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Research
Open Access

The experiences of family members of deceased organ donors and suggestions to improve the donation process: a qualitative study

Aimee J. Sarti, Stephanie Sutherland, Maureen Meade, Sam Shemie, Angele Landriault, Brandi Vanderspank-Wright, Sabira Valiani, Sean Keenan, Matthew J. Weiss, Kim Werestiuk, Andreas H. Kramer, Joann Kawchuk, Stephen Beed, Sonny Dhanani, Giuseppe Pagliarello, Michaël Chassé, Ken Lotherington, Mary Gatien, Kim Parsons, Jennifer A. Chandler, Peter Nickerson and Pierre Cardinal; for the Canadian Critical Care Trials Group
CMAJ August 08, 2022 194 (30) E1054-E1061; DOI: https://doi.org/10.1503/cmaj.220508
Aimee J. Sarti
Department of Critical Care (Sarti, Pagliarello, Cardinal), Ottawa Hospital; Ottawa Hospital Research Institute (Sarti, Sutherland, Vanderspank-Wright); Common Law Section (Chandler), Faculty of Law, and School of Nursing (Vanderspank-Wright), Faculty of Health Sciences, University of Ottawa; Canadian Blood Services (Shemie); Practice, Performance and Innovation Unit (Landriault), Royal College of Physicians and Surgeons of Canada; Division of Critical Care (Dhanani), Children’s Hospital of Eastern Ontario, Ottawa, Ont.; Department of Critical Care (Meade), Hamilton Health Sciences, Hamilton, Ont.; Department of Pediatrics (Shemie), McGill University; Department of Medicine (Chassé), Centre hospitalier de L’Université de Montréal, Montréal, Que.; Department of Adult Critical Care (Valiani, Kawchuk), Saskatchewan Health Authority, Saskatoon, Sask.; BC Transplant (Keenan); Division of Critical Care (Keenan), Department of Medicine, Univeristy of British Columbia, Vancouver, BC; Population Health and Optimal Health Practices Research Unit (Weiss), Trauma–Emergency–Critical Care Medicine, CHU de Québec-Université Laval, Quebec, Que.; Faculty of Health Sciences (Nickerson), University of Manitoba; Transplant Manitoba (Werestiuk), Winnipeg, Man.; University of Calgary (Kramer), Calgary, Alta.; Department of Critical Care (Beed), Faculty of Medicine, Dalhousie University, Halifax, NS; Canadian Blood Services (Lotherington), Halifax, NS; Horizon Health Network (Gatien), Miramichi, NB; Organ Procurement and Exchange of Newfoundland and Labrador (OPEN) (Parsons), St. John’s, NL.
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Stephanie Sutherland
Department of Critical Care (Sarti, Pagliarello, Cardinal), Ottawa Hospital; Ottawa Hospital Research Institute (Sarti, Sutherland, Vanderspank-Wright); Common Law Section (Chandler), Faculty of Law, and School of Nursing (Vanderspank-Wright), Faculty of Health Sciences, University of Ottawa; Canadian Blood Services (Shemie); Practice, Performance and Innovation Unit (Landriault), Royal College of Physicians and Surgeons of Canada; Division of Critical Care (Dhanani), Children’s Hospital of Eastern Ontario, Ottawa, Ont.; Department of Critical Care (Meade), Hamilton Health Sciences, Hamilton, Ont.; Department of Pediatrics (Shemie), McGill University; Department of Medicine (Chassé), Centre hospitalier de L’Université de Montréal, Montréal, Que.; Department of Adult Critical Care (Valiani, Kawchuk), Saskatchewan Health Authority, Saskatoon, Sask.; BC Transplant (Keenan); Division of Critical Care (Keenan), Department of Medicine, Univeristy of British Columbia, Vancouver, BC; Population Health and Optimal Health Practices Research Unit (Weiss), Trauma–Emergency–Critical Care Medicine, CHU de Québec-Université Laval, Quebec, Que.; Faculty of Health Sciences (Nickerson), University of Manitoba; Transplant Manitoba (Werestiuk), Winnipeg, Man.; University of Calgary (Kramer), Calgary, Alta.; Department of Critical Care (Beed), Faculty of Medicine, Dalhousie University, Halifax, NS; Canadian Blood Services (Lotherington), Halifax, NS; Horizon Health Network (Gatien), Miramichi, NB; Organ Procurement and Exchange of Newfoundland and Labrador (OPEN) (Parsons), St. John’s, NL.
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Maureen Meade
Department of Critical Care (Sarti, Pagliarello, Cardinal), Ottawa Hospital; Ottawa Hospital Research Institute (Sarti, Sutherland, Vanderspank-Wright); Common Law Section (Chandler), Faculty of Law, and School of Nursing (Vanderspank-Wright), Faculty of Health Sciences, University of Ottawa; Canadian Blood Services (Shemie); Practice, Performance and Innovation Unit (Landriault), Royal College of Physicians and Surgeons of Canada; Division of Critical Care (Dhanani), Children’s Hospital of Eastern Ontario, Ottawa, Ont.; Department of Critical Care (Meade), Hamilton Health Sciences, Hamilton, Ont.; Department of Pediatrics (Shemie), McGill University; Department of Medicine (Chassé), Centre hospitalier de L’Université de Montréal, Montréal, Que.; Department of Adult Critical Care (Valiani, Kawchuk), Saskatchewan Health Authority, Saskatoon, Sask.; BC Transplant (Keenan); Division of Critical Care (Keenan), Department of Medicine, Univeristy of British Columbia, Vancouver, BC; Population Health and Optimal Health Practices Research Unit (Weiss), Trauma–Emergency–Critical Care Medicine, CHU de Québec-Université Laval, Quebec, Que.; Faculty of Health Sciences (Nickerson), University of Manitoba; Transplant Manitoba (Werestiuk), Winnipeg, Man.; University of Calgary (Kramer), Calgary, Alta.; Department of Critical Care (Beed), Faculty of Medicine, Dalhousie University, Halifax, NS; Canadian Blood Services (Lotherington), Halifax, NS; Horizon Health Network (Gatien), Miramichi, NB; Organ Procurement and Exchange of Newfoundland and Labrador (OPEN) (Parsons), St. John’s, NL.
