Perspectives on End of Life and Medical Assistance in Dying From Saskatchewan People With Multiple Sclerosis

Vollständiger Abstract

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Background: Medical assistance in dying (MAID) is a legally available option in Canada. Bill C-14 determined initial eligibility requirements (eg, a patient having a reasonably foreseeable natural death), program safeguards, and a definition of who can assess and administer MAID. Subsequently, Bill C-7 removed the requirement that death must be reasonably foreseeable. Saskatchewan’s multiple sclerosis (MS) prevalence rate is among the highest in the world, and some individuals with MS have already accessed MAID. This project explored the perceptions of end of life (EOL) in Saskatchewan, Canada. Methods: Using an interpretive description methodology, 22 interviews were conducted with individuals with MS and 5 with key informants for data triangulation. Demographic and symptom severity contextual data, field notes, and reflective interview content were also collected and triangulated. Inductive reflexive thematic analysis was completed. Results: Participants had a mean age of 41.8 years with a wide variability in symptom severity. Their main concerns were retaining self-agency, combating stigma, and leaning into hope and positivity. While valuing decision-making autonomy, they recognized that MS can complicate EOL decision-making. Participants looked to family and health care providers for cues about cognitive changes and found that hope and positivity provided comfort as the disease progressed. Conclusions: Understanding participants’ perspectives will help clinicians support individuals as they navigate their disease trajectory during EOL care planning, will help policy makers enhance the health care system to ensure EOL care accessibility for the MS community, and support individual choice for people with MS.