Exploring the experiences and perspectives of substitute decision-makers involved in decisions about deceased organ donation: a qualitative study protocol

Jacob Crawshaw; Justin Presseau; Zack van Allen; Livia Pinheiro Carvalho; Kim Jordison; Shane English; Dean A Fergusson; Francois Lauzier; Alexis F Turgeon; Aimee J Sarti; Claudio Martin; Frédérick D'Aragon; Alvin Ho-Ting Li; Greg Knoll; Ian Ball; Jamie Brehaut; Karen E A Burns; Marie-Chantal Fortin; Matthew Weiss; Maureen Meade; Pierre Marsolais; Sam Shemie; Sanabelle Zaabat; Sonny Dhanani; Simon C Kitto; Michaël Chassé; Canadian Donation and Transplantation Research Program and the Canadian Critical Care Trials Group

doi:10.1136/bmjopen-2019-034594

Exploring the experiences and perspectives of substitute decision-makers involved in decisions about deceased organ donation: a qualitative study protocol

BMJ Open. 2019 Dec 23;9(12):e034594. doi: 10.1136/bmjopen-2019-034594.

Authors

Jacob Crawshaw^{1

2}, Justin Presseau^{1

2}, Zack van Allen^{1

2}, Livia Pinheiro Carvalho³, Kim Jordison⁴, Shane English^{1

5}, Dean A Fergusson^{1

2}, Francois Lauzier^{6

7}, Alexis F Turgeon^{6

7}, Aimee J Sarti⁸, Claudio Martin⁹, Frédérick D'Aragon^{10

11}, Alvin Ho-Ting Li¹, Greg Knoll¹², Ian Ball¹³, Jamie Brehaut¹, Karen E A Burns¹⁴, Marie-Chantal Fortin^{15

16}, Matthew Weiss^{4

17}, Maureen Meade¹⁸, Pierre Marsolais¹⁹, Sam Shemie²⁰, Sanabelle Zaabat²¹, Sonny Dhanani²², Simon C Kitto²³, Michaël Chassé^{24

15

16}; Canadian Donation and Transplantation Research Program and the Canadian Critical Care Trials Group

Affiliations

¹ Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, Ontario, Canada.
² School of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada.
³ Innovation Hub, Centre de Recherche du CHUM, Montréal, Québec, Canada.
⁴ Canadian Donation and Transplant Research Program, Edmonton, Alberta, Canada.
⁵ Medicine (Critical Care), University of Ottawa, Ottawa, Ontario, Canada.
⁶ Population Health and Optimal Health Practices Unit (Trauma-Emergency-Critical Care Medicine), CHU de Quebec-Universite Laval, Quebec City, Québec, Canada.
⁷ Department of Anesthesiology and Critical Care, Division of Critical Care Medicine, Université Laval, Quebec City, Québec, Canada.
⁸ Critical Care Medicine, Ottawa Hospital, Ottawa, Ontario, Canada.
⁹ Medicine (Critical Care), Schulich School of Medicine and Dentistry, London, Ontario, Canada.
¹⁰ Anesthesiology, Universite de Sherbrooke Faculte de medecine et des sciences de la sante, Sherbrooke, Quebec, Canada.
¹¹ Centre de recherche du CHUS, Sherbrooke, Quebec, Canada.
¹² University of Ottawa Faculty of Medicine, Ottawa, Ontario, Canada.
¹³ Medicine, London Health Sciences Centre, London, Ontario, Canada.
¹⁴ Critical Care, St Michael's Hospital, Toronto, Ontario, Canada.
¹⁵ Medicine (Critical Care), Centre Hospitalier de L'Universite de Montreal, Montréal, Québec, Canada.
¹⁶ Medicine (Critical Care), Université de Montréal, Montreal, Québec, Canada.
¹⁷ Trauma-Emergency-Critical Care Medicine, Université Laval Faculté de médecine, Quebec City, Quebec, Canada.
¹⁸ Medicine (Critical Care), McMaster University, Hamilton, Ontario, Canada.
¹⁹ Medicine, Hôpital du Sacré-Coeur de Montréal, Montreal, Québec, Canada.
²⁰ Critical Care, McGill University, Montreal, Québec, Canada.
²¹ Medicine, Université de Montréal, Montréal, Québec, Canada.
²² Critical Care, CHEO, Ottawa, Ontario, Canada.
²³ Innovation in Medical Education, University of Ottawa, Ottawa, Ontario, Canada.
²⁴ Innovation Hub, Centre de Recherche du CHUM, Montréal, Québec, Canada michael.chasse@umontreal.ca.

Abstract

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.

Keywords: intensive and critical care; qualitative research; quality in health care.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Attitude*
Cadaver
Cohort Studies
Decision Making*
Humans
Multicenter Studies as Topic
Qualitative Research
Research Design*
Tissue and Organ Procurement*

Associated data

ClinicalTrials.gov/NCT03850847

Grants and funding

PJT-155997/CIHR/Canada