it is?
Dr. Zivot: Are you asking me about the protocol used in MAID?
Senator Dupuis: You told us about an experience of 300 autopsies and a reality in the United States. In addition, in one of your answers, you referred to a protocol. Is it an American or a Canadian protocol? What is your level of knowledge? Is there a Canadian protocol that you are aware of that you relied on to make your statements?
Dr. Zivot: I’m aware that there is a protocol that is used to carry out MAID. This is based upon my review of the information from CAMAP, which is the organization, I think, that publishes this information or can direct to this information. Each province is a little bit different. Broadly, it seems to include three separate medications.
The first medication is midazolam, the second medication is propofol and the last one is a drug called rocuronium. Each of these drugs have a different spectre of action. Of course, the package insert for all of these drugs does not include an indication or a dosage to be used to kill, so MAID, of course, has created a protocol that it believes has been effective. It will be effective specifically if the paralytic is given. That’s clear. Because once a paralytic is given, all bets are off. There can be no further breathing, so even if you didn’t give midazolam or propofol and you just gave someone rocuronium, they would also die. And by the way, that death would also outwardly look very peaceful.
Senator Dupuis: You will understand that, as a Canadian legislator, my concern is to ensure that we are comparing comparable things. You tell me about a situation in the United States that you seem to be familiar with; that’s one thing. I wanted to make sure that you were as familiar with both the protocols and how those protocols are applied here. We have a Canadian situation to judge and we have to legislate. It is from that angle that I wanted to make sure that we’re comparing comparable things.
Dr. Zivot: Sorry, yes, thank you. What I was referring to, what I described, was the Canadian protocol. The American protocol for lethal injection is broadly or rather is fundamentally similar, with some differences. The nature of my testimony is the fact that these are very similar protocols in important ways. That’s why I think they can be compared.
Of course, you’re right that in Canada it’s different, and also there is no information like the information that I have, having reviewed autopsies of executed individuals. There are no autopsies to review of people who have died by medical assistance in dying. I would think it would be valuable and important to determine exactly what death really looks like from the inside.
From the outside, it looks peaceful. But I use the word in quotations. What you’re seeing, again, is the result of a particular kind of action of a drug that will block any kind of movement if such movement could occur. If there is some, even the smallest, amount of discomfort that a person might experience as a consequence, for example, of the injection of propofol that’s used in medical assistance in dying, it will be obliterated. As soon as the paralytic drug is given, it will be done. You will never see anything other than an expressionless face. So, the words that are used here like “elegant” or “peaceful” — let’s be clear that these are not really accurate uses of these words, because they are supposing something that really isn’t either taking place or has been actually verified through, I think, a proper investigation of the body, say, as I suggest, with the performance of an autopsy. So those are my thoughts.
Senator Dupuis: Do you have any literature, study or article you have written comparing these two types of protocols? You will understand that we do not want to know if we are dealing with an elegant process or not. We’re talking about rights and changes in medical practice, and we’re talking about increasing access to medical assistance in dying.
Would you be able to provide us with documentation that would support the comparisons you make between the two regimes?
Dr. Zivot: I can refer you to the National Public Radio story that quite extensively goes through the autopsy findings of executed individuals. Based upon my knowledge of pharmacology and familiarity with these drugs, I would suggest that there is a high likelihood that the same things would be found if people who died by medical assistance in dying had an autopsy performed upon them. There are no studies that have taken place. I asked the president of CAMAP if she knew if anyone had had an autopsy after MAID. She claimed she did not. That does not mean that has not taken place, but she was not aware of it.
The Chair: Thank you, Doctor Zivot. Senator Dupuis, I let you go on longer because I was sure everybody wanted to hear. Ms. Plewes has a comment.
Ms. Plewes: The only thing I wanted to mention is that we have had patients donate organs after they have received MAID death. We have successfully had those organs put into patients and into recipients. There’s been no issues with those organs that have been transplanted, and that would not have happened if those organs weren’t deemed to be viable. Thank you.
