As Canada prepares to usher in a legislative regime governing physician assisted dying ("PAD"), questions surrounding the more contentious aspects of end-of-life decisions seem to be accumulating. From a legal standpoint, we have continuously grappled with concepts such as what it means to possess the requisite capacity for various tasks or decisions, and this difficulty is more pronounced in the context of mental illness. Within the medical field, a clear consensus does not exist to enable us to say with certainty that we truly understand an individual's subjective experience, particularly where mental illness is involved. Within the contentious confluence of law and medicine, then, it is unsurprising that we have not reached a national consensus regarding how we ought to legislate regarding PAD and mental illness. After all, in other situations, such as an assessment regarding an individual's capacity to manage property, there are mechanisms in place to allow that person to regain control and autonomy should the situation change. The finality of death prompts us to consider with greater seriousness and urgency what we are willing to permit, as a society, when it comes to allowing an individual to choose the timing and manner or his or her death.
The need to balance autonomy and the protection of vulnerable individuals has spurred a variety of opinions that have significant ramifications for individuals with mental illness, and the debate will likely continue long into the future. In the meantime, a consideration of how we conceptualize PAD in the context of mental illness may facilitate an understanding of the ethical, legal and medical principles we wish to promote in the impending legislation.
The Carter Decision and Mental Illness
In January 2015, in the landmark decision of Carter v. Canada (Attorney General),[1] the Supreme Court of Canada found the Criminal Code prohibition on PAD to be constitutionally invalid. The Supreme Court suspended the declaration of invalidity for 12 months so as to enable the federal and provincial governments to consider and develop a legislative framework. In January 2016, at the request of the federal government, the Supreme Court granted a four-month extension to this suspension period.[2] This gives the federal and provincial governments until June 2016 to draft appropriate legislation governing PAD. So far, Quebec is the only province that has done so.
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In the Carter decision, the Supreme Court stipulated that an individual who wishes to access PAD must be a competent adult who clearly consents to the termination of life, and who 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.[4] The Supreme Court did not expressly address mental illness in the Carter decision. It is worth noting that the individuals involved in PAD legislation in Canada so far have suffered medical conditions that cause physical deterioration and suffering without affecting cognitive abilities. This leaves legislators with the onerous task of determining whether an individual suffering from a condition predominantly or exclusively classified as a mental illness can access PAD, and whether depriving an individual of such a course of action constitutes an infringement of that person's constitutional rights.
External Panel on Options for a Legislative Response to Carter v. Canada
Given the intense scrutiny and discordance surrounding the impending PAD legislation, it is unsurprising that broad and thorough consultations on the issues underlying access to PAD have been diligently undertaken. In December 2015, the External Panel on Options for a Legislative Response to Carter v. Canada ("Panel"), established by the Ministers of Justice and Health in July 2015, released its Final Report, Consultation on Physician-Assisted Dying: Summary of Results and Key Findings.[5] From the starting point provided in the Carter decision, the Panel asked questions that, in the context of mental health, have significant ramifications for PAD policy, including who is deemed competent for the purposes of PAD, what a grievous and irremediable medical condition might be, and what is meant by enduring suffering that is intolerable to the individual.
The Panel notes that opinions regarding whether mental illness ought to fit within the ambit of the new framework vary widely. Some commentators, such as the ARCH Disability Law Centre, expressed concern that the impact of PAD on the mental health community is not understood well enough at present to allow for a safe and effective legislative framework to be implemented. ARCH noted, however, that, in the interests of equality, individuals with mental illness should be offered access to PAD on the same basis as other individuals.
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In addressing mental health and PAD, the Panel suggests that it is worth considering the following points, as recommended by the Canadian Psychiatric Association ("CPA"):
- 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 process 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.[7]
The Panel's recommendations appear to acknowledge the potential overlap between mental and physical illness, and the risk that a mental health issue may cause an individual to desire to end his or her life.
At the time of the Panel's Report, the CPA had not yet determined whether it supports the notion that a mental illness, absent the presence of a physical illness, can constitute a medical condition meeting the Carter requirements. The CPA did, however, inform the Panel that it is difficult, if not impossible, to determine whether a request for PAD is being made due to cognitive distortions resulting from mental illness.
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The Panel's Report highlights the complexity of conceptualizing mental illness in the context of PAD, as well as the overlapping nature of mental and physical illness. The Panel's Report also serves to crystallize the importance of further study in this area of medico-legal ethics and of investigating aspects of a potential new legislative regime capable of achieving public and professional consensus as a starting point for further discussion and policy refinement.
