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Exploring the experiences and perspectives of substitute decision-makers involved in decisions about deceased organ donation: a qualitative study protocol
  1. Jacob Crawshaw1,2,
  2. Justin Presseau1,2,
  3. Zack van Allen1,2,
  4. Livia Pinheiro Carvalho3,
  5. Kim Jordison4,
  6. Shane English1,5,
  7. Dean A Fergusson1,2,
  8. Francois Lauzier6,7,
  9. Alexis F Turgeon6,7,
  10. Aimee J Sarti8,
  11. Claudio Martin9,
  12. Frédérick D'Aragon10,11,
  13. Alvin Ho-ting Li1,
  14. Greg Knoll12,
  15. Ian Ball13,
  16. Jamie Brehaut1,
  17. Karen E A Burns14,
  18. Marie-Chantal Fortin15,16,
  19. Matthew Weiss4,17,
  20. Maureen Meade18,
  21. Pierre Marsolais19,
  22. Sam Shemie20,
  23. Sanabelle Zaabat21,
  24. Sonny Dhanani22,
  25. Simon C Kitto23,
  26. Michaël Chassé3,15,16
  27. on behalf of the Canadian Donation and Transplantation Research Program and the Canadian Critical Care Trials Group
  1. 1 Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, Ontario, Canada
  2. 2 School of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada
  3. 3 Innovation Hub, Centre de Recherche du CHUM, Montréal, Québec, Canada
  4. 4 Canadian Donation and Transplant Research Program, Edmonton, Alberta, Canada
  5. 5 Medicine (Critical Care), University of Ottawa, Ottawa, Ontario, Canada
  6. 6 Population Health and Optimal Health Practices Unit (Trauma-Emergency-Critical Care Medicine), CHU de Quebec-Universite Laval, Quebec City, Québec, Canada
  7. 7 Department of Anesthesiology and Critical Care, Division of Critical Care Medicine, Université Laval, Quebec City, Québec, Canada
  8. 8 Critical Care Medicine, Ottawa Hospital, Ottawa, Ontario, Canada
  9. 9 Medicine (Critical Care), Schulich School of Medicine and Dentistry, London, Ontario, Canada
  10. 10 Anesthesiology, Universite de Sherbrooke Faculte de medecine et des sciences de la sante, Sherbrooke, Quebec, Canada
  11. 11 Centre de recherche du CHUS, Sherbrooke, Quebec, Canada
  12. 12 University of Ottawa Faculty of Medicine, Ottawa, Ontario, Canada
  13. 13 Medicine, London Health Sciences Centre, London, Ontario, Canada
  14. 14 Critical Care, St Michael's Hospital, Toronto, Ontario, Canada
  15. 15 Medicine (Critical Care), Centre Hospitalier de L'Universite de Montreal, Montréal, Québec, Canada
  16. 16 Medicine (Critical Care), Université de Montréal, Montreal, Québec, Canada
  17. 17 Trauma-Emergency-Critical Care Medicine, Université Laval Faculté de médecine, Quebec City, Quebec, Canada
  18. 18 Medicine (Critical Care), McMaster University, Hamilton, Ontario, Canada
  19. 19 Medicine, Hôpital du Sacré-Coeur de Montréal, Montreal, Québec, Canada
  20. 20 Critical Care, McGill University, Montreal, Québec, Canada
  21. 21 Medicine, Université de Montréal, Montréal, Québec, Canada
  22. 22 Critical Care, CHEO, Ottawa, Ontario, Canada
  23. 23 Innovation in Medical Education, University of Ottawa, Ottawa, Ontario, Canada
  1. Correspondence to Dr Michaël Chassé; michael.chasse{at}


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.

  • intensive and critical care
  • qualitative research
  • quality in health care

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  • Twitter @JakeECrawshaw, @Ball, @DrSimonKitto

  • Collaborators The Canadian Critical Care Trials Group and the Canadian Donation and Transplantation Research Program

  • Contributors All authors (JC, JP, ZvA, LPC, KJ, SE, DAF, FL, AFT, AJS, CM, FD, AHL, GK, IB, JB, KEAB, MCF, MW, MM, PM, SS, SZ, SD, SCK, MC) participated in conceiving this study. The conduct of the study will be led by MC, JP and KJ. All authors provided input into the protocol, critical feedback on the manuscript, and approved the final manuscript.

  • Funding This study is supported by the Canadian Institute of Health Research, grant number PJT-155997. MC, FL, FDA and MCF are recipients of a salary support award from the Fonds de Recherche Québec – Santé (FRQS). AFT is the chair holder of the Canada Research Chair in Critical Care Neurology and Trauma.

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Ethics approval A prospective multicentre qualitative cohort study has been approved by the Centre Hospitalier de l’Université de Montréal Research Ethics Board (MP-02-2019-7792). Provincial and local ethics approval will also be obtained from each participating site.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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