Colleagues, we have a quorum. I'm calling the meeting to order.
I want to welcome you to the seventh meeting of the Special Joint Committee on Physician-Assisted dying.
I'm Kelvin Ogilvie, a senator for Nova Scotia, co-chair of the committee along with my colleague Mr. , member of Parliament for Don Valley West.
Welcome to this evening's meeting. In the first hour, we have three witness groups. Appearing as an individual is the Honourable Steven Fletcher. Appearing by video conference from Winnipeg, Manitoba, are Mr. Dean Richert and Ms. Rhonda Wiebe, from the Council of Canadians with Disabilities. Also appearing by video conference, from Waterloo, Ontario, from Dying With Dignity Canada, is Ms. Linda Jarrett, who is a member of the disability advisory council.
Welcome to all of you.
I remind you that you have approximately 10 minutes for your presentations. The council will share their total time. I will also remind everybody that the witnesses, our panel members, have a total of five minutes for the question and the answer to the question.
In Senate meetings, I always call for the video conferences first in case there are electronic glitches that occur, and since we're all electronified while here, I'm going to start with the video conference.
I would invite Ms. Jarrett to present first.
First of all, I would like to thank you for the opportunity to appear before this council. I do appreciate the fact that I can speak.
My name is Linda Jarrett. I am 67 years old. I am a wife, mother, grandmother, mother-in-law obviously, and 17 years ago I was diagnosed with secondary progressive multiple sclerosis. At the time, I truly felt blessed, in a way, that I was diagnosed at such a late age of 50. Unlike so many people diagnosed with MS in their early 20s and 30s, I have had a chance to live a very active life. I've had a wonderful career as a teacher and have been able to actively take part in the raising of our two children.
I am blessed in that way, but I am also cursed in that multiple sclerosis is a very insidious disease. In my case, with secondary progressive MS, there has been no cause found for MS, and a cure certainly has not been indicated in the foreseeable future, especially for somebody with my version of MS.
As a result of that diagnosis 17 years ago, in the last five or six years I started thinking about what my life was going to be like. I personally do not want to spend the final years of my life in a long-term care facility, no matter how lovely such a place might be, being taken care of 24-7. That's when I started looking into what my options could be.
Now, back six or seven years ago, the options were that I could hasten my own death while I was still physically capable of doing so, and not implicating any members of my family or friends. With the introduction of the concept of physician-assisted dying, and with that incredible announcement last February, I suddenly realized that I could still love the life I have, knowing that there could be a solution to avoid the end of life I don't want.
In any case, that's just a little bit of background as to where I am now, today, presenting to you as a member of the disability advisory council to Dying With Dignity Canada. We are a group of individuals with disabilities that compromise our ability to take part in the normal routines of daily life. Members of our disability advisory council include social activist Margaret Birrell; a former palliative care and public health doctor, Dr. Greg Robinson; and a former president of the Canadian National Institute for the Blind, Jim Sanders.
In 2014, Dying With Dignity Canada commissioned an Ipsos Reid poll that included a statistically significant sample of people with disabilities. These people were those who answered the following question: Are you permanently or severely disabled such that you cannot take part in the basic activities of daily living without assistance?
An amazing 84% of those people with disabilities answered this question: As long as there are strong safeguards in place, how much do you agree or disagree that a doctor should be able to help someone end their life if the person is a competent adult who is terminally ill, suffering unbearably and repeatedly asks for assistance to die?
I can't emphasize enough that it was 84% of the disabled participants in that survey that agreed or strongly agreed with the right to physician-assisted dying. That poll was valid plus or minus 11.5%. Another poll done in the U.K. by YouGov had a significantly larger range of individuals with disabilities being polled, and 79% of those with disabilities support or strongly support the right to physician-assisted dying. They answered this question positively: “Whether or not you would want the choice for yourself, to what extent do you support or oppose the legislation of assisted dying for adults of sound mind with a terminal illness?”
Our disability advisory council helped to inform and supports the seven principles for legislation outlined by Dying With Dignity Canada, and I do hope that handout was provided to you ahead of time. I am going to refer to a couple of points on it, but the handouts, which were sent ahead of today's meeting, you can certainly refer to later.
I'd like to flag the second principle, which concerns “advance consent”. The members of our council believe that as with other major life-ending decisions, we should have the ability to make our decisions known now when we are competent and hopefully have them carried out later when possibly we will not be. I myself have a “do not resuscitate” order in place because I know full well that I do not wish to be resuscitated should some life-ending event happen to me. What if I were to have a stroke and be completely paralysed and unable to communicate? In that situation, I know that I would want assistance to die, and I believe I should be able to make that request now while I'm competent and have it carried out later when perhaps I will not be.
To ensure that physician-assisted dying is provided only to patients who truly want it, we support additional procedures that are not currently part of end-of-life medical care. We do this with caution, knowing that any additional procedures can also sometimes become a barrier to access. For example, the two procedures that we endorse are that two physicians verify that there has been free and informed consent for physician-assisted dying and that every case be reviewed after the patient has died and aggregate data be compiled and made available to the public.
As individuals who happen to live with disabilities, we are aware that resources and support are sometimes lacking, and accordingly in our fleshed-out policy on physician-assisted dying, we include a statement noting that all people, including those with disabilities, should have the support and resources necessary to live their life to its fullest capacity.
