The Joint Chair (Hon. Kelvin Kenneth Ogilvie (Senator, Nova Scotia (Annapolis Valley - Hants), C)):
We have a quorum and I'm calling the meeting to order.
Welcome to the 11th meeting of the Special Joint Committee on Physician-Assisted Dying.
I'm Kelvin Ogilvie, a senator from Nova Scotia and co-chair of this committee. I'm chairing it today along with my co-chair colleague, Rob Oliphant, the member of Parliament for Don Valley West.
In this session, which will go from 5 to 6 p.m., we have two groups presenting. First of all, we have His Eminence Cardinal Thomas Collins, Archbishop of Toronto, and with him Laurence Worthen, executive director of the Christian Medical and Dental Society of Canada and the Coalition for HealthCARE and Conscience.
We welcome you. I will remind you that together you have a total of 10 minutes for your presentation.
Appearing by video conference we have Vyda Ng, executive director of the Canadian Unitarian Council.
Ms. Ng, you have 10 minutes as well. Because it's technology, and we already know you've been shunted around Toronto a bit with something happening at the first site, we're going to invite you to present first.
Just before you start, I want to remind the witnesses and everybody that the committee members, when called, have five minutes in total for their question and the response, so the questioners should be efficient with language, and to the responders, if you could be direct in your answers, it would be much appreciated.
With that, I invite Ms. Ng to present.
Mrs. Vyda Ng (Executive Director, Canadian Unitarian Council):
Thank you for the opportunity to present before this joint committee.
As far back as the early 1970s, the Canadian Unitarian Council has advocated for the right of a terminally ill patient to make decisions about the time and manner of their death. We were involved as intervenor in the Taylor and Carter cases in 2012 and 2014. In this presentation I wish to emphasize the following.
First, around eligibility criteria and competency, we are of the belief that the competency requirement should apply at the time of the initial request for physician-assisted dying, and at the provision of the requested treatment. However, we do recognize that patients with an irremediable condition may deteriorate at any time. Therefore, we think that once informed consent has been fully attained, this should stand, and that decisions around the manner and time of death should be made on an individual basis, for example, where an individual suffers from dementia or lapses into a coma after providing the initial informed consent.
We also believe the consent to the termination of life must be made freely, without coercion or pressure, and after the patient has had a chance to consider all treatment options.
In terms of the grievous and irremediable condition, we believe there are a number of illnesses, disabilities, and conditions that cover this range of description, and we believe the condition that causes the suffering that is intolerable to the individual should be defined by the individual and not by any outside body. We believe very strongly that there should not be a predetermined list of illnesses, conditions, or symptoms, as the experience varies from person to person.
On the matter of equitable access, we believe that publicly funded institutions should be required to provide physician-assisted dying on their premises. Other health care professionals may provide assisted-dying medication, especially in situations where there is no physician available or willing, or in the more remote regions.
In areas that are remote, ways must be found to allow patients equitable access so that there are no delays and the same level of compassionate care may be provided.
In circumstances where the physician is unwilling to provide assisted dying, mechanisms must be in place for individuals to access this without undue stress.
We also believe physicians and health care practitioners should be able to make their own decisions based on their conscience. They should be able to refuse the provision of assisted dying if this is their personal belief. They should be able to make these decisions without fear of reprisals or consequences; the institutions for which they work should not be able to levy any kinds of consequences upon them.
When it is the case that a physician decides not to provide assisted dying, the patient must be given full access to other means. There should be no impediments to the individuals requesting assisted dying, and institutions should not prevent patients from accessing this care.
There needs to be a carefully thought-out system for transfer of care so that patients are not denied compassionate treatment and to make sure this is done without additional stress or trauma to the individual. Patients' needs need to come before doctors' wishes, and provincial, territorial, or municipal governments should not allow any roadblocks or barriers to exist for patients to access assisted dying.
Why does the Canadian Unitarian Council feel so strongly about this? As a religious institution, we realize different faiths have different beliefs, but we do not think the views of any one faith can be used to restrict the freedoms of other individuals. As a religious body, we have had a history of supporting choice in all manner of things, even when it hasn't been popular to do so, things such as choice in abortion, the rights of the lesbian-gay-bisexual community, or the call of women to be ordained. We've often taken the path that hasn't been popular, but we feel that this is the right thing to do.
It's very much in keeping with Canadian values to put the needs and wishes of Canadians ahead of the values of individual doctors and institutions, and to respect each person's dignity at the most traumatic period of their life.
We also think that in order to safeguard good processes, reviews should take place after each instance of physician-assisted death. These are necessary, but we do not think that having a review before the medication is in the best interests of the patient in case doing so leads to delays.
That is the end of our presentation.
His Eminence Thomas Cardinal Collins (Archbishop, Archdiocese of Toronto, Coalition for HealthCARE and Conscience):
Good evening, and thank you for allowing us this opportunity to provide input on such a profoundly important subject.
I appear today on behalf of the Coalition for HealthCARE and Conscience. Joining me is Larry Worthen, the executive director of the Christian Medical and Dental Society of Canada.
