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

Foreword

As will be evident from the range and complexity of issues described in this report, responding to the Court's decision in Carter requires of our governments and medical regulators a great many deliberations and decisions. Among the competing claims and arguments to be settled in these determinations, none are more fundamental than the single issue identified by the Supreme Court of Canada as central to its adjudication; namely, the balancing of competing values of great importance. "On the one hand," the Court wrote, "stands the autonomy and dignity of a competent adult who seeks death as a response to a grievous and irremediable medical condition. On the other stands the sanctity of life and the need to protect the vulnerable."

As ideological positions, the assertion of personal autonomy and the work of protecting the fragile among us appeared a priori irreconcilable in the debates leading up to the Carter decision. But closer attention to the values at stake in these debates may help our country to move forward at this time of design and implementation following the Court's ruling. Taking our lead from the Court that neither of these values is paramount, we may discover that in relation to physician-assisted dying, they are in fact complementary and inseparable.

As a cornerstone principle of medical ethics and practice, autonomy is understood as the exercise of control over one's bodily integrity–the right, as Mr. Justice Sopinka wrote in Rodriguez, "to choose how one's body will be dealt with." Thus, as Carter reminds us, medical treatments can be accepted or refused, or their withdrawal required by any person with capacity to make such decisions. This, at minimum, is what respect for autonomy demands.

The individual at the heart of the Carter decision, Gloria Taylor, was described at trial as "a strong and independent person" who lived "a busy life" with the satisfactions of work, a loving and present family, and meaningful community engagement. From the trial records, and from personal accounts heard by the Panel, it is clear that Ms. Taylor was loved, respected, supported and secure-a woman who faced the certainty of her death with clarity and candour. In the circumstances of Ms. Taylor's life, the Court found her request for physician-assisted death to be a fully autonomous and personal choice.

At the same time, among the many perspectives presented to the Panel were those that offered a stark reminder that not all Canadians are so securely positioned within the frameworks we understand today as social determinants of health. The practice of physician-assisted death will be delivered within the context of all that we currently know about the impacts on health and well-being of such conditions as housing, food and income insecurity; discrimination; violence; isolation and lack of needed supports. We know these and other factors to be highly detrimental to health and well-being, and to be the primary contributors to social vulnerability.

Vulnerability, in and of itself, must not preclude the expression and recognition of an autonomous choice to pursue physician-assisted death. Persons far less robustly situated than Ms. Taylor have the same right "to choose how their bodies will be dealt with." Yet vulnerability, as signaled by the Court in Carter, may impede or distort the expression of autonomy, when choices are coerced or induced. This is the point where respect for autonomy intersects with the protection of vulnerable persons.

It is neither the Panel's will nor authority to prescribe the mechanism for attending to this intersection in compliance with the Carter decision and with due respect for the rights and protections of the Charter more broadly. It is, however, required by our mandate to convey to the best of our abilities what experts, stakeholders and citizens at large have told us about the delicate calculation of what our moral and social obligations are when an individual who bears intolerable suffering caused by a grievous and irremediable medical condition desires physician-assisted death.

Through the course of our consultations, we have been reminded of the deeply human desire to ease the suffering of others, and of the extent to which our obligations are engaged in circumstances where a person sees death as preferable to continued intolerable living. We have heard that these obligations arise both from the commitment and necessity to respect autonomy, and from the recognition and understanding of vulnerability. Moreover, we know that suffering has many forms, which take hold of a person in ways that are sometimes, but not always, within our human capacity to address.

Respecting autonomy, it seems, commits us to grapple with vulnerability. And grappling with vulnerability, it seems, calls for us to tease apart the tangled roots of suffering in order to discern between an autonomous claim and a cry of unmet need.

An unmet need the Panel heard about repeatedly and consistently was that of palliative care. With the advent of physician-assisted death, it has become critically, even urgently, apparent that Canadian society must address its deficiencies in providing quality palliative care for individuals living with life threatening and life limiting conditions. Our country must rise to this challenge, as no Canadian approaching end of life should face the cruel choice between physician-assisted death and living with intolerable, enduring suffering in the absence of compassionate, comprehensive quality care.

As the Panel concludes its term of service to the government of Canada, we offer the following brief distillations of our major points of learning and reflection on the larger issues at play in the days ahead.

A. Jurisdictional Realities

Physician-assisted dying raises questions of jurisdiction in Canada's constitutional system, where legislative responsibilities are distributed between Parliament and the provinces. Physician-assisted death implicates both criminal and health law. The power over criminal law belongs exclusively to Parliament, while health law is an area of concurrent jurisdiction between the federal and provincial legislative assemblies. This division of powers is outlined in greater detail in this report.