We accept that a person can be situationally vulnerable because of factors that do not directly relate to their disabilities or to their disease. Factors such as isolation and financial distress are sometimes more likely to be encountered by people with disabilities. Accordingly we believe that physicians should be trained to assess situational vulnerabilities not just for physician-assisted dying but for all end-of-life decisions.
The members of our disability advisory council strongly feel that the law needs to strike a balance to protect vulnerable people from having an assisted death they don't really want and, from my point of view and our council's point of view, to ensure access to assisted death for those who do have an enduring wish for it.
To this end, we propose two further key principles. The first is that doctors, while having the right not to administer or prescribe life-ending medication, must be willing to provide information and transfer the care of patients who seek an assisted death, so that patients are not abandoned. We don't want someone who is desperately ill, with great pain, being given a website or a phone number or the Yellow Pages and being told to find another doctor.
We further believe that tax-funded institutions, whether they be hospitals, hospices, or long-term care facilities, must provide assisted dying on their premises to patients who request it. For example, some of our members in British Columbia are concerned that they may need emergency medical care and perhaps will be transferred to one of the Catholic hospitals in that province. They don't want to give up their right to an assisted death just because the hospital they have been transferred to has a historical association with a particular religious viewpoint on assisted dying.
It is notable that some of the most prominent proponents of physician-assisted dying are the disabled: Kay Carter, Sue Rodriguez, Gloria Taylor, and Joe Arvay, the lead counsel for the plaintiffs before the Supreme Court just over a year ago, who gave us the right—possibly—to physician-assisted dying. He did this from his wheelchair.
Our diseases and disabilities have robbed us of much, and I ask you, do not add to this burden by compromising our choices and our autonomy. I will repeat again that 85% of people with disabilities said, in a valid, accepted poll, that they would strongly support the idea of physician-assisted dying.
Please do not allow us to be represented as opposing this compassionate and humane choice. Again, I emphasize that it is a choice. No one is asking to be put to death against their will, but please allow those of us in the disabled community the right to access our choice for physician-assisted dying.
Thank you so much for listening to my babbling.
Thank you, Mr. Chair and committee members.
My name is Rhonda Wiebe, and I am here with Dean Richert. We are the co-chairs of the ending of life ethics committee for the Council of Canadians with Disabilities.
The Council of Canadians with Disabilities, or CCD, is a national human rights organization of people with disabilities who are working for an inclusive and accessible Canada. The CCD has deep roots in advocating for equality, human rights, citizenship, self-representation, partnership, and barrier removal. Its rich history includes its representation of the concerns of Canadians with disabilities in the Supreme Court of Canada and working to ensure equal rights in access to education, transportation, and other issues, including the one that is before us today.
Within the CCD structure, the ending of life ethics committee seeks to focus attention on and prevent private and societal actions that make people with disabilities die prematurely due to inequalities in health care, societal neglect, social prejudices rooted in fear, and negative perceptions about life with a disability.
I have worked for over two decades as a disability rights advocate at the local, provincial, national, and international levels. I also spent five years as a researcher examining end-of-life issues at the faculty of medicine at the University of Manitoba, but most importantly, I am also someone who has the direct experience of living with a life-limiting and sometimes fatal medical condition that affects almost all my vital organs and has left me with considerable vision loss and some mobility issues.
The CCD knows that adjusting to living with disability is hard. I have had 20 surgeries. Each time I undergo one, I have doubts about whether I will benefit or lose capacity. When I do lose capacity to see, to move, to dress myself, to walk, and to work, I have to adjust not only the perception others have of me but also my perception of myself. Although my experience is personal, it is also typical of those the CCD represents. It is something that people with disabilities have in common.
A few years back, I facilitated a support group for young people who suddenly acquired disability through accidents or onset of disease. In the first two years after that happened to them, each one of them experienced moments of suicidal ideation. Every person living with disability knows these dark places.
We are encouraged to hear that Wanda Morris, of Dying With Dignity, has acknowledged that her organization will not assist those who have recently acquired a disability to seek death. We know that with the right supports we can go on to have lives that, although they are different from what we once thought they would be, are nevertheless full lives. Steven Fletcher, former MP from Manitoba, also has acknowledged that if he had had this option, he might have ended his life shortly after his accident. It took him several years to find a new vision for himself, one that included being a parliamentarian.
These common experiences have led the CCD to carefully consider our response to the recent Supreme Court of Canada decision to allow physician-assisted dying. We come to you today asking you to consider three points as you begin the process of laying out a framework. All our points grow not only from our expertise as an organization but also from the Supreme Court's concern that protection of the vulnerable is a priority. The court determined that a safeguard system that imposed “stringent limits that are scrupulously monitored and enforced” would achieve a balance that would both enable access by patients to physician-assisted dying and protect those who are vulnerable and may be induced to commit suicide.
Vulnerability and suffering often go hand in hand. A review of clinical research on suicide prevention and vulnerability within the health care context indicates a wide range of factors associated with suffering that can lead to suicidal ideation and the request for physician-assisted dying. In our brief, we've listed factors that increase the risk of suicidal ideation, as put together by the American Psychiatric Association. We won't go into them now.