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Sam Shemie
Department of Critical Care (Sarti, Pagliarello, Cardinal), Ottawa Hospital; Ottawa Hospital Research Institute (Sarti, Sutherland, Vanderspank-Wright); Common Law Section (Chandler), Faculty of Law, and School of Nursing (Vanderspank-Wright), Faculty of Health Sciences, University of Ottawa; Canadian Blood Services (Shemie); Practice, Performance and Innovation Unit (Landriault), Royal College of Physicians and Surgeons of Canada; Division of Critical Care (Dhanani), Children’s Hospital of Eastern Ontario, Ottawa, Ont.; Department of Critical Care (Meade), Hamilton Health Sciences, Hamilton, Ont.; Department of Pediatrics (Shemie), McGill University; Department of Medicine (Chassé), Centre hospitalier de L’Université de Montréal, Montréal, Que.; Department of Adult Critical Care (Valiani, Kawchuk), Saskatchewan Health Authority, Saskatoon, Sask.; BC Transplant (Keenan); Division of Critical Care (Keenan), Department of Medicine, Univeristy of British Columbia, Vancouver, BC; Population Health and Optimal Health Practices Research Unit (Weiss), Trauma–Emergency–Critical Care Medicine, CHU de Québec-Université Laval, Quebec, Que.; Faculty of Health Sciences (Nickerson), University of Manitoba; Transplant Manitoba (Werestiuk), Winnipeg, Man.; University of Calgary (Kramer), Calgary, Alta.; Department of Critical Care (Beed), Faculty of Medicine, Dalhousie University, Halifax, NS; Canadian Blood Services (Lotherington), Halifax, NS; Horizon Health Network (Gatien), Miramichi, NB; Organ Procurement and Exchange of Newfoundland and Labrador (OPEN) (Parsons), St. John’s, NL.
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Angele Landriault
Department of Critical Care (Sarti, Pagliarello, Cardinal), Ottawa Hospital; Ottawa Hospital Research Institute (Sarti, Sutherland, Vanderspank-Wright); Common Law Section (Chandler), Faculty of Law, and School of Nursing (Vanderspank-Wright), Faculty of Health Sciences, University of Ottawa; Canadian Blood Services (Shemie); Practice, Performance and Innovation Unit (Landriault), Royal College of Physicians and Surgeons of Canada; Division of Critical Care (Dhanani), Children’s Hospital of Eastern Ontario, Ottawa, Ont.; Department of Critical Care (Meade), Hamilton Health Sciences, Hamilton, Ont.; Department of Pediatrics (Shemie), McGill University; Department of Medicine (Chassé), Centre hospitalier de L’Université de Montréal, Montréal, Que.; Department of Adult Critical Care (Valiani, Kawchuk), Saskatchewan Health Authority, Saskatoon, Sask.; BC Transplant (Keenan); Division of Critical Care (Keenan), Department of Medicine, Univeristy of British Columbia, Vancouver, BC; Population Health and Optimal Health Practices Research Unit (Weiss), Trauma–Emergency–Critical Care Medicine, CHU de Québec-Université Laval, Quebec, Que.; Faculty of Health Sciences (Nickerson), University of Manitoba; Transplant Manitoba (Werestiuk), Winnipeg, Man.; University of Calgary (Kramer), Calgary, Alta.; Department of Critical Care (Beed), Faculty of Medicine, Dalhousie University, Halifax, NS; Canadian Blood Services (Lotherington), Halifax, NS; Horizon Health Network (Gatien), Miramichi, NB; Organ Procurement and Exchange of Newfoundland and Labrador (OPEN) (Parsons), St. John’s, NL.
MA
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Brandi Vanderspank-Wright
Department of Critical Care (Sarti, Pagliarello, Cardinal), Ottawa Hospital; Ottawa Hospital Research Institute (Sarti, Sutherland, Vanderspank-Wright); Common Law Section (Chandler), Faculty of Law, and School of Nursing (Vanderspank-Wright), Faculty of Health Sciences, University of Ottawa; Canadian Blood Services (Shemie); Practice, Performance and Innovation Unit (Landriault), Royal College of Physicians and Surgeons of Canada; Division of Critical Care (Dhanani), Children’s Hospital of Eastern Ontario, Ottawa, Ont.; Department of Critical Care (Meade), Hamilton Health Sciences, Hamilton, Ont.; Department of Pediatrics (Shemie), McGill University; Department of Medicine (Chassé), Centre hospitalier de L’Université de Montréal, Montréal, Que.; Department of Adult Critical Care (Valiani, Kawchuk), Saskatchewan Health Authority, Saskatoon, Sask.; BC Transplant (Keenan); Division of Critical Care (Keenan), Department of Medicine, Univeristy of British Columbia, Vancouver, BC; Population Health and Optimal Health Practices Research Unit (Weiss), Trauma–Emergency–Critical Care Medicine, CHU de Québec-Université Laval, Quebec, Que.; Faculty of Health Sciences (Nickerson), University of Manitoba; Transplant Manitoba (Werestiuk), Winnipeg, Man.; University of Calgary (Kramer), Calgary, Alta.; Department of Critical Care (Beed), Faculty of Medicine, Dalhousie University, Halifax, NS; Canadian Blood Services (Lotherington), Halifax, NS; Horizon Health Network (Gatien), Miramichi, NB; Organ Procurement and Exchange of Newfoundland and Labrador (OPEN) (Parsons), St. John’s, NL.
