Objective: As health technology assessment (HTA) organizations in Canada and around the world seek to involve the public and patients in their activities, frameworks to guide decisions about whom to involve, through which mechanisms, and at what stages of the HTA process have been lacking. The aim of this study was to describe the development and outputs of a comprehensive framework for involving the public and patients in a government agency's HTA process. Methods: The framework was informed by a synthesis of international practice and published literature, a dialogue with local, national and international stakeholders, and the deliberations of a government agency's public engagement subcommittee in Ontario, Canada. Results: The practice and literature synthesis failed to identify a single, optimal approach to involving the public and patients in HTA. Choice of methods should be considered in the context of each HTA stage, goals for incorporating societal and/or patient perspectives into the process, and relevant societal and/or patient values at stake. The resulting framework is structured around four actionable elements: (i) guiding principles and goals for public and patient involvement (PPI) in HTA, (ii) the establishment of a common language to support PPI efforts, (iii) a flexible array of PPI approaches, and (iv) on-going evaluation of PPI to inform adjustments over time. Conclusions: A public and patient involvement framework has been developed for implementation in a government agency's HTA process. Core elements of this framework may apply to other organizations responsible for HTA and health system quality improvement.

ObjectiveThe road to legalization of Medical Assistance in Dying (MAID) across Canada has largely focused on legislative details such as eligibility and establishment of regulatory clinical practice standards. Details on how to implement high-quality, person-centered MAID programs at the institutional level are lacking. This study seeks to understand what improvement opportunities exist in the delivery of the MAID process from the family caregiver perspective.MethodThis multi-methods study design used structured surveys, focus groups, and unstructured e-mail/phone conversations to gather experiential feedback from family caregivers of patients who underwent MAID between July 2016 and June 2017 at a large academic hospital in Toronto, Canada. Data were combined and a qualitative, descriptive approach used to derive themes within family perspectives.ResultImprovement themes identified through the narrative data (48% response rate) were grouped in two categories: operational and experiential aspects of MAID. Operational themes included: process clarity, scheduling challenges and the 10-day period of reflection. Experiential themes included clinician objection/judgment, patient and family privacy, and bereavement resources.Significance of resultsTo our knowledge, this is the first time that family caregivers’ perspectives on the quality of the MAID process have been explored. Although practice standards have been made available to ensure all legislated components of the MAID process are completed, detailed guidance for how to best implement patient and family centered MAID programs at the institutional level remain limited. This study provides guidance for ways in which we can enhance the quality of MAID from the perspective of family caregivers.

Purpose of reviewAcross all jurisdictions in which assisted dying is legally permissible, cancer is the primary reported underlying diagnosis. Therefore, oncologists are likely to be asked about assisted dying and should be equipped to respond to inquiries or requests for assisted dying. Because Medical Assistance in Dying was legalized in Canada in 2016, it is a relatively new end-of-life practice and has prompted the need to revisit the academic literature to inform communication with patients about assisted dying. Recent findingsWe reviewed applicable literature published in the past 5 years, pertaining to assisted dying and communication. In total, 86 articles were identified, 21 were flagged as relevant to review in detail, and six were included in the review. Key themes included perceived barriers and benefits to communicating with patients on the topic, pragmatic approaches for facilitating the conversation with patients, and the issue of proactively discussing assisted dying by broaching it as an option with patients.

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BACKGROUND:The June 2016 legalization of medical assistance in dying (MAiD) provided an added layer of choice to end-of-life care in Canada. Family caregivers play an important role in patient end-of-life decision-making. They may experience unique psychological burden or distress associated with their role. However, we know little about the caregiver experience associated with patient MAiD requests and the nature of psychosocial supports caregivers require before, during, and following MAiD intervention. OBJECTIVE: The objective of this study is to better understand the caregiver experience of MAiD within the Canadian legal landscape following Bill C-14. DESIGN: Caregiver experience was examined based on qualitative, semi-structured interviews. PARTICIPANTS: A total of 22 caregivers of patients who had requested MAiD were interviewed. APPROACH: Transcripts were recorded, transcribed, and analyzed based on grounded theory methodology. KEY RESULTS: The caregiver experience of MAiD within the legal framework was found to be understood as a "race to the end," with the ultimate goal of creating an ideal dying experience for the patient while balancing a threat to capacity that would undermine their access to MAiD. Caregivers can be described within the overarching framework as either co-runners or onlookers. Sources of caregiver distress were linked to these roles. CONCLUSIONS: The "race to the end" theoretical model contributes new knowledge and understanding that can inform the development of tailored support services for caregivers, the impact of legislative changes on this population, and future research examining decision-making near end of life and the caregiver experience.

Background: In June 2016, the Government of Canada passed Bill C-14 decriminalizing medically assisted death. Increasing numbers of Canadians are accessing medical assistance in dying (MAiD) each year, but there is limited information about this population. Objective: To describe the characteristic outcomes of MAiD requests in a cohort of patients at an academic tertiary care center in Toronto, Ontario, Canada. Methods: A retrospective chart review of patients making a formal request for a MAiD eligibility assessment from July 16 to September 18. Data extracted included demographics, diagnosis, psychosocial characteristics, information relating to the MAiD request, and clinical outcome. Results: We received 107 formal requests for MAiD assessment. Ninety-seven patients were found eligible, of whom 80 received MAiD. Cancer was the primary diagnosis for 78% and median age was 74 years. The majority of patients (64%) cited “functional decline or inability to participate in meaningful activities” as the main factor motivating their request for MAiD. Half of patients who received MAiD (46%) described their request as consistent with a long-standing, philosophical view predating their illness. The 10-day reflection period was reduced for 39% of provisions due to impending loss of capacity. Our cohort was very similar demographically to those described both nationally and internationally. Conclusion: Patients seeking MAiD at our institution were similar to those described in other jurisdictions where assisted dying is legal and represent a group for whom autonomy and independence is critical. We noted a very high rate of risk of loss of capacity, suggesting a need for both earlier assessments and regular monitoring.

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