The three points we want to bring forward for your consideration are born out of our concerns regarding vulnerability.
First, CCD is requesting that a vulnerability assessment be mandated in order to ensure that a person requesting physician-assisted dying meets the criteria of that request. In Carter, the court acknowledged that any set of safeguards must recognize the complex and sometimes subtle and subconscious factors related to a request for physician-assisted dying. This confirms, for us, the requirement for a vulnerability, informed consent, and capacity assessment process. Not being vulnerable to inducement is a criterion.
With respect to informed consent, it demands that individuals requesting physician-assisted dying must have information regarding the supports in the community that deal with issues related to poverty, isolation, discrimination, and devaluation. Our question is whether or not a family physician can provide all of this information. It may require someone more qualified to inform the individual of these supports. For CCD, providing such information is highly relevant in determining whether a person may be vulnerable to inducement.
As stated before, it is our understanding that Dying With Dignity has indicated that they agree with CCD that persons newly diagnosed with a disability are vulnerable, and should not be permitted to have assisted dying performed. It is also our understanding, and important to note, that two national polls, one from the Canadian Association of Retired Persons, just recently put out, and the other from the external panel, when they dealt with the issue of physician-assisted dying, indicated that a majority of Canadians do not support physician-assisted dying without a prior review. With respect to people with mental health issues, very few Canadians believe physician-assisted death is a solution.
Secondly, we recommend a prior review board process. The paperwork that is necessary—for example, the vulnerability assessment, capacity and competency, along with the assessments of two physicians—would be submitted with the application by a patient requesting physician-assisted dying to a review board. A review board or a review panel, not a physician, would make the ultimate determination on whether a request for physician-assisted dying will be given.
We submit that the review panel should be chaired by a federally appointed judge to ensure consistency in reasons for judgments and facilitate Canada-wide standards. This is important. This is a Canada-wide standard. It should not be left up to individual doctors, nor individual provinces, to determine what the criteria are that have been articulated by the Supreme Court of Canada.
Finally, CCD puts forth the need to establish means by which all Canadians who need it will be provided with adequate palliative care.
Canada now finds itself in the bizarre situation where we have the right as citizens to ask a physician to help us end our lives, but we don't have the legal impetus for the right to palliative care. It is not covered under the Canada Health Act, and it is acknowledged to be available to only a minority of Canadians who require it. It is unconscionable that people should choose to die through physician-assisted dying because they have no choice, due to a lack of palliative care.
Yes, palliative care will require a national political will, health care supports, and dollars, but let's not base our health care strategies on what's cheaper instead of on what is the right thing to do.
The Honourable Sharon Carstairs, in her 2010 Senate report “Raising the Bar: A Roadmap for the Future of Palliative Care in Canada”, recommended the establishment of a Canada-wide strategy on palliative care as a partnership between the federal, provincial, and territorial governments and the community, which would pave the way for consistent minimum standards and benchmarks for nationally available palliative care services. She recommended the establishment of a Canadian palliative care capacity-building fund and also recommended that the provinces ensure that palliative care is covered under all provincial and territorial health insurance plans. CCD highly endorses Mrs. Carstairs' recommendations.
To sum up, CCD asserts that there are many social, economic, and other environmental factors that increase the vulnerability of persons with disabilities, especially the newly disabled. Careful scrutiny must take place to ensure that there aren't other remedies, besides death, that will lessen the suffering and indignity of these people.
Second, a review process that is easily accessible but does not necessarily require an oral hearing and is expedited quickly, as David Baker has articulated, say within 45 days from application to decision, is a safeguard that protects both doctors and patients.
Finally, CCD acknowledges that the crossover between the request for physician-assisted dying and the lack of access to palliative care is clear. There must be appropriate options so that real choices can be made available to all Canadians who want to have a good death.
I am happy to be here this evening.
As many parliamentarians here, including the co-chair, will attest, none of us ever think we're going to be former parliamentarians—
Voices: Oh, oh!
Hon. Steven Fletcher: —but yet here we are, so I am very grateful to have the opportunity to speak in front of this group and give you my two cents on legislation that's really important. I'm going to go really fast, because there's a lot of ground to cover in a short time.
First, when I was 23, I had everything going for me. I had just graduated from engineering. I was driving to a gold mine in northern Manitoba. I had a beautiful girlfriend. I was athletic. All that stuff was going well, and boom, I hit a moose with my car. The moose went through the windshield, the car went into the ditch, and it was a long time before I got to a hospital, as this was in 1996, before cellphones.
I was 23, and in an instant, I found myself completely paralyzed from the neck down. What does that mean? It means I cannot move below the neck. I do not feel a sense of touch, pain, or pleasure. I have no control of my bodily functions. I obviously have to rely on caregiving 24 hours a day, seven days a week, for the rest of my life.
I was told that if I were to survive, I would be in an institution. That's not what you want to hear. Mind you, after I was elected I did go back and say, “I don't think you meant the Parliament of Canada.”
Voices: Oh, oh!
