Information needs of francophone health care professionals and the public with regard to medical assistance in dying in Quebec: a qualitative study.

BACKGROUND: In 2016, the Canadian government legalized medical assistance in dying (MAiD) for adults with terminal illness. The objective of this study was to explore the information needs of health care professionals and members of the public regarding MAiD. METHODS: This was a qualitative study involving a 1-day face-to-face forum followed by a 3-week online forum across the province of Quebec conducted in June 2016. French-speaking participants targeted for the study included members of the public (citizens, patients and caregivers) and health care professionals. Participants were recruited through calls for applications to a patient partner network and via social media, and through mailing lists of partner professional and community organizations across Quebec. We used a purposeful sampling strategy to recruit a diverse group of participants. In the forums, deliberations were prompted by short informational videos about MAiD. We performed a thematic analysis to identify key information needs. RESULTS: Fifty members of the public and 35 health care professionals participated. Forty-three people participated in the face-to-face meeting, and 42 people participated online. Participants identified 32 information needs (22 expressed by both members of the public and health care professionals, and 10 specific to members of the public) regarding the definition of MAiD, eligibility criteria, and documenting and evaluating practices. Information needs varied along different stages of the patient's journey. Participants expressed the need to be informed about issues that go beyond the medical and legal aspects of MAiD (e.g., relational, symbolic, psychological and spiritual aspects). INTERPRETATION: The findings show that health care professionals and members of the public have common information needs regarding MAiD and seek information on the relational, emotional and symbolic aspects of this practice. These findings call for concerted efforts to build a common information base - covering dimensions that go beyond the medical and legal aspects of MAiD - to facilitate informed conversations among patients, health care professionals and members of the public.

International changes in end-of-life practices over time: a systematic review.

BACKGROUND: End-of-life policies are hotly debated in many countries, with international evidence frequently used to support or oppose legal reforms. Existing reviews are limited by their focus on specific practices or selected jurisdictions. The objective is to review international time trends in end-of-life practices. METHODS: We conducted a systematic review of empirical studies on medical end-of-life practices, including treatment withdrawal, the use of drugs for symptom management, and the intentional use of lethal drugs. A search strategy was conducted in MEDLINE, EMBASE, Web of Science, Sociological Abstracts, PAIS International, Worldwide Political Science Abstracts, International Bibliography of the Social Sciences and CINAHL. We included studies that described physicians' actual practices and estimated annual frequency at the jurisdictional level. End-of-life practice frequencies were analyzed for variations over time, using logit regression. RESULTS: Among 8183 references, 39 jurisdiction-wide surveys conducted between 1990 and 2010 were identified. Of those, 22 surveys used sufficiently similar research methods to allow further statistical analysis. Significant differences were found across surveys in the frequency of treatment withdrawal, use of opiates or sedatives and the intentional use of lethal drugs (X 2 > 1000, p < 0.001 for all). Regression analyses showed increased use of opiates and sedatives over time (p < 0.001), which could reflect more intense symptom management at the end of life, or increase in these drugs to intentionally cause patients' death. CONCLUSION: The use of opiates and sedatives appears to have significantly increased over time between 1990 and 2010. Better distinction between practices with different legal status is required to properly interpret the policy significance of these changes. Research on the effects of public policies should take a comprehensive look at trends in end-of-life practice patterns and their associations with policy changes.

Comparing end-of-life practices in different policy contexts: a scoping review.

OBJECTIVES: End-of-life policy reforms are being debated in many countries. Research evidence is used to support different assumptions about the effects of public policies on end-of-life practices. It is however unclear whether reliable international practice comparisons can be conducted between different policy contexts. Our aim was to assess the feasibility of comparing similar end-of-life practices in different policy contexts. METHODS: This is a scoping review of empirical studies on medical end-of-life practices. We developed a descriptive classification of end-of-life practices that distinguishes practices according to their legal status. We focused on the intentional use of lethal drugs by physicians because of international variations in the legal status of this practice. Bibliographic database searches were supplemented by expert consultation and hand searching of reference lists. The sensitivity of the search strategy was tested using a set of 77 articles meeting our inclusion criteria. Two researchers extracted end-of-life practice definitions, study methods and available comparisons across policy contexts. Canadian decision-makers were involved to increase the policy relevance of the review. RESULTS: In sum, 329 empirical studies on the intentional use of lethal drugs by doctors were identified, including studies from 19 countries. The bibliographic search captured 98.7% of studies initially identified as meeting the inclusion criteria. Studies on the intentional use of lethal drugs were conducted in jurisdictions with permissive (62%) and restrictive policies (43%). The most common study objectives related to the frequency of end-of-life practices, determinants of practices, and doctors' adherence to regulatory standards. Large variations in definitions and research methods were noted across studies. The use of a descriptive classification was useful to translate end-of-life practice definitions across countries. A few studies compared end-of-life practice in countries with different policies, using consistent research methods. We identified no comprehensive review of end-of-life practices across different policy contexts. CONCLUSIONS: It is feasible to compare end-of-life practices in different policy contexts. A systematic review of international evidence is needed to inform public deliberations on end-of-life policies and practice.