We are like-minded organizations committed to protecting conscience rights for health practitioners and facilities. In addition to the Catholic Archdiocese of Toronto and the Christian Medical and Dental Society of Canada, our members also include the Catholic Organization for Life and Family, the Canadian Federation of Catholic Physicians' Societies, the Canadian Catholic Bioethics Institute, and Canadian Physicians for Life.
I will address two issues: conscience protection for health care workers, and palliative care and support services for the vulnerable.
For centuries faith-based organizations and communities have cared for the most vulnerable in our country, and they do so to this day. We know what it is to journey with those who are facing great suffering in mind and body, and we are committed to serving them with a compassionate love that is rooted in faith and is expressed through the best medical care available.
We were brought together by a common mission: to respect the sanctity of human life, which is a gift of God; to protect the vulnerable; and to promote the ability of individuals and institutions to provide health care without being forced to compromise their moral convictions. It is because of this mission that we cannot support or condone assisted suicide or euthanasia.
Death is the natural conclusion of the journey of life in this world. As the author of the Book of Ecclesiastes wisely observed long ago, the dust returns to the earth as it once was and the life breath returns to the God who gave it. Death comes to us all, so patients are fully justified in refusing burdensome and disproportionate treatment that only prolongs the inevitable process of dying, but there is an absolute difference between dying and being killed. It is our moral conviction that it is never justified for a physician to help take a patient's life under any circumstances.
We urge you to consider carefully the drastic, negative effects that physician-assisted suicide will have in our country. Killing a person will no longer be seen as a crime but instead will be treated as a form of health care. According to the Supreme Court, adults at any age—not just those who are near death—may request assisted suicide.
Following the lead of some European countries, whose experience with assisted suicide and euthanasia we disregard at our peril, the provincial-territorial expert advisory group has already gone beyond the restriction of assisted suicide to adults and has proposed that children be included.
The right to be put to death will, in practice, become in some cases the duty to be put to death as subtle pressure is brought to bear on the vulnerable.
Those called to the noble vocation of healing will, instead, be engaged in killing, with a grievous effect upon both the integrity of the medical profession committed to doing no harm, and the trust of patients and those from whom they seek healing. Even those doctors who support this legalization in principle may be uneasy when they experience its far-reaching implications.
The strong message from the Supreme Court is unmistakable: some lives are just not worth living. We passionately disagree.
In light of all this, it is clear that reasonable people, with or without religious faith, can have a well-founded moral conviction in their conscience that prevents them from becoming engaged in any way in the provision of assisted suicide and euthanasia. They deserve to be respected. It is essential that the government ensure that effective conscience protection be given to health care providers, both institutions and individuals. They should not be forced to perform actions that go against their conscience or to refer the action to others, since that is the moral equivalent of participating in the act itself. It's simply not right or just to say, “You do not have to do what is against your conscience, but you have to be sure it happens”.
Our worth as a society will be measured by the support we give to the vulnerable. People facing illness may choose to end their lives for reasons of isolation, discouragement, loneliness, or poverty, even though they may have many years yet to live. What does it say about us as a society when the ill and the vulnerable in our midst feel like burdens? Often a plea for suicide is a cry for help. Society should respond with care and a compassionate response to these vulnerable people, and not with death.
Proper palliative care to date is not available to the majority of Canadians. It is a moral imperative for all levels of government in our country to focus attention and resources on providing that care, which offers effective medical control of pain, and even more importantly, loving accompaniment of those who are approaching the inevitable end of life on earth.
Larry Worthen will now provide more detail about some specific recommendations.
Mr. Laurence Worthen (Executive Director, Christian Medical and Dental Society of Canada, Coalition for HealthCARE and Conscience):
Thank you, Cardinal Collins.
Ladies and gentlemen of the committee, His Eminence has provided you with some insight into our concerns about how legalizing physician-assisted suicide or euthanasia will impact vulnerable patients.
Provided they can consent, people with disabilities such as rheumatoid arthritis and paraplegia, or those with mental health difficulties could qualify for assisted death according to the criteria set down by the courts. Often people who have these challenges are struggling in a world with many barriers. The danger is that they will choose assisted death because of the failure of our society to provide the necessary support.
Through increased access to palliative care, disability, chronic disease, and mental health services, Canada can significantly reduce the number of people who see death as the only viable option to end their isolation, their feeling of being a burden, and their sense of worthlessness.
Our concern for our patients extends to our concern for conscience protection. Recently the College of Physicians and Surgeons of Ontario passed a policy requiring referral for assisted death. A referral is the recommendation or a handing over of care to another doctor on the advice of the referring physician. The requirement to refer forces our members to act against their moral conviction that assisted suicide or euthanasia will, in fact, harm their patients. If they refuse to refer, they'll risk disciplinary action by the Ontario college.
When a proposed practice calls into question such a foundational value of the common good of society and the foundational value of the very meaning of our profession, a health care worker has the right to object. Health care workers do not lose their right to moral integrity just because they choose a particular profession.