Groups and experts appearing before the Panel were generally mindful of the fact that many aspects of the provision of health care–including hospitals, health insurance and the regulation of health care professions–are within provincial jurisdiction. We were also reminded by the Supreme Court in Carter that there is no federal regulation of other life and death decision making where individual assessments of decisional capacity are required, including decisions that are currently governed by advance directives or substitute decision makers. These circumstances are sometimes provincially regulated.

The Supreme Court has indicated in the Carter decision that, depending on the focus of legislation, aspects of physician-assisted death could be validly legislated by both levels of government. The Supreme Court invited both Parliament and provincial legislatures to respond by enacting legislation, should they choose to do so. Certain groups appearing before the Panel indicated that a guiding role from the federal government would be useful in order to avoid a patchwork of regimes regulating physician-assisted death. Others have advocated restraint on the part of Parliament and a profound respect for provincial or territorial decisions on this issue.

If the federal government eventually chooses to play a leadership role in the matter of physician-assisted death, it should ideally embrace the principle of cooperative federalism, discussed by the Supreme Court in other decisions. This principle rests on a spirit of collaboration between the federal, provincial and territorial governments. Since physician-assisted death is a topic on which both Parliament and provincial legislatures can legislate, this could constitute a meaningful exercise of intergovernmental cooperation, such as the one our current Canadian government has recently called for. The opportunity for collaboration may be even greater with the province of Québec, where profound reflections on the issue have already been carried out and resulted in the province's legislation providing for medical aid in dying.

B. Questions of Definition

The Carter decision is clear that physician-assisted death must be available for persons who experience enduring and intolerable suffering as a result of a grievous and irremediable medical condition. Under the terms of our mandate, the Panel invited medical authorities, civil society organizations and Canadians at large to share their understanding of how each of the elements of this declaration should be interpreted and determined.

The various viewpoints and proposals presented throughout our consultations on many questions of definition and determination are summarized in the pages of this report. Of these, perhaps the most wide-ranging discussions have centered upon the issue of what should be considered a "grievous and irremediable" medical condition consistent with the Court's judgment. The Panel heard from many groups and individuals who cautioned against any interpretive overlay upon this central criterion, indicating that individuals and their physicians are best placed to know what it means to have a grievous and irremediable medical condition, and to make the deeply personal decisions that must be made in contemplating physician-assisted death. We are mindful as well, that regimes that have made assisted dying available for several years in the Benelux countries have done so without imposing prognostic or diagnostic limitations on inclusion criteria.

While the Panel is mindful that the Supreme Court itself did not define or restrict these terms in the Carter decision and that it would be very difficult to define them precisely in a law, some groups and individuals have argued for the necessity of a more fully descriptive articulation of what is meant by "grievous and irremediable" in the context of physician-assisted death. Various options were suggested and comparisons made: for example, that Canada consider an Oregon model, which requires a life expectancy of no more than six months; or a Québec model, which requires a serious, incurable illness in an advanced stage of irreversible decline in capability at the end of life. These and other formulations reflect the sentiment held by some that a clear and coherent approach would inspire confidence and build a shared understanding that might be more difficult to achieve if individual patients and physicians variably interpret the "grievous and irremediable" threshold.

C. Philosophies of Care

During the time of our assignment to this Panel, both in Canada and beyond our borders, we have been privileged to encounter a great many exceptional individuals, dedicated as learners, scholars and practitioners to the care and service of medicine. It has been our impression that every one of these professionals adheres to the principle of respect for patients as a core value. While there are differences, to be sure, about if and where physician-assisted dying falls along the continuum of care, there is no dispute that the expression of a wish to die does not mitigate the duty to understand the language of suffering and to respond with compassion, integrity and skill.

Those who feel physician-assisted death should be part of the continuum of care see it as an important choice for people facing grievous and irremediable medical conditions that cause enduring and intolerable suffering. From this vantage point, physician-assisted death is a critical option of last resort that people might choose when other measures have failed or are unacceptable to them; for example, when further treatment feels unduly burdensome or conflicts with their personal values. From this perspective, declining or disputing an individual's autonomous request for an assisted death could be construed as abandonment at a critical time of need.

