Consultations on Physician-Assisted Dying - Summary of Results and Key Findings
Part III – A Report on the Panel's Consultations
Chaper 6. Forms of Assisted Dying and Terminology
"Physician-assisted dying" and "physician-assisted death" are terms the Supreme Court of Canada adopted in Carter v. Canada to refer to the act of a physician assisting a person to end their life at that person's request. These are therefore the terms that the Panel has adopted in this report. As part of our mandate, the Panel was tasked with collecting input on two types of physician-assisted death: voluntary euthanasia and assisted suicide. In voluntary euthanasia, the physician takes the final act that will end the individual's life. Often, this act is the intravenous administration of a lethal substance. In assisted suicide, an individual performs the final act to end their life. This often involves ingesting a lethal substance prescribed or provided by the physician. In both types of physician-assisted dying, the act is voluntary and requested by the individual; the only distinction is the actual role the physician plays.
Some jurisdictions expressly allow one or both of these forms of assisted dying. The Netherlands and Luxembourg allow both voluntary euthanasia and assisted suicide,Footnote109 while the American states of Oregon, Washington, Vermont, Montana and California allow only physician-assisted suicide.Footnote110 The province of Québec, in its Act respecting end-of-life care, has defined "medical aid in dying" as
"care consisting in the administration by a physician of medications or substances to an end-of-life patient, at the patient's request, in order to relieve their suffering by hastening death."Footnote111
While the Supreme Court's decision in Carter did not discuss terminology or distinguish between voluntary euthanasia and assisted suicide, groups appearing before the Panel have raised questions about the use of specific terminology, and have voiced concerns with regard to the practice of each method.
A. Voluntary Euthanasia and Physician-Assisted Suicide: Terminology
The Panel heard different views on the issue of using the specific terms "voluntary euthanasia" and "assisted suicide," as opposed to the more general terminology of "physician-assisted death" and "physician-assisted dying." Dr. Brian Mishara, a Canadian psychologist and suicide researcher, and the Canadian Federation of Catholic Physicians' Societies noted that the distinction is important and the use of precise language is essential to facilitate clear thinking about the issue, avoid confusion about which practices are now permitted and ensure that individuals and physicians have a shared understanding of the method contemplated.
Some groups, such as the Physicians' Alliance against Euthanasia and the Protection of Conscience Project, were of the view that using terms other than "euthanasia" and "suicide" would only serve to obfuscate the issue and would impair the ability of those who are unable to participate in this practice for reasons of conscience to fully articulate their reasoning or to specify which procedures they might be able to perform. Dr. Georges L'Espérance, President of the Association québécoise pour le droit de mourir dans la dignité, indicated that even if the term "euthanasia" has a particularly negative connotation because of historical events of the 20th century, it is etymologically well defined to mean a good death administered by a physician. Consequently, he argued, the term should be used.
The College of Family Physicians of Canada told the Panel that the terms "medical aid in dying" and "physician-assisted dying" are too general to be used in the clinical setting, potentially leading to confusion and misunderstanding among physicians and individuals. The College argued that voluntary euthanasia and physician-assisted suicide are different, psychologically and ethically, since the former
"engages physicians as agents who intentionally end the life of their patients," whereas the latter does not. The College of Family Physicians of Canada therefore encourages the use of the specific terms voluntary euthanasia and assisted suicide.
In a written submission to the Panel, the ARCH Disability Law Centre explored at some length the absence of consensus within disability communities about appropriate terminology. ARCH observed that some of its community partners "appreciated the amount of agency and individual control that the term 'suicide' implies," while others expressed concern about the stigmatizing implications of this highly charged word. Despite these divisions, ARCH noted that most of its partners found "euthanasia" to be a term "particularly abhorrent to individuals with a disability."
The Panel was reminded numerous times throughout the consultation that the phrases "voluntary euthanasia" and "assisted suicide" are emotionally charged and carry considerable stigma. Groups that were of this view advised that it would be preferable to use neutral language when discussing these matters with patients, such as "physician-assisted dying," to avoid the negative connotations associated with the terminology of euthanasia and suicide.Footnote112 The Panel heard from the Canadian Nurses Association that using such language could deter some individuals from initiating meaningful discussions on the topic with their health care providers; they may fear being judged, or believe that they are doing something wrong, thus jeopardizing honest and open conversation.
Since suicide is a source of deep and continuing trauma in many Indigenous communities, using the term "physician-assisted suicide" raised concerns for Melanie MacKinnon, an academic and Indigenous health expert at the University of Manitoba. The Indigenous Physicians Society of Canada indicated that explicitly associating physicians with assisted death could fuel apprehension that individuals must eventually engage in this discussion with their physician as a matter of course. Dr. Alika Lafontaine, of the Indigenous Physicians Society of Canada, noted that this may create a further barrier between them and their health care practitioner. Dr. Lafontaine reflected that
"changing the language ... may be helpful in having patients willing to have these discussions and not afraid that these discussions will be forced on them."
The Panel heard various suggestions for appropriate terminology. In an online submission, an ethicist from Toronto suggested "legal requested death" to distinguish what he called an "arranged death" from suicide as it is commonly understood. In his view, a request for physician-assisted death is made to curtail the dying process, which is qualitatively different from suicide. He suggested the term "legal" to indicate that not all requests will be granted, since individuals must meet eligibility criteria.
The Canadian Society of Palliative Care Physicians proposed terminology that would make a clear distinction between palliative care and practices that hasten or bring about death, noting that the terms "physician-assisted dying" and "physician-assisted death" are ambiguous and could potentially undermine the practice of palliative medicine. The risk this term could pose to palliative care, the Society argued, is to conflate actively ending an individual's life with supporting an individual through a natural death process, which is the defining feature of palliative care. The Society proposed that the central concept of physician-assisted dying is that of accelerating death. It therefore recommended the use of "hastened death" to replace "assisted dying," combined with a specification of who administers the procedure, such as "patient-administered" or "physician-administered."
Another option the Panel heard is to combine the need for specificity with the benefit of avoiding emotionally charged language by qualifying the term "physician-assisted dying" with reference to the physician's role. Dr. Douglas Grant, President of the Federation of Medical Regulatory Authorities of Canada and Registrar for the College of Physicians and Surgeons of Nova Scotia, used the phrase "physician-administered" and "physician-prescribed" assistance in dying to distinguish between the two methods.
B. Other Observations on Terminology
1. Death or Dying
Some groups have distinguished between physician-assisted death and physician-assisted dying, noting that health care providers–and particularly palliative care physicians–already assist people with the process of dying by providing care as someone nears the end of life.Footnote113 According to the Canadian Nurses Association, it is worth noting the difference between this support and assisting death in scenarios such as the one envisioned in Carter; as such, assisted death was their preferred term. In an online submission to the Panel, a physician from Brantford, Ontario, explained that terms like "physician-assisted death" indicate an event rather than a process, and suggested that this is a helpful distinction where the intended purpose is to bring the dying process to an end.
2. Withholding and Withdrawing Treatment
Some experts, such as Prof. Isabelle Marcoux and Dr. Brian Mishara, also commented on the confusion that exists among the general public and the health care profession between what is already legal and what will become legal once the Supreme Court's decision comes into effect. Specifically, the College of Family Physicians of Canada told the Panel that withholding and withdrawing treatment are different from physician-assisted dying. Indeed, individuals have had a longstanding right to refuse treatment or to withdraw treatment, even if to do so would end their lives.
In a meeting with three bioethicist colleagues, the Panel was presented with slightly different opinions on whether there was a moral difference between withholding treatment, withdrawing current treatment and physician-assisted death. Joshua Landry, of the Champlain Centre for Health Care Ethics at the Ottawa Hospital, opined that there was no difference, while Michael Kekewich, of the same group, thought that reasonable people can disagree on this non-critical issue. The third bioethicist felt that there was a difference between the three concepts, at least from a psychological perspective. Whereas withholding treatment, as Dr. Thomas Foreman, Director of the Champlain Centre for Health Care Ethics at the Ottawa Hospital suggested, is
"not intervening to stop [someone from] dying," withdrawing treatment can be seen as
"removing the barrier to [allow] the natural process to occur," and physician-assisted dying is actively
"intervening to impact the natural process," to "cause an outcome." Withdrawing and withholding treatment are legally distinct from physician-assisted dying and are unchanged by Carter.
Some stakeholders, such as Dr. Patrick Vinay of the Physicians' Alliance against Euthanasia, noted that it may be inappropriate or at least inexact to use the term "consent" in the context of physician-assisted dying. Consent in the medical realm denotes agreeing to a procedure or treatment that is proposed to an individual by a physician. Professor Isabelle Marcoux agreed that physician-assisted dying should not be proposed or offered to the individual, but should instead arise directly from the individual. As such, the question should not be one of "consenting" to a treatment that is being offered or recommended, but instead ensuring that the person's request is truly voluntary and well informed.
4. End-of-life Care and Palliative Care
Dying with Dignity Canada commented on the terms "end-of-life care" and "palliative care," indicating that the two should not be treated as synonymous. According to Dying with Dignity Canada, palliative care can be defined as excluding physician-assisted dying if the health care professionals who provide it choose to define it this way, but end-of-life care encompasses both palliative care and physician-assisted dying. This is consistent with Québec's Act respecting end-of-life care, which considers medical aid in dying a form of end-of-life care.
Presenting a different perspective, Dr. Susan MacDonald, President of the Canadian Society of Palliative Care Physicians characterized end-of-life care as part of palliative care:
We've looked at the definition of palliative care and that has changed. When I came into the field 20 years ago it was mostly end-of-life care because that's where our skillset was. Over the past 20 years we have tremendous gains in symptom management. We often are involved with patients for years on end. The dying part is a small piece of the process.
