Information détaillée

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Titre du projet :

Understanding the Impact of Patient Transfers on End-of-Life Patient Experience: The Effects of Institutional Abstinence from Medical Assistance in Dying

Chercheur principal :

Knox, Michelle

Co-chercheurs :

S/O

Directeur(s) de recherche :

Wilson, Donna M; Abbasgholizadeh Rahimi, Samira; Fishman, Jennifer R; Rowe, Aidan

Établisssement payé :

University of Alberta

Établissement de recherche :

University of Alberta

Département :

S/O

Programme :

Bourse de recherche : RAP - volet Transition à un rôle de chef de file - phase 1

Concours (année/mois) :

201911

CEP désigné :

Bourses de RAP - volet Transition à un rôle de chef de file - phase 1- Bourse de recherche

Institut principal :

Services et politiques de la santé

Thème principal :

Systèmes / services de santé

Durée (année/mois) :

2 ans 0 mois

Contribution des IRSC :

Donateurs :

Montant :

110 000$

Équipement :

0$

Contribution du partenaire externe :

Nom du partenaire :

S/O

Montant :

S/O

Équipement :

S/O

Partenaire du candidat à l'externe :

Nom du partenaire :

S/O

Montant :

S/O

Équipement :

S/O

Partenaire externe (en nature) :

Nom du partenaire :

S/O

Montant :

S/O

Équipement :

S/O

Mots clés :

End-Of-Life Care; Health Services And Policy; Institutional Ethnography; Maid Access; Medical Assistance In Dying; Patient Engagement; Patient Transfers; Patient-Oriented Research; Shared Decision-Making; Transitions In Care

Résumé :

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.

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Version :

20250311.1