In the landmark Carter case, the Supreme Court of Canada said that no physician could be forced to participate in assisted death. It also said this was a matter that engaged the charter freedoms of conscience and religion. It is not in the public interest to discriminate against a category of people based upon their moral convictions and religious beliefs. This does not create a more tolerant, inclusive, or pluralistic society, and it is ironic that this is being done all in the name of choice.
Fortunately, six other colleges have not required referral. We have enumerated several possible options for the federal government to ensure these charter rights are respected all across the country. We have a legal opinion, which we will make available to the committee, that lists five ways the federal government could protect conscience rights.
If the federal government does not act, then we risk a patchwork quilt of regulatory practices and a serious injustice being done to some very conscientious, committed, and capable doctors.
Despite our concerns, members of our coalition will not obstruct the patient's decision should this legislation be put in place. The federal government could establish a mechanism allowing patients direct access to a third party information and referral service that would provide them with an assessment once they have discussed assisted death with their own doctor and clearly decided they wish to seek it.
Our members do not wish to abandon their patients in their most challenging moments of vulnerability and illness. When we get a request for assisted death, should this legislation go ahead, we'll probe to determine the underlying reason for the request to see if there are alternatives for management. We'll provide complete information about all available medical options, including assisted death. However, our members must step away from the process, allowing the patient to seek the assessment directly once they have a firm commitment to take that path.
Like our coalition, the Canadian Medical Association has stated that doctors should not be required to do referrals for assisted suicide or euthanasia. It's important to remind the committee that no other foreign jurisdiction requires physician compliance in assisted death through a referral.
In closing, we highlight four areas of serious concern, the need for the following: improved patient services, including palliative, mental health care, and support for people with disabilities; protection of the vulnerable; provisions that physicians, nurses, and other health care professionals not be required to refer for or perform assisted death or be discriminated against because of their moral convictions; and finally, protection for health care facilities, such as hospitals, nursing homes, and hospices, that are unable to provide assisted death on their premises because of their organizational values.
Thank you for your time and consideration.
Mr. Mark Warawa (Langley—Aldergrove, CPC):
Thank you to the witnesses for being here. It's very interesting.
I researched the Unitarian Council and I didn't see any hospitals that had been established by the Unitarian Church, but I did find many that are faith-based Catholic hospitals.
I appreciate the question from MP Shanahan and her sharing that we should not impose our beliefs on other Canadians. However, there's this balance of faith and doing what's right in our own hearts too. Also there's been comment around this table that a doctor's conscience should be protected, and maybe not to do it themselves, but to refer.
I've heard from most physicians.... Actually, I think it was 70% of physicians who do not want to have to be required to refer, so 30%, which is 24,000 physicians, are willing to practise this. Focusing on the 70%, I think that most Canadians believe they should not be forced to perform assisted suicide or euthanasia and they should not be forced to refer.
There's been a question, I think from one of our senators, that institutions, bricks, do not have a conscience. If you could comment, do institutions have a value system that would say yes or no? Should they have the right to say no as an institution?
Is there a possibility of having a harmonizing system? You could have institutions, hospitals, like a Catholic hospital, that are not bound because they're providing health care. They could be known as a hospital that provides health and natural death, and there could be some hospitals that provide that other choice. Could you comment on that?
Cardinal Thomas Collins:
I think it's very true to say that institutions are not bricks and mortar. You don't look around and say this is.... Institutions are made of people. Institutions are like the Sisters of St. Joseph, the Grey Nuns, all of the various groups who have brought loving health care to this place. They're not things; they're communities of people. They have values, and that's why people come to them. That's why they seek them out.
They know when they go, for example, to a hospital—and I can think of St. Michael's Hospital, St. Joseph's Hospital, Providence centre which has a wonderful palliative care place.... They know they can trust when they come to the sisters or to the church. It's true, as well, for Jewish and Protestant institutions, similar institutions, of which there are many. In my own diocese, there are very many. They can trust that we have certain values that we hold to. Those values are important for our whole society. Political parties have values; other institutions have values. They're not objective things. They're not material things. That's a great value for our whole community.
These institutions are funded by the government because they do immensely good work. They provide a variety, diversity, choice, I might say, to people, and that's very, very important.
I would say that institutions provide the spirit. I think of the one next to where I live, the Urban Angels, St. Michael's. It's a sign of hope for people. If you undermine the institution for what it is, our society will be very much harmed. Our whole community would be a lot harsher, colder, crueller, without the witness given by communities of faith who are on the ground, on the street, day by day, caring for the most needy. I don't think they should be undermined or attacked.
Mr. Garnett Genuis (Sherwood Park—Fort Saskatchewan, CPC):
Thank you very much, and thank you to the witnesses for being here today.
Cardinal Collins and Mr. Worthen, you bring a refreshing perspective. I would say respectfully that it's a perspective I wish we could have had an opportunity to hear more of at this committee.
I have two specific issues I'd like to raise. I'll raise them both at the same time, if that's okay, and then leave the balance of my time to you gentlemen to respond to them as you wish.
My understanding is that the idea of dignity, a word we hear often in this committee, is very important in the Catholic tradition as well, but I think sometimes we use words like “dignity” and “compassion” without a certain precision to them.