Physician-assisted dying is also seen as being different from palliative sedation, which is intended to ensure that people are comfortable until they die from their disease.Footnote114 Palliative sedation is a proportionate response, with dosage adjustments achieving varying effects, depending on the person's circumstances and needs, from calming to full sleep. According to Dr. Ed Dubland, from a network of British Columbia physicians that met with the Panel, palliative sedation consists of suspending the consciousness of people who suffer, allowing natural death to occur without conscious distress. The Panel heard from the Association québécoise pour le droit de mourir dans la dignité that these practices do not conflict with one another.
5. French Terminology for Physician-Assisted Dying
Finally, Professor Marcoux cautioned the Panel on a translation note. The French version of the Carter decision uses the term "aide médicale à mourir" as a translation of "physician-assisted dying." Professor Marcoux observed that "aide médicale à mourir" in the Québec legislation has a very technical meaning and is limited only to physicians administering the lethal substance at the request of the individual, and does not contemplate physician-assisted suicide.
C. Methods of Physician-Assisted Dying
The Panel also heard different points of view on the relative advantages and disadvantages of the two forms of physician-assisted dying it was asked to consider: voluntary euthanasia and assisted suicide.
Some groups appearing before the Panel commented on the prevalence of physician-assisted deaths depending on method. In Europe, where data are available for both voluntary euthanasia and assisted suicide, 2.8 to 4.6% of all deaths occur as a result of euthanasia, while 0.05% to 0.1% of all deaths are due to assisted suicide. In Oregon, where only assisted suicide is legal, approximately 0.3% of all deaths occur by assisted suicide.Footnote115 There is of course a significant difference in eligibility criteria between Europe and the U.S.; in the U.S., only someone with a terminal illness who is expected to die in less than six months may access assisted dying.
Professor Isabelle Marcoux noted that data from the European countries suggest that individuals who seek assisted dying prefer voluntary euthanasia to assisted suicide when given the choice. Several groups that appeared before the Panel referred to this finding. She added that while people who seek physician-assisted dying may prefer voluntary euthanasia, physicians themselves tend to be more comfortable with assisted suicide.
In an exchange with the Panel, Dr. Keith Wilson commented on results from a National Palliative Care Survey which revealed that within a sample of terminally ill people, a third of respondents considered that both methods were equally acceptable, while 25% found that both were equally unacceptable. Over 21% of respondents found voluntary euthanasia to be more acceptable, while 9% found assisted suicide to be the more acceptable method.
Some groups shared their view that there is no ethical difference between voluntary euthanasia and assisted suicide; they are two different ways of operationalizing a person's wishes. The Canadian HIV/AIDS Legal Network noted that in both cases, what is critically important is that consent be free, voluntary and informed. It argued that any distinction drawn between the two methods would be artificial and unhelpful, and would risk creating different regimes for the manner in which people exercise their autonomy at the end of life.
1. Allowing only Physician-Assisted Suicide
The Physicians' Alliance against Euthanasia and the Euthanasia Prevention Coalition were in favour of allowing only assisted suicide. The Panel heard from Dr. Brian Mishara that in the context of assisted suicide, individuals' ambivalence about their request can operate more freely, meaning that they might be more likely to renounce their wish to die. When another person is involved, as voluntary euthanasia requires, Professor Isabelle Marcoux suggested that ambivalence may be constrained. The Panel heard that there is a risk that individuals may feel some degree of social pressure to proceed with voluntary euthanasia if, for example, the procedure is scheduled to happen at a specific date and time, knowing that the administering physician has other scheduled engagements, or even that loved ones are present and are expecting that the procedure will happen.Footnote116 Professor Marcoux noted that allowing only assisted suicide could help ensure that the request to die is truly voluntary, since the final act causing death would belong entirely to the individual seeking death.
Similarly, in a submission to the Panel, Professor Raphael Cohen-Almagor from the University of Hull in the United Kingdom argued that "[i]n ending life, the final control mechanism should be with the patient. Thus physician-assisted suicide is preferred to euthanasia in order to lower the possibility of abuse and of ending the lives of patients without their consent and against their wishes."
The Council of Canadians with Disabilities also recommended restricting the new scheme to assisted suicide. However, when asked to elaborate, the Council's objections pointed to the dangers of unrequested lethal injections, decided by individuals other than the person whose death is contemplated, and done without their knowledge or consent–something which will continue to be a criminal offence, since the Supreme Court in Carter emphasised that only an individual who "clearly consents" may access physician-assisted death.
The Canadian Society of Palliative Care Physicians supported the Oregon model, where only assisted suicide is permitted, over the Québec model, where only medical aid in dying where a physician administers the lethal substance is allowed. The Society noted that some physicians are uncomfortable serving as the immediate agent of death.
Dr. Brian Mishara noted that in Oregon, where only assisted suicide is legal, approximately 37% of individuals who receive a prescription for a lethal dose of medication do not take it. He observed that few individuals who request euthanasia in the countries where it is legal change their mind. He felt that this ambivalence was a key determinant of why death from assisted suicide was less prevalent than death resulting from euthanasia, and advocated for the former over the latter.
2. Risks Associated with Physician-Assisted Suicide
Professor Isabelle Marcoux highlighted that there may be potential medical complications if a person self-administers lethal medication without a physician present. Euthanasia Prevention Coalition raised the risk of coercion by family members if the medication is taken at home, without professional supervision, as well as the risks associated with having a lethal dose of medication in a home setting. The Coalition suggested that a framework for assisted suicide should not allow individuals to take lethal medication home with them, but instead provide the medication only when they are prepared to take it. They suggested that this would eliminate the possibility of lethal medication not being returned to a pharmacy if the individual dies from other causes or chooses not to ingest the medication.
Dr. Georges L'Espérance, President of the Association québécoise pour le droit de mourir dans la dignité told the Panel that permitting only assisted suicide limits access only to those who are physically capable of self-administering medication. This poses a risk of discriminating against those who are physically incapable of certain voluntary movements, including swallowing.
The Collège des médecins du Québec indicated that it was concerned about people being sent home alone to take lethal medication. Under Québec's law, assisted suicide is not permitted. The Collège noted that in rare cases where the medication fails to cause death, there can be serious complications. The Collège saw relying exclusively on medical aid in dying as a way to curb or eliminate this risk by leaving the procedure strictly in the hands of the physician. Mr. Jean-Pierre Ménard, Chair of Québec's committee of legal experts that was tasked with recommending legislative options for implementing medical aid in dying in Québec, indicated that allowing only medical aid in dying was a way to restrict the practice to the medical world.
3. A Regime with both Physician-Assisted Suicide and Voluntary Euthanasia
The College of Physicians and Surgeons of Ontario emphasized the notion of access and patient preference, and indicated that it is preparing guidelines that address both voluntary euthanasia and assisted suicide. The College of Physicians and Surgeons of Nova Scotia considered that the language of the Carter decision clearly indicates that both assisted suicide and voluntary euthanasia must be permitted.
The College of Physicians and Surgeons of Saskatchewan suggested that, if the individual requests it, a physician should be present when the medication is taken in cases of assisted suicide to ensure there are no complications. Others indicated that requiring a physician's presence in all cases may be a problem for access due to physicians' busy schedules. Further, Dr. Brian Mishara advised that he would consider it harmful, in the case of assisted suicide, to require that a physician be present at the time of self-administration. According to him, the presence of another person may hinder the expression of ambivalence.
Dr. Douglas Grant, President of the Federation of Medical Regulatory Authorities of Canada and Registrar of the College of Physicians and Surgeons of Nova Scotia, noted that if both voluntary euthanasia and assisted suicide are contemplated, the timing of the evaluation of capacity would be crucial. He observed that the prescribing physician would evaluate capacity at the time the prescription was made out. An individual might then bring the medication home, and it is possible that the individual could, because of a deteriorating condition, no longer have the capacity to consent to medical treatment. Thus, the individual might no longer meet the requirements set out in Carter.
A representative of the Protection of Conscience Project noted that a physician willing to provide assisted suicide should also be willing to provide voluntary euthanasia, in the event that complications arise during the assisted suicide and the physician's involvement is necessary to complete the death.
Where it is necessary to illustrate the differences between assisted suicide and voluntary euthanasia in some instances of the report, or where necessary to capture information provided to the Panel during consultations, the Panel will use such terminology for clarity. The Panel remains mindful of the comments it heard in support of, and in opposition to, these terms.
The Panel also proceeds with the understanding that both methods of physician-assisted death are contemplated by the Supreme Court in Carter, and therefore that both may be among of the options available to Canadians suffering from grievous and irremediable medical conditions that cause them enduring suffering.
Chapter 7. Eligibility Criteria
The Supreme Court of Canada held in Carter that the Criminal Code prohibition on assisted dying violates the rights to life, liberty and security of the person of individuals who meet this profile:
a competent adult person who (1) clearly consents to the termination of life; and (2) has a grievous and irremediable medical condition (including an illness, disease or disability) that causes enduring suffering that is intolerable to the individual in the circumstances of his or her condition.Footnote117
For any person to access physician-assisted dying once the Court's declaration of invalidity comes into force, each of the elements in the above profile must be met.
If Parliament and the provincial and territorial legislatures decline to respond in any formal way to Carter, the decision itself will stand as the law on physician-assisted dying. Alternatively, legislators may choose to specify in legislation who may access physician-assisted dying and under which conditions, pursuant to the Carter decision.
Professor Jocelyn Downie, a heath lawyer and academic, has characterized the Carter decision as "a floor and not a ceiling." This means that although the Supreme Court set out the basic requirements to ensure that an exemption to the current prohibition on assisted dying does not violate the Charter rights of eligible individuals seeking assisted death, Parliament and the legislatures would be free to consider issues beyond those addressed in Carter. Legislators could choose to expand the scope of physician-assisted dying by permitting access for individuals not contemplated in Carter, as one example, incompetent individuals who, while they were competent, requested physician-assisted dying through an advance directive. They could also choose to expand the exemption beyond applying only to physicians to other health care professionals, such as nurse practitioners, as the Canadian Nurses Association had begun to consider.