Special Joint Committee on Physician Assisted Dying
In February 2016, pursuant to Orders of Reference from the Senate and from the House of Commons, the Special Joint Committee on Physician-Assisted Dying ("Committee") presented its first Report, Medical Assistance in Dying: A Patient-Centred Approach.[9] The Committee was charged with consulting broadly and examining the available literature and research regarding PAD. Overall, the Committee noted a dire need to put safeguards in place to protect the vulnerable, and for better supports to be provided to individuals with mental health issues. The Committee also recognized that "...considerable work needs to be done to ensure that individuals do not seek [PAD] as a result of a lack of proper community and other supports."
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The Committee heard varying opinions regarding whether PAD ought to be extended to individuals with mental illness. In response to those submissions, the Committee acknowledges the challenges that will inevitably arise in addressing such issues, particularly where mental illness is the precursor for the request, rather than a consequence of a medical issue. However, the Committee states that, "...where a person is competent and fits the other criteria set out by law, the Committee does not see how that individual could be denied a recognized Charter right based on his or her mental health condition. Furthermore, we do not understand the Carter decision to exclude mental illness."
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The Committee cautions that an individual requesting PAD must meet the eligibility criteria set out in the Carter decision, including the presence of an irremediable condition and the capacity to make the decision, but argues that, while mental illness may present unique challenges in the context of PAD, "[t]he difficulty surrounding these situations is not a justification to discriminate against affected individuals by denying them access to [PAD]".[12] The Committee seems to have adopted a broader approach than that of the Panel in addressing PAD and mental illness. Such a division of opinion could prompt investigation into how and whether we can further define concepts such as grievous and irremediable suffering, or what constitutes capacity in the context of PAD and mental illness.
Public Perception
Of course, any new legislative regime will generate a great deal of public discourse and scrutiny. This has been particularly true in the context of PAD. For example, a recent editorial by a doctor, Trudo Lemmens, and a lawyer, David Baker, expresses concern that increasingly expansive criteria for access to PAD has reportedly led to vulnerable patients being placed in a position of increased risk in the Netherlands and Belgium, particularly where individual physicians are tasked with allowing access to this course of action.[13] The authors point to studies showing that, in some jurisdictions permitting PAD, this choice is increasingly prevalent among individuals with mental health conditions, and even among people who are lonely or concerned about becoming dependent upon others.[14] Lemmens and Baker caution that we may experience issues with how physicians assess competence and how vulnerable patients might "shop around" until they find a physician willing to acquiesce to a request for PAD. This type of commentary shows that there are pressing public concerns regarding whether individuals may desire access to PAD for reasons related to mental illness that are treatable, and that physicians may be unwittingly complicit in offering PAD to individuals who would benefit from support services rather than the termination of life.
In February 2016, a group consisting of ethicists, medical professionals, lawyers and advocates released a publication entitled the Vulnerable Persons Standard,[15] containing a series of evidence-based safeguards they hope will be incorporated into the impending legislation. The publication strongly favours an approach to PAD that recognizes the wide range of factors involved in an individual's desire to die. The group notes that mental health issues and psychosocial factors such as depression, loneliness, hopelessness, grief, fear, shame and coercion can impair insight and judgment, and that adequate care and support can be invaluable in decreasing suffering and consequent requests for PAD. The group suggests that PAD only be made available to adults "...in a state of advanced weakening capacities with no chance of improvement and who have enduring and intolerable suffering as a result of a grievous and irremediable medical condition."
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Adding to this public commentary on PAD and mental illness, a petition has been initiated entitled Assist people with mental illnesses to thrive not die!,[17] asking the Prime Minister to refrain from allowing PAD for psychiatric disorder. The petition, which currently has over 2,500 signatures, begins with the phrase, "I'm so glad I didn't kill myself when I wanted to." Mark Henick, the author of the petition, describes having experienced intolerable suffering due to anxiety, depression and trauma, and outlines what he believes to be a mistaken assumption on the part of the Committee that mental illness can be terminal. What Henick primarily appears to be addressing is the complicated idea of capacity in the context of mental illness. He states that "...when someone is suicidal, while our capacity and competency to make decisions usually remains, the options we have to choose from become limited and distorted by the very symptoms we're fighting to overcome. That doesn't mean we can't make choices - it means we could choose differently were other options available to our minds."