The philosophical counterpoint to this perspective sees physician-assisted death taking medicine down a unique pathway, no longer marked by attempts to help people live longer, live better or live less encumbered by suffering. This outlook characterizes physician-assisted death as a means of ensuring that the person will no longer suffer with the burden of being alive, and that the task of ending life is not part of the continuum of medical care. The field of palliative care is largely dominated by this perspective, given its focus on responding to physical, psychological, existential and spiritual distress for people living with life threatening and life-limiting conditions. Palliative care employs every available measure and intuition to address the many and variable forms of suffering, without hastening or postponing death. The Panel heard that this approach is consistent with a commitment to non-abandonment and the provision of continuous care until the time of physician-assisted or natural death.

D. Opportunity for Leadership

All stakeholders–interveners, medical authorities, experts and public alike–who engaged with the Panel recognized the importance of effective oversight. We learned that Canadian society has a real opportunity to establish itself as a world leader by establishing a robust, modern and innovative oversight system that builds upon the lessons of other jurisdictions currently offering physician-assisted death while setting the standard for those to follow.

Each jurisdiction we visited and studied has grappled with the issue of sound data collection, effective system monitoring and reporting practices. Based on what we heard, many stakeholders in various jurisdictions were not entirely satisfied with how their oversight mechanisms operated. While some have established good monitoring structures and have efficient research incentives in place, the limitations of data collection restrict what insights can be gleaned within constituencies practicing physician-assisted dying. Other jurisdictions appear to have strong data collection but the monitoring mechanisms in place are perceived by some as biased, hence undermining stakeholder confidence in their reporting.

Our study missions and consultations have revealed that serious consideration and time should be devoted to determining the information that needs to be collected. We often heard about the importance of being able not only to keep track of the number of physician-assisted deaths and the underlying medical conditions, but also to enable in-depth analysis of the sources of suffering that lead individuals to seek physician-assisted death.

With open data comes the opportunity for Canadians to make a clear statement that we believe in transparency and accountability in relation to physician-assisted death. It also invites us to reiterate our commitment to ensure that steps taken in the name of autonomy do not undermine security for those who are vulnerable, and conversely, that safeguards designed to protect vulnerable persons do not impede the rights of suffering Canadians seeking death-hastening alternatives.

Should an agency or agencies be mandated to produce annual reports on physician-assisted dying activities in Canada? This is not a question that is within our mandate to address, but the suggestions that we received across the spectrum of views on the issue indicated that accessible public reports are key to effective oversight. Through our work we have come to understand that to be credible in the public eye, oversight must be led by trusted individuals, whose work is open, transparent, accountable and rooted in scientific rigor and evidence.

We are mindful of jurisdictional responsibilities as these relate to healthcare services. That is why we want to stress the importance for all governments across Canada to collaborate in establishing strong and efficient oversight, rather than working within silos. Collaboration would help establish datasets that will allow for interprovincial comparisons, stronger analyses and more robust results guiding future policy refinements and direction. Increased collaboration is also likely to lead to a greater degree of consistency in policies across Canada, which is something we often heard would be valued throughout our consultations.

As Canada prepares to go forward with physician-assisted dying, our governments, regulators and civil society have a unique opportunity to learn from each other and to get it right.

E. Conclusion

This report represents the culmination of months of labour and reflection, not merely by ourselves and our Secretariat team, but by many thousands of Canadians and international colleagues. For our part, what resonates most powerfully from all that we have heard are the human sounds of need and care. There have been profoundly intimate moments, painful moments and moments of insight and revelation. Canadians have spoken to us of sorrow and loss, of faith and yearning, of the hunger for justice and the love of humankind. They have shared their vision for what our Supreme Court intended and has rendered possible. They have shared their anguish and their fierce hopes. They have challenged us to earn their trust, and to rise above our own individual histories and inclinations. They have reminded us that the words on the pages of the Court's judgment are so much more than a new law. And they have called upon all of us as Canadians to understand that the promise and the legacy of the Carter decision must unfold in accordance with our shared and cherished values of caring, compassion and respect for all.

The implementation of a regime for physician-assisted death is not a simple matter of choosing a template and setting it in motion. The Court spoke of "competing values of great importance," entrusting legislators with "a difficult task," involving "complex issues of social policy and a number of competing societal values."

It is with a profound sense of humility, along with deep and abiding respect for the Supreme Court of Canada and of Parliament, that we submit our report. We sincerely hope that it will help inform our country's decisions and actions in responding to the Carter ruling. As we take seriously our responsibilities to those whose suffering is so dire that they wish to die, so we must take seriously the insights, perspectives and considered judgment of all who have come forward in good faith in this consultation to assist the Panel in our task.

To the best of our abilities, this, respectfully, is what we have done.