PhD
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Sabira Valiani
Department of Critical Care (Sarti, Pagliarello, Cardinal), Ottawa Hospital; Ottawa Hospital Research Institute (Sarti, Sutherland, Vanderspank-Wright); Common Law Section (Chandler), Faculty of Law, and School of Nursing (Vanderspank-Wright), Faculty of Health Sciences, University of Ottawa; Canadian Blood Services (Shemie); Practice, Performance and Innovation Unit (Landriault), Royal College of Physicians and Surgeons of Canada; Division of Critical Care (Dhanani), Children’s Hospital of Eastern Ontario, Ottawa, Ont.; Department of Critical Care (Meade), Hamilton Health Sciences, Hamilton, Ont.; Department of Pediatrics (Shemie), McGill University; Department of Medicine (Chassé), Centre hospitalier de L’Université de Montréal, Montréal, Que.; Department of Adult Critical Care (Valiani, Kawchuk), Saskatchewan Health Authority, Saskatoon, Sask.; BC Transplant (Keenan); Division of Critical Care (Keenan), Department of Medicine, Univeristy of British Columbia, Vancouver, BC; Population Health and Optimal Health Practices Research Unit (Weiss), Trauma–Emergency–Critical Care Medicine, CHU de Québec-Université Laval, Quebec, Que.; Faculty of Health Sciences (Nickerson), University of Manitoba; Transplant Manitoba (Werestiuk), Winnipeg, Man.; University of Calgary (Kramer), Calgary, Alta.; Department of Critical Care (Beed), Faculty of Medicine, Dalhousie University, Halifax, NS; Canadian Blood Services (Lotherington), Halifax, NS; Horizon Health Network (Gatien), Miramichi, NB; Organ Procurement and Exchange of Newfoundland and Labrador (OPEN) (Parsons), St. John’s, NL.
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Sean Keenan
Department of Critical Care (Sarti, Pagliarello, Cardinal), Ottawa Hospital; Ottawa Hospital Research Institute (Sarti, Sutherland, Vanderspank-Wright); Common Law Section (Chandler), Faculty of Law, and School of Nursing (Vanderspank-Wright), Faculty of Health Sciences, University of Ottawa; Canadian Blood Services (Shemie); Practice, Performance and Innovation Unit (Landriault), Royal College of Physicians and Surgeons of Canada; Division of Critical Care (Dhanani), Children’s Hospital of Eastern Ontario, Ottawa, Ont.; Department of Critical Care (Meade), Hamilton Health Sciences, Hamilton, Ont.; Department of Pediatrics (Shemie), McGill University; Department of Medicine (Chassé), Centre hospitalier de L’Université de Montréal, Montréal, Que.; Department of Adult Critical Care (Valiani, Kawchuk), Saskatchewan Health Authority, Saskatoon, Sask.; BC Transplant (Keenan); Division of Critical Care (Keenan), Department of Medicine, Univeristy of British Columbia, Vancouver, BC; Population Health and Optimal Health Practices Research Unit (Weiss), Trauma–Emergency–Critical Care Medicine, CHU de Québec-Université Laval, Quebec, Que.; Faculty of Health Sciences (Nickerson), University of Manitoba; Transplant Manitoba (Werestiuk), Winnipeg, Man.; University of Calgary (Kramer), Calgary, Alta.; Department of Critical Care (Beed), Faculty of Medicine, Dalhousie University, Halifax, NS; Canadian Blood Services (Lotherington), Halifax, NS; Horizon Health Network (Gatien), Miramichi, NB; Organ Procurement and Exchange of Newfoundland and Labrador (OPEN) (Parsons), St. John’s, NL.
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Matthew J. Weiss
Department of Critical Care (Sarti, Pagliarello, Cardinal), Ottawa Hospital; Ottawa Hospital Research Institute (Sarti, Sutherland, Vanderspank-Wright); Common Law Section (Chandler), Faculty of Law, and School of Nursing (Vanderspank-Wright), Faculty of Health Sciences, University of Ottawa; Canadian Blood Services (Shemie); Practice, Performance and Innovation Unit (Landriault), Royal College of Physicians and Surgeons of Canada; Division of Critical Care (Dhanani), Children’s Hospital of Eastern Ontario, Ottawa, Ont.; Department of Critical Care (Meade), Hamilton Health Sciences, Hamilton, Ont.; Department of Pediatrics (Shemie), McGill University; Department of Medicine (Chassé), Centre hospitalier de L’Université de Montréal, Montréal, Que.; Department of Adult Critical Care (Valiani, Kawchuk), Saskatchewan Health Authority, Saskatoon, Sask.; BC Transplant (Keenan); Division of Critical Care (Keenan), Department of Medicine, Univeristy of British Columbia, Vancouver, BC; Population Health and Optimal Health Practices Research Unit (Weiss), Trauma–Emergency–Critical Care Medicine, CHU de Québec-Université Laval, Quebec, Que.; Faculty of Health Sciences (Nickerson), University of Manitoba; Transplant Manitoba (Werestiuk), Winnipeg, Man.; University of Calgary (Kramer), Calgary, Alta.; Department of Critical Care (Beed), Faculty of Medicine, Dalhousie University, Halifax, NS; Canadian Blood Services (Lotherington), Halifax, NS; Horizon Health Network (Gatien), Miramichi, NB; Organ Procurement and Exchange of Newfoundland and Labrador (OPEN) (Parsons), St. John’s, NL.