Hon. Steven Fletcher: I was completely paralyzed and intubated. This is very important. I had tubes in my nose going to my lungs, and because my lungs had essentially collapsed—I didn't have a diaphragm helping me breathe like everyone else—I was on a machine for about three months, fully conscious, but getting phlegm sucked out of my lungs minute after minute, hour after hour, day after day, week after week, month after month.
There is no pain medication that can deal with that. It is terrifying. It is impossible to sleep. You think you're going to go mad. You can't talk to anyone. You're experiencing massive amounts of pain, such that your head wants to explode, but you can't do a thing about it. I call it “well-intentioned torture”. That's what they were doing.
When I was finally able to breathe and speak, two things happened. I had my family gather around. I told my mom and my dad—my dad is with me tonight—and my brother and sister that I loved them more than anything. Then I asked them to get my lawyer. I did not want to ever go through that again. The lawyer advised me that what I was asking was probably illegal, but I wanted it written down anyway, just in case. That was 20 years ago.
Let's fast forward. Sue Rodriguez is an example of a person who all the resources in the world cannot help at the end. I know that. I had experienced that. I was going to get better, and I was 23. I didn't believe the doctor's prognosis anyway, until much later, but Sue Rodriguez was going to drown, hopeless, in pain and in terror. She was denied what everyone in this room would want: an end to the suffering.
I've long been an advocate of the empowerment of the individual, personal autonomy, and having the government stay out people's lives as much as possible. I've written extensively on this issue. I've written articles across this country. Even The Economist magazine has asked for submissions. In fact, I have a book here called Master of My Fate. I can't distribute it because it's not translated, but you will find it in your mailboxes. It goes through the whole political saga.
I will skip that other than to say that you will have in front of you three private members' bills, two that I introduced and one that Nancy Ruth and Larry Campbell introduced in the Senate. The first bill deals with amending the Criminal Code. It's about five pages, and it has some of the safeguards that you would like to consider, I think. The second bill includes a panel, or some sort of review board, to check for best practices. After five years, say, it would report to Parliament. It would collect empirical evidence to find out why people are making the requests and what we can do to empower people so that they choose life. But we also have to recognize that sometimes people will choose death. In fact the Hippocratic oath recognizes that, if you read it.
The response to the bills in Parliament was deafeningly quiet. Harold's laughing, because he knows that everyone was.... It wasn't a good place to be—except all the media, virtually across the country, left-wing and right-wing, accepted it; talk-show radio, TV shows. It turned out that over 80% of Canadians supported physician-assisted death, even in the disabled community. The response I received through email was overwhelming. I had thousands of emails from people telling me their most personal details.
Let's go to today. What is central in all of this is that the individual must be a Canadian or permanent resident, must be 18 or older, and must be cognitive. Don't make it complicated. That's it. Those are the criteria. All you have to do is cut and paste that part of the decision into the Criminal Code.
I agree completely with CCD that we should provide the resources, and increase the resources, so that people do choose life, but again, there are situations where all the resources in the world won't matter. I think that's why a lot of people in the disabled community at large do support physician-assisted death. But I would ask those in the disabled community with reservations about this to be more empathetic to the people who are suffering. Having someone suffer, starving themselves to death, or being in pain or in terrible suffering, down the hall or down the street at the seniors residence or in a hospital or at home, having them live in pain and terror—it doesn't make my life better as a Canadian with a disability. It just makes me sad.
You have to recognize that people suffer, and to impose our view or for any group to impose any view on anyone else is un-Canadian and, I would say, unconstitutional, because doing so infringes on freedom, liberty, and the ability for self-determination.
With regard to doctors, I've heard a lot of testimony from doctors on how this is going to be tough love.
To the doctors and the medical profession, I say be professional, be tough. It's not about you. It's not about the medical profession. It's about the individual and his or her choices. If the person is a cognitive adult, why on earth would we impose our views on what their quality of life is on them? I'm not talking about someone with a bad hair day. There is obviously going to have to be some reason, and common sense needs to be applied.
Having the committee bring forward legislation really makes me concerned, because anything that comes from Ottawa is bound to fail when it comes to the cross-jurisdictional issues of criminal law and health care. I would suggest that the committee stay as close to the Carter decision as possible and allow the provinces to determine their own fates. That is what's happening already with Quebec. In fact, Quebec has to go further. They have to amend the law to provide for more circumstances.
Last, on the issue of advance care directives, after this four-month period is up, I think there will be a paradigm shift in what is allowed in a living [Technical difficulty—Editor]. I think people need to be empowered to say that in 20 years from now if they have dementia or these things or they end up in a terrible car accident or whatever, and they so choose, then they would not want to live. I can go on. I'll give you the book.
Ladies and gentlemen, Invictus, the famous poem, says, “I am the master of my fate: I am the captain of my soul”. Let's move forward with hope, compassion, empathy, and mercy.
Good evening. Thank you for inviting me to speak with you today. I'm grateful for the opportunity to be a part of this critical conversation.
I should note here that I've played a variety of roles in various initiatives to advance end-of-life law reform in Canada. Today, however, I speak only on my own behalf as a legal academic who has been researching and writing about assisted death in Canada and abroad for more than 20 years.
Given the time constraints, I'll jump right to the heart of the matter.