The Chair: Thank you.
Senator R. Black: Witnesses, thanks for your testimonies.
My questions will be directed to Dr. Smith and Dr. Holland. As a senator from rural Ontario, I know that rural Canadians often face barriers accessing health care services that urban dwellers can find around the corner. Almost one fifth of Canadians live in rural communities, but they are served by only 8% of the physicians practising in Canada. I am concerned that rural Canadians considering MAID may be less likely than urban dwellers to request the services due to their perceived difficulty in accessing the services. This could prolong the suffering of someone, while their urban counterpart receives more expeditious care.
Dr. Smith, in your opinion, are there significant barriers facing Canadians living in rural, remote and northern communities who may be seeking to access MAID services or acquiring information from MAID practitioners?
Dr. Smith: Thank you, Senator Black.
I think you’re spot on, but it’s not just an issue for assisted dying. I did outreach to Dawson Creek in northern B.C. for 20 years. People living in remote communities, incidentally, where there are large numbers of Indigenous members of Canada living as well, have generally poor access to every type of health care imaginable.
We’re looking here at end-of-life issues. I would say that the biggest problem in end of life with rural Canadians is no access to palliative care, which is tragic.
In regard to MAID, the one thing that has improved access is the fact that just as we are meeting via Zoom here, it is now possible to access people for MAID using Zoom technology. That’s a big step forward.
Will there be a provider in a particular community? That’s one of the things that CAMAP is trying to ensure, that there is adequate access to Canadians who want MAID in all the communities. Have we reached that goal yet? Definitely not, but I think we need to make steps in that direction to ensure that rural Canadians get access to all manner of health services.
Thank you for that question, Senator Black.
Senator R. Black: Thank you very much.
Dr. Holland, do you think there should be a federal or provincial approach to the distribution of MAID practitioners to ensure that communities across the country have adequate access and to avoid prolonging the suffering of those seeking care who live in rural, remote or northern communities that in most cases are already under-served, as we have just heard, in medical services?
Dr. Holland: Yes. Your point is exactly right on. As one of the first providers in Nova Scotia, we definitely had a lot of issues in trying to access rural areas. I have spent countless hours driving all over this province to be able to do assessments and provisions. Thankfully with Zoom, the assessments are easier. Nova Scotia is a tiny province. I can drive it end to end. I can’t imagine how difficult it would be for northern Ontario, northern Quebec and the territories.
That likewise applies, as Dr. Smith has highlighted, to palliative care and to all aspects of medicine. It’s not just a rural-urban divide. There is going to be other access for other types of populations that have been systemically marginalized and who will be less able to access MAID, much like they do palliative care.
Whether it should be a federal or provincial approach goes back to the debate on anything in health care. Much of health care is delivered by a provincially oriented system, so I’m not in a position to be able to really comment whether it should be a provincial or federal responsibility. However, I can say that in Nova Scotia, there has been a very targeted provincial approach to being able to access MAID in rural areas. The Nova Scotia Health Authority has really put in a lot of effort, in coordination with assessors and providers, to be able to find providers in rural areas. I think that is the onus is on government, whether it be federal or provincial, to be able to guarantee access to MAID, and palliative care and all things health care in rural areas.
I’m optimistic, because as MAID has become more culturally acceptable and also more widely known, more and more physicians have said, “I will be an assessor. I will be a provider.” A lot of times when I’m driving around, I try to find someone in a community who is interested. The patients are universally quite accepting to having a physician come there to learn it, because these patients are pioneers in their own right too. It’s not just the physicians and the nurse practitioners.
As physicians see it, and as more family members have been to a provision and seen what it is about, I think there will be more and more physicians and nurse practitioners who agree to partake in this, so I’m optimistic that this will spread. However, I do think there is an onus on government, whether it’s provincial or federal, to be able to help facilitate that spread and to help allow access to all parts, not just urban centres.
