How can we improve the experiences of patients and families who request medical assistance in dying? A multi-centre qualitative study.

BACKGROUND: Medical assistance in dying has been available in Canada for 5 years, but it is unclear which practices contribute to high-quality care. We aimed to describe patient and family perspectives of quality of care for medical assistance in dying. METHODS: We conducted a multi-centre, qualitative descriptive study, including face to face or virtual one-hour interviews using a semi-structured guide. We interviewed 21 english-speaking patients found eligible for medical assistance in dying and 17 family members at four sites in Canada, between November 2017 and September 2019. Interviews were de-identified, and analyzed in an iterative process of thematic analysis. RESULTS: We identified 18 themes. Sixteen themes were related to a single step in the process of medical assistance in dying (MAID requests, MAID assessments, preparation for dying, death and aftercare). Two themes (coordination and patient-centred care) were theme consistently across multiple steps in the MAID process. From these themes, alongside participant recommendations, we developed clinical practice suggestions which can guide care. CONCLUSIONS: Patients and families identified process-specific successes and challenges during the process of medical assistance in dying. Most importantly, they identified the need for care coordination and a patient-centred approach as central to high-quality care. More research is required to characterize which aspects of care most influence patient and family satisfaction.

A principle-based framework for improving health equity in the Champlain region of Ontario, Canada.

The purpose of this column is to present an action-oriented health equity framework derived from Beauchamp and Childress' four ethical principles (ie, autonomy, beneficence, nonmaleficence, and justice) and centred around the specific needs of marginalized and excluded communities of the Champlain region of Ontario. It describes the conceptual underpinnings of the framework, defines its components, and demonstrates how it can be applied. The principle-based health equity framework is a useful tool to reduce health disparities within healthcare organizations; it is designed to promote the incorporation of health equity objectives, strategies, principles, and measurements into healthcare organizations' strategic planning processes and operations.

Involvement of palliative care in patients requesting medical assistance in dying.

OBJECTIVE: To determine the level of palliative care involvement before and after medical assistance in dying (MAID) requests, and to compare the differences between those who completed MAID and those who requested but did not complete MAID. DESIGN: Retrospective chart review. SETTING: The Ottawa Hospital (TOH) in Ontario. PARTICIPANTS: Ninety-seven patients who requested MAID at TOH between February 6, 2016, and June 30, 2017. MAIN OUTCOME MEASURES: Completion of MAID. RESULTS: Eighty-four patients were included in the study. Fifty patients (59.5%) completed MAID. The most common reasons for not completing MAID were death before completion of the required assessments (47.0%), ineligibility (26.5%), and loss of capacity (14.7%). The most common diagnoses were cancer (72.6%) and neurologic disease (11.9%). The most frequent reasons for requesting MAID were physical suffering (77.4%), loss of autonomy (36.9%), and poor quality of life (27.4%). Patients who completed MAID in this study were more likely to report physical suffering as the reason for their request than those who did not complete MAID (84.0% vs 67.6%; P = .08), yet only 23.8% of all patients requesting MAID had an Edmonton Symptom Assessment Scale completed. Before MAID request, 27.4% of patients had a community palliative care physician and 59.5% had palliative care involvement in any setting. The TOH palliative care team was involved in 46.4% of patients who requested MAID. CONCLUSION: There is still inadequate provision of palliative care for those requesting MAID. Guidelines, legislation, and guidance are needed to help physicians ensure patients are aware of and understand the benefits of palliative care in end-of-life decisions. However, the involvement of palliative care with patients who completed MAID was similar to those who did not complete MAID. Multicentre studies are needed to further explore the MAID process and clarify the role of palliative care in that process.

How should health leaders approach morally contentious policy issues?

In terms of their expertise, experience, and impact on patient care, health leaders occupy an important position in our health system. These leaders are expected to provide value to their constituents, and this value is connected to moral objectives that are fundamental to the delivery of healthcare. In some cases, leaders may interpret a certain politico-medical decision, policy, or directive to interfere with these moral objectives. In these instances, leaders can either expressly object to a decision or sideline moral views while enacting these policies or directives. We present several contemporary examples of these issues as well as the experiences of health leaders. Subsequently, we review relevant sections of the Canadian College of Health Leaders' Code of Ethics to identify existing guidance. Ultimately, we conclude that more work is needed to define the role of leaders in these circumstances, as well as the limitations of any resistance.

Should influenza vaccination be mandatory for healthcare workers?

Each year, many healthcare organizations deal with low influenza immunization rates among staff. Mandatory influenza vaccination programs may be considered in order to address this issue. These types of programs have caused controversy in the past, as staff has argued that they infringe upon their liberties and right to autonomy. However, if viewed from a public health perspective, mandatory vaccination programs are beneficial for both employees and patients and can be justified. When individuals make the decision to work in the medical field, it is assumed that their values align with those of the organization for which they work. This overrides their right to autonomy, since they are expected to put the safety of their patients ahead of their own personal interests. Although some may argue that receiving a flu shot is unsafe, evidence has demonstrated the opposite, and the minimal discomfort that may result from a vaccine is not enough to negate the responsibilities that healthcare workers have toward the patients they serve.

Reconsidering the ethical permissibility of the use of unregistered interventions against Ebola virus disease.

