Nancy Kentish-Barnes1, Zoé Cohen-Solal1, Virginie Souppart1, Gaëlle Cheisson2, Liliane Joseph3, Laurent Martin-Lefèvre4, Anne Gaelle Si Larbi5, Gérald Viquesnel6, Sophie Marqué7, Stéphane Donati8, Julien Charpentier9, Nicolas Pichon10, Benjamin Zuber11, Olivier Lesieur12, Martial Ouendo13, Anne Renault14, Pascale Le Maguet15, Stanislas Kandelman16, Marie Thuong17, Bernard Floccard18, Chaouki Mezher19, Jacques Duranteau2, Elie Azoulay1,20. 1. Famiréa Research Group, Medical Intensive Care Unit, Assistance Publique-Hôpitaux de Paris, Saint-Louis University Hospital, Paris, France. 2. Department of Anesthesia and Intensive Care, Assistance Publique-Hôpitaux de Paris, Bicêtre University Hospital, Le Kremlin-Bicêtre, France. 3. Transplant Coordination Team, Assistance Publique-Hôpitaux de Paris, Bicêtre University Hospital, Le Kremlin-Bicêtre, France. 4. Medical Intensive Care Unit, Hospital of La Roche-sur-Yon, La Roche-sur-Yon, France. 5. Medical and Surgical Intensive Care Unit, Foch Hospital, Suresnes, France. 6. Surgical Intensive Care Unit, Côte de Nacre Hospital, Caen, France. 7. Medical and Surgical Intensive Care Unit, Centre Hospitalier Sud-Francilien, Corbeil-Essonnes, France. 8. Medical and Surgical Intensive Care Unit, Sainte Musse Hospital, Toulon, France. 9. Medical Intensive Care Unit, Assistance Publique Hôpitaux de Paris, Cochin University Hospital, Paris, France. 10. Medical and Surgical Intensive Care Unit, Dupuytren University Hospital, Limoges, France. 11. Medical and Surgical Intensive Care Unit, André Mignot Hospital, Versailles, France. 12. Medical and Surgical Intensive Care Unit, La Rochelle Hospital, La Rochelle, France. 13. Medical and Surgical Intensive Care Unit, Amiens-Picardy University Hospital, Amiens, France. 14. Medical Intensive Care Unit, Cavale Blanche University Hospital, Brest, France. 15. Surgical Intensive Care Unit, Cavale Blanche University Hospital, Brest, France. 16. Department of Anesthesia and Intensive Care, Assistance Publique-Hôpitaux de Paris, Beaujon University Hospital, Clichy, France. 17. Intensive Care Unit, Hospital René-Dubos, Pontoise, France. 18. Anesthesia and Intensive Care Unit, Hospices Civils de Lyon - Edouard Herriot Hospital, Lyon, France. 19. Medical and Surgical Intensive Care Unit, Belfort-Montbelliard Hospital, Montbelliard, France. 20. Biostatistics and Clinical Epidemiology research (ECSTRA) team, U1153, INSERM, Paris Diderot University, Paris, France.
Abstract
OBJECTIVES: Family members of brain dead patients experience an unprecedented situation in which not only they are told that their loved one is dead but are also asked to consider organ donation. The objective of this qualitative study was to determine 1) what it means for family members to make the decision and to take responsibility, 2) how they interact with the deceased patient in the ICU, 3) how family members describe the impact of the process and of the decision on their bereavement process. DESIGN: Qualitative study using interviews with bereaved family members who were approached for organ donation after the death of their relative in the ICU (brain death). SETTING: Family members from 13 ICUs in France. SUBJECTS: Bereaved family members who were approached for organ donation after the death of their relative in the ICU (brain death). INTERVENTION: None. MEASUREMENTS AND RESULTS: Twenty-four interviews were conducted with 16 relatives of organ donor patients and with eight relatives of nonorgan donor patients. Three themes emerged: 1) taking responsibility-relatives explain how they endorse decisional responsibility but do not experience it as a burden, on the contrary; 2) ambiguous perceptions of death-two groups of relatives emerge: those for whom ambiguity hinders their acceptance of the patient's death; those for whom ambiguity is an opportunity to accept the death and say goodbye; and 3) donation as a comfort during bereavement. CONCLUSIONS: In spite of caregivers' efforts to focus organ donation discussions and decision on the patient, family members feel a strong decisional responsibility that is not experienced as a burden but a proof of their strong connection to the patient. Brain death however creates ambivalent experiences that some family members endure whereas others use as an opportunity to perform separation rituals. Last, organ donation can be experienced as a form of comfort during bereavement provided family members remain convinced their decision was right.
OBJECTIVES: Family members of brain deadpatients experience an unprecedented situation in which not only they are told that their loved one is dead but are also asked to consider organ donation. The objective of this qualitative study was to determine 1) what it means for family members to make the decision and to take responsibility, 2) how they interact with the deceased patient in the ICU, 3) how family members describe the impact of the process and of the decision on their bereavement process. DESIGN: Qualitative study using interviews with bereaved family members who were approached for organ donation after the death of their relative in the ICU (brain death). SETTING: Family members from 13 ICUs in France. SUBJECTS: Bereaved family members who were approached for organ donation after the death of their relative in the ICU (brain death). INTERVENTION: None. MEASUREMENTS AND RESULTS: Twenty-four interviews were conducted with 16 relatives of organ donorpatients and with eight relatives of