Exploring the experiences and perspectives of substitute decision-makers involved in decisions about deceased organ donation: a qualitative study protocol
Dean A Fergusson,
Greg Knoll,
François Lauzier,
Simon C Kitto,
Jamie Brehaut,
Justin Presseau,
Ian Ball,
Michaël Chasse,
Karen E A Burns,
Alexis F Turgeon,
Frédérick D'Aragon,
Jacob Crawshaw,
Zack van Allen,
Livia Pinheiro Carvalho,
Kim Jordison,
Shane English,
Aimee J Sarti,
Claudio Martin,
Alvin Ho-ting Li,
Marie-Chantal Fortin,
Matthew Weiss,
Maureen Meade,
Pierre Marsolais,
Sam Shemie,
Sanabelle Zaabat,
Sonny Dhanani
Affiliations
Dean A Fergusson
director
Greg Knoll
Ottawa Hospital Research Institute, Ottawa, Ontario, Canada
François Lauzier
Population Health and Optimal Health Practives Research Unit (Trauma - Emergency - Critical Care Medicine), Centre de Recherche du CHU de Québec - Université Laval, Quebec, Quebec, Canada
Simon C Kitto
23 Innovation in Medical Education, University of Ottawa, Ottawa, Ontario, Canada
Jamie Brehaut
Ottawa Hospital Research Institute, Ottawa, Ontario, Canada
Justin Presseau
Clinical Epidemiology, Ottawa Hospital Research Institute, Ottawa, Ontario, Canada
Ian Ball
Medicine and Epidemiology and Biostatistics, Western University, London, Ontario, Canada
Michaël Chasse
Department of Medicine, Université de Montréal, Montreal, Québec, Canada
Karen E A Burns
Interdepartmental Division of Critical Care Medicine, University of Toronto, Toronto, Ontario, Canada
Alexis F Turgeon
Department of Anesthesiology and Critical Care Medicine, Université Laval, Québec, Québec, Canada
Frédérick D'Aragon
Anesthesiology, Université de Sherbrooke Faculté de médecine et des sciences de la santé, Sherbrooke, Québec, Canada
Jacob Crawshaw
1 Institute of Pharmaceutical Science, King`s College London, London, UK
Zack van Allen
1 Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, Ontario, Canada
Livia Pinheiro Carvalho
3 Innovation Hub, Centre de Recherche du CHUM, Montréal, Québec, Canada
Kim Jordison
4 Canadian Donation and Transplant Research Program, Edmonton, Alberta, Canada
Shane English
Division of Critical Care, Department of Medicine, University of Ottawa, Ottawa, Ontario, Canada
Aimee J Sarti
8 Critical Care Medicine, Ottawa Hospital, Ottawa, Ontario, Canada
Claudio Martin
Medicine (Critical Care), London Health Sciences Centre, London, Ontario, Canada
Alvin Ho-ting Li
1 Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, Ontario, Canada
Marie-Chantal Fortin
15 Medicine (Critical Care), Centre Hospitalier de L`Universite de Montreal, Montréal, Québec, Canada
Matthew Weiss
Transplant Québec, Montreal, Québec, Canada
Maureen Meade
Department of Health Research Methods, Evidence and Impact, McMaster University, Hamilton, Ontario, Canada
Pierre Marsolais
19 Medicine, Hôpital du Sacré-Coeur de Montréal, Montreal, Québec, Canada
Sam Shemie
Division of Critical Care, Department of Pediatrics, Montreal Childrens Hospital, Montreal, Québec, Canada
Sanabelle Zaabat
21 Medicine, Université de Montréal, Montréal, Québec, Canada
Sonny Dhanani
Department of Pediatrics, Division of Critical Care, Children’s Hospital of Eastern Ontario and University of Ottawa, Ottawa, Ontario, Canada
Introduction In Canada, deceased organ donation provides over 80% of transplanted organs. At the time of death, families, friends or others assume responsibility as substitute decision-makers (SDMs) to consent to organ donation. Despite their central role in this process, little is known about what barriers, enablers and beliefs influence decision-making among SDMs. This study aims to explore the experiences and perspectives of SDMs involved in making decisions around the withdrawal of life-sustaining therapies, end-of-life care and deceased organ donation.Methods and analysis SDMs of 60 patients admitted to intensive care units will be enrolled for this study. Ten hospitals across five provinces in Canada in a prospective multicentre qualitative cohort study. We will conduct semistructured telephone interviews in English or French with SDMs between 6 and 8 weeks after the patient’s death. Our sampling frame will stratify SDMs into three groups: SDMs who were not approached for organ donation; SDMs who were approached and consented to donate and SDMs who were approached but did not consent to donate. We will use two complementary theoretical frameworks—the Common-Sense Self-Regulation Model and the Theoretical Domains Framework— to inform our interview guide. Interview data will be analysed using deductive directed content analysis and inductive thematic analysis.Ethics and dissemination This study has been approved by the Centre Hospitalier de l’Université de Montréal Research Ethics Board. The findings from this study will help identify key factors affecting substitute decision-making in deceased organ donation, reasons for non-consent and barriers to achieve congruency between SDM and patient wishes. Ultimately, these data will contribute to the development and evaluation of tools and training for healthcare providers to support SDMs in making decisions about organ donation.Trial registration number NCT03850847.