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Kim Werestiuk
Department of Critical Care (Sarti, Pagliarello, Cardinal), Ottawa Hospital; Ottawa Hospital Research Institute (Sarti, Sutherland, Vanderspank-Wright); Common Law Section (Chandler), Faculty of Law, and School of Nursing (Vanderspank-Wright), Faculty of Health Sciences, University of Ottawa; Canadian Blood Services (Shemie); Practice, Performance and Innovation Unit (Landriault), Royal College of Physicians and Surgeons of Canada; Division of Critical Care (Dhanani), Children’s Hospital of Eastern Ontario, Ottawa, Ont.; Department of Critical Care (Meade), Hamilton Health Sciences, Hamilton, Ont.; Department of Pediatrics (Shemie), McGill University; Department of Medicine (Chassé), Centre hospitalier de L’Université de Montréal, Montréal, Que.; Department of Adult Critical Care (Valiani, Kawchuk), Saskatchewan Health Authority, Saskatoon, Sask.; BC Transplant (Keenan); Division of Critical Care (Keenan), Department of Medicine, Univeristy of British Columbia, Vancouver, BC; Population Health and Optimal Health Practices Research Unit (Weiss), Trauma–Emergency–Critical Care Medicine, CHU de Québec-Université Laval, Quebec, Que.; Faculty of Health Sciences (Nickerson), University of Manitoba; Transplant Manitoba (Werestiuk), Winnipeg, Man.; University of Calgary (Kramer), Calgary, Alta.; Department of Critical Care (Beed), Faculty of Medicine, Dalhousie University, Halifax, NS; Canadian Blood Services (Lotherington), Halifax, NS; Horizon Health Network (Gatien), Miramichi, NB; Organ Procurement and Exchange of Newfoundland and Labrador (OPEN) (Parsons), St. John’s, NL.
RN
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Andreas H. Kramer
Department of Critical Care (Sarti, Pagliarello, Cardinal), Ottawa Hospital; Ottawa Hospital Research Institute (Sarti, Sutherland, Vanderspank-Wright); Common Law Section (Chandler), Faculty of Law, and School of Nursing (Vanderspank-Wright), Faculty of Health Sciences, University of Ottawa; Canadian Blood Services (Shemie); Practice, Performance and Innovation Unit (Landriault), Royal College of Physicians and Surgeons of Canada; Division of Critical Care (Dhanani), Children’s Hospital of Eastern Ontario, Ottawa, Ont.; Department of Critical Care (Meade), Hamilton Health Sciences, Hamilton, Ont.; Department of Pediatrics (Shemie), McGill University; Department of Medicine (Chassé), Centre hospitalier de L’Université de Montréal, Montréal, Que.; Department of Adult Critical Care (Valiani, Kawchuk), Saskatchewan Health Authority, Saskatoon, Sask.; BC Transplant (Keenan); Division of Critical Care (Keenan), Department of Medicine, Univeristy of British Columbia, Vancouver, BC; Population Health and Optimal Health Practices Research Unit (Weiss), Trauma–Emergency–Critical Care Medicine, CHU de Québec-Université Laval, Quebec, Que.; Faculty of Health Sciences (Nickerson), University of Manitoba; Transplant Manitoba (Werestiuk), Winnipeg, Man.; University of Calgary (Kramer), Calgary, Alta.; Department of Critical Care (Beed), Faculty of Medicine, Dalhousie University, Halifax, NS; Canadian Blood Services (Lotherington), Halifax, NS; Horizon Health Network (Gatien), Miramichi, NB; Organ Procurement and Exchange of Newfoundland and Labrador (OPEN) (Parsons), St. John’s, NL.
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Joann Kawchuk
Department of Critical Care (Sarti, Pagliarello, Cardinal), Ottawa Hospital; Ottawa Hospital Research Institute (Sarti, Sutherland, Vanderspank-Wright); Common Law Section (Chandler), Faculty of Law, and School of Nursing (Vanderspank-Wright), Faculty of Health Sciences, University of Ottawa; Canadian Blood Services (Shemie); Practice, Performance and Innovation Unit (Landriault), Royal College of Physicians and Surgeons of Canada; Division of Critical Care (Dhanani), Children’s Hospital of Eastern Ontario, Ottawa, Ont.; Department of Critical Care (Meade), Hamilton Health Sciences, Hamilton, Ont.; Department of Pediatrics (Shemie), McGill University; Department of Medicine (Chassé), Centre hospitalier de L’Université de Montréal, Montréal, Que.; Department of Adult Critical Care (Valiani, Kawchuk), Saskatchewan Health Authority, Saskatoon, Sask.; BC Transplant (Keenan); Division of Critical Care (Keenan), Department of Medicine, Univeristy of British Columbia, Vancouver, BC; Population Health and Optimal Health Practices Research Unit (Weiss), Trauma–Emergency–Critical Care Medicine, CHU de Québec-Université Laval, Quebec, Que.; Faculty of Health Sciences (Nickerson), University of Manitoba; Transplant Manitoba (Werestiuk), Winnipeg, Man.; University of Calgary (Kramer), Calgary, Alta.; Department of Critical Care (Beed), Faculty of Medicine, Dalhousie University, Halifax, NS; Canadian Blood Services (Lotherington), Halifax, NS; Horizon Health Network (Gatien), Miramichi, NB; Organ Procurement and Exchange of Newfoundland and Labrador (OPEN) (Parsons), St. John’s, NL.