In seeking to add clarity to our collective understanding of who is included in the profile of a person who may access an assisted death, legislators may choose to define some of the terms and phrases which are central to the Court's declaration. For example, they may wish to address any of the following questions:
- Who is an adult?
- Who is competent for the purposes of a request for assisted death?
- What does "grievous and irremediable" mean, in the context of a request for assisted death?
- What is meant by "enduring suffering" in the context of a request for assisted death?
Any legislation that answers these questions by introducing additional criteria could, of course, be subject to Charter challenges. The Court has held clearly that a regulatory system for assisted dying must not deprive people of their rights to life, liberty and security of the person, except in accordance with the principles of fundamental justice.
Eligibility criteria necessarily include some and exclude others. The Panel heard from a variety of sources, including Professor Downie and David Baker, a disability rights lawyer in private practice who has drafted model legislation in response to Carter, that whatever law is in place, it will likely be subject to Charter challenges by excluded individuals. It will therefore be incumbent on legislators to consider carefully which eligibility criteria are implemented to reduce the uncertainty that could result from repeated litigation.
This chapter considers the eligibility criteria raised in the Panel's meetings with individual experts, its study of other permissive jurisdictions and its direct consultations with stakeholders. Specifically, this chapter addresses age, residency, medical condition, enduring suffering, capacity to consent to medical treatment, and the voluntariness of requests.
The Supreme Court held that eligible adults must be able to access physician-assisted dying. In Canada, the age of majority is determined provincially, and the provinces have not adopted a uniform age at which an individual is considered an adult for legal purposes. If access to physician-assisted dying is determined according to provincial age-of-majority legislation, some provinces and territories would allow access at 18 years, while others would allow access at 19 years.Footnote118
Some groups appearing before the Panel, for example the Evangelical Fellowship of Canada, an intervener in Carter, suggested that the provincial age of majority should be the age at which individuals may access physician-assisted dying. Many advocated for access starting consistently across the country at the age of 18. It may be worth noting that for the purposes of criminal law, and other federal law, such as federal electoral law, individuals are considered adults at the age of 18.
1. Beyond the Age of Majority
The majority of groups that addressed the age of eligibility with the Panel emphasized that the Supreme Court held that eligible adults may access physician-assisted dying and therefore recommended either adopting the age of majority in each province or setting the standard at 18 years. Some submissions the Panel received, however, recommended a higher age threshold for life-ending decisions. For example, a physician in Brantford, Ontario, who made a written submission to the Panel, recommended that
"[t]he person requesting death must be an adult, over age 25 years (since brain and impulse control [are] still maturing to that age)." The Canadian Hospice Palliative Care Association recommended an age of eligibility of 21 years, and called for
"careful precautions... with those in young adulthood." As will be discussed below, the Panel heard the argument that choosing any specific age for access could be seen as arbitrary. The Panel knows of no examples in federal or provincial/territorial law in Canada that establish age thresholds beyond the age of 19.
2. Mature Minors
Neither the trial judge in Carter nor the Supreme Court addressed the issue of mature minors because the issue was not before them and so no evidence was presented to the courts on this topic. "Mature minor" is a legal term that refers to young people below the age of majority who are deemed competent to make their own medical decisions. The Supreme Court has held that
"children are entitled to a degree of decision-making autonomy that is reflective of their evolving intelligence and understanding."Footnote119
Two legal issues the Panel heard regarding mature minors focused on the status of existing legislation on consent to health care and the equality provisions of section 15 of the Canadian Charter of Rights and Freedoms. Specifically, the College of Physicians and Surgeons of British Columbia noted that several provinces have enacted legislation that allows mature minors to make decisions about their medical treatment, and that excluding minors might be inconsistent with these Acts. Further, Professor Jocelyn Downie noted that if access is granted only to adults, a mature minor might have a sound claim under the equality provisions of section 15 of the Charter to challenge the law as discriminatory on the basis of age.
Medical ethicists who appeared before the Panel also addressed the issue of access for minors. Dr. Thomas Foreman, Joshua Landry and Michael Kekewich of the Champlain Centre for Health Care Ethics with the Ottawa Hospital argued that any age-based criterion would be arbitrary. They recommended instead an approach similar to Ontario's Health Care Consent Act,Footnote120 which does not include age as a criterion, but instead relies exclusively on decision-making capacity. They noted that the age of majority is currently used as a rough measure of decision-making capacity and argued that instead of relying on an approximate measure of capacity, eligibility should be based on actual capacity.
In a comprehensive submission to the Panel, Professor Wayne Sumner from the University of Toronto outlined the following proposal with regard to physician-assisted dying for persons between the ages of 12 and 18:
The Court did not restrict eligibility for [physician-assisted dying] to competent adults only and there is no justification for doing so. Some provision must also be made for decision-making by 'mature minors' (between the ages of twelve and eighteen). In this case, however, it may be best to reverse the presumption of capacity, so that adolescents will need to demonstrate that they have the maturity to handle a decision of this magnitude. If so, then the decision should be left in their hands, though (especially in the case of younger adolescents) consultation with parents or legal guardians may be mandated; the rule of thumb should be that if a minor is deemed to be competent to refuse life-sustaining treatment then he or she is also competent to request life-shortening treatment.
In the Netherlands and Belgium, minors have limited access to assisted dying. In the Netherlands, young people between the ages of 16 and 18 who
"may be deemed to have a reasonable understanding of [their] interests" and meet the adult criteria may access assisted death as long as their parents have been informed.Footnote121 Individuals between the ages of 12 and 16 who
"may be deemed to have a reasonable understanding of [their] interests" and meet the adult criteria may access assisted death with their parents' consent. In Belgium, emancipated minors who meet the adult criteria have been able to access assisted dying since permissive legislation was first enacted in 2002.Footnote122 In 2014, the Belgian law was amended to allow access to assisted death for minors of any age with "the capacity for discernment" who have a condition "that will result in death in the short term," and meet the adult criteria.Footnote123
Few individuals or groups to appear before the Panel specifically advanced arguments regarding access for mature minors, perhaps understandably, since the issue was not raised in Carter. The Panel did not actively seek out expert opinion or perspectives on this issue, nor did it speak with professionals in fields focused on child and adolescent-related issues (e.g. pediatrics or child and adolescent psychology).
Of the few submissions that address this issue, one from a network of British Columbia physicians argued that mature minors might be more subject to coercion than adults. Other groups' choice to explicitly stress access for competent adults in their submissions to the Panel may have been an implicit rejection of the idea of access for children. The Canadian Civil Liberties Association and the HIV/AIDS Legal Network explicitly stated that they did not see any principled reason to deny mature minors assistance in dying should they meet the appropriate criteria and that such a denial could threaten the personal autonomy of minors.
The College of Physicians and Surgeons of British Columbia observed that their province has an Infants Act,Footnote124 which allows minors to make medical decisions for themselves. The College saw the Act as being in conflict with the Carter age criterion, and suggested that the Act and other provincial health care consent Acts might need to be amended to address inconsistencies.
Of those who responded to the Panel's Issue Book, when presented with a scenario of a request for physician-assisted death by a terminally ill adult, the majority agreed or strongly agreed that physician-assisted death should be available. When the scenario presented a request from a terminally ill 16-year-old, however, there was much less support.
Access for mature minors was perhaps one of the most emotionally charged questions the Panel encountered in its investigations of assisted dying. No one who appeared before the Panel in Canada openly advocated children's access, and although there was more openness to the idea in the Netherlands and Belgium, the Panel heard that the practice remains controversial and is extremely rare in those countries.
With one exception, every jurisdiction in which assisted dying is practiced has a residency requirement such that only residents of that jurisdiction may access assisted dying. In some jurisdictions, such as Oregon, residency is assessed by the physician. There, physicians may consider documents demonstrating a person's residency, such as their driver's licence, voter registration or state tax return.Footnote125 In Québec, residency is ensured by requiring that only those who are "insured persons" within the meaning of Québec's Health Insurance Act may receive medical aid in dying.Footnote126 For most individuals, qualifying as an "insured person" means having lived in Québec for at least three months and having a Québec health insurance card.Footnote127
There has been considerable media coverage of Canadians and other foreign nationals travelling to Switzerland to obtain an assisted death. Switzerland prohibits assisted suicide only for selfish motives,Footnote128 and six private organizations provide assistance to people who meet the individual organizations' criteria. Three of these six organizations make their services available to non-residents.
The Panel received little input on residency requirements from experts or stakeholders. One exception was the Council of Canadians with Disabilities, which called for a residency requirement of one year in its submission to the Panel. A one-year residency requirement was also suggested in proposed legislation tabled in September 2015 in the United Kingdom.Footnote129 Although a one-year residency requirement is not without precedent in Canadian law, it is not a standard commonly used in health law. A more common standard is three months–the length of time included in the definition of "insured person" in the Canada Health Act.Footnote130
The issue of residency was also raised in discussions with the provincial and territorial physicians' regulatory bodies. These bodies are the independent provincial or territorial associations (most of which are called colleges or colleges of physicians and surgeons) that regulate the practice of medicine in their respective jurisdictions. The Panel met with nearly all of these associations, along with their national association, the Federation of Medical Regulatory Associations of Canada.
The colleges addressed the issue of residency with the Panel, but they presented divergent views. These ranged from concrete plans to develop a residency requirement to an expressed openness to providing physician-assisted dying to eligible international visitors. If this issue is to be determined by the regulatory bodies, there may be some variation across the country in terms of access for non-residents.