I would argue that in order to have the properly administered regulatory regime for medically assisted death called for by the Supreme Court of Canada in Carter, the following need to be established through federal, provincial, and territorial legislation and health professional self-regulation: definitions of some key incontestable terms; criteria for access to medically assisted death; processes for ensuring criteria have been met; access for rural and remote contexts, and in the face of conscientious objections by institutions and providers; and oversight.
Other issues that need to be addressed also include liability insurance; life insurance; medical certificates of death; good faith immunity; and, perhaps most importantly of all, access to palliative care.
Of course, the federal Parliament cannot do all of these things, so you need to focus on what you can do. Again, given time constraints, I'm going to focus my remarks on what you can and, I would argue, should do under the federal criminal law power. You can—and I would argue should—exercise the federal criminal law power to design and implement a robust regulatory framework that, first, respects the autonomy of capable individuals making free and informed decisions with respect to medically assisted death; second, protects vulnerable persons from being induced to end their lives at a time of weakness; third, enhances access to medically assisted death; and fourth, ensures that the system of medically assisted death in Canada is well monitored.
Allow me to propose some key elements of such a framework. The first is definitions of terms.
Medically assisted death: I would define this as medically assisted suicide and voluntary euthanasia that is performed by a physician, by another health care provider acting under the direction of a physician, or by a nurse practitioner. This clarifies that the Criminal Code exception covers both assisted suicide and voluntary euthanasia, as is required by Carter, and it resolves the issue of who is protected under the Criminal Code exception in a manner that retains an appropriate level of professional competency and accountability while also ensuring access, especially in rural and remote communities where there may be no physicians.
Assistance: I would define this explicitly as the provision of a prescription for a lethal dose of medication or a lethal injection for the purpose of medically assisted death. This clarifies that providing supporting services—for example, a pharmacist filling a prescription—during the delivery of medically assisted death does not constitute providing medically assisted death and therefore does not violate the Criminal Code. This will prevent exposing people who provide such services to liability and will prevent people from declining to provide such services because of fear of liability.
Grievous: I would recommend that you use its established definition in law and common usage, which is “very severe or serious”. Do define it so as to make the meaning clear and to prevent it from being narrowed inconsistently or inappropriately by provincial-territorial legislative assemblies or by regulatory colleges. Do not define it through a list of conditions, because you cannot possibly anticipate every condition, and many conditions are only sometimes grievous.
Irremediable: I would codify the subjective aspect that the Supreme Court established. As the Supreme Court said, it means that the condition cannot be alleviated by a means acceptable to the person.
Mature minor: this is a person under the age of majority who has the capacity to make an informed decision about medically assisted death and sufficient independence to make a voluntary decision. This is a well-established and well-understood concept in health law and policy across Canada.
Moving from definitions of terms, we come to the second key element: criteria for access. Access should be limited to those who have “a grievous and irremediable medical condition (including an illness, disease or disability) that causes enduring suffering that is intolerable to the individual”, based on their assessment of their personal circumstances. This is Carter.
Terminal illness should not be an inclusion criterion. It was not included by the Supreme Court in Carter. It is too vague and indeterminate. It is arbitrary and it has no moral justification as a barrier to access.
A specific age should not be an inclusion criterion. Although the Supreme Court used the word “adult”, it did not define it—intentionally—and in law the word “adult” has been defined in various statutes and the common law as a variety of ages not limited to 18 or 19.
It is also important to note that across Canada, it is well established that individuals under the age of majority have the authority to make health care decisions, even if the consequence will be death. It's also important to note that the Supreme Court, in A.C., held that an “irrebuttable presumption of incapacity” for medical decision-making based on age violates the charter. First, then, it doesn't violate Carter to include mature minors. Second, even if Carter only held the Criminal Code prohibitions to be invalid for individuals over the age of majority, Carter sets a floor and not a ceiling, and the issue of minors was not before the court. The third and most important point is that to exclude individuals on the basis of a specific age flies in the face of established health law, policy, practice, and the charter.
Next, mental illness should not be an exclusion criterion. It was not excluded by the Supreme Court, and not all individuals with mental illness are incompetent. Physicians already routinely determine whether someone is competent, even when they have a mental illness. Furthermore, the suffering that can accompany mental illness can be as excruciating as any suffering that can accompany physical illness. Finally, I would argue that excluding individuals on the basis of mental illness would violate the charter.
Before moving on to procedural safeguards, I should say a few words about when the individual must meet the criteria for access. This is what you've been discussing as the “advance directives” issue. The questions are these: what criteria do you need to meet to make a valid request for an assisted death, and what criteria do you need to still have at the time of the provision of assistance?
I would suggest that the best position to take at this time is to require the following: at the time of the request, the patient must have a grievous and irremediable condition and be competent, and at the time of the provision of assistance, the patient must still have a grievous and irremediable condition and be experiencing intolerable suffering by the standards set by the patient at the time or prior to losing capacity.
This approach prevents the tragic case of someone having met all of the criteria but being denied medically assisted death because they became incompetent just before it could be provided. This approach also prevents someone killing themselves earlier than they otherwise would for fear of becoming incompetent before reaching the point of intolerable suffering. One example is a person with progressive dementia.
Finally, this approach allows for the consent process to happen before someone is actually experiencing intolerable suffering. It seems cruel to require the person to be actively experiencing intolerable suffering throughout the process of assessing the criteria, including, perhaps, a waiting period.
