A Message from the Editor-in-Chief

This editorial is written as Canadian society has just under 7 years of experience with Medical Assistance in Dying (MAiD). Bill C-14 was introduced by the government of Canada in June 2016 in response to the Supreme Court of Canada (SCC) ruling striking down the prohibition of physician-assisted dying in the case known as Carter vs. Canada. Previously in 1993, Sue Rogriguez, suffering from a terminal disease, Amyotrophic Lateral Sclerosis (ALS), argued at the SCC that the prohibition of access to assisted dying violated her rights under the Canadian Charter of Rights and Freedoms. The SCC ruled against (5-4) Rodriguez, and in February of 1994, she took her own life with the assistance of an anonymous physician. In the 22-year period between Rodriguez’s suicide and the legislation enabling MAiD, Canadians debated the merits of MAiD. Some of the arguments supporting MAiD were based on the recognition of individual autonomy and self-determination, amelioration of suffering, compassion, patient-centred care, legal clarity, and the reduction of medical expenditures that promoted both a poor-quality life and a poor-quality of death. The fears surrounding MAiD were religious objections, the potential for abuse and coercion, erosion of trust in the medical profession, diminishment of the availability of palliative care, and the “slippery slope” leading to lives being taken against their will.

It is instructive for citizens, health leaders, and providers to think about the time and deliberations necessary for a government to arrive at a resolution of a contested social and political issue like medically assisted dying. The Netherlands was the first country to introduce medically assisted dying in 2002, 14 years before Canada. These types of issues are not necessarily fully resolved as there is a continuing debate in regard to eligibility to MAiD due to age exclusion, mature minors under the age of 18, mental illness exclusion, and advance directives among several others.

This edition of Healthcare Management Forum is dedicated to articles reflecting on the experiences to date with MAiD and the lessons shared by our authors of what worked well, where the gaps were, and what the opportunities are for improving Canadians’ experiences with MAiD in the future. Canadians should feel confident that full and open discourse that is civil and respectful, informed by high quality evidence and guided by values represented in society, can move the country towards an improved humanity.

We are truly grateful for the vision of Jennifer Gibson, PhD, in the creation of this edition. Affiliated with the University of Toronto, she co-chaired the provincial-territorial expert advisory group on physician-assisted dying in 2015, and until 2018, she was the co-chair of the expert panel on medical assistance in dying for the Council of Canadian Academies (CCA). She also chaired the working group on advance requests for MAiD. These experiences and her disciplinary background in ethics and health policy means that she brings a unique lens to this complicated and evolving field of legislation and its direct implications on the families, caregivers, clinicians, and other health leaders who support people who are suffering. Jennifer carefully selected and worked with authors to offer our readers a snapshot of some of the very important issues being discussed.

Frolic in her article Leader as CARER: An ecological approach to designing a resilient MAiD program takes us on a journey of personal experience after being thrown into the “deep end” of developing a MAiD program at a hospital after Canada’s MAiD law came into effect. Frolic describes the evolution of the MAiD program being shaped by a “care ecology” approach which nurtures resilience and sustainability to support healthcare providers. Frolic identifies and reinforces the importance of leadership to enable a supportive care ecology. Frolic identifies key leadership characteristics that include entrepreneurial enthusiasm, understanding that “self-care” is part of the solution, and an organization’s commitment to creating a network of relationships, systems, resources, and processes that are in support of care providers. Frolic labels this the care ecology of MAiD practice. Having been successful in building the MAiD program on this foundation, health leaders are encouraged to think about the application of this approach to other high stress work settings.

Perron and co-authors in Support structures for healthcare professionals involved in medical assistance in dying: Quebec, Canada, and the international landscape provides readers with a description of the approach in Quebec to organize Interdisciplinary Support Groups (ISGs) to support health providers in the clinical, administrative, legal, and ethical practice of MAiD. The authors used a mixed on-line survey method to collect data on the (ISGs or equivalent) support structures in Quebec, those across Canada and globally, to compare their respective strengths and weaknesses and contrast those to findings in the grey and scientific literatures. In carrying out their study, the authors prepare a summarized inventory of support structures and their characteristics that health leaders and providers will find as an invaluable resource. Health leaders will also appreciate the lessons learned on how to optimally address the issues of role, mandate, and responsibility of ISGs or their equivalent to support their citizens and health providers.

The passage of MAiD in 2016 by the Parliament of Canada raised the awareness that there were three vexatious aspects of MAiD that required further study: first, the application of MAiD by mature minors; second, the use of advance directives; and third, requests for MAiD where mental disorder is the underlying condition. Recognizing that these issues would be problematic after the passage of MAiD-enabling legislation, the Government of Canada asked the Council of Canadian Academies to assess the state of knowledge on the three topics. In their article MAiD as a case study in evidence for policy making: An account of the CCA assessment on medical assistance in dying, Meslin and his co-author describe how the CCA tackled the challenge by striking a multidisciplinary expert panel to interrogate the issues through different forms of evidence. The work of the CCA became part of the larger conversation about MAiD in Canada, and the authors reflect on how this influenced and affected the public’s and leaders’ thinking. Citizens, health leaders, and providers are encouraged to think about how, what appear to be recalcitrant issues of policy, can be researched, deliberated, and assessed through a state of knowledge review through a multidisciplinary approach facilitated through dialogue to assess evidence to inform the questions being asked.