C. Grievous and Irremediable Medical Condition
All jurisdictions that regulate assisted dying through legislation have some form of medical eligibility criteria. The definitions of these criteria vary considerably. For example, in the four U.S. states with legislation permitting assisted death, the person making the request must have an incurable disease and be expected to die within six months. In Québec, the person must be at the end of life in an advanced state of irreversible decline in capability. In the Netherlands, the person must have unbearable suffering with no prospect of improvement and no reasonable alternative in light of their situation.
What is declared in the Carter decision is that the person must have a grievous and irremediable condition that causes enduring suffering that is intolerable to that person in their circumstances. The Court specified that a grievous and irremediable condition includes illness, disease or disability. The Court's declaration did not indicate that the person must be at the end of life, have a terminal diagnosis or be at an advanced stage of decline.
1. Defining (Or Not Defining) "Grievous" and "Irremediable"
Perhaps not surprisingly given the importance of the terms "grievous and irremediable" in determining an individual's eligibility for physician-assisted death, the question of whether or not this phrase requires further legislative definition has given rise to considerable debate.
As some appearing before the Panel noted, the term grievous has a particular connotation in criminal law. "Grievous bodily harm" helps define the amount of force peace officers may use in carrying out their duties.Footnote131 The British Columbia Civil Liberties Association noted that the established definition of "grievous" in the context of criminal law is "serious and non-trivial."
In medical practice the words may be less universally understood. In conversation with Dr. Francine Lemire, Executive Director of the College of Family Physicians of Canada, the Panel explored the likelihood of a diverse group of family physicians coming to agreement on the meaning of the phrase "grievous and irremediable." Dr. Lemire noted that consensus would be difficult to reach, with different physicians strongly expressing different views. It was Dr. Lemire's opinion that the meaning of grievous and irremediable "needed a little sharpening," provided that this was done while still providing sufficient flexibility for clinical judgment.
The Federation of Medical Regulatory Authorities of Canada emphasized the importance of allowing for flexibility in physicians' clinical judgment. Dr. Douglas A. Grant, President of the Federation and Registrar of the College of Physicians and Surgeons of Nova Scotia argued that overly precise, "granular" definition of these terms would take decisions "a long way from the bedside." He noted that the colleges would find the application of precisely defined terms difficult to regulate and further, that physicians would find them difficult to administer. The Saskatchewan College voiced their concern somewhat differently:
I'm just worried about the rigidity ... of a number of Members of Parliament trying to define grievous and irremediable in a way that is not too restrictive, that allows for a recognition of advances over time.
The Saskatchewan College identified the importance of allowing for some subjective variation in how "grievous and irremediable" is interpreted, so that a physician who acts in good faith and provides an assisted death to a person the physician considered to have a grievous and irremediable condition would not be vulnerable to criminal prosecution.
While medical regulators were uncomfortable with the imposition of precise criteria for defining "grievous" and "irremediable," there was openness to some degree of guidance or professional standards for the medical community, given the acknowledged difficulty of making these judgments in such weighty circumstances as a request for an assisted death. The College of Physicians and Surgeons of Ontario noted that the terms grievous and irremediable are largely legal terms, and explored the possibility of a panel of experts to define these terms and provide some examples that would help with physicians' interpretation. Other colleges expressed interest in such advice, which could evolve over time to keep pace with contemporary understanding and practice.
Although relatively few submissions examined the meaning of "irremediable" specifically, the Canadian Psychiatric Association noted the following recommendation:
In the context of mental illness, "irremediable" should not be considered to mean "incurable" as this would set the threshold for identifying a condition as irremediable too low (i.e. all chronic mental illness could then be considered irremediable).
On the other hand, the submission noted that "if irremediable is considered untreatable, then very few situations in psychiatry would be considered irremediable."
The term "irremediable" is not often used in the legal context, but the Court offered some definition by specifying that its declaration in Carter
"does not require the patient to undertake treatments that are not acceptable to the individual."Footnote132 This is an approach similar to the Belgian model where, as Advisor to the Federal Minister of Affairs and Public Health Benoit Mores noted, an individualis required to refuse all possible therapies before the assisted dying option may be pursued.
Several groups, including the Canadian Nurses Protective Society, the British Columbia Civil Liberties Association and the HIV/AIDS Legal Network suggested that the definition of these terms would be best left to physicians. Other groups appearing before the Panel, including the Association for Reformed Political Action Canada and the Physicians' Alliance against Euthanasia, argued that the terms "grievous" and "irremediable" should be explicitly defined in order to provide guidance to the health care professionals who will have to apply these terms. Some of the proposed definitions the Panel heard approximated dictionary definitions. For example, a network of British Columbia physicians who met with the Panel suggested "severe or end-stage" as a definition for grievous. Dying with Dignity Canada took a different approach, arguing for a subjective interpretation:
A "grievous" medical condition is one that results in unbearable suffering. The decision regarding what constitutes such suffering is for the individual to make. Suffering that for some people is ennobling, for others might be unbearable. To decide otherwise is to infringe on the autonomy of an individual.
Some suggestions tended toward narrowing eligibility criteria so that fewer people would qualify for physician-assisted dying. For example, in his model legislation, David Baker defined "irremediable" as "a terminal disease that is incurable and has been medically confirmed by a physician, and will by evidence-based medicine and using reasonable judgment, produce death within 12 months." He also indicated to the Panel that he favours language adopted in Québec, namely, an "advanced state of irreversible decline in capability." Other submissions, for example one from Citizens with Disabilities Ontario, were unequivocal in urging that access to assisted death "should be restricted to those who are terminally ill and whose death is imminent."
2. Objective or Subjective Standards
Another issue that some groups raised was whether objective or subjective standards must be used in defining "grievous" and "irremediable." There was disagreement about whether grievous and irremediable should be defined objectively, meaning according to set criteria or a standard of reasonableness, or whether they should be defined subjectively, meaning relying only on the views of the individual seeking physician-assisted dying or of the physician in consultation with the individual. It may be important to note that "grievous" and "irremediable" appear to be primarily objective tests, while "enduring suffering," addressed below, appears to be subjective.
Given that both "grievous" and "irremediable" are adjectives that modify "medical condition," it may be fair to assume that an objective standard is appropriate. Serious medical conditions likely to qualify as "grievous" are diagnosed largely based on objective medical tests. One's experience of a medical condition is highly personal, but the diagnosis of the condition is made according to established medical standards. There is a subjective element to the "irremediable" test because the Supreme Court held that the test does not require patients to undertake treatments unacceptable to them. Unless the individual deems available treatments unacceptable, objective medical standards will determine whether a condition is irremediable.
3. Mental Illness
The Supreme Court in Carter did not deal explicitly with mental illness. Gloria Taylor and Kay Carter, the two women whose illnesses framed the Carter decision, both lived with conditions that caused physical suffering and deterioration without affecting their competence or mental health. The Carter test requires that individuals be competent to be eligible for physician-assisted dying. The Court nonetheless did contemplate psychological suffering in its decision, and did not require that the medical condition leading to the individual's request necessarily have a purely physical origin. This means that legislators will have to consider whether mental illness alone could qualify as a medical condition for the purposes of the Carter test, and whether excluding persons who suffer intolerably from a grievous and irremediable mental illness would deprive those persons of their rights to life, liberty and security of the person.
The Panel heard widely diverging views on where mental illness might fit–or not fit–in a framework for physician-assisted death in Canada. At one end of the spectrum, Professor Eike-Henner Kluge argued that, based on the principles of equality, even if a person's mental illness rendered them legally incompetent, that incompetence should not disentitle individuals who otherwise meet the Carter eligibility criteria from accessing physician-assisted dying. On the other hand, groups such as the Catholic Health Alliance of Canada argued that mental illnesses should not be included in the scope of the medical condition eligibility criterion. The Christian Legal Fellowship and the Physicians' Alliance against Euthanasia both advanced similar arguments.
In a written submission, ARCH Disability Law Centre reported on its extensive focus group discussion among people with mental health disabilities. ARCH noted that
"[o]ne segment of the population is deeply concerned about the impact PAD [or physician-assisted dying] will have on a vulnerable population." On the other hand, the submission noted a strong sentiment in this community that physician-assisted dying
"is about offering choice and self determination to a vulnerable population. Basic equality demands that persons with mental health disabilities should be offered access to PAD on the same basis
as other persons; no extra steps or restrictions should be required." The ARCH submission concluded that "at the moment, it is not clear that the potential impact of PAD on the community of persons with mental health disabilities is understood fully enough to allow effective and safe legislation to be crafted."
The Panel heard cogent arguments in favour of ensuring access for eligible persons with mental illness, provided they have the legal capacity to make such decisions. Professor Jocelyn Downie noted that to exclude such individuals could amount to discrimination against an already-marginalized group. A compelling online submission from an individual Canadian urged the Panel to recognize the following:
All suffering isn't physical. People with mental illness suffer too and often suffer intolerably. This is a nuanced and somewhat problematic area but please include in new legislation the right of people with mental illness to access assisted death under certain circumstances.
Dr. Linda Ganzini, a prominent psychiatrist and researcher from Oregon, confirmed that many individuals with serious, chronic mental illness do retain capacity to consent to treatment. However, as the Canadian Psychiatric Association explained, capacity is situation-dependent. One may have capacity to live independently, while lacking capacity to regulate one's financial affairs. Moreover, as ARCH Disability Law Centre pointed out,
"it is very possible that a person with a serious episodic mental health disability may, during a period of good health and lucidity, decide that they are not willing to tolerate another period of mental health crisis, and chose instead seek PAD while they are capable to make that decision."