Moving from criteria for access to the third key element, procedural safeguards, here we turn to rules with respect to consent, capacity assessments, documentation, reporting, and other procedural safeguards. This is, of course, the area with the greatest overlap in jurisdiction with the provinces and territories. However, for a number of reasons, I would argue for federal action here, tied closely to the criminal prohibitions and exceptions.
The first reason is to ensure consistency in approach across Canada. The recent federal-provincial-territorial ministers of health meeting does not instill confidence that they will come out with a harmonized approach. The second is to prevent gaps in coverage if some provinces and territories do not legislate. There is a real risk that some provinces and territories will not legislate but will just leave this matter to the colleges, which have already shown themselves to not be willing to adopt a harmonized approach. Their newly developed standards are an absolute patchwork.
The fourth key element is oversight.
We need two levels of oversight. The first is retrospective case review. For this I would recommend a regional review committee system to retrospectively review all cases of medically assisted death to determine compliance with the new rules. The second is oversight of the regulatory framework itself. For example, it would ensure data collection, analysis, and reporting. It would commission research to ensure ongoing, evidence-based policy-making, and it would make recommendations to the minister about potential law and policy reform with respect to medically assisted death in Canada. For this I would recommend the creation of a national oversight commission for medically assisted death.
Finally, there's the substantial similarity provision. This would allow provinces and territories that wish to design and implement—or, in the case of Quebec, keep—their own regimes to do so as long as these regimes were substantially similar to the federal regime. This respects the fact of overlapping federal-provincial-territorial jurisdiction, assures a level of harmonization across the country in relation to the core elements of the exception to the Criminal Code prohibition, and prevents gaps if some provinces and territories fail to legislate. In Canadian law, this is an established way of responding to situations of overlapping jurisdiction, such as this one.
With that, my time is up. I thank you for your attention, and I welcome your questions after the next presentations.
In Carter, the court actually explicitly stated that Canada could avoid any of the problems Belgium is facing in the context of physician-assisted dying by adopting a strict regulatory regime that allows for less discretion. I noticed with some disappointment that the provincial–territorial advisory group now recommends a regime that is more flexible, less restrictive, and more open-ended than even the Belgian system. I invite you, therefore, to look in more detail at the documented cases and evidence about problems in the Belgian system, which I've documented in this memo, in order for you to fully understand the risk associated with a flexible and open-ended system. I have a more detailed chapter that I can share later with the committee as well.
I can only talk about the essence because I want to give more time for the proposal, but the essence is this: even if, in Belgium, physician-assisted dying requests are to be granted only when certain conditions are met, the vague and flexible criteria, coupled with the significant powers vested in physicians, have resulted in what I would call a quite open-ended access regime.
Individual physicians are the main gatekeepers, but their tools of competency assessment and informed consent assessment are questionable and difficult. There are documented cases of how it may not work in the Belgian system. More than 70% of the physician-assisted dying requests are now granted in Belgium, which is a significant increase over time.
In Belgium, physician-assisted dying has expanded beyond the original intentions of offering compassionate access and exceptional care. The numbers give you an indication. We have gone from 347 cases in 2004 to 2,021 cases in 2015, the latest number, but numbers tell us only so much. Obviously these could all be valuable cases, but they do suggest a normalization of the practice.
I want to emphasize, as I do in the memo, that it is actually more interesting to look at the areas in which physician-assisted suicide has expanded. I'm not saying that these are the majority of the cases, but these are cases that the committee should be aware of. It has expanded in areas that are more problematic and a bit more existential, such as suffering cases and also, increasingly, mental health. This expansion affects people who are experiencing life-changing disabilities; situations of loneliness, isolation, societal stigmatization, and rejection; difficulties with managing daily activities; and difficulties functioning independently. In those situations, good support measures and structures can prevent premature death, while all-too-easy access to physician-assisted dying can incite life-ending requests.
I won't discuss the many publicized cases in the memo that you have in front of you, which have been quite widely advertised, but I will say that these are not just anecdotal cases. They are actually real and lived physician-assisted dying experiences, which in some cases we have seen documented in detail. These are the publicly known cases.
In my main memo, I pay more attention to a less publicly discussed aspect: euthanasia in the context of mental health. I invite the committee to read this discussion in detail. When physician-assisted dying is defended in the context of mental health, it's often presented that PAD is only necessary and will only happen in exceptional cases of untreatable chronic depression, where physician-assisted dying is the only compassionate option, but reports in Belgium may surprise you. Also, ongoing research about practices in the Netherlands show that it now involves people suffering from personality disorders, post-traumatic stress, anxiety, eating disorders, schizophrenia, addiction, autism, and even profound grief. In most instances, according to ongoing research, it involved socially isolated, lonely people. In some cases, depressed people were euthanized without close family members even being alerted about the euthanasia request.
Reports have also raised questions about the safeguards in place. Again, you have documentation about that. I indicate why competency assessment is a notoriously problematic tool in very complex areas of mental health in particular, but certainly also in the context of disability, because, for example, it is influenced by the values of the physicians.