Health leaders and providers often face challenges in which they must choose among a conflicting set of objectives that bring different ethical principles into conflict. In the Lessons learned about MAiD from a Catholic healthcare perspective, Self reflects on balancing the rights surrounding MAiD and how these, at the outset, appear to be irreconcilable. The contemporary penchant for polarization of social and political issues in the public space presented Covenant Health and its family of institutions with a significant challenge. Self describes the experience of how a Catholic healthcare organization, which does not provide MAiD and has on average one person per week request access to MAiD since its inception, has come to address this issue successfully and respectfully. Self underlines the importance of openly and explicitly raising and encouraging the discussion of the issue of ethical conflicts and proactively preparing the organization for MAiD. Leaders can easily translate these important approaches and lessons to other conflicted situations that will confront them in the future. Self provides health leaders with the approach and means by which to tackle the next set of issues arising from an expansion of MAiD as well as other vexatious issues and challenges that are sure to arise.

Lees and co-authors discuss the unique and special considerations that must be considered with geriatric syndromes such as frailty, and cognitive or functional impairment. The authors focus on four kinds of gaps in care that are of particular concern in geriatric syndromes, access to medical care, appropriate advance planning, social supports, and funding for supportive care. Some critics of MAiD have made the point that the inability of the public healthcare system to provide access to services and supports is forcing some to choose MAiD because of intolerable circumstances that arise because of a lack of support and access. Lees and co-authors point out that the expansion of MAiD creates an urgency in addressing these gaps in care. Health leaders and providers need to be confident that those who chose MAiD are choosing to die and are making the choice based on intolerable suffering despite adequate access to appropriate means of management and palliation, rather than having any other accessible option to end suffering. This article offers health leaders with advice that would help ensure that careful and adequate consideration has been given to meaningful and respectful choices and options for people living with geriatric syndromes and approaching end-of-life.

In The pandemic and the delivery of palliative care and MAiD: What was the impact? MacDonald directs our attention to the field of palliative care and the struggle to maintain good patient care in the provision of MAiD during the COVID-19 pandemic. This is an unfortunate dynamic that was known very little about. Palliative clinicians have a deep relationship with the dying patient through several communicative modes which include the sense of touch and physical presence to comfort. During COVID-19, touch was not possible, hugs were not permitted, and the separation between healthcare providers and those dying in isolation were legion. MacDonald describes the circumstances in which dying patients, their families, and their care providers faced some of the most inhumane conditions because of the restrictions. MacDonald provides health leaders and providers with four recommendations about how palliative care and the health systems can be better prepared for the next pandemic. All health leaders and providers have an obligation and responsibility for ensuring the palliative care and MAiD provided is the best care for the patient and the best possible death.

The article by Campbell and co-authors, Re-examining medical assistance in dying for mature minors in Canada: Reflections for health leaders, surveys the philosophical and legal evidence related to MAiD for mature minors. Under the current legislation, mature minors remain ineligible for MAiD. This position is criticized in that it undermines the need to respect the dignity of mature minors and is an act of age discrimination. The authors provide us with evidence from international experience, primarily the Netherlands and Belgium, where MAiD is permitted for some minors. Reporting of experience is early but sending some important signals that citizens, health leaders, and providers will want to consider. The experience in Canada of bottom-up implementation of MAiD procedures by provincial entities has been successful and will likely persist, so clinicians and healthcare delivery organizations will likely continue to be responsible for developing policies and procedures for addressing MAiD for mature minors. This article highlights the variability in the decisional capacity and incapacity of mature minors that may make hard and fast rules challenging to draft policies and procedures. In addition, the phenomena of childism as well as structural and social factors within the Canadian healthcare system may also shape the options available to mature minors. The authors point out that mature minors were not actively engaged in the development of Bill C-14. The authors strongly encourage health leaders and providers to proactively think about potential legislative changes and how they will be accommodated in practice in the future.

We conclude this edition with an ethics column by Wasylenko who was a member of the committee that wrote the current Canadian Medical Association Code of Ethics and Professionalism, as well as serving as the Medical Advisor and Secretariat Chair for the development and implementation of the MAiD mechanism in Alberta (created in response to the federal MAiD legislation). In this column, Wasylenko provides us with an understanding of how the rights of patients to receive legally permissible interventions can come into conflict with the rights of providers to object for reasons of conscience to providing those interventions. Wasylenko encourages us to exercise wisdom in managing these conflicting imperatives by encouraging a broader discourse between competing individual rights, balanced with the broader society benefits and impacts of valuing conscience in the practice of medicine and the systems in which care is delivered. Wasylenko offers readers a list of criteria by which the legitimacy of claims of conscience can be assessed.

The articles in this edition reaffirm that citizens, health leaders, and providers appreciate that social and political change surrounding issues like life and death are difficult and can be challenging, but they are solvable. What is important to maintain is that civil and respectful opportunities and mechanisms to engage, communicate, and deliberate on the issues is crucial. Citizens, health leaders, and providers are encouraged to think about and develop policies, procedures, practices, and processes that maintain the patient at the centre of their deliberations; this offers a respectful opportunity for the breath of values to be identified and deliberated. Introducing and using multidisciplinary teams to engage in the exploration of the issues provides an opportunity to fully understand the challenges, opportunities, and threats situating the solutions in a way that brings everyone along. Not everyone may be happy with the outcomes, but everyone will have been heard. Social and political progress seeking the improvement of the human condition may be incremental, but the vision of an improved quality of life for citizens should be at the core of the continually learning healthcare system.