Cardinal Collins, could you talk to us a little bit about the understanding of dignity in the Catholic tradition, and give us a bit of a definition? Of course, we would all like to see people have dignity at the point of their death. Perhaps, then, we need to think a little bit about what dignity really means.
The second issue I want to hear more about is palliative care. I think all of us agree that palliative care is good, and we would like to see more palliative care. I think we need to go further than that and recognize that it is not just desirable but necessary to provide people with palliative care.
This was made clear by the report of the expert panel—and I'm quoting here—that a request for physician-assisted death cannot be truly voluntary if the option of proper palliative care is not available to alleviate a person's suffering. In other words, it isn't a genuinely autonomous choice at all if we continue to provide palliative care to such a tiny fraction of Canadians. In fact, if we proceed with this and don't respect conscience for institutions, I fear we'll see the closure of more faith-based palliative care services that aren't willing to provide this.
I wonder if you could comment both on the issue of what dignity means and also on the centrality of palliative care.
Cardinal Thomas Collins:
Okay. Maybe I'll start with the very important point you raise concerning dignity. Everyone may have different opinions or different views on that.
I would say dignity comes from within the person himself or herself. I would think even a person without faith would see that in a purely human way, the dignity of the human person. It doesn't come from the circumstances around them. From the point of view of faith, it comes from the idea that we see a person as a child of God, as someone who has inherent dignity. Every person must be treated with reverence.
Did Jean Paul II have dignity? When he was a 58-year-old pope skiing down mountains, he had dignity. Did he have dignity when he was in the last years of his life when his body was breaking down? I would say he had dignity then and he had dignity at the other times as well. Dignity comes from within the human person. I would say dignity comes with a reverence we give to a person, and that's why we should surround them and care for them. Think of Mother Teresa. The people she served, did they have dignity? Yes, they did, and she tried to help them in their suffering and care. Dignity comes from within. Dignity, I would say, comes from God. What we are doing, and have been doing for hundreds, a couple of thousand, years is surrounding a person, reverencing their dignity. That's why we don't believe it's right to kill them. We think that's just not right. That is not the way to dignity.
On palliative care, I think not only do we need to talk about it but that it needs to be dealt with at the federal, provincial, and municipal levels, and certainly at the private level. I can tell you that in my own diocese—I can't speak for other religious groups—we have various initiatives. Just this afternoon I got a proposal for another palliative care place that we're thinking of putting in the centre of Toronto. We do this. We're on the ground. We're doing it. We're caring. But I do think it would help a lot if this was funded. I mean, what are we spending on in our country? I would think it should be on caring for those who have dignity inherent within them from the first moment of their life to the end of this life at the end of their earthly journey. I think we need to not just talk about it, but to do something about it.
Dr. Tarek Rajji (Chief, Geriatric Psychiatry, Centre for Addiction and Mental Health):
Members of the Special Joint Committee on Physician-Assisted Dying, thank you for the opportunity to appear before you today to share our perspectives on this extremely important topic.
My name is Tarek Rajji. I'm the chief of geriatric psychiatry at the Centre for Addiction and Mental Health, CAMH, and I am joined by my colleague, Kristin Taylor, vice-president of legal services.
CAMH is one of Canada's largest mental health and addictions academic health science centres. We combine clinical care, research, and education to transform the lives of people affected by mental illness or addiction. We have over 500 in-patient beds, 3,000 staff, over 300 physicians, and over 100 scientists. We treat over 30,000 patients each year.
PAD, physician-assisted dying, as it relates to mental illness is an extremely complex topic. The Supreme Court did not explicitly define specific medical conditions that would be eligible for PAD, but ruled that the “competent adult person” must have “a grievous and irremediable medical condition (including an illness, disease, or disability), that causes enduring” physical or psychological “suffering that is intolerable to the individual in the circumstances of his or her condition”. This means that mental illness may be eligible for PAD.
But should mental illness be eligible for PAD? If so, how should we address it within a therapeutic clinical relationship? How do we ensure that safeguards are in place to protect those whose mental illnesses make them vulnerable to suicidal ideation?
We do not have the answers to these questions yet. These are issues that we continue to struggle with at CAMH. We have convened a working group of clinical, legal, ethics, and policy experts from across our organization, who are attempting to answer these questions and determine the impact that PAD will have on our patients, clinicians, and organization. Kristin joins me today as the co-chair of this committee.
What we would like to share with the special joint committee today are two key insights from our expert working group that we hope will assist in developing a federal framework on physician-assisted dying.
Our first insight is, should mental illness be considered irremediable? Mental illness is typically chronic and episodic. Following the natural history of mental illness, some individuals have persistent symptoms, some experience worsening symptoms, and some even recover from illnesses, even illnesses like schizophrenia. To date, we cannot predict who will be on what trajectory. Further, we have some effective treatments for mental illness and some knowledge to guide us with respect to personalizing treatments; however, we are still far from predicting what treatments would work for a particular person.
The symptoms of mental illness that persist, worsen, or remit include thoughts of suicide. However, a minority of patients with mental illness die from suicide. Again, while we have good knowledge about risk factors for suicide and some interventions that have been shown to reduce suicidality, we still cannot predict when a suicide will happen. This natural history is in contrast with terminal illnesses and some chronic physical illnesses, which are irremediable in that a proximal death is an eventual outcome.
