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.

How We Can Improve the Quality of Care for Patients Requesting Medical Assistance in Dying: A Qualitative Study of Health Care Providers.

CONTEXT: Since Canada decriminalized medical assistance in dying (MAID) in 2015, clinicians and organizations have developed policies and protocols to implement assisted dying in clinical practice. Five years on, there is little consensus as to what constitutes high-quality care in MAID. OBJECTIVES: To describe MAID clinicians' perspectives on quality of care in MAID, including challenges, successes, and clinical practice suggestions. METHODS: We conducted an exploratory, multicenter, and qualitative study at four Canadian centers. Using a semistructured interview guide, we conducted interviews with 20 health care providers. Interviews were transcribed and deidentified before analysis. Adopting a qualitative descriptive approach, we used a thematic analysis to identify primary and secondary themes in the interviews and practice suggestions to improve quality of care to patients who request MAID. RESULTS: We identified three major themes. 1) Improving access and patient experience: clinicians described struggles in ensuring equitable access to MAID and supporting MAID patients and their families. 2) Supporting providers and sustainability: clinicians described managing MAID workload, remuneration, educational needs, and the emotional impact of participating in assisted dying. 3) Institutional support: descriptions of MAID communication tools and training, use of standardized care pathways, interprofessional collaboration, and human resource planning. Clinicians also described suggestions for clinical practice to improve quality of care. CONCLUSION: Canadian health care providers described unique challenges in caring for patients who request MAID, along with practices to improve the quality of care.