Senator R. Black: Thank you.
Senator Moodie: Thank you, witnesses, for being with us this evening. I wanted to direct my first question to Dr. Zivot, but I have just a few words before I do ask you the question, Dr. Zivot.
MAID has been the law of this land for about four and a half years now. As such, we do have a lot of information about the protocols that are being used and how they were developed. In fact, for the most part, across Canada, it’s a four-job protocol to which a fifth and perhaps a sixth could be added. In fact, there is a lot of similarity across Canada on how procedures are carried out, how they are documented and how they are tracked.
If you consider just Vancouver Coastal Health Authority’s experience, they have had as many as 943 cases in four and a half years. In 45 years of lethal injection in the United States, they have had 1,234. So they have a considerable amount of experience and can speak to this experience.
In a recent survey I carried out of 17 MAID providers across all regions of Canada, I confirmed that, in fact, there is a lot of similarity in their experiences. They have found and described the experience very much the same way: peaceful, calming, and, in fact, a deeply satisfying experience. They have seen none of the effects that you talk about, and they have expressed that families have reacted very much in the same way that you heard this evening.
Dr. Zivot, this is a yes or no question: Have you ever personally carried out a MAID experience or procedure?
Dr. Zivot: No.
Senator Moodie: Have you witnessed one?
Dr. Zivot: No.
Senator Moodie: Thank you, Dr. Zivot.
My second question is to Laurel Plewes. I would like to ask you to share with us a little bit more about your experience providing MAID with the large experience that your region has had. Can you share with us what some of the positive experiences were, and negative, if you have any, and perhaps point out some of the contrasts, the differences, in the experience of MAID providers to the experience of what perhaps Dr. Zivot described for us around lethal injection in the United States?
Ms. Plewes: Thank you for the question. Just to clarify, I’m not a MAID provider, but I have personally been at over 200 deaths, and I have supported about, like you said, 943 within the health authority.
From what we have seen, patients are very relieved to be going toward their death and having their suffering end. We have also had, much like Dr. Holland described, family members who may be opposed to MAID, but then after the MAID death have said, “That is so peaceful.” Even the people who don’t agree with MAID prior to the death, after seeing the death, their impressions have changed.
The thing I would compare between lethal injection and MAID within Canada is that in Canada, a physician or nurse practitioner must administer and be present for the death to be sure that the medication is used effectively, and that is not so within the U.S., as I understand it. I don’t necessarily think, as one of the previous senators mentioned, we’re comparing apples to apples when we compare assisted dying to lethal injection. As we are looking at the Canadian bill, we need to be sure that we’re only looking at this in the Canadian context.
The Chair: Dr. Zivot, you had your hand up.
Dr. Zivot: I think that the outward appearance of calm and peacefulness is not really an evaluation as to what the interior experience the person who is dying would necessarily have, so it doesn’t mean anything that outwardly it looks peaceful.
Senator Kutcher: I’m asking Dr. Smith, who happens to be an expert in this area. Dr. Smith, you have assessed patients for MAID for sole mental illness. Unlike many psychiatrists, you actually have direct experience with MAID.
I have three questions. First, are Canadian psychiatrists able to determine if a person with a mental illness seeking MAID is driven primarily by the wish to die by suicide? Second, is it significantly more difficult to assess decision-making capacity and suicidality in a person seeking MAID solely for a mental illness, which is currently excluded in Bill C-7, than doing the same kind of assessment in a person who has a co-morbid mental illness, which is permitted in Bill C-7? Third, is a request for MAID the same as a death by suicide?
Dr. Smith: These are profound questions, Senator Kutcher. To deal with them fully would take an hour of my time.
Let me say there is no greater controversy in psychiatry than assisted dying versus suicide. As psychiatrists, we spend much of our lives trying to prevent suicide, so it seems like a conundrum when psychiatrists are asked to participate in assisting someone to die; at the other time, we are putting people in hospital to prevent them from dying from suicide. It’s a difficult proposition for psychiatrists.