Thus, mental illness may be grievous to an individual. Symptoms can cause enduring psychological and sometimes physical suffering. However, suffering should not be equated with irremediableness, and the lack of an inevitable or predictable death by natural history provides us with an opportunity to deliver recovery-based treatment.
A recovery-based approach to mental health care, which we provide at CAMH, focuses on hope and on developing the skills that are needed to live with a mental illness and its symptoms. We do not just focus on treating or curing the illness. Similarly, people with mental illness may be vulnerable to the impact of the social determinants of health. They may live in poverty, have poor housing, and lack social support. These circumstances may exacerbate suffering and a person's perception that their illness is irremediable.
Again, part of recovery-based care is for mental health professionals to work with people to help them cope and address these reversible causes of suffering. Therefore, within a clinical recovery-based environment, there is always the potential for mental illness to be remediable.
I would like to use a clinical example to illustrate the points I've talked about: a 73-year-old woman with a lifelong history of bipolar disorder, recurrent, and a persistent desire to die driven by a sense of futility and of being limited by her illness and the cognitive deficits, the attention problems, and the planning deficits that are due to this illness. The patient was married once and now she has an adult daughter and a granddaughter. She also has a neighbour with whom she has limited contact. Her bipolar illness is responsive to medications. However, despite good response, she has a persistent wish to die.
During her treatment, my discussions with her around death were focused on acknowledging her wish, respecting it, but also confining it. I focused on exploring with her the possibility of strengthening her relationship with her daughter through regular visits and meals together. This evolved to regular babysitting that her daughter and her son-in-law depended on. This new form of her relationship provided her with an unexpected sense of satisfaction and meaningfulness. These new feelings and experiences did not eliminate her wish to die, but ran in parallel and competed with it during her daily life.
We also explored her ability to consolidate her relationship with her neighbour who ended up having a stroke, and the patient became part of his network of caregivers.
This therapeutic work with her took about three years. The lack of inevitable and proximal death allowed this work to happen. Further, throughout the three years, what deterred her from committing suicide was the possibility of pain or a medical sequel if suicide was not successful and the shame she would have left her daughter with.
Would the availability of a painless death option and the sanction by a physician have eliminated the obstacles of pain and shame and interfered with the completion of this therapeutic work?
The second point I want to present to you is there must be safeguards in place to ensure people with mental illness truly have the capacity to consent to PAD.
In addition to the points I made previously about the natural course of the mental illness and its social determinants, individuals with mental illness experience distorted perceptions due to the illness and its consequences.
When a person is experiencing an acute episode of their illness such as a major depressive episode, or an acute psychotic episode, or a manic episode, it's not uncommon for them to have severely distorted beliefs about themselves, the world, and their future. Sometimes the sense of helplessness, and worthlessness, and hopelessness continues even when the symptoms of the mental illness are better controlled.
Thus these distortions raise questions about the capacity to make PAD requests during both the acute and less acute phases of the illness. In addition it is during the phases of relative wellness that recovery-based approaches to care are critical to change these distorted beliefs that have often been reinforced by lifelong experiences with a recurrent mental illness, associated stigma, and sometimes abuse or neglect due to this illness.
Again, I would like to use a clinical example to illustrate these points: a 55-year-old man with a long history of chronic schizophrenia with onset that occurred when he was 18 years old. Even before the full manifestation of the illness, this man was considered as awkward and bizarre at school, bullied by classmates, and was unable to excel in several academic or social activities. He continued to experience some failures since the full break of his first episode, including failure to maintain a job, failure to have a romantic relationship, and a failure to maintain the relationships he had before the illness.
It is not hard to see the lack of capacity when this person is experiencing an acute psychotic episode, but what about when he is not experiencing an acute episode? Wouldn't these repeated failures and maltreatment be contributing to a sense of worthlessness and hopelessness?
This distorted and learned view of self can potentially change in response to a recovery-based treatment and not only treatment that addresses the acute psychosis.
In both examples we recognize there will be some individuals with mental illness who will persistently perceive that they have suffering from an irremediable illness. These individuals may also argue that they are capable of making this decision. We believe that in these situations an objective decision of the irremediable nature of a persons's illness must be made by a board versed in these issues, such as the Consent and Capacity Board in Ontario.
Members of the special joint committee, thank you again for the opportunity to speak with you today. There are no easy answers when looking at PAD and mental illness.
Today I have attempted to lay out the very real challenges and concerns that affect us at CAMH as a recovery-based organization that aims to transform the lives of people with mental illness. We hope that sharing our thoughts and recommendations will assist you as you move forward with your work.
Kristin and I would be happy to take any questions.
Dr. Mary Shariff (Associate Professor of Law and Associate Dean Academic, University of Manitoba, Canadian Paediatric Society):
Thank you for inviting us to speak with you today. I am very grateful for this opportunity.
I am a law professor who has been researching issues around physician-assisted suicide and palliative care since approximately 2008, and I was an expert witness on comparative laws for jurisdictions at past termination-of-life legislation for the Carter case.
