Currently submitted to: JMIR Research Protocols
Date Submitted: May 28, 2020
Open Peer Review Period: May 29, 2020 - Jul 29, 2020
(currently open for review)
The Impact of Institutional Abstinence from Medical Assistance in Dying (MAiD): A Qualitative Study Protocol For Understanding Patient Transfer Journeys
Many healthcare institutions in Canada currently decline to provide medical assistance in dying (MAID) on-site for religious or moral reasons. If patients receiving medical care at such institutions request MAiD, they need to be transferred elsewhere in order to access this important medical service and Charter-protected legal right. The process places additional burdens—in terms of seeking information and support, navigating the health system, and communicating with health professionals—on vulnerable patients who are already battling grievous illness and psychological distress. While anecdotes relating to the issue occasionally appear in the press, there is very little systematic evidence on the experiences of patients and families who make this critical transition in care. This study aims to fill this vital knowledge gap by mapping the MAiD access trajectories of patients and families at MAiD-abstaining institutions. Through a combination of textual analysis (media sources and institutional grey literature) and in-depth interviews (with patients, families, policymakers, and health professionals), this project will generate evidence on how patients and families interact with healthcare institutions and professionals; where they seek information; who they turn to for support and decision-making; what alternative routes they choose when faced with barriers; and where key resources to support their transfer journeys are located. Utilizing the Patient Engagement Framework suggested by the Strategy for Patient-Oriented Research (SPOR), this study will involve patients and families—across all stages of its research design—for: (i) informing the socio-ethical debate on institutional MAiD-abstinence; (ii) identifying gaps in MAiD service delivery, and (iii) making policy recommendations for equitable access to MAiD.
Request queued. Please wait while the file is being generated. It may take some time.
© The authors. All rights reserved. This is a privileged document currently under peer-review/community review (or an accepted/rejected manuscript). Authors have provided JMIR Publications with an exclusive license to publish this preprint on it's website for review and ahead-of-print citation purposes only. While the final peer-reviewed paper may be licensed under a cc-by license on publication, at this stage authors and publisher expressively prohibit redistribution of this draft paper other than for review purposes.