What Henick may be expressing is that individuals with mental illness could be deemed to lack capacity in ways that are not readily appreciated by either patients or attending physicians. This may constitute a serious problem for drafters of legislation pertaining to PAD in the context of mental illness. If these types of public concerns regarding capacity imply that we are not able to assess whether a particular treatment is acceptable to an individual, or, for that matter, whether a particular condition is irremediable, it may be difficult to conceptualize how we are to make such a serious and irreversible decision as the choice to end one's life, or how we are to address such contentious decisions in a fulsome legislative framework applicable to all Canadians.
Grievous and Irremediable Suffering in the Context of Physician Assisted Dying
Part of the contention surrounding the implementation of legislation pertaining to PAD may relate to the difficulty in assessing so many simultaneous concepts that connote subjective experience, such as what constitutes grievous and irremediable suffering, or what informed consent to PAD might look like. For example, the Panel, after speaking with various medical professionals, noted that the terms "grievous" and "irremediable", may present difficulty when we seek to establish a definitional consensus, since the views of medical practitioners are bound to differ. The Panel found that, as much as members of the medical profession would like to maintain some degree of clinical judgment when it comes to assessing what constitutes a grievous and irremediable condition, some guidance, such as professional standards, would be welcome in order to assist in rendering decisions regarding such concepts.
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With respect to whether a condition can be deemed "irremediable", the CPA notes that the term should not be synonymous with "incurable", since this would connote too low a threshold, potentially rendering all chronic mental illness irremediable and within the ambit of legislation permitting PAD.[19] Surely, we do not contemplate an individual with sub-clinical or transient mental health issues as being the target demographic for potential access to PAD. Conversely, the CPA indicates that if the term "irremediable" were to be deemed to mean "untreatable", then very few psychiatric conditions would fall into this category.[20] Observations such as this illustrate how difficult it is to understand what might constitute a subjective experience of grievous and irremediable suffering. That the notion of mental illness is situated along a scale of severity and nuanced characteristics implies the need for informed judgment and consideration rather than uniform, inflexible criteria. This, in turn, leaves a great deal of judgment in the hands of decision makers in the course of assessing requests for PAD.
When it comes to the notion of suffering, the Committee points out that the Supreme Court did not define the term so as to exclude psychological suffering in the Carter decision. The Committee notes that, according to some, psychological suffering can be as severe as physical suffering.[21] Of course, the Committee acknowledges that what an individual deems enduring or intolerable could be prompted by a particular mental illness, but the Committee places its confidence in health care professionals to proceed with appropriate caution in order to protect the vulnerable. The Committee recommends that psychological suffering that is enduring and intolerable to the individual in the circumstances of his or her condition should be recognized as a criterion for access to PAD.
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Importantly, the CPA informed the Panel that "[t]hings like unstable housing, financial instability, [and] 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."[23] This is, arguably, the most significant point of agreement between the Panel, the Committee, and others.
Observations such as those noted above underscore the need to understand subjective experiences of grievous and irremediable suffering not only through the lens of individuals but through a societal paradigm with broader implications for how we collectively assess the language of suffering and whether Canada is adequately meeting the needs of vulnerable people. Viewed in this way, a national discussion is an integral facet of an informed and compassionate approach to PAD in Canada.
Consent and Capacity in the Context of Physician Assisted Dying
Capacity is a poorly understood term in the legal, medical and public lexicon, rendering it a difficult component to conceptualize in the course of addressing access to PAD. There are a multitude of conditions that might affect capacity or render an individual vulnerable, and it is important that we consider the interplay between capacity and mental illness when deciding which individuals may access PAD. Legally speaking, there is no "test" or single definition for capacity. Instead, we apply a set of criteria to determine whether an individual can be deemed to have the requisite capacity or competence for a particular task or decision.
Of course, physicians routinely make difficult decisions regarding capacity in other medical scenarios, and the Panel notes widely divergent views on how capacity and undue influence might be addressed in the context of PAD.[24] The CPA recommended to the Panel that, whether mental illness is the underlying issue prompting the request for PAD, or comorbid with another condition, psychiatrists should be directly involved in assessing the likelihood that mental illness is impairing capacity.[25] Again, this places a weighty task on the shoulders of physicians in Canada.