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Stephen Beed
Department of Critical Care (Sarti, Pagliarello, Cardinal), Ottawa Hospital; Ottawa Hospital Research Institute (Sarti, Sutherland, Vanderspank-Wright); Common Law Section (Chandler), Faculty of Law, and School of Nursing (Vanderspank-Wright), Faculty of Health Sciences, University of Ottawa; Canadian Blood Services (Shemie); Practice, Performance and Innovation Unit (Landriault), Royal College of Physicians and Surgeons of Canada; Division of Critical Care (Dhanani), Children’s Hospital of Eastern Ontario, Ottawa, Ont.; Department of Critical Care (Meade), Hamilton Health Sciences, Hamilton, Ont.; Department of Pediatrics (Shemie), McGill University; Department of Medicine (Chassé), Centre hospitalier de L’Université de Montréal, Montréal, Que.; Department of Adult Critical Care (Valiani, Kawchuk), Saskatchewan Health Authority, Saskatoon, Sask.; BC Transplant (Keenan); Division of Critical Care (Keenan), Department of Medicine, Univeristy of British Columbia, Vancouver, BC; Population Health and Optimal Health Practices Research Unit (Weiss), Trauma–Emergency–Critical Care Medicine, CHU de Québec-Université Laval, Quebec, Que.; Faculty of Health Sciences (Nickerson), University of Manitoba; Transplant Manitoba (Werestiuk), Winnipeg, Man.; University of Calgary (Kramer), Calgary, Alta.; Department of Critical Care (Beed), Faculty of Medicine, Dalhousie University, Halifax, NS; Canadian Blood Services (Lotherington), Halifax, NS; Horizon Health Network (Gatien), Miramichi, NB; Organ Procurement and Exchange of Newfoundland and Labrador (OPEN) (Parsons), St. John’s, NL.
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Sonny Dhanani
Department of Critical Care (Sarti, Pagliarello, Cardinal), Ottawa Hospital; Ottawa Hospital Research Institute (Sarti, Sutherland, Vanderspank-Wright); Common Law Section (Chandler), Faculty of Law, and School of Nursing (Vanderspank-Wright), Faculty of Health Sciences, University of Ottawa; Canadian Blood Services (Shemie); Practice, Performance and Innovation Unit (Landriault), Royal College of Physicians and Surgeons of Canada; Division of Critical Care (Dhanani), Children’s Hospital of Eastern Ontario, Ottawa, Ont.; Department of Critical Care (Meade), Hamilton Health Sciences, Hamilton, Ont.; Department of Pediatrics (Shemie), McGill University; Department of Medicine (Chassé), Centre hospitalier de L’Université de Montréal, Montréal, Que.; Department of Adult Critical Care (Valiani, Kawchuk), Saskatchewan Health Authority, Saskatoon, Sask.; BC Transplant (Keenan); Division of Critical Care (Keenan), Department of Medicine, Univeristy of British Columbia, Vancouver, BC; Population Health and Optimal Health Practices Research Unit (Weiss), Trauma–Emergency–Critical Care Medicine, CHU de Québec-Université Laval, Quebec, Que.; Faculty of Health Sciences (Nickerson), University of Manitoba; Transplant Manitoba (Werestiuk), Winnipeg, Man.; University of Calgary (Kramer), Calgary, Alta.; Department of Critical Care (Beed), Faculty of Medicine, Dalhousie University, Halifax, NS; Canadian Blood Services (Lotherington), Halifax, NS; Horizon Health Network (Gatien), Miramichi, NB; Organ Procurement and Exchange of Newfoundland and Labrador (OPEN) (Parsons), St. John’s, NL.
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Giuseppe Pagliarello
Department of Critical Care (Sarti, Pagliarello, Cardinal), Ottawa Hospital; Ottawa Hospital Research Institute (Sarti, Sutherland, Vanderspank-Wright); Common Law Section (Chandler), Faculty of Law, and School of Nursing (Vanderspank-Wright), Faculty of Health Sciences, University of Ottawa; Canadian Blood Services (Shemie); Practice, Performance and Innovation Unit (Landriault), Royal College of Physicians and Surgeons of Canada; Division of Critical Care (Dhanani), Children’s Hospital of Eastern Ontario, Ottawa, Ont.; Department of Critical Care (Meade), Hamilton Health Sciences, Hamilton, Ont.; Department of Pediatrics (Shemie), McGill University; Department of Medicine (Chassé), Centre hospitalier de L’Université de Montréal, Montréal, Que.; Department of Adult Critical Care (Valiani, Kawchuk), Saskatchewan Health Authority, Saskatoon, Sask.; BC Transplant (Keenan); Division of Critical Care (Keenan), Department of Medicine, Univeristy of British Columbia, Vancouver, BC; Population Health and Optimal Health Practices Research Unit (Weiss), Trauma–Emergency–Critical Care Medicine, CHU de Québec-Université Laval, Quebec, Que.; Faculty of Health Sciences (Nickerson), University of Manitoba; Transplant Manitoba (Werestiuk), Winnipeg, Man.; University of Calgary (Kramer), Calgary, Alta.; Department of Critical Care (Beed), Faculty of Medicine, Dalhousie University, Halifax, NS; Canadian Blood Services (Lotherington), Halifax, NS; Horizon Health Network (Gatien), Miramichi, NB; Organ Procurement and Exchange of Newfoundland and Labrador (OPEN) (Parsons), St. John’s, NL.
