Consultations on Physician-Assisted Dying - Summary of Results and Key Findings

Annex F: Summary of Document Submissions Received

15 December 2015

Executive Summary

Thousands of Canadians responded to the invitation from the External Panel on Options for a Legislative Response to Carter v. Canada (the Panel) to provide input. There were three ways to contribute: by answering the questions in the Panel's online Issue Book; by preparing a formal submission; and by participating in the direct invitation-only consultations. This document summarizes the more than 300 submissions received between August 2 and October 19, 2015.

The submissions varied in virtually every conceivable way: in length, content, tone and style. Some submissions were full-length books and scholarly theses; others were single sentences expressing informal, heartfelt opinions. Many statements described the end-of-life experiences of family members or friends. Others referenced religious texts, philosophers or scholars. On many key points, such as whether Canada should legalize physician-assisted dying, diametrically opposed views were expressed. Many people see the relevant issues in absolutist terms: as a reflection of Canada's moral and ethical principles.

While the opinions expressed seem irreconcilable, the submissions indicate a clear preoccupation with several key themes, issues and questions inspired by the Supreme Court's decision. This report focuses on these in an attempt to summarize the remarkable and valuable outpouring of opinions and thoughts from Canadians.

Part 1: Overarching Issues

The largest and most divisive issue raised and considered in the submissions is whether Canada should amend federal law and legalize physician-assisted dying. Most submissions express an absolutist view: that physician-assisted dying must be authorized or must never be authorized. And many submissions back up these views with articulate, sophisticated and well-researched arguments.

Many submissions call for the Government of Canada to override the Supreme Court's ruling by invoking Section 33 of the Charter—the so-called "notwithstanding clause." Some of the submissions that recommend this course of action do not take a stand on physician-assisted dying, but instead express concerns that the deadline imposed by the Supreme Court does not allow for sufficient time to identify, develop and implement an effective legislative solution. Many submissions criticize the Supreme Court of Canada for failing to define key terms, such as "competent adult" and "grievous and irremediable medical condition;" some propose definitions of their own, or suggest entirely different terms.

While most submissions call for some type of action from Parliament, ideas about the structure of a regulatory regime for physician-assisted dying vary widely. Many submissions insist that the regime be federal and feature precise standards, eligibility criteria, and reporting and review requirements that would apply across the country. Other submissions call for provincial regimes aligned with regional considerations. There is also significant diversity of opinion about the roles that health-care and legal professionals should play in a physician-assisted dying regime. Some submissions indicate that physician-assisted dying should require the authorization of a special panel that includes a judge, for instance. Other submissions indicate that physician-assisted dying authorization should require only the consent of two independent physicians.

The third most-divisive issue in the submissions involves the conscience rights of health-care workers and institutions. Many submissions indicate that explicit legal protection is required to ensure that health-care workers who refuse to participate in physician-assisted dying do not suffer any consequences as a result. A key point is whether physicians who reject physician- assisted dying should be legally required to refer patients elsewhere for the service; again, no consensus exists on this point. Similarly, opinions are divided on whether health-care institutions, such as hospitals, should be required to accommodate requests for physician- assisted dying. Some submissions suggest that physician-assisted dying be offered only in facilities separate from traditional health-care institutions.

A final issue commonly raised is the relationship between physician-assisted dying and palliative care. In fact, perhaps the most commonly expressed view is that Canadians must have greater access to high-quality palliative care. Many submissions suggest that limited access to such care is a major contributing factor to demand for physician-assisted dying. Another concern commonly expressed is that physician-assisted dying and palliative care must be separate and distinct; that physician-assisted dying should never take place in a palliative-care facility; and that the professionals involved in palliative care must never be required or coerced into participating in physician-assisted dying.

Part 2: Risks

The submissions clearly indicate that the most significant risk is that of wrongful death. The most commonly cited cause of potential wrongful death is one or more mistakes in process: that the process will fail to take into account people who change their mind after previously consenting to physician-assisted dying, for instance, or that someone with power of attorney over someone's medical care will not act in the person's best interest. Several submissions point out the potential for conflict of interest if the person with power of attorney also stands to benefit (e.g. through inheritance) from someone's death.

Many submissions contend that legalizing physician-assisted dying will lead to increased mistreatment of vulnerable groups, such as the aged and persons with mental or physical disabilities. In particular, some see significant risk in the episodic nature of many mental illnesses; someone suffering from an acute but temporary bout of mental illness will request and obtain physician-assisted dying.

Some submissions point to a risk that is difficult to measure: a loss of respect for the elderly, those with disabilities and other vulnerable persons. An idea often expressed is that when death is considered a way to avert potential future suffering and its consequences—for both the individuals and their friends and loved ones—vulnerable groups are at increased risk of harm.

Another risk many submissions identify is that physician-assisted dying could have negative impacts on the health-care system: that it would increase moral distress and burnout among health-care workers who believe in the primacy of life and in the tenet of "first, do no harm." At least one submission identifies potentially increased risks of legal liability for nurses who assist or counsel end-of-life patients.

Many submissions explore the links between physician-assisted dying and palliative care. Some suggest that legalizing physician-assisted dying will have inevitable and harmful effects on the quality and availability of palliative care. A few submissions predict that fear of physician- assisted dying would lead to late referrals and decreased access to palliative care. A common idea expressed is that increasing the quality and availability of palliative care would eliminate (or all but eliminate) demand for physician-assisted dying.

Many of the perceived risks relate directly to physician-assisted dying processes, which have yet to be developed. Inadequate training of those involved in physician-assisted dying could lead to negative consequences, for instance, and more permissive jurisdictions might fail to closely follow legal requirements. Some submissions assume that physician-assisted dying processes will require contemporaneous consent, which will not be possible in some cases due to a deterioration of a person's health.