The Canadian Psychiatric Association remains in the process of developing its response to Carter and the coming regime of physician-assisted dying. It suggested some additional points to consider in the context of mental health:
- Many individuals with medical illnesses, particularly life-limiting or life-threatening ones, may have comorbid depression
- Depression, which can be difficult to diagnose, may alter an individual's thought processes and influence their wish to die
- Because of the complex course of some mental illnesses, terms related to eligibility such as "irremediable" and "enduring" might have to be interpreted differently when mental illness is involved
- "Treatment-resistant depression" is a clinical term simply meaning depression that has resisted two courses of anti-depressant drug therapy, and would not generally meet the "irremediable" standard.
According to the Canadian Psychiatric Association, when an individual has a mental illness, it can be
"difficult, if not impossible, to rule out whether or not [a request for physician-assisted dying] is being influenced by illness-based cognitive distortions." At the time of its meeting with the Panel, the Canadian Psychiatric Association had not yet determined whether it supports the view that grievous and irremediable mental illness alone (in the absence of physical illness) should qualify as a medical condition in the Carter test.
D. Enduring Suffering
The Supreme Court held that to be eligible for physician-assisted dying, individuals must experience "enduring suffering that is intolerable" to them
"in the circumstances of [their] condition." A similar criterion appears in Québec's Act respecting end-of-life care: "constant and unbearable physical or psychological suffering which cannot be relieved in a manner the patient deems tolerable."
The concept of suffering featured heavily in the Carter litigation. Part of Gloria Taylor's argument was that she wanted to be able to end her life at a time when her suffering became unbearable. In fact, the Court held that the lack of availability of physician-assisted dying as an option to individuals with grievous and irremediable medical conditions violated their right to security of the person by compelling them to endure intolerable suffering.
Suffering is a primary consideration for access in the Netherlands and Belgium. In the Netherlands, where legislation includes an eligibility criterion of "lasting and unbearable" suffering, the Panel heard from physicians and researchers including Johan Legemaate and Dr. Johannes JM van Delden that convincing a physician of one's suffering is critical to accessing assisted dying. A problem that Dr. van Delden identified with this model was that it is often easier for socially privileged individuals to access assisted dying. Dr. van Delden speculated that physicians, who are generally among the socially privileged, would be more likely to be "moved" by the suffering of individuals who share their social status and that the socially privileged would be more adept at expressing their suffering. As a result, in his opinion, the "elite" may be more likely to have their requests granted.
In the U.S., there is a very different attitude towards suffering in the assisted-dying context. Suffering is not a criterion in any American assisted-dying legislation. It may be that a suffering criterion was judged unnecessary because of the six-month prognosis criterion. Dr. Brian Mishara, a Canadian psychologist and suicide researcher, expressed some skepticism about using suffering as a criterion because he noted that people's decision making is compromised when they are in pain. The Physicians' Alliance against Euthanasia made a similar argument. It may therefore be especially important to ensure that suffering is enduring.
From the submissions received by the Panel, there appear to be three main issues to consider with respect to this criterion. The first is how to determine if suffering is "enduring" in accordance with the Court's requirement. A second issue relates to identifying a causal relationship between a person's suffering and their medical condition. Finally, a third issue is how Carter requires an individual's suffering to be evaluated: objectively or subjectively.
1. Persistence of Suffering
Some existing legislation seeks to assess the enduring nature of a request by requiring multiple requests. In Québec, for example, physicians must verify
"the persistence of suffering ... by talking with the patient at reasonably spaced intervals given the progress of the patient's condition." Some groups, such as the HIV/AIDS Legal Network and Dying with Dignity Canada, have indicated that individuals who have, for example, suffered a catastrophic injury may need time to adjust to their new circumstances before a request for physician-assisted dying should be considered. On the other hand, the Panel heard that the concept of "time to adjust" may be inappropriate in the context of end-stage cancer. Some groups have suggested a response that is proportionate to the anticipated course of the individual's illness. This topic is considered in greater depth in the section entitled "Timelines."
2. Cause of Suffering
In its declaration, the Supreme Court held that section 241(b) violated the Charter rights of eligible individuals with medical conditions that cause "enduring suffering that is intolerable to the individual." Unlike the trial court, which explicitly included physical and psychological suffering but excluded psychosocial suffering, the Supreme Court did not explicitly address which types of suffering a person seeking a physician-assisted death must be experiencing. However, there are indications to suggest that the Supreme Court explicitly considered both psychological and physical suffering. One such indication is that the Court identified a "constant theme" in the affidavits from witnesses in Carter: that
"they suffer from the knowledge that they lack the ability to bring a peaceful end to their lives at a time and in a manner of their own choosing."Footnote133 Suffering from knowledge would of course be psychological, not physical, suffering. The Canadian Medical Association indicated that it recognizes that both physical and psychological suffering are considered. Some groups appearing before the Panel suggested that other types of suffering may be relevant as well, including existential and spiritual suffering.
Some experts with whom the Panel consulted warned against adopting a restrictive view of suffering. For example, the Death with Dignity National Center in Oregon indicated that suffering
"may be pain, but it should not be limited to pain...Somebody with a chronic disease may not have any pain, but [their suffering could] be of a very different nature."
In addition, Dr. Eike-Henner Kluge, a professor at the Department of Philosophy of the University of Victoria, indicated that the sources and context of suffering are important as they can inform our understanding of the nature of the suffering. He observed that psychosocial sources of suffering do not call for a medical but a social response. In his view, psychosocial suffering, such as the kind one might expect from a marital breakdown, would fall outside the ambit of a physician-assisted dying framework because it does not call for a medical response.
Additional submissions made points that would support excluding psychosocial suffering, where causes link to the social determinants of health. ARCH Disability Law, for example, referred to "
social conditions that could lead to the conditions of life becoming intolerable, such as homelessness, social isolation or lack of treatment options." The Canadian Association for Community Living similarly notes that
"when the causes of people's suffering are abuse, discrimination, being devalued by others, lack of support or social isolation, steps can be taken to address them." The Canadian Psychiatric Association noted the following:
We also have to understand the role of psychosocial, cultural and environmental factors because that's the milieu everyone exists in...Things like unstable housing, financial instability, isolation increase the suffering of patients with depression. It would be inappropriate if the societal response was to facilitate these people dying by deeming that person's suffering is enduring and intolerable because of the psychosocial circumstances if we are able to change them. All of these things lead to challenges in identifying when the definition of intolerable and enduring is met.
The Panel heard from some groups that only physical suffering should be considered in assessing individuals' eligibility for physician-assisted dying. For example, the Association for Reformed Political Action, an intervener in Carter, argued that to protect the vulnerable, Parliament should enact legislation that explicitly considers only physical suffering.
The Supreme Court declaration requires that individuals must have a grievous and irremediable medical condition and, as a direct result of that condition, experience enduring suffering that is intolerable to them in the circumstances of their condition. Suffering alone or suffering that is not causally linked to a grievous medical condition, whether physical or psychological, would not render an individual eligible.
To be able to understand the root causes of an individual's suffering, it is important to consider suffering in all its forms.
3. Evaluation of Suffering
Some groups raised the issue of whether suffering should be evaluated objectively or subjectively. Disability rights lawyer David Baker told the Panel that the evaluation of suffering should include an objective component. He added that in his view, the Supreme Court failed to address that individuals who are refusing treatment are prepared to accept the consequences of their refusal, and therefore it cannot be said that their suffering is "intolerable." Others, including a group of law and medical students from McGill University who formed a collective to discuss and research physician-assisted dying (MedPASS), argued strenuously that suffering should be considered from a purely subjective perspective.
As the Panel heard from medical ethicists Dr. Thomas Foreman, Joshua Landry and Michael Kekewich of the Champlain Centre for Health Care Ethics at the Ottawa Hospital, each individual's experience of suffering in the context of their illness is unique. What one individual may find unbearable may be tolerable to another. The Evangelical Fellowship of Canada noted that
"[p]ain is a physical question which medical professionals are qualified to respond to and treat, but suffering is a more fully human question involving emotional, psychological, spiritual and social dimensions. And it's beyond the expertise of medicine alone to address."
It may therefore be inappropriate to establish an objective standard for an experience as personal as suffering. Further, the language the Supreme Court used to establish the suffering criterion is subjective. Typically, legal tests using an objective standard will rely on the reasonable person, for example asking how much a reasonable person would suffer in a particular situation. Subjective tests, on the other hand, ask what individuals themselves experience. The Supreme Court referred to "suffering that is intolerable" to individuals
"in the circumstances of [their] condition." This wording may point to a subjective test.
A submission from Kevin Reel, an ethicist at the Centre for Addiction and Mental Health, underscored for the Panel the profound questions at play in determining whether suffering is evaluated subjectively or objectively:
How does my own hope affect my judgment about your health condition and the sum of its interaction with your social determinants of health? When can that sum be objectively understood to add up to irremediably intolerable suffering? Or should that judgment be a subjective one, made by the client/patient? How will we feel if we find ourselves insisting that people hang in there until we eventually change longstanding resourcing structures so that the socio-environmental context in which they live changes the final calculus of their suffering?
In the final analysis, even if the suffering criterion is evaluated on a purely subjective basis, the test remains suffering that is intolerable to an individual. In addition, this suffering must be causally tied to a grievous and irremediable medical condition, which would be diagnosed based on objective medical criteria.
E. Capacity to Consent to Medical Treatment
The Supreme Court in Carter limited eligibility to competent adults. Competence or capacity–the preferred term varies across jurisdictions in Canada–to consent to medical treatment is addressed in provincial health care legislation. Under Ontario's Health Care Consent Act, for example, an individual is
"capable with respect to a treatment ... if the person is able to understand the information that is relevant to making a decision about the treatment ... and able to appreciate the reasonably foreseeable consequences of a decision or lack of decision."Footnote134 It is important to note that individuals are presumed to be competent. Further, competence is not a global assessment; it is recognized to be situation-dependent, meaning that one may have capacity to make certain decisions, but not to make others. The Canadian Psychiatric Association highlighted the specificity of capacity determinations, noting
"there have been situations where a patient might not have capacity to make a decision on chemotherapy but they do on surgery for the same illness."