Having said that, I am convinced that I can determine whether someone is suicidal and seeking death or whether they are making a sensible, reasonable, rational decision based on their whole-life circumstance. I am particularly interested in what family members have to say about their loved one and whether they are supportive. Thank goodness, in the vast majority of cases that I have seen, the family is enormously supportive of the person wanting to end their suffering in a dignified fashion. It is difficult when family members are not in agreement. It is even more difficult when there is an active psychiatric illness.
I want to assure the members of the Senate that if there is a doubt as to whether the person actually qualifies for MAID, they are, in most cases, refused MAID.
Keep in mind, as well, that there can not only be a psychiatric assessment, but there is another assessment, usually from a general practitioner, that addresses the same issues. These are not easy things to deal with, but I am convinced that Canadian psychiatrists and doctors are up to the task of dealing with those two different issues: assisted dying, because of terminal illness and/or terminal suffering, and a person trying to end their life through suicide because of psychiatric illness.
Senator Kutcher: Thank you very much for that, Dr. Smith.
Dr. Holland, there are two things I want to ask you. Earlier, we heard from Dr. Grant from the College of Physicians and Surgeons of Nova Scotia who talked about the challenge that regulatory bodies would have if the current definition of mental illness were accepted. You also mentioned the confusion that a MAID provider might have if the current definition of mental illness were accepted. Could you say more about how important it is to be clear about what we’re talking about?
Dr. Holland: Yes. It has been something I have struggled with for a long time since reading Bill C-7. I do appreciate the removal of “reasonably foreseeable,” as that has created a lot of confusion among providers and has excluded people who need MAID from ever getting it. However, by removing that, you are then opened up to concerns around mental illness as a sole underlying condition.
In the current legislation — before C-7 — mental illness as a sole underlying conditional is accepted, as Dr. Smith has highlighted. Now it is not. That’s not just an issue in and of itself but gets at the confusion we may have. For mental illness, it’s not like there is a specific definition in medicine where you go to medical school in year 2, and mental illness is a certain list of diagnosis. Mental illness, and the definition of illness itself, is something that has been in debate within medicine and philosophy. So many people will define mental illness as a specific set of diseases that are housed within the mind and within the DSM-5 criteria — anxiety, depression. Other folks might argue it may be Parkinson’s or Alzheimer’s. However, the notion of illness may be considered as just non-normative function. Therefore, one could say that an extreme grief reaction or sadness may be mental illness. What are we excluding, then, from the incurable illness? That itself has confusion as to what can contribute there.
Right now when I’m doing a MAID assessment, I look at a patient’s entire length of suffering. Some of that is going to be existential suffering because of what they can no longer do because they are now bed-bound; they are unable to enjoy certain aspects of life. They feel trapped. Those sorts of things are ones that many could couch as mental illness. They may have been suffering with a depression for a long time, which could also contribute to their suffering. We have to be careful as assessors to make sure that the depression is not an acute depression that may be affecting their capacity to make a decision. As Dr. Smith has highlighted, psychiatrists struggle with this quite often in terms of trying to make sure that the mental illness is not clouding their judgment.
Assuming we have put that aside, the mental illness — depression, anxiety, whatever it may be — may not be clouding their judgment, we then concurrently add that to the entirety of what they understand is their suffering. So they both have the pain in their back, are unable to get out of bed and do the things they enjoy. We can understand that suffering and compare it to the person they used to be, say, 10 years ago — how they would want to be.
Now we will have a circumstance whereby I’m seeing somebody, and they might have a deep sense of loss or depression because they are now bed-bound and can no longer get out of bed. Okay, is that sense of loss and that suffering part of their advanced decline, in which case I can contribute that suffering to their overall picture of intolerable suffering. Maybe that’s a depression, in which case that’s a condition, illness or disease, and I can’t include that under 2(a).
