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Grant: Fellowship: POR Awards - Transition to Leadership Stream - Phase 1

University of Alberta

$110,000.00

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

FY 2019-20

Summary
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.
Program
Fellowship: POR Awards - Transition to Leadership Stream - Phase 1
Location
Alberta, Canada
Recipient Type
Academia
Type
Grant
Source
CIHR Funding Decisions Database

As published

Id
416592
Name
Knox Michelle
Region
Alberta
Country
Canada
Orgtype
Institution Paid; Research Institution
Instname2
Health Services and Policy Research
Theme2
Health systems / services
Prcname2
POR Awards- Transition to Leadership Stream- Phase 1- Fellowship
Projecttitle
Understanding the Impact of Patient Transfers on End-of-Life Patient Experience: The Effects of Institutional Abstinence from Medical Assistance in Dying
Programtype2
Fellowship Programs
Orgnameinp2
University of Alberta
Cihramount2
$110,000
Cihrequipment2
$0
Programname2
Fellowship: POR Awards - Transition to Leadership Stream - Phase 1
Keyworddelim
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
Abstract
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.
Competitiondate
201911
Approvedterm2
2 yrs 0 mth
Pinamesdelim
Knox, Michelle
Approvedterm
2 ans 0 mois
Cihrcontribution2
~ $110,000~ $0~
University of Alberta - $110,000 Grant (2019-20) | Canada Spends