In terms of legislative response, one possibility would be to construe Carter, of course, as narrowly as possible, which would be to construe it to the specific facts of the case. But of course you could always use Carter as a legislative entry point to include individuals and medical conditions not deliberated or decided upon by the Supreme Court.
Today I am here to speak to the matter of children, and with respect to children, I would argue that you should not go beyond the Supreme Court's pronouncement.
In termination-of-life legislation there are two main organizing streams when it comes to deciding whose request for physician-assisted dying can be legally granted.
First there are the substantive criteria, which we understand are the patient qualifiers, what criteria qualify a patient's request to be entertained by a physician. Then there are also the procedural due-care criteria, meaning what procedures you put in place to make sure that the patient has actually met the substantive criteria.
As we know, in cracking open the Criminal Code to allow willing physicians to provide termination-of-life services without prosecution, the Supreme Court only expressly identified the substantive criteria, namely, competent adult, grievous and irremediable condition, enduring suffering that is intolerable to the individual, and clear consent to termination of life. The court did not expressly articulate procedural due-care criteria, meaning that it didn't articulate the safeguards to be implemented to make sure the patient satisfies those four to six qualifying criteria.
As we know, the Supreme Court provided the substantive criteria of “adult” but did not define “adult”, but again, if we go back to the facts of the case, the court was making and could only make a pronouncement on those facts. Non-adults were simply not part of the equation.
First, I would argue that it's not arbitrary to exclude non-adults from qualifying criteria in any first iteration of Canadian termination-of-life legislation. Again, there is no evidence before the court on the issue of children or adolescents. But also note the evidentiary finding by the trial judge, as articulated by the Supreme Court, that while there is no clear societal consensus on physician-assisted dying, there is a strong consensus that it would be ethical only with respect to adults who are competent, informed, and grievously and irremediably ill who voluntarily chose it.
Second, there is a massive ethical question as to whether children and adolescents should be able to qualify in the first instance for lethal injection. This ethical question was not considered in Carter, and to the best of my knowledge, it has not been fully considered by Canadians. There is no ethical data on minors to inform the Canadian legal analysis. Dr. Davies will speak more to the issue of data.
Third, the argument is being made that the law has already allowed mature minors to make medical decisions even if doing so would result in their death. But let's think about that a little more closely. In those death cases, the decision is about rejection of treatment whereby if the child rejects treatment, the child runs the risk of dying. This is an entirely different consideration for children than is children being expected to consent to lethal injection.
Fourth, we also see from those cases in the Canadian case law that if the odds of survival are good with treatment, the court will override a minor's refusal. We know that Carter does not use the criteria of terminal illness, so how does one figure out the odds of survival for a child whose medical condition is a mental health issue or other form of disability?
This leads me to my fifth and final point, and then I'll turn it over to Dr. Davies.
Yes, we absolutely have processes that help us to discern a child's capacity and maturity for a particular decision, but the process for determining a minor's capacity does not answer the substantive question. It was more than just an acknowledgement of adults' capacity that actually drove the Carter result.
Dr. Dawn Davies (Chair, Bioethics Committee, Canadian Paediatric Society):
Hi, I'm Dawn Davies. I'm a palliative care physician at the Stollery Children's Hospital in Alberta. I'm here today as a representative of the Canadian Paediatric Society, where I'm the current chair of the bioethics committee.
Thanks for giving the CPS an opportunity to address you. The legislation you are to consider is of particular importance to physicians who care for children and youth as the issues of eligibility and consent are complex. I'll highlight the relevant clinical dimensions of caring for seriously ill children, and how these intersect with the legislation about physician-assisted dying, which I will abbreviate to PAD for the sake of time.
The CPS recommends that the complex matter of assessing a minor's capacity be left to the minor's parents and immediate clinical team. Physicians are able to make this assessment as stated in Carter.
As has always been the case with mature minors, the greater the risk of serious harm or death, the more vigilant health care providers must be in their assessment of one's capacity to make the decision, and to ensure that it is free from duress from parents and other authority figures. It's also important to understand that these assessments are sometimes difficult to make, and that referral to the courts for life-and-death cases is not uncommon.
While the provincial and territorial panel suggests that capacity is more relevant than age, they did not consult with pediatric health care providers, parents, or minors. The CPS strongly recommends that comprehensive consultation must occur with the following groups prior to further legislation that would include children and adolescents: parents of children who are severely disabled or have terminal illness, and those parents who are bereaved after losing children with similar illnesses; relevant pediatric health care professionals; and representatives of major religious and child advocacy groups.
The Belgian law on euthanasia for adults came into force in 2002, and was extended to include children in 2014, but this has been widely criticized for lack of appropriate broad consultation prior to the inclusion of children.
There is also no Canadian pediatric data regarding either requests for a physician-assisted dying for minors, the opinion of Canadian pediatricians about PAD, nor their willingness to participate in assisting death of children specifically.