In Belgium, you have a small group of very committed physicians who are committed to physician-assisted dying and who by nature may be tempted to much more easily conclude that patients who are requesting access to physician-assisted dying are competent, and thus we see their lives being terminated.
There are also questions in many of these cases about how treatment resistance has been determined. Physicians may easily presume that people are treatment resistant, but this is a notoriously difficult thing to assess in the context of mental health, and it actually has been widely questioned.
I also discuss the limits of the reporting system with respect to the fact that there is still under-reporting, and also with respect to the fact that the reporting can actually give us the wrong sense of security. People are not looking sufficiently at exactly what is happening in individual cases, as is described in my memo. I won't expand on that here.
I will now turn it over to my colleague.
I want to reiterate a point made by the CCD to you, which is that while there is strong support in polls for physician-assisted dying—and that is not the issue, the Supreme Court having spoken—there are only two polls of which we are aware that address the issue of safeguards. They are the CARP poll, which has been mentioned in the papers recently, in which a majority of people said a panel, a prior review, rather than an ex post facto
or after-death review, was appropriate, and that of the federal panel, which conducted its own review and found that more than 50% supported review by a panel before the death occurred, rather than after death, as occurs in Belgium, amongst others.
Senator Nancy Ruth wanted to put it in an international context. The American experience is not relevant to you, because in the American states this applies only to people in the last six months of their lives. It's a completely different issue.
There are examples, and Colombia is the best one. There the Constitutional Court of Colombia, in December of 2014, said they were wrong in 1997 to say that this should happen with physicians' involvement only, and they now have required that prior review be put in place. That was done in May of 2015. You heard this from your justice advisers. The U.K. model, as you also heard from the justice advisers, also involved a prior review.
I would like to highlight two things and then invite your questions. Could you turn to the first tab in that blue volume? This is a piece of legislation that was drafted by me and Gilbert Sharpe for your assistance. It has actually been available since June of last year. I would be happy to answer any comments or questions that may arise from it.
What I would like to highlight first of all are the definitions of “informed consent” and the definition of “quality of life”.
First of all, in regard to informed consent, as the CCD indicated, in situations where one is talking about the withdrawal of life-sustaining treatment, as Mr. Fletcher did in his personal situation, the process is not as simple as “two physicians”. In those situations, there are social workers and there are case managers. There are non-physicians involved in the process of informing people about the issues that are of uppermost concern to them, as they would have been for Mr. Fletcher.
If we can turn to “quality of life care” on the next page, page 3, at the bottom, this language in (a) through (g) comes from the trial decision of Justice Smith. This is the only place in the Carter decision where people who subsequently were assisted to die indicated why they wanted to die. These are the issues: loss of autonomy; ability to engage in activities to make life enjoyable; loss of dignity; loss of control of bodily functions; perceptions that care requirements represent a burden for family, friends, or caregivers; pain control, including access to proportionate palliative care and/or hospice care; and concerns about the financial implications of care that is not an insured service.
This is crucial language, because these are the issues that cause people to seek assistance. These are not treatment issues. These are not issues in which doctors are involved. These are the issues in which counsellors and case managers are involved in addressing such questions as, Where am I going to live? How am I going to be transported? How am I going to go to the bathroom?
These issues are the issues that we say should be incorporated into the idea of informed consent, because that is why people seek assisted dying. Physicians are not the ones—and they would be the first to acknowledge this—who are in a position to address these issues. We do not say this is an issue that should be imposed on persons in late stages of life, when the options or choices are very few.
One final point, which I would emphasize, is that the bill addresses the access question. The bill imposes the obligation on the attending physician or the family doctor who is approached to initiate the process and see that the process goes to review. It is not a process for screening out applications, and the applications can proceed, in a case such as Dr. Low's, on an expedited basis within a matter of days, as review boards can do. The requirement set out here is that there be a maximum of 45 days. This is not an issue. Access is not an issue under this proposal.
Sure. I think the concern people are expressing is understandable, but I think it absolutely can be dealt with by reflecting on the Carter test, and also in the context of the practice of medicine.
Think about what “informed choice” requires. The individual has to have capacity, under the Carter test, which means they have to understand the nature and the consequences of the decision to be made. In the immediate aftermath of a traumatic injury, physicians will say a person doesn't actually have that yet, so being responsive to that kind of situation is built into the test.
Similarly, you have to be informed. You could argue again that in the immediate aftermath of an injury, you don't yet have the full information about what it is going to be like to live in that way, so you would again maybe not be found to be fully informed.
Under the Carter test, the suffering also has to be enduring. In the immediate days after an accident, no physician is likely to say that the suffering is enduring and that someone therefore meets the test.
The final thing to say in response to this is that physicians already, every day, deal with exactly this kind of scenario in relation to refusals of treatment. You can have somebody who has a traumatic injury, and then they say the kinds of things that may have: “I don't want the treatment. I don't want a ventilator. I don't want artificial hydration or nutrition.” We work with the established principles of informed choice and insist that the person have capacity and be informed, and that can take time.
You don't have people losing their ventilator or having antibiotics withheld in the immediate aftermath of a traumatic injury. I'm saying it can absolutely be managed in the context of current practice. We rely on physicians to do that now, and Justice Smith acknowledged this in her trial decision.