Ethical considerations for the use of unregistered interventions for Ebola virus disease have sparked considerable debate among academic and clinical ethicists. In August 2014 the World Health Organization (WHO) convened a panel of experts to discuss approaches to the outbreak in West Africa, with the goal of determining "whether it is ethical to use unregistered interventions with unknown adverse effects for possible treatment or prophylaxis". 1 The panel concluded that there would be an ethical imperative to provide such unregistered interventions if specific criteria could be met. This paper evaluates the WHO conclusion and argues that although it may be reasonable to provide unregistered interventions considering the circumstance, there is no clear ethical imperative to do so.

Documentation of capacity and identification of substitute decisionmakers in Ontario.

Documenting capacity assessments and identifying substitute decisionmakers (SDMs) in healthcare facilities is ethically required for optimal patient care. Lack of such documentation has the potential to generate confusion and contention among patients, their family members, and members of the healthcare team. An overview of our research at the Ottawa Hospital and issues that influence the consistency of documentation in the Canadian context are presented here, as well as ideas for the mitigation of these issues and ways to encourage better documentation.

Enduring Physical or Mental Suffering of People Requesting Medical Assistance in Dying.

BACKGROUND: Medical assistance in dying (MAiD) is available in Canada for patients with grievous and irremediable medical conditions causing unbearable physical or mental suffering. It is not known how the 'grievous and irremediable suffering' criteria is being interpreted and documented by physicians. METHODS: Retrospective chart review of MAiD assessments from patients who submitted written MAiD requests to The Ottawa Hospital from June 1, 2016 to September 18, 2018. We used inductive thematic analysis to determine themes and subthemes. RESULTS: Our sample included 52 patients with a mean age of 70.5 years (SD 14), 24/52 (46%) were male. We identified 5 themes: 1) patient's context and history (e.g., past experiences, lack of disease modifying treatments), 2) physical symptoms (e.g., chronic pain, fatigue), 3) psychosocial symptoms (e.g., social isolation, or inability to communicate), 4) sense of control and 5) irreversibility. These themes were used to create a framework that describes the suffering of patients requesting MAiD. Patients who request MAiD describe how their disease causes suffering through physical symptoms, psychological symptoms and loss of control that is irreversible. These domains of suffering interact with their personal history and context leading to a reality that is unacceptable and irreversible. CONCLUSION: MAiD assessors' working definition of 'grievous and irremediable suffering' as documented in their assessments is consistent with the body of literature on this topic. MAiD assessments could be enhanced with more information about existential aspects of suffering and the impact of illness on meaningful life roles.

Mind the gap: the lack of common language in healthcare ethics.

Ethics consultation services provide support to staff, patients, and family members who find themselves in morally difficult situations in healthcare settings. Not unlike other clinical consultation services, ethics consultation activities should be well documented. Good documentation allows for evaluation of the consultation process and the ability to refer back to consults when needed, and provides data for future research in healthcare ethics (HCE). In our exploration of existing HCE documentation systems, we identified two main points of interest. First, HCE information documentation systems are powerful tools for providing information on ethics consultation services.These documentation systems can be used to produce detailed reports on various HCE activities both institutionally and cross-institutionally. Second, our findings indicate greater agreement in the language and terminology of HCE needs to be established. Cultivation of such common language is needed in order to develop a standard healthcare ethicists can use to document and categorize consults. Standardization of language would allow data to be readily comparable and lead to more consistency in documentation of ethics consultations. Ultimately, standardization of documentation can also constitute a standard of practice for HCE in general.The development of such standards is essential for any developing profession, and will be required for HCE as it moves in towards professionalization in Canada.

Ethical considerations in the regulation of euthanasia and physician-assisted death in Canada.

On February 6th 2015 the Supreme Court of Canada (SCC) released their decision on Carter v Canada (Attorney General) to uphold a judgment from a lower court which determined that the current prohibition in Canada on physician-assisted dying violated the s. 7 [Charter of Rights and Freedoms] rights of competent adults whose medical condition causes intolerable suffering. The purpose of this piece is to briefly examine current regulations from Oregon (USA), Belgium, and the Netherlands, in which physician-assisted death and/or euthanasia is currently permitted, as well as from the province of Quebec which recently passed Bill-52, "An Act Respecting End-of-Life Care." We present ethical considerations that would be pertinent in the development of policies and regulations across Canada in light of this SCC decision: patient and provider autonomy, determining a relevant decision-making standard for practice, and explicating challenges with the SCC criteria for assisted-death eligibility with special consideration to the provision of assisted-death, and review of assisted-death cases. [It is not the goal of this paper to address all questions related to the regulation and policy development of euthanasia and assisted death in Canada, but rather to stimulate and guide the conversations in these areas for policy makers, professional bodies, and regulators.].

Market liberalism in health care: a dysfunctional view of respecting "consumer" autonomy.

The unfortunately vast history of paternalism in both medicine and clinical research has resulted in perpetually increasing respect for patient autonomy and free choice in Western health care systems. Beginning with the negative right to informed consent, the principle of respect for autonomy has for many patients evolved into a positive right to request treatments and expect accommodation. This evolution of patient autonomy has mirrored a more general social attitude of market liberalism where increasing numbers of patients have come to embody the role of the "consumer." This paper explores this transformation and critiques the current way in which respect for patient autonomy is put into practice. Ultimately, this paper concludes that the consumer view of patient autonomy is dysfunctional. Moreover, this paper argues that, based on the inherent goals of medicine, some form of paternalism is required in any meaningfully therapeutic relationship.