Dr. Linda Ganzini, a psychiatrist and researcher from Oregon, where assisted dying has been available for nearly two decades but limited to persons with terminal conditions in the last six months of life, told the Panel that in the absence of mental illness, capacity assessment for decisions related to assisted dying are relatively straightforward. She suggested that such an assessment should include questions to determine individuals' ability to make a steady choice; to understand the risks, benefits and alternatives of the procedure and to alternative options; and to appreciate the information and apply it to themselves. Dr. Ganzini expressed confidence that most general practitioners could perform capacity assessments for individuals seeking assisted dying.
Conversely, some interveners raised the concern that capacity assessments can be very difficult to perform. For instance, Dr. Catherine Ferrier, President of the Physicians' Alliance against Euthanasia, noted the difficulty in assessing capacity:
"I regularly assess decision-making capacity. I teach it. I testify in court for my patients, but if I had to assess a patient's capacity to choose death, there's no way I could be certain that there is no outside influence."
Others who appeared before the Panel were skeptical that decisional capacity in the context of assisted dying could be effectively determined by a person's physician. The Christian Legal Fellowship, for example, argued that:
if lawyers, who are versed in the law and are purported to be experts in a lot of the legal tests related to this issue, [are] not able to detect undue influence in the context of drafting wills, where the stakes are much lower, ... there's a deep concern ... that physicians will not be able to make that assessment for patients.
Dr. Douglas Grant, President of the Federation of Medical Regulatory Authorities of Canada and Registrar of the College of Physicians and Surgeons of Nova Scotia, argued that physicians make determinations every day about whether their patients have the capacity to consent to treatment. Under provincial health care consent legislation, it is illegal to proceed with treatment unless such determinations are made. The Panel heard widely divergent views on whether physician-assisted dying should, because of the finality of the decision, be handled differently from other decision making related to treatment.
1. Capacity Assessment in the Presence of Mental Illness
Dr. Sonu Gaind, President of the Canadian Psychiatric Association, spoke at some length with the Panel about the relationship between mental illness and capacity:
Mental illnesses can impair and affect cognition, insight and judgment. There are a range of cognitive changes, for example, that people with depression typically have. They will have a cognitive triad of thinking they are bad, the world is bad and the future will be bad.... There is decreased cognitive flexibility meaning the person has a very hard time seeing outside their current experience and imagining it could be different. It also leads to selective ruminations that focus on the negative and can minimize the positive. There are other distortions that can occur in terms of a person's sense of self. They can have feelings of guilt and worthlessness. They can feel a burden to others, loved ones and the world. They also have lower emotional resilience and can be less capable of dealing with life's stressors.
The Canadian Psychiatric Association made two recommendations directly relevant to the issue of assessing decisional capacity in the presence of mental illness. The first was that when mental illness is either the underlying illness leading to a request for physician-assisted dying, or present in addition to a physical illness,
"psychiatrists should be involved in assessing whether the patient's mental illness is impairing their capacity to make a decision regarding" physician-assisted death. The second is that, out of "beneficence," individuals whose decision-making processes may be impaired by a mental illness should be deemed ineligible for physician-assisted death.
Dr. Linda Ganzini told the Panel that capacity assessments for decisions related to assisted dying become significantly more difficult when depression is present. Because depression can result in altered cognitive functioning and even suicidal thoughts, it may be difficult for a clinician to determine if a request for assisted dying is genuine if the individual has mild to moderate depression. A concept that she suggested could assist in such situations is the idea of authenticity. If individuals' requests for physician-assisted dying seem consistent with the way they lived their lives, placing strong emphasis on autonomy and independence, it may be less likely that depression is driving the request, in Dr. Ganzini's view. Dr. Ganzini alerted the Panel that her expertise and comments were restricted to her experience in Oregon, which has adopted eligibly criteria that include a criterion of terminal illness with a prognosis of six months.
2. The Possible Role of Advance Directives
Consistent with most existing legislation, the Supreme Court in Carter required that individuals be competent in order to access physician-assisted dying. In fact, all jurisdictions that have enacted assisted-dying legislation require that the individual be competent at least at the time of their request. Some legislation addresses the possibility of requesting assisted dying through advance directives. As with several other issues, advance directives were not contemplated in Carter, but may be considered by legislators.
An advance directive, addressed in several provincial statutes on health care decision making, is a document setting out an individual's wishes for future medical treatment, and often for treatment in the event of incapacity or unconsciousness. Under Québec's Act respecting end-of-life care, people may request many end-of-life treatment options in advance, but they are explicitly prohibited from requesting medical aid in dying via advance directive. This exemption was created during the study of the legislation; the initial draft of Bill 52 would have allowed for requests for medical aid in dying via advance directive.Footnote135
In the Netherlands, it is possible under certain circumstances to request assisted dying through an advance directive.Footnote136 It could be possible for persons diagnosed with a condition such as early-stage Alzheimer's to draft an advance directive that would request assisted death when their dementia has progressed to a given point, for example. The Panel heard from Professor Johan Legemaate, of the University of Amsterdam, that in practice, this sort of request is very rarely carried out because physicians are generally not willing to follow through with a request to assist an individual with advanced dementia to die. What could happen instead, however, is that individuals may request assisted death upon receiving a diagnosis such as Alzheimer's, and be competent at the time they receive assistance to die, although much of their suffering would be related to the knowledge of their eventual decline, rather than as a direct result of their condition.
As the Panel heard from Herman Nys, a health lawyer and academic, it is possible to request assisted dying via advance directive in Belgium, and to have the request carried out, but only under very specific conditions. If an individual has a valid advance directive requesting assisted dying, the request may only be fulfilled if the individual has an incurable and irreversible disorder, the individual becomes unconscious and the advance directive is no more than five years old.Footnote137
From the Panel's meeting with the Federation of Medical Regulatory Authorities of Canada, which included most of the country's colleges of physicians and surgeons, it appeared that most medical regulators are not prepared to consider requests made via advance directive. The College of Physicians and Surgeons of Newfoundland and Labrador expressed some concern about the timing of capacity assessments, i.e. whether capacity is determined at the time a request is made or at the time assisted death is administered. Dr. Grant of the Nova Scotia College noted that advance directives are not contemplated in Carter and need not be addressed, although he anticipated that litigation may someday raise the question of the validity of an advance directive request for physician-assisted dying. The College of Physicians and Surgeons of Prince Edward Island questioned whether advance directives for assisted dying might be seen to "fly in the face of informed consent" as "nobody can anticipate what they're going to feel or want to do" in a grievous medical situation, while the Saskatchewan College argued that because advance directives are respected in the case of Do Not Resuscitate orders, they should be respected in the case of requests for physician-assisted dying as well.
A number of individual submissions the Panel received raised the issue of advance directives. In one such submission, the author argued strongly for the principle that an advance directive authorizing physician-assisted dying should be respected:
Incurable medical conditions, including comas and advanced dementia, should use living wills as a form of consent. Appropriate safeguards are required to protect abuse, but not providing an assisted death when written consent has been given is itself an abuse–not a safeguard.
Since the question of consent by advance directive extends beyond the scope of the Court's declaration in Carter, the Panel's attention to the complexities it raises has been relatively superficial. A scenario in the Issue Book raised the issue to test the importance that Canadians place upon this possible dimension of physician-assisted death. The Panel has not undertaken the extensive research and investigation that a question of this importance would warrant. The same is true with regard to substitute and supported decision making, discussed briefly below.
3. Substitute and Supported Decision Making
In many provinces, health care consent legislation addresses substitute decision making. A substitute decision maker is a person appointed to make medical decisions on behalf of another person who lacks capacity to make those decisions. In Belgium, the same rules that apply to advance decision making apply to substitute decision making. No other jurisdiction has enacted legislation to allow this form of consent for assisted dying, although Québec explicitly permits substitute decision making for "continuous palliative sedation," but not for medical aid in dying.
In a written submission to the Panel, the Ryerson University School of Disability Studies argued that the notion of consent must be considered very carefully in drafting any future legislation on physician-assisted dying. The School noted that
"[o]ften people labeled with cognitive impairments and psychiatric diagnoses are not considered to have the capacity to give informed consent. The request for physician-assisted suicide must not come from a substitute decision maker. It must come from the person themselves."
The Panel heard from Professor Eike-Henner Kluge that there are ethical arguments in favour of expanding access to physician-assisted dying beyond the Supreme Court declaration in Carter and permitting access to individuals who request assisted dying via substitute decision maker. Few other groups advanced this argument. In a written submission the Panel received, it heard that for "any cases that are ambiguous, or in which the judgment of the substitute decision maker is in question, a bioethicist should be involved."
Anna MacQuarrie, Director of Global Initiatives, Policy and Human Rights with Inclusion International, a disability rights advocacy group, shared with the Panel information about "supported decision making." She explained that while substitute decision making is a contentious topic in the disability rights community, supported decision making is generally encouraged and promoted. Substitute decision making removes agency from the person deemed incompetent. Supported decision making acknowledges that many people with intellectual disabilities are able to make decisions, provided that they have the required support. This support could take the form of an interpreter, a communications device, plain language information, or the assistance of a trusted individual or individuals.