The concept of the so-called slippery slope—that legalizing physician-assisted dying under very limited circumstances would eventually lead to significantly widened eligibility —is a topic in many submissions. Some claim that the data from jurisdictions with physician-assisted dying regimes (Netherlands, Belgium, Switzerland and Oregon) prove the slippery-slope theory; others claim that these data disprove the theory.

At least one submission suggests that Health Canada's market-authorization procedure does not currently permit the use of pharmaceuticals in the doses needed for physician-assisted dying. If not addressed in legislation, this could expose health-care workers to increased legal liability.

A few submissions point toward risks associated with developing—or not developing—a regulatory regime. Overly strict regulations could jeopardize patient autonomy, for instance, while policies that prioritize patient autonomy could increase harm to patients, their families and society. Finally, some submissions contend that failure to develop legislation would create a legal vacuum and lead to inconsistent practices and policies.

Part 3: Safeguards

Including explicit safeguards in the legislation and subsequent regulations was a common topic in the submissions. Many described the importance of clear definitions of key terms, such as terminal illness and patient consent, along with prescribed processes and procedures. Some submissions suggest that the law clarify that physician-assisted dying is not medicine but an exception to laws against homicide.

As noted earlier, perceptions differ on the relationship between jurisdiction over physician- assisted dying and safety. Some believe that it would be safer if physician-assisted dying were a criminal matter under federal jurisdiction, while others believe physician-assisted dying would be safer under provincial jurisdiction.

An idea common to many submissions is the need for an independent agency (or agencies) to provide oversight. Some call for this body to have an precursory role—to screen applications for physician-assisted dying—and others call for it to have a subsequent role—to review past cases of physician-assisted dying, identify trends and issues, and recommend policy and procedural improvements. A few submissions called for a judicial review of physician-assisted dying every three years.

There is similarly no consensus in the submissions on the composition of these agencies; some call for the involvement of at least one federal-court judge, while others would limit membership to physicians. Several submissions point toward Ontario's Consent and Capacity Board as an example of a model review panel.

The most common area identified for safeguards is the physician-assisted dying process: the steps an individual would take to access the service. The variety of safeguards suggested is vast. Many submissions call for two assessments of the patient by independent physicians. Others call for assessments by a multi-disciplinary, inter-professional team comprised of at least one physician, one psychiatrist and one other expert, such as a social worker.

Safeguards related to consent also varied considerably. Some submissions indicate that consent be required both in advance and immediately before death Other submissions indicate that consent immediately before death (also known as contemporaneous consent) will be impossible in cases when a person's condition has deteriorated past a certain point.

A related concern in many submissions is that of capacity: a person's ability to make a clear choice Many submissions from mental-health experts point toward the lack of scientific standards to accurately and consistently assess capacity.

A safeguard in many submissions relates to documentation and reporting: that those involved in physician-assisted dying procedures record specific information about requests for physician- assisted dying, along with counselling efforts, consent procedures and other relevant interactions. Many indicate that physicians and health-care workers be required to report all requests for physician-assisted dying.

Some submissions suggest an effective safeguard would be to clarify the roles and responsibilities of everyone involved in physician-assisted dying—from physicians and other health-care professionals to social workers and counsellors. A few submissions suggest that a new licenced position be created—a so-called euthanist or euthanologist—who would have primary responsibility for the procedure. Some even suggest that physicians not be authorized to provide physician-assisted dying.

A key point common to many submissions from the health-care professions is the need to protect the conscience rights of health care workers. Some submissions indicate that health- care workers must be able to recuse themselves completely from physician-assisted dying—without consequences—and not be required to participate or even to refer a patient for physician-assisted dying. Some of these submissions describe a system of self-referral rather than one compelling non-consenting physicians to refer patients to other physicians. Other submissions adopt the opposite view; some contend that conscience rights would have a negative impact on access to physician-assisted dying. A few submissions indicate that health- care workers should not be able to recuse themselves and that publicly funded institutions (e.g. hospitals) be required to provide this service.

A call for greater awareness and education about end-of-life issues is also common to many submissions. Along with raising public awareness, there are calls for targeted training for physicians and health-care professionals.

4. Eligibility Criteria

Most submissions explore issues related to eligibility criteria: the qualifications someone would have to meet to access physician-assisted dying. The most common criterion in the submissions is the approval of two independent physicians. Also common are restrictions based on age or on the nature of illness: some indicate that physician-assisted dying should be available only to those suffering from specific, terminal diseases; other submissions use descriptors such as egregious, debilitating and hopeless. Submissions for and against physician-assisted dying cite the absence of empirical measures for suffering or pain to back up their views.

Many of the criteria in the submissions are much more nuanced, such as insisting that physician- assisted dying be available only after a course of palliative care, or only after a patient refuses to agree to a high-quality palliative care plan. There are also many nuances in the submissions related to criteria used to assess competency and mental health. Some submissions indicate that physician-assisted dying be made available to those suffering from mental illness; others indicate the opposite. Some submissions call for assessments by psychiatrists; others call for such assessments only if there is reason to believe the person is suffering from mental illness. At least one submission suggests that the assessment should consider not only physical and mental health, but also the circumstances of close friends and family members.

Another point touched on in many submissions is whether to recognize requests for physician- assisted dying made through advance directives—signed statements directing one's medical treatment once a person's health declines to a specific level. Again, diametrically opposed views are expressed.

In many cases, submissions otherwise critical of legalizing physician-assisted dying backed up these views by describing the difficulty (some claimed impossibility) of developing criteria that would mitigate the potential risks. One submission, for instance, points out that the criteria of a physician-assisted dying regime necessarily define the characteristics of a life worth living, and that decisions about whether to keep sick people alive will be made by administrators likely to be influenced by other concerns, such as the cost of care.

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