I think it can play a data-collection role. It is very important to have national information so you can see what's going on, track your system, and make modifications as you need to if there are any concerns that arise. We need national data on that.
I think it also can commission research. As we've seen in the Netherlands, every five years they do a broader review of end-of-life decision-making. It's not just assisted dying. It's critically important to do that. The commission could commission that.
Also, if we have access problems, you could have that commission be responsible for developing a network of providers to do education. Support of health care providers is going to be essential here, as is a network, so that we can actually enhance access. That way, it can also play the role of quality assurance with regard to the regulatory system itself. I would also say that if you don't have participation from the provinces, the regional review committee would be run by the oversight commission so that you would have oversight of specific cases, a retrospective case review, happening as well.
I'll make a quick comment, if I may, on the issue of the provincial and federal jurisdiction around this issue, because it's tricky. One way of avoiding court challenges to this is if the federal government puts out the commission, establishes it as an arm's-length commission, and all levels of government can use the mechanism of administrative interdelegation and give those oversight powers to that body. Then everybody agrees that the body does that, so nobody can go in and say the feds did it on their own and so it's ultra vires over here, or the other way around.
You don't have time now, and we haven't seen the inclination to do this collaboration in advance. We'd hoped for it, but it's not there. However, you could get there by putting the commission in your federal legislation and talking with the provinces and territories, suggesting to do it this way, through administrative interdelegation. It's a technique that's used for cooperative federalism.
Let me finish, sir. I have my five minutes.
Then you define “assisted suicide”, but there's no reference to euthanasia, which is covered by Carter, so there is an omission in your definition.
Then you define the term “grievous”, which is a term that we're wrestling with in this committee. You limit that term to “at the end of life”. Carter has never said that grievous has to be at the end of life. You limit the concept of grievous to the end of life, while Carter does not include that very specific criterion in its decision.
Later on, on informed consent, you include the test of the reasonable patient and what a reasonable patient would decide in the same circumstances. Carter never imposed that test in its decision.
Then you go on with the test of quality of life, in which the element of personal suffering is not mentioned. It is a key element in Carter. I quote:
...causes enduring suffering that is intolerable to the individual in the circumstances of his or her condition...
It is the person who decides, not the average man placed in the same condition, because the element of subjectivity is important in that decision.
Finally, you judicialize the decision by establishing a review board. Judicializing that decision means that you open any decision to litigation in court.
In my opinion before this committee, venturing in that direction is a very important decision, because it totally changes the relationship with the doctors. How many doctors is immaterial, you know, but you are now in a review board, in a litigation process, and that review board is subject to the surveillance and control of the Supreme Court in Ontario and the Superior Court in Quebec.
Therefore, I have some problems with your template. There are good elements in it, but at first sight, in my reading of it, my first objective is to at least satisfy Carter. Then the Parliament of Canada can decide if it wants to increase the rights, because the Charter of Rights represents a limit. Parliament can increase those rights, and we have increased the rights in Parliament on many occasions.
Second, Parliament has the right to decide if a criminal offence is no longer a criminal offence. When Parliament decriminalized homosexuality in 1968, it decided that it was no longer an offence. There are elements in the issue of physician-assisted death that could be decriminalized by Parliament if the will of Parliament is to do so.
That's why I don't think we should approach this issue with the elements of judicialization that would put it below Carter and, in fact, make the decision much more complex for the average Canadian caught up in suffering that is intolerable to an individual who wants to put an end to it because it is grievous or irremediable.
I want to thank our witnesses for being here today. I will do my best to leave a little time for you to answer my questions.
I enjoyed reading your brief, Mr. Baker, and Mr. Lemmens, but I found it very troubling. You shared the story of the Belgium experience, and you touched a bit on the Netherlands as well.
I think this paper addresses many of the concerns that many Canadians have in terms of what you refer to, I think very aptly, as “mission creep”. It's one concern I have, especially as it relates to what I consider to be some of our most vulnerable Canadians, who are facing mental health challenges and severe depression.
I want to mention some of the quick statistics that you point out in your paper. You said that from 2004 to 2014, demand for physician-assisted dying went from 495 to 2,021. Specifically, even more troubling is the expanded demand for physician-assisted dying from those facing mental health challenges. As I said earlier, I have a special concern for those facing those challenges.
In your paper, on page 10, you say the following:
Whether there is no hope for improvement, and thus whether a condition is untreatable or ‘irremediable’ is particularly hard to assess in the mental health context. The concept of ‘refractory’ or ‘treatment-resistant depression,’ for example, is in and of itself highly contested. People suffer indeed tremendously and often chronically from depression. Yet, studies focusing on ‘treatment-resistant depression’ indicate that many patients, in one study even 60.2%, fully recover.
You go on to say that mental health treatment often takes time, particularly because finding the right diagnosis is often hard and finding the right treatment often harder.
I want this committee to be seized with what I think is an immense responsibility—namely, to be 100% sure, especially in cases of mental health challenges, that we do not offer a permanent solution to what is a temporary problem.
You specifically mentioned in your opening remarks that you disagree with the provincial-territorial recommendations. I'm wondering if you would outline for us some of the specifics on which you disagree so that this committee will avoid the potential pitfalls that could be inherent in adopting that model.