In its submission to the Panel, the Canadian Association for Community Living (the Canadian member of Inclusion International), argued strongly against authorizing supported decision making in the context of physician-assisted death:
While jurisprudence on decisional capacity and competence points increasingly to the legal obligation to recognize supports in decision making, we propose that a legislative line be clearly drawn. A report for the Law Commission of Ontario recommends that for the purposes of decisions that may fundamentally affect a person's mental or physical integrity, of which physician-assisted suicide and voluntary euthanasia is one, the law require that the person be able to act "legally independently".... That is, a person on his or her own must be able to fully understand and appreciate the nature and consequences of the decision, with supports and accommodations as may be required for this purpose.
The Supreme Court in Carter held that only eligible individuals who "clearly consent" may access physician-assisted dying. Requests must therefore be voluntary. To ensure that a request is in fact voluntary, a person's request for physician-assisted death must be evaluated for possible coercion, undue influence and ambivalence. Coercion and undue influence are external pressures that individuals may experience from family, friends, authority figures–potentially including health care providers–or society at large, while ambivalence reflects the individual's own potentially conflicting thoughts on whether to proceed with physician-assisted dying.
As noted in Chapter 5 of this report, the Supreme Court held that the purpose of the prohibition on assisted dying is to
"[prevent] vulnerable persons from being induced to commit suicide at a time of weakness." The many submissions that the Panel received with respect to ensuring the voluntariness of a request for physician-assisted death articulate various approaches to ensure that such inducement does not occur.
Affirming the importance of the principle of voluntariness, and setting out a framework for its determination, Professor Wayne Sumner from the University of Toronto made the following recommendation:
Whatever form the patient's request takes, it must be both voluntary and informed. In order to be voluntary it must be free of undue influence, whether by family, friends, or health care providers. Influence will be 'undue' when it rises to the level of fraud, deceit, duress, or coercion. A patient's decision should be deemed to be voluntary unless there is some reason to think that it is not, in which case the patient should be offered counselling or access to a trusted adviser.
A number of submissions were broadly cautionary, serving to underscore the importance–and at times, the difficulty–of ensuring a standard of "clear consent" in all cases of physician-assisted death. The Evangelical Fellowship of Canada recommended that
"federal laws and regulations should clearly address issues of vulnerability, voluntariness and potential coercion." The Fellowship was
"concerned that individuals who feel that they are a burden to their family members or to the healthcare system or to their caregivers may be vulnerable to influence, suggestion or pressure to seek assistance in ending their life."
The trial judge in Carter held that physicians are able to assess coercion, undue influence and ambivalence reliably as part of their assessment of individuals' competence and the voluntariness of their requests. Consistent with this finding, the Canadian Medical Association recommended that physicians assess voluntariness in the context of requests for physician-assisted dying by determining whether the decision was
"made freely, without coercion or undue influence from family members, health care providers or others;" that there is a
"a clear and settled intention to end [one's] own life after due consideration;" and that requests come from individuals themselves
"thoughtfully and repeatedly, in a free and informed manner."
The BC Humanist Association supported this position:
Physicians regularly assess patients' competence to make life and death decisions. We rely on their expertise in assessing competence and determining when they need additional information to do so.
On the other hand, the Panel heard that doubt persists among several Carter interveners on this point. For example, the Association for Reformed Political Action suggested that while physicians may be able to assess coercion, undue influence and ambivalence, psychiatrists may be best able to do so. The Physicians' Alliance against Euthanasia expressed the view that it is impossible to be entirely sure whether coercion is present. The Canadian Federation of Catholic Physicians' Societies expressed concerns about assessing voluntariness in the presence of mental illness, language and cultural barriers and other social vulnerabilities, Dr. Renata Leong, from the Federation also observed:
As a profession, medicine has not been very good at identifying victims of partner violence and elder abuse. If we cannot identify them, how can we ... be sure that there's no duress and [that decisions are] completely voluntary? Research has consistently shown that we have all kinds of screening tools, but it's not good enough.
The Christian Medical and Dental Society of Canada argued that coercion is difficult to detect because
"individual autonomy only works if everyone has the same amount of personal power." Professor Jocelyn Downie expressed a related caution, noting that voluntariness may be particularly difficult to assess in the context of oppression.
Several groups' submissions identified specific responsibilities or procedures to ensure that persons who request physician-assisted dying do so voluntarily, without coercion, undue influence or ambivalence. Some examples are listed below:
- Dying with Dignity Canada proposed that "two physicians must separately assess the individual and must attest that the request is made by the individual without coercion."
- A network of physicians from British Columbia suggested to the Panel that involving multi-disciplinary teams in voluntariness assessments could help ensure that no sources of coercion are overlooked.
- The Canadian Association for Community Living recommended that qualified assessors, supplementary to a physician's assessment of decisional capacity, assess "possible undue influence and suspicious circumstances," and explore with the person who has made the request any relevant support alternatives "in the person's family and community social support system."
Chapter 8. The Request
As Anne Sutherland Boal, Chief Executive Officer of the Canadian Nurses Association aptly expressed,
"[physician-]assisted death is not just an act; it's a process. It begins right from the time the patient says that they are considering such a request, and it continues until death." An individual's request for physician-assisted death is a significant step in the process. There are many important considerations and questions related to such a request: how should it be initiated and by whom? What form should the request take? Should the family or other witnesses be involved? This following section will summarize what the Panel heard in relation to these issues.
An observation made by Dr. Renata Leong, a family physician who treats many marginalized patients in a downtown urban hospital, highlighted the importance of a measure of formality in requests when she recounted times when patients have spoken more casually about wanting to die. She reported that her patients:
need to know they can be upset, they can vent, they can just have off-the-cuff remarks, say I want to die because I'm in so much pain. And tomorrow, they might change their mind. And we see that all the time. Once you relieve the pain, or even as simple as arrange Wheel-Trans for my patients who's on crutches who have to travel back and forth, they change their mind.
A. The Request Must Emanate from the Patient
One point on which the Panel heard differing opinions was on whether requests must always come first from the individual, or whether a physician may (or even should) mention physician-assisted dying as a possible option as part of informed consent. There are several risks associated with a physician raising the issue of physician-assisted dying. The Panel heard from the Physicians for Compassionate Care Education Fund in Oregon that patients who are not contemplating —or are opposed to–assisted dying might feel angered, abandoned or betrayed by a physician who suggests assisted death. The Panel also heard that physicians may have a very strong influence on their patients' choices such that if physicians suggest physician-assisted dying, they could be adding more weight to the option than individuals might on their own. Professor Isabelle Marcoux, Assistant Professor from the Faculty of Health Sciences at the University of Ottawa, noted that requests for physician-assisted death should always emanate from the patient and not from a suggestion of the health care provider.
In a detailed submission articulating guiding principles and a framework of guidelines for physician-assisted death, Professor R. Cohen-Almagor wrote:
[t]he physician should not suggest assisted suicide to the patient. Instead, it is the patient who should have the option to ask for such assistance. Initiation by the physician might undermine the trust between the patient and the physician, conveying to patients that the doctor is giving up on them and values their lives only to the extent of offering assistance to die. Such an offer might undermine the will to live and to explore further avenues for treatment.
The Panel also heard that the option of assisted dying might be an important part of informed consent. The Canadian Hospice Palliative Care Association expressed the challenges its members foresee around the notion of providing this information to patients:
[A]ll patients deserve access to information around end of life options and including physician-assisted death. And this hasn't been an easy conversation with our community. And you know, the community realizes that they will need to provide all the options, including physician-assisted death to patients and families, the information around that.
Dr. Marcel Boisvert, with the Association québécoise pour le droit de mourir dans la dignité, observed that requests must come from the patient first, but that after an individual has made a request, "you talk to them about their options, including medical aid in dying. At that point, it's okay to do it.
" Recalling conversations with his colleagues in the Benelux countries, Dr. Boisvert added that it is "the exception for a physician to talk about medical aid in dying before the patient brings it up." Dr. Georges L'Espérance, from the same Association, argued that the importance of the issue of who raises the question first will soon diminish; public awareness of physician-assisted dying will increase when the service becomes available. He observed that
"some people want to make it sound like we are saying ... the patient comes, you give him his diagnosis of serious, severe, irreversible pathology, then you tell him, well, we can do this, we can do palliative care then we can give you medical aid in dying. That's not how it goes in real life."
In Vermont, individuals have the explicit right to "be informed of all available options related to terminal care."Footnote138 In the U.S. jurisdictions where assisted dying is legal, it is available only to individuals with terminal illnesses who have a prognosis of six months or less. Discussions about treatment options in the U.S. would therefore have a more limited scope than in the Carter context. The Vermont legislation explicitly states that discussing the option of assisted dying cannot not be construed as "assisting in or contributing to a patient's independent decision" to seek assisted death.Footnote139
B. Point of Entry for the Request
The typical scenario foreseen by most groups appearing before the Panel is one where the individual initiates a conversation about physician-assisted death directly with their physician or other health care provider. If the physician does not have a conscientious objection to physician-assisted dying, the process will be initiated and procedural safeguards will flow from that initial interaction. Dr. Rob Jonquière, the Communications Director of the World Federation of the Right to Die Societies, with whom the Panel met in the Netherlands, observed that every single one of these discussions between individuals and their physicians is unique.
In Oregon, the Panel heard from Barbara Glidewell, who was the patient advocate and ombudsperson at the Oregon Health Sciences University (OHSU) in Portland for nearly 30 years. When the Death with Dignity Act came into force in Oregon, the OHSU decided to process all requests for assisted dying through the patient advocacy office. Ms. Glidewell had direct contact with many individuals seeking assisted death and often met with these individuals along with their families. She noted that discussions often opened up after physicians left the room, allowing her to observe family dynamics. If she detected conflict or coercion, she could raise the matter with the responsible physician as an area to investigate.
Aside from the traditional interaction between individuals and their physicians, other suggestions on how to access physician-assisted dying were brought to the Panel, either as a response to dealing with physicians' conscientious objections or as means of diversifying the possibilities for access.