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Michaël Chassé
Department of Critical Care (Sarti, Pagliarello, Cardinal), Ottawa Hospital; Ottawa Hospital Research Institute (Sarti, Sutherland, Vanderspank-Wright); Common Law Section (Chandler), Faculty of Law, and School of Nursing (Vanderspank-Wright), Faculty of Health Sciences, University of Ottawa; Canadian Blood Services (Shemie); Practice, Performance and Innovation Unit (Landriault), Royal College of Physicians and Surgeons of Canada; Division of Critical Care (Dhanani), Children’s Hospital of Eastern Ontario, Ottawa, Ont.; Department of Critical Care (Meade), Hamilton Health Sciences, Hamilton, Ont.; Department of Pediatrics (Shemie), McGill University; Department of Medicine (Chassé), Centre hospitalier de L’Université de Montréal, Montréal, Que.; Department of Adult Critical Care (Valiani, Kawchuk), Saskatchewan Health Authority, Saskatoon, Sask.; BC Transplant (Keenan); Division of Critical Care (Keenan), Department of Medicine, Univeristy of British Columbia, Vancouver, BC; Population Health and Optimal Health Practices Research Unit (Weiss), Trauma–Emergency–Critical Care Medicine, CHU de Québec-Université Laval, Quebec, Que.; Faculty of Health Sciences (Nickerson), University of Manitoba; Transplant Manitoba (Werestiuk), Winnipeg, Man.; University of Calgary (Kramer), Calgary, Alta.; Department of Critical Care (Beed), Faculty of Medicine, Dalhousie University, Halifax, NS; Canadian Blood Services (Lotherington), Halifax, NS; Horizon Health Network (Gatien), Miramichi, NB; Organ Procurement and Exchange of Newfoundland and Labrador (OPEN) (Parsons), St. John’s, NL.
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Ken Lotherington
Department of Critical Care (Sarti, Pagliarello, Cardinal), Ottawa Hospital; Ottawa Hospital Research Institute (Sarti, Sutherland, Vanderspank-Wright); Common Law Section (Chandler), Faculty of Law, and School of Nursing (Vanderspank-Wright), Faculty of Health Sciences, University of Ottawa; Canadian Blood Services (Shemie); Practice, Performance and Innovation Unit (Landriault), Royal College of Physicians and Surgeons of Canada; Division of Critical Care (Dhanani), Children’s Hospital of Eastern Ontario, Ottawa, Ont.; Department of Critical Care (Meade), Hamilton Health Sciences, Hamilton, Ont.; Department of Pediatrics (Shemie), McGill University; Department of Medicine (Chassé), Centre hospitalier de L’Université de Montréal, Montréal, Que.; Department of Adult Critical Care (Valiani, Kawchuk), Saskatchewan Health Authority, Saskatoon, Sask.; BC Transplant (Keenan); Division of Critical Care (Keenan), Department of Medicine, Univeristy of British Columbia, Vancouver, BC; Population Health and Optimal Health Practices Research Unit (Weiss), Trauma–Emergency–Critical Care Medicine, CHU de Québec-Université Laval, Quebec, Que.; Faculty of Health Sciences (Nickerson), University of Manitoba; Transplant Manitoba (Werestiuk), Winnipeg, Man.; University of Calgary (Kramer), Calgary, Alta.; Department of Critical Care (Beed), Faculty of Medicine, Dalhousie University, Halifax, NS; Canadian Blood Services (Lotherington), Halifax, NS; Horizon Health Network (Gatien), Miramichi, NB; Organ Procurement and Exchange of Newfoundland and Labrador (OPEN) (Parsons), St. John’s, NL.
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Mary Gatien
Department of Critical Care (Sarti, Pagliarello, Cardinal), Ottawa Hospital; Ottawa Hospital Research Institute (Sarti, Sutherland, Vanderspank-Wright); Common Law Section (Chandler), Faculty of Law, and School of Nursing (Vanderspank-Wright), Faculty of Health Sciences, University of Ottawa; Canadian Blood Services (Shemie); Practice, Performance and Innovation Unit (Landriault), Royal College of Physicians and Surgeons of Canada; Division of Critical Care (Dhanani), Children’s Hospital of Eastern Ontario, Ottawa, Ont.; Department of Critical Care (Meade), Hamilton Health Sciences, Hamilton, Ont.; Department of Pediatrics (Shemie), McGill University; Department of Medicine (Chassé), Centre hospitalier de L’Université de Montréal, Montréal, Que.; Department of Adult Critical Care (Valiani, Kawchuk), Saskatchewan Health Authority, Saskatoon, Sask.; BC Transplant (Keenan); Division of Critical Care (Keenan), Department of Medicine, Univeristy of British Columbia, Vancouver, BC; Population Health and Optimal Health Practices Research Unit (Weiss), Trauma–Emergency–Critical Care Medicine, CHU de Québec-Université Laval, Quebec, Que.; Faculty of Health Sciences (Nickerson), University of Manitoba; Transplant Manitoba (Werestiuk), Winnipeg, Man.; University of Calgary (Kramer), Calgary, Alta.; Department of Critical Care (Beed), Faculty of Medicine, Dalhousie University, Halifax, NS; Canadian Blood Services (Lotherington), Halifax, NS; Horizon Health Network (Gatien), Miramichi, NB; Organ Procurement and Exchange of Newfoundland and Labrador (OPEN) (Parsons), St. John’s, NL.