We must anticipate the source of requests for PAD, and parents of never-competent children deserve special mention. While we understand that proxy decision-makers will not be able to request PAD on behalf of any other person, requests from parents for euthanasia of their terminally ill children are neither new nor exceedingly rare. Decision-making for treatment of never-competent children is based on a best interest standard. It is possible that parents will challenge the courts on the basis that continued life, as experienced by their dying or profoundly disabled child, is not in their child's best interest.
Studies have shown that such requests are more likely if the child has uncontrolled pain. However, palliative care for Canadian children is greatly underserviced, with many community-based health professionals having little to no training in the provision of palliative care to this group. The CPS therefore recommends enhanced pediatric-specific palliative care funded and equipped to care for children and their families in the setting of their choosing, especially their homes. Given the rapid societal shifts since the Carter decision and the short timeline to enact legislation, the CPS strongly enshrines the physician's right to conscientiously object to providing PAD, especially in the case of children and youth.
Imam Sikander Hashmi (Spokesperson, Canadian Council of Imams):
Thank you very much, sir.
Good evening, everyone. My name is Sikander Hashmi. I serve as an imam at the Kanata Muslim Association in Ottawa. I'm also a member of the Council of Imams of Ottawa-Gatineau. This evening I'm here with you as a spokesperson for the Canadian Council of Imams.
In the Islamic faith tradition, neither euthanasia nor assisted suicide are supported or encouraged. However, since that matter has already been decided by the Supreme Court, our concerns regarding the legalization of physician-assisted dying centre around the preservation and the sanctity of life as well as the vulnerability of patients.
Most Canadians would agree that life is sacred and that an effort should be made in most, if not all, circumstances to preserve it. The Quran highlights the importance of saving a life in verse 5:32, that whoever saves a life, it is as if they have saved humanity entirely. We understand that in some cases patients experiencing extreme levels of pain and suffering, and those expecting the same in the future, may desire an end to their life. We empathize with them. As we draw from our faith, we are instructed to pray for them to gain relief from their suffering and to try our best to make them comfortable by providing the best possible care.
Our concern is that the availability of the option to die with the assistance of another individual may, in some cases, be subject to the interests of others rather than the patient, leading to direct or indirect encouragement and promotion of physician-assisted dying. We believe there must be robust safeguards in place to ensure that this option is exercised only by those who voluntarily and independently choose physician-assisted dying after going through an informed decision-making process.
We propose that any such requests be considered and evaluated by an end-of-life team of four members: first, a physician, ideally one who is familiar with the medical history of the patient and is involved in treating the patient; second, a psychiatrist or a psychologist who is able to understand the mental state of the patient and the reasons for their decision; third, a social worker who can inform the patient of the care options available to them and discuss potential impacts of their choices on themselves and on their family members; and finally, a spiritual care provider, representing the faith tradition of the patient, who can offer spiritual counsel and advice if the patient desires their services.
This team shall ensure that all care options available to the patient have been clearly explained without bias; that the patient has made the decision voluntarily and without duress or encouragement from another party; that the patient understands the impact of their decision; and that the patient's immediate family members are informed, if possible, about this process, and counselling is offered to them unless explicitly requested otherwise by the patient.
Furthermore, we recommend that paragraph 241(a) of the Criminal Code of Canada be amended to ensure that encouragement to commit suicide, including physician-assisted death, remains a criminal offence. In our view, a patient should be able to seek the assistance of a physician to end their life only if they meet all of the following criteria: they're above the age of majority in their jurisdiction; they're capable for personal care; they're suffering from a grievous and irremediable medical condition; they're in an advanced state of irreversible decline and capability; and they experience regular and unbearable physical suffering that cannot be relieved in a manner the patient deems tolerable.
The patient should be required to sign a request form, or in the case of a disability, express their wish clearly in unambiguous terms through any other means. The process and procedures could be as follows:
The patient would inform the care provider of their request or their desire for care or for physician-assisted death. The end-of-life care team would visit the patient to assess eligibility and inform them about available choices. The team would contact family members, inform them about the request, and offer them support, unless requested otherwise by the patient. The team would make a follow-up visit to the patient. If the patient chooses physician-assisted dying, the team would have them sign appropriate forms. The request would be submitted to the health care provider. The health care provider would arrange for the time and location and for the physician who is willing to assist the patient in dying. Details of this would be shared with immediate family members, unless requested otherwise by the patient. Before the procedure, the end-of-life care team would once again confirm the decision with the patient if the patient is still able to communicate. If the response is in the affirmative, the physician would assist the patient in ending their life and the death would be reported to a central federal registry.
Physicians and faith-based care facilities should not be compelled, in our view, to perform this procedure if their conscience, faith, and personal values do not allow for the taking of life.
We would like to highlight the statement of the College of Family Physicians of Canada on issues related to end-of-life care, which says:
||As a matter of social justice, all Canadians...should have access to palliative care that meets national standards. Palliative care must be available in all health care settings. In addition, a variety of settings must be available for end-of-life care.
We also echo their call for sufficient funding to ensure that all Canadians have access to palliative care that meets national standards and the needs of each community.
The teachings of our faith lead us to believe that every disease has a cure. We just have to work to find it. Therefore, we recommend placing a greater emphasis on medical research towards finding cures and better pain management methods, particularly through increased funding and reversal of cuts to programs such as the combined MD/Ph.D. program for which funding was withdrawn in June 2015.