There will be debate around how we interpret it. One of my fears is that you will have some assessors who may say, “Anything akin to mental illness, I’m not putting into the suffering. The suffering will have to be either from just the decline or some sort of physical condition, like the pain in their leg or pain in the hip or back.” Then other assessors will say, “No, that suffering is part of their advanced decline. I’m going to consider that psychological and existential suffering into the overall piece.” There will be two different groups that will allow certain things to contribute to that suffering because of the way it flows through, even beyond the fact that mental illness itself is not necessarily a well-captured term.
So as Dr. Grant with the college may be concerned, I might say, “Well, Parkinson’s is a neurological condition,” and someone else might say that Parkinson’s is also a mental illness. So I might say, “Well, this person has Parkinson’s; therefore it can count as 2(a).” Another provider might say that it is a neurological condition but also a mental illness and therefore cannot be counted as 2(a). It’s going to create confusion.
I understand that the purpose of Bill C-7 was largely pronounced around removing “reasonably foreseeable.” I appreciate that the final consent waiver part was added to this in anticipation of a full legislative review of mental illness as a sole underlying condition, along with mature minors and advance directives.
I might suggest potentially putting in a sunset clause on this exclusion criteria, which will be confusing in the meantime, but it will allow us to do the full legislative review, wrap our minds around how we want to incorporate mental illness as a sole underlying condition or develop clinical practice guidelines that would allow us to create those safeguards such that a person with a mental illness as a sole underlying condition is not going to be consenting to MAID when they are clouded by their mental illness, their depression, schizophrenia and whatnot.
Defining is going to be very difficult, and I really hope that government will pull through on a full legislative review that dives into that. If government is not ready to really define mental illness at this time or work around that conundrum that is wrapped up in this, if you do insist on including that exclusion criteria as is, I encourage you to include a sunset clause such that it does force us to face those issues.
The Chair: Thank you, Dr. Holland.
Senator Miville-Dechêne: My question is for Ms. Plewes. Basically, I want to see how absence of service would factor in the decision, because you would know that this distress is due to something that probably cannot be solved because you can’t provide a service to a person who’s handicapped or you can’t provide community living. How will you deal with such a difficult situation?
Ms. Plewes: Thank you for the question.
How we will deal with that is something we’ve been considering for quite some time. I think the 90 days during the assessment period will allow assessors, providers and MAID programs like ours to have these longer conversations with patients to truly understand their suffering and then identify how we can potentially support the patient, recognizing that we may not be able to create these communities.
We’ve seen that MAID has often been a white flag for people saying, “I’m suffering. Someone please help me.” My hope is that when physicians and nurse practitioners hear this is what’s happening with them, then they’ll do a bit more to figure out how to make that happen.
Many people have said previously on these panels that there needs to be more services added to palliative care and more disability supports. I think that needs to happen in conjunction with this to address the Quebec findings in Bill C-7.
Unfortunately, I don’t have a full answer for you, apart from saying that this is an issue we’re keenly aware of and we’re hoping that patients will work with us as they go forward.
The Chair: Thank you.
To all the witnesses who have appeared today, I want to tell you that we genuinely feel that you’ve answered many of the questions that we’ve been struggling with since we began studying this issue, or even before, when Bill C-14 was being studied. Thank you very much for making time to be here and for sharing your knowledge. We’ll never have your kind of knowledge base, but we learned a lot from you that we will use in our work as legislators. I want to thank each and every one of you for being here. Thank you very much.
Senators, I want to remind you that tomorrow is clause-by-clause. Virtual clause-by-clause might be a challenge, but we’ll see how it works. Can I please ask, if you have observations, that you make sure they are in both languages. If you could please send them to the clerk, he can put the subject matters together and make our process tomorrow easier. If you have observations, please send them to the clerk, Mark Palmer. Thank you very much, everyone. Thanks for all the patience today. We’ll see you tomorrow.