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Kim Parsons
Department of Critical Care (Sarti, Pagliarello, Cardinal), Ottawa Hospital; Ottawa Hospital Research Institute (Sarti, Sutherland, Vanderspank-Wright); Common Law Section (Chandler), Faculty of Law, and School of Nursing (Vanderspank-Wright), Faculty of Health Sciences, University of Ottawa; Canadian Blood Services (Shemie); Practice, Performance and Innovation Unit (Landriault), Royal College of Physicians and Surgeons of Canada; Division of Critical Care (Dhanani), Children’s Hospital of Eastern Ontario, Ottawa, Ont.; Department of Critical Care (Meade), Hamilton Health Sciences, Hamilton, Ont.; Department of Pediatrics (Shemie), McGill University; Department of Medicine (Chassé), Centre hospitalier de L’Université de Montréal, Montréal, Que.; Department of Adult Critical Care (Valiani, Kawchuk), Saskatchewan Health Authority, Saskatoon, Sask.; BC Transplant (Keenan); Division of Critical Care (Keenan), Department of Medicine, Univeristy of British Columbia, Vancouver, BC; Population Health and Optimal Health Practices Research Unit (Weiss), Trauma–Emergency–Critical Care Medicine, CHU de Québec-Université Laval, Quebec, Que.; Faculty of Health Sciences (Nickerson), University of Manitoba; Transplant Manitoba (Werestiuk), Winnipeg, Man.; University of Calgary (Kramer), Calgary, Alta.; Department of Critical Care (Beed), Faculty of Medicine, Dalhousie University, Halifax, NS; Canadian Blood Services (Lotherington), Halifax, NS; Horizon Health Network (Gatien), Miramichi, NB; Organ Procurement and Exchange of Newfoundland and Labrador (OPEN) (Parsons), St. John’s, NL.
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Jennifer A. Chandler
Department of Critical Care (Sarti, Pagliarello, Cardinal), Ottawa Hospital; Ottawa Hospital Research Institute (Sarti, Sutherland, Vanderspank-Wright); Common Law Section (Chandler), Faculty of Law, and School of Nursing (Vanderspank-Wright), Faculty of Health Sciences, University of Ottawa; Canadian Blood Services (Shemie); Practice, Performance and Innovation Unit (Landriault), Royal College of Physicians and Surgeons of Canada; Division of Critical Care (Dhanani), Children’s Hospital of Eastern Ontario, Ottawa, Ont.; Department of Critical Care (Meade), Hamilton Health Sciences, Hamilton, Ont.; Department of Pediatrics (Shemie), McGill University; Department of Medicine (Chassé), Centre hospitalier de L’Université de Montréal, Montréal, Que.; Department of Adult Critical Care (Valiani, Kawchuk), Saskatchewan Health Authority, Saskatoon, Sask.; BC Transplant (Keenan); Division of Critical Care (Keenan), Department of Medicine, Univeristy of British Columbia, Vancouver, BC; Population Health and Optimal Health Practices Research Unit (Weiss), Trauma–Emergency–Critical Care Medicine, CHU de Québec-Université Laval, Quebec, Que.; Faculty of Health Sciences (Nickerson), University of Manitoba; Transplant Manitoba (Werestiuk), Winnipeg, Man.; University of Calgary (Kramer), Calgary, Alta.; Department of Critical Care (Beed), Faculty of Medicine, Dalhousie University, Halifax, NS; Canadian Blood Services (Lotherington), Halifax, NS; Horizon Health Network (Gatien), Miramichi, NB; Organ Procurement and Exchange of Newfoundland and Labrador (OPEN) (Parsons), St. John’s, NL.
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Peter Nickerson
Department of Critical Care (Sarti, Pagliarello, Cardinal), Ottawa Hospital; Ottawa Hospital Research Institute (Sarti, Sutherland, Vanderspank-Wright); Common Law Section (Chandler), Faculty of Law, and School of Nursing (Vanderspank-Wright), Faculty of Health Sciences, University of Ottawa; Canadian Blood Services (Shemie); Practice, Performance and Innovation Unit (Landriault), Royal College of Physicians and Surgeons of Canada; Division of Critical Care (Dhanani), Children’s Hospital of Eastern Ontario, Ottawa, Ont.; Department of Critical Care (Meade), Hamilton Health Sciences, Hamilton, Ont.; Department of Pediatrics (Shemie), McGill University; Department of Medicine (Chassé), Centre hospitalier de L’Université de Montréal, Montréal, Que.; Department of Adult Critical Care (Valiani, Kawchuk), Saskatchewan Health Authority, Saskatoon, Sask.; BC Transplant (Keenan); Division of Critical Care (Keenan), Department of Medicine, Univeristy of British Columbia, Vancouver, BC; Population Health and Optimal Health Practices Research Unit (Weiss), Trauma–Emergency–Critical Care Medicine, CHU de Québec-Université Laval, Quebec, Que.; Faculty of Health Sciences (Nickerson), University of Manitoba; Transplant Manitoba (Werestiuk), Winnipeg, Man.; University of Calgary (Kramer), Calgary, Alta.; Department of Critical Care (Beed), Faculty of Medicine, Dalhousie University, Halifax, NS; Canadian Blood Services (Lotherington), Halifax, NS; Horizon Health Network (Gatien), Miramichi, NB; Organ Procurement and Exchange of Newfoundland and Labrador (OPEN) (Parsons), St. John’s, NL.