In conclusion, we would like to reiterate that neither euthanasia nor assisted suicide are supported or encouraged in the Islamic faith tradition. We believe there is a need and an opportunity to improve quality of life for patients and to protect the vulnerable. We hope our suggestions are useful in developing legislation that is balanced and compassionate.
Thank you very much.
Hon. Serge Joyal (Senator, Quebec (Kennebec), Lib.):
Mr. Chair, I would like to address my question to the Canadian Paediatric Society, and in particular to Ms. Mary Shariff. My question deals with the status of Canadian law in relation to minors in reference to health services. It might be easier for you to comment.
I would like to refer you to a decision of the Supreme Court in 2009. It's a majority Supreme Court decision that you probably know of, A.C. v. Manitoba (Director of Child and Family Services), whereby the Attorney General of Manitoba and the ones in British Columbia and Alberta intervened in the case. I would like to quote paragraph 46 of the decision, wherein the court stated the following:
||...common law has more recently abandoned the assumption that all minors lack decisional capacity and replaced it with a general recognition that children are entitled to a degree of decision-making autonomy that is reflective of their evolving intelligence and understanding.
In other words, they have the right to make those decisions. It continues:
||...the right to make those decisions varies in accordance with the young person’s level of maturity, with the degree to which maturity is scrutinized intensifying in accordance with the severity of the potential consequences of the treatment or of its refusal.
In other words, it's not a blanket exclusion. They say that as much importance as the decision has for the young person making it, so much more demanding is the scrutinizing of the various sets of criteria that the court has stated at paragraph 96. There are seven of them.
It seems to me that we cannot exclude this, as you suggested, and have a blanket decision that all youngsters below 18 would not be competent. I think they would be competent, but the test of analyzing their competency would be more stringent, because for the decision and the impact of the decision, of course, we know it's about life, and life especially is one of the seven criteria that the court established in that decision.
It seems to me that if we are to legislate in relation to age—or I should say generally the criteria of accessibility—I think we have to take into account that decision of the Supreme Court, which is very recent. It was in 2009.
Mr. Harold Albrecht:
I guess it's concerning for me as a committee member to realize that, especially when many times during these consultations we have heard the phrase, “Carter is a floor, not a ceiling”, you as a pediatric society are recommending that we not go beyond Carter. I think that's very informative.
My last question is for the Centre for Addiction and Mental Health.
You indicated that you provide care for up to 30,000 patients who are dealing with various mental health challenges. You also indicated that it's difficult to say conclusively whether or not these conditions may or may not be irremediable. You commented on chronic and episodic features of mental illness, and even talked about how schizophrenia could in some cases be overcome to the extent that it may not be cured but that there are strong coping mechanisms.
I was so encouraged to hear you say in your testimony that you focus on hope, because I think that one of the conditions of what this committee is charged with is providing that hope. Part of providing that hope, in my opinion, is being sure that we are not opening the door for those who may be vulnerable, especially those with mental health challenges.
Because of the episodic nature and the potential for changing minds, and so on, can you assure us that we can put adequate safeguards in place to be sure that even 1% of that 30,000 is not allowed to end their life prematurely, unintentionally, because of an episodic issue with depression?
We were informed earlier by some of our witnesses that the concept of safeguards might actually be an illusion. I just wonder if you could comment as to whether or not we can be sure, as committee members, that we can, in fact, put adequate safeguards in place.
Dr. Mary Shariff:
I used that language because Carter can be construed very narrowly. It seems to me there is a pre-emptive discussion for including other individuals, such as children and minors, and other types of conditions, for example, through the advance directive, all at this time pre-emptively, in anticipation that there might be a charter challenge.
We know there could be a charter challenge simply because of the nature of the arguments that were made in Carter. Many arguments can be made on the section 7 right-to-life argument that unless they have this down the road, they will take their lives sooner. Many things can fall into that.
Because there wasn't any data in the Carter case with respect to minors, for example, and there was no discussion on advance directives.... I know there's this idea floating around about the floor and ceiling. I'm not particularly fond of that analogy, metaphor, or whatever you would call it. I think that we need data. We need to understand.
Even with Belgium there's controversy, but we're looking at something similar to a Belgian scheme. I think right from the beginning of the trial decision we were looking at a Dutch-Belgian scheme in Canada. There's no secret to that.
In Belgium when they looked, for example, at children, they put their law in place in 2002 and didn't start thinking about minors, other than emancipated minors, until 12 years later, so they had time to actually gather data and look at the evidence. That data around minors is simply not before the Supreme Court.
The decisions and the arguments around sections 7 and 15 are based on experiences with respect to adults who are requesting a particular service, a termination-of-life service, and we don't know how the essence of those arguments is transferrable to minor children. It's as simple as that.
When I say “first iteration”, I'm not sure.... If the argument is that we can move forward with this because there's only a handful of people that it involves, let's be prudent and not rush to put it all in. Let's gather some information. We're Canada. We're not the Netherlands. We're not Belgium.