With regard to consent, the Committee observes that there appears to be a general consensus that requests for access to PAD must be voluntary and sufficiently informed.[26] Consequently, the Committee advocates for an increase in supports and services in order to reduce vulnerabilities in individuals who might seek access to PAD. While recognizing that issues such as isolation and poverty are not going to be resolved overnight, the Committee believes that "[s]afeguards and oversight are the best way to ensure informed consent and voluntariness while not refusing access to individuals who may be experiencing intolerable and enduring suffering."[27] The Committee thus places a high onus on health care providers in evaluating a request for PAD, and believes that such individuals can screen for factors that might affect consent, such as undue influence or feelings of being a burden on others. The Committee recommends that the capacity of an individual to provide informed consent to PAD should be assessed using the existing medical framework, with a particular emphasis on screening for potential vulnerabilities.
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Medical Opinion
Considering that the onus for assessing requests for and administering PAD will largely fall on physicians, it is important to note how the medical profession views the current status of PAD in Canada. After consulting broadly with doctors and with provincial and territorial medical associations and stakeholders, the Canadian Medical Association ("CMA") released a principles-based response to the Carter decision in January 2015 in order to guide legislation regarding PAD in Canada.[29] The CMA notes that it is the practicing physician that will ultimately be tasked with carrying out the new legislation. According to the CMA, the appropriateness of a particular intervention is an assessment to be made by a doctor and patient in tandem, supported by the physician's knowledge of acceptable and available standards of care and interventions.[30] One of the requirements the CMA advocates for is that the attending physician ensure that all reasonable treatment options have been considered to treat both physical and psychological suffering.[31] Such options might include psychiatric assessment, addiction counselling, and other specialty services.
When assessing mental health as an integral component of medical health, the fact that the Canadian Mental Health Association ("CMHA") states plainly on their website that "all mental illnesses can be treated"
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certainly leaves a great deal of room for speculation regarding whether a mental illness alone can be covered within the ambit of an irremediable condition. If we are not able to define relevant terms in the field of medicine and, in particular, mental health, it may be difficult to draw legal parameters around these concepts. This leads to the presumption that a great onus will be placed on health care professionals in the application of the new legislation, and that medical judgment will take on a heightened role in the lives of Canadians. Medical professionals have not expressly set themselves out as the gatekeepers to an autonomous death, but such a function may be imposed on them by virtue of the impending legislation. It is unsurprising, then, that medical professionals may be apprehensive about this new role.
In analyzing the confluence of mental health issues and other medical conditions, Olivia Anne Duffy cites research indicating that depressive symptoms are frequently associated with requests for PAD and that, relatedly, depression may cause cognitive impairment of executive function and hinder decision making capacity.[33] Duffy points out that, traditionally, psychiatrists have conceptualized suicide as a direct result of psychopathology rather than rational decision making, and wonders how a reframing of the notion of suicide from being an irrational act to being a rational choice will impact the professional and public perception of psychiatry.[34] Duffy also expresses concern that experiences such as irremediable suffering are not clearly defined medical terms, and that "[s]uch legislation implies that physicians are responsible for assessing when suffering is appropriate for PAD. However, research seems to indicate that the burden of suffering is fundamentally subjective".[35] Our current understanding of issues such as capacity and suffering, then, may be cause for concern and uncertainty on the part of physicians in the context of PAD.
Conclusions
In the lead-up to the new legislation governing PAD, we are forced to confront the vague dividing line between pathology and secondary psychosocial issues; between autonomy and vulnerability; and between precedents and antecedents, to name but a few relevant dichotomies. We are also pushed to assess whether our current supports and services are sufficient for individuals grappling with mental illness and the desire to die. A significant part of what prompts us to grant individuals the constitutional freedom to dictate how their lives will unfold and, inevitably, conclude is the notion of subjectivity of human experience and the dignity we accord to each person's life story. It is not possible to engage in debate on these topics without engendering emotional and vastly divergent opinions. As a foundational tactic, then, a good starting point may be to identify certain basic principles on which we can agree.
From an analysis of the relevant medical, legal, ethical and public opinions there has emerged a rare consensus: Canadians with mental illness must have access to adequate supports and services such that PAD is not seen as being an alternative to proper care. As the Panel puts it, when it comes to addressing the control we accord individuals over how their lives will end, we must ensure that such choices are "...informed, and addressed with consummate skill, compassion and respect."[36] These are attributes that we can employ regardless of the laws we create, or who we might deem to be subject to them. Though we will undoubtedly continue to debate the proper precursors for PAD, we can also consider how to extend the best possible support system to health care practitioners and patients alike.