Dr. Jonquière spoke of the Netherlands' end-of-life clinics, where physicians (other than the patient's primary or family physician) and nurses assess individuals' requests for assisted dying, and provide the service if the legal requirements are met. These clinics are a new initiative set up to address the difficulties that individuals may encounter when physicians are not comfortable providing assisted death, either because of conscientious objection or because they are not sufficiently familiar with the procedure. Individuals can be referred to the clinic following a physician's conscientious objection, or go directly to the clinic themselves.
Dying with Dignity Canada suggested that instead of relying solely on the patient-physician interaction, a system could include multiple points of access. The organization was very concerned about access and highlighted the need to create a government-funded agency to appropriately respond to cases of conscientious objection and to guarantee effective referrals. Dying with Dignity Canada urged that this "one-stop" service should provide multilingual services, and should be accessible to individuals with poor medical literacy and easily reachable on a daily basis either by physician referral or self-referral. According to Dying with Dignity, no such service currently exists in Canada. A service to which patients could self-refer could be beneficial, as it empowers the patient while at the same time removing the onus from health care providers who may conscientiously object.
Some groups have raised general concerns about access, citing for example the barriers to access that Canadians might face if they live in remote regions, or if inconsistent services are provided across provinces and territories. The Canadian Nurses Association suggested a pan-Canadian approach that would ensure equal access for all eligible Canadians by promoting standardization and quality improvement. Other groups have suggested a "mobile" or "itinerant" medical team that could reach Canadians wherever they live. The Canadian Society of Palliative Care Physicians suggested a mobile service as a response to conscientious objections in remote or rural communities. Dr. Alika Lafontaine of the Indigenous Physicians Association of Canada supported the idea of an itinerant team to ensure access in remote communities and specified that it might be necessary to adapt services to meet the needs of Indigenous populations.
C. Form of the Request
Views concerning the number and type of requests varied among stakeholders and experts. Some were broad in their recommendations. For example, a network of British Columbia physicians with whom the Panel met, as well as the Euthanasia Prevention Coalition, both suggested that requests be "enduring." The Canadian HIV/AIDS Legal Network also noted that it was important that requests be "repeated clearly" on a number of occasions.
Other groups provided more specific recommendations. The Canadian Medical Association (CMA) recommended that individuals seeking physician-assisted dying submit at least two oral requests, at least 14 days apart, over a period of time that is proportionate to the individual's prognosis. Following the two oral requests, the CMA recommends that individuals would then submit a written request for assisted dying to the attending physician. Such a written document should, in the CMA's view, be in the form of a special declaration to be developed by the government, a ministry of health, a regional health authority or a health care facility.
The Evangelical Fellowship of Canada and the Association for Reformed Political Action Canada recommended that at least three requests be made and that each be video- or audio-recorded. They suggested that such recordings could be useful in preventing abuse and in the event that any criminal wrongdoing is reported.
Several jurisdictions require a written formal request for assisted dying and require that these requests be kept as record. Such records are useful for oversight and data collection, which will be discussed in further detail in Chapter 12. Legislation in QuébecFootnote140 and BelgiumFootnote141 requires patients to submit written requests to attending physicians. Both jurisdictions also stipulate that accommodation must be made for patients who may be physically incapable of completing written requests. In Oregon,Footnote142 WashingtonFootnote143 and VermontFootnote144 patients must, in addition to a written request, make two oral requests to the attending physician. The American statutes do not include accommodation provisions for persons with disabilities. Video recording of requests is not required in any existing legislation.
D. Witnesses to the Request
The Panel heard and reviewed a number of suggestions about who may act as a witness to a written request for physician-assisted dying, as well as the number of people who must witness such a request.
Professor Jocelyn Downie,Footnote145 a health lawyer and academic, and Mr. David Baker, a disability rights lawyer, proposed that all requests should be signed in the presence of the attending physician and two witnesses. The same requirement appears in S-225, An Act to amend the Criminal Code (physician-assisted death),Footnote146a Senate public bill introduced in December 2014. Professor Downie offered a second option that would permit an individual to provide a solemn declaration pursuant to section 41 of the Canada Evidence Act,Footnote147in the event that the two witnesses cannot be physically present at the same time.Footnote148 Mr. Baker adds that the two witnesses must be required to attest that to the best of their knowledge and belief the individual is competent, acting voluntarily and is not being coerced to sign the request.
The requirement that an individual's request for physician-assisted dying be made in the presence of a witness is a safeguard commonly used in jurisdictions in which assisted dying is permitted. Québec's legislation requires that a government form be signed in the presence of, and countersigned by, a health or social services professional.Footnote149 It specifies that if the witnessing professional is not the attending physician, the professional must submit the request to the attending physician. State legislation in WashingtonFootnote150 and OregonFootnote151 requires that a request be signed and dated by the patient and witnessed by at least two individuals who, in the presence of the patient, attest that to the best of their knowledge and belief the patient is capable, acting voluntarily and is not being coerced to sign the request. Vermont's legislation differs slightly in that the individual's request must be signed in the presence of two or more witnesses who are required to sign and affirm that the individual appears to understand the nature of the document and to be free from duress or undue influence at the time the request was signed.Footnote152
In some cases, legislation or model legislation includes certain conditions to ensure that individuals acting as witnesses do not have a potential conflict of interest. The models offered by Professor Downie, Mr. Baker and Bill S-225 include similar requirements.Footnote153 They stipulate that a witness must be at least 18 years old and not be
- a relative by blood, marriage, common-law partnership or adoption
- an owner, operator, employee or resident of the health care facility where the person making the request is receiving treatment
- a physician involved in the care of the patient
- entitled to any portion of the estate upon death under any will or by operation of law at the time of acting as a witness
State legislation in Oregon,Footnote154 WashingtonFootnote155 and VermontFootnote156 feature similar witness criteria. OregonFootnote157 and WashingtonFootnote158 further require that if the individual is a patient in a long-term care facility at the time the written request is made, one of the witnesses must be an individual designated by the facility and meet the qualifications specified by the appropriate government department.
E. Role of Family
Some individuals and organizations the Panel heard from felt that the role of the family in the physician-assisted dying process is critical. Others described the process as a deeply personal one, which should remain between the patient and his or her physician. The Panel heard various suggestions on whether or not the family should play a formal role in the physician-assisted dying process.
In Ms. Lee Carter's appearance before the Panel, she discussed her family's role in helping her mother, Kay Carter, to obtain assisted dying in Switzerland. She noted that by the time Ms. Kay Carter decided she wished to pursue assisted death, she could no longer hold a telephone, use a computer or write. Consequently, Lee Carter and her husband, Mr. Hollis Johnston, did all the planning and appropriate paperwork on behalf of Kay Carter. Ms. Lee Carter's experiences demonstrate the supportive role some families may play in this process.
It is important to note however, that many individuals may wish to make this decision privately without the involvement of family or other loved ones. A number of stakeholders and experts emphasized that family involvement could enrich the assisted-dying process for some, but such involvement should never override the principle of individual autonomy. Dr. James Downar of Dying with Dignity Canada noted that health care professionals may encourage individuals to include their family in the process, but any actions beyond encouragement could violate individuals' right to privacy.
Dr. Linda Ganzini highlighted the need to safeguard individuals who may be susceptible to coercion by family members to request assisted dying. She noted that coercion by family members in assisted-dying cases is rare, but that clinical interviews should be held in private (i.e. separate and apart from family) with the individual making the request to rule out the possibility. The Physicians' Alliance against Euthanasia also noted that family involvement could be problematic in scenarios where there may be family conflict over the request for physician-assisted dying or if elder abuse may be occurring. In such sensitive scenarios, medical professionals will play a key role in assessing whether an individual has fully and freely consented to the procedure.
In cases where families are involved, Dr. Katrina Hedberg, State Epidemiologist and State Health Officer at the Oregon Public Health Division, suggested that psychological and social support be provided to the family before, during and after requests for assisted dying are carried out. Ms. Barbara Glidewell, a former patient ombudsperson with a major university hospital in Portland, Oregon, also noted that involving the family can help ease anxiety for all involved and have a healing effect on relationships with family and loved ones.
Ms. Melanie MacKinnon, an academic and Indigenous health expert at the University of Manitoba, highlighted the important role Indigenous families may play in the dying process. She noted that because palliative and end-of-life care may not be easily accessible or available in many Indigenous communities, families often play an important role in supporting relatives who are at or near end of life. She discussed how entire extended families often aim to reach a "shared decision" concerning the health of an ill family member, but recounted experiences where large family groups have been made to feel unwelcome in hospital settings. Dr. Alika Lafontaine of the Indigenous Physicians Association of Canada echoed Ms. Mackinnon's perspective, and stated:
[I]t's just as important to Indigenous patients to have their family walk along the path of resolving themselves that this is what they want to do and that this is the right decision for them to make, as it is for them to walk along that journey and come to the point where they recognize that this is the direction that they want to go.
Legislation in a number of jurisdictions requires that the attending physician consult (or offer to consult) with the patient's family as part of the process for assessing a request for physician-assisted death. Québec's Act respecting end-of-life care requires that if an individual wishes, the attending physician must discuss the request with the individual's close relations.Footnote159 Further, Québec's legislation states that it is the responsibility of the attending physician to make sure that the patient has had the opportunity to discuss the request with the persons they wish to contact.Footnote160 Under state legislation in OregonFootnote161 and Washington,Footnote162 the attending physician may recommend that the individuals notify next of kin of their request, but individuals who do not follow this recommendation or are unable to notify next of kin cannot have their request denied for this reason. California's legislation requires that individuals explicitly state in their formal request whether they have decided to inform family, or if they have no family to inform.Footnote163
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