MD
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Pierre Cardinal
Department of Critical Care (Sarti, Pagliarello, Cardinal), Ottawa Hospital; Ottawa Hospital Research Institute (Sarti, Sutherland, Vanderspank-Wright); Common Law Section (Chandler), Faculty of Law, and School of Nursing (Vanderspank-Wright), Faculty of Health Sciences, University of Ottawa; Canadian Blood Services (Shemie); Practice, Performance and Innovation Unit (Landriault), Royal College of Physicians and Surgeons of Canada; Division of Critical Care (Dhanani), Children’s Hospital of Eastern Ontario, Ottawa, Ont.; Department of Critical Care (Meade), Hamilton Health Sciences, Hamilton, Ont.; Department of Pediatrics (Shemie), McGill University; Department of Medicine (Chassé), Centre hospitalier de L’Université de Montréal, Montréal, Que.; Department of Adult Critical Care (Valiani, Kawchuk), Saskatchewan Health Authority, Saskatoon, Sask.; BC Transplant (Keenan); Division of Critical Care (Keenan), Department of Medicine, Univeristy of British Columbia, Vancouver, BC; Population Health and Optimal Health Practices Research Unit (Weiss), Trauma–Emergency–Critical Care Medicine, CHU de Québec-Université Laval, Quebec, Que.; Faculty of Health Sciences (Nickerson), University of Manitoba; Transplant Manitoba (Werestiuk), Winnipeg, Man.; University of Calgary (Kramer), Calgary, Alta.; Department of Critical Care (Beed), Faculty of Medicine, Dalhousie University, Halifax, NS; Canadian Blood Services (Lotherington), Halifax, NS; Horizon Health Network (Gatien), Miramichi, NB; Organ Procurement and Exchange of Newfoundland and Labrador (OPEN) (Parsons), St. John’s, NL.
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Abstract

Background: Decisions about organ donation are stressful for family members of potential organ donors. We sought to comprehensively explore the donation process from interviews conducted with family members of patients admitted to pediatric and adult intensive care units in Canada.

Methods: We conducted a qualitative study using semistructured, in-depth interviews with 271 family members asked to make an organ donation decision. We recruited participants from all provinces with an organ donation organization (n = 10), and analyzed themes using a modified grounded theory approach. On the basis of these interviews, suggestions were made by researchers and family members on how to improve the process of organ donation.

Results: We identified 3 main themes and 9 subthemes. Families need more comprehensive support around the time of donation, including having access to someone with shared experiences, support during specific moments as needed and better support during critical transitions (e.g., when the donor body goes to the operating room). The theme of better connection to recipient(s) included receiving information about the donation surgery (e.g., which organs were recovered), establishing connection with recipients (e.g., via social networks or letters) and planned encounters. Support after donation, such as updates on organ transplantation, early mental health checks and continued connection to donor organizations, could be improved. We derived 20 suggestions for improving the organ donation process, derived from interviews with family members of pediatric and adult organ donors.

Interpretation: We found gaps in family support during end-of-life and donation care. Feelings of abandonment, lack of support and poor-to-little follow-up provide the empirical findings needed for hospitals and organ donor organizations to provide better support to donor families.

  • Accepted July 14, 2022.

This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY-NC-ND 4.0) licence, which permits use, distribution and reproduction in any medium, provided that the original publication is properly cited, the use is noncommercial (i.e., research or educational use), and no modifications or adaptations are made. See: https://creativecommons.org/licenses/by-nc-nd/4.0/

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Canadian Medical Association Journal: 194 (30)
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Vol. 194, Issue 30
8 Aug 2022
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The experiences of family members of deceased organ donors and suggestions to improve the donation process: a qualitative study
Aimee J. Sarti, Stephanie Sutherland, Maureen Meade, Sam Shemie, Angele Landriault, Brandi Vanderspank-Wright, Sabira Valiani, Sean Keenan, Matthew J. Weiss, Kim Werestiuk, Andreas H. Kramer, Joann Kawchuk, Stephen Beed, Sonny Dhanani, Giuseppe Pagliarello, Michaël Chassé, Ken Lotherington, Mary Gatien, Kim Parsons, Jennifer A. Chandler, Peter Nickerson, Pierre Cardinal
CMAJ Aug 2022, 194 (30) E1054-E1061; DOI: 10.1503/cmaj.220508

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The experiences of family members of deceased organ donors and suggestions to improve the donation process: a qualitative study
Aimee J. Sarti, Stephanie Sutherland, Maureen Meade, Sam Shemie, Angele Landriault, Brandi Vanderspank-Wright, Sabira Valiani, Sean Keenan, Matthew J. Weiss, Kim Werestiuk, Andreas H. Kramer, Joann Kawchuk, Stephen Beed, Sonny Dhanani, Giuseppe Pagliarello, Michaël Chassé, Ken Lotherington, Mary Gatien, Kim Parsons, Jennifer A. Chandler, Peter Nickerson, Pierre Cardinal
CMAJ Aug 2022, 194 (30) E1054-E1061; DOI: 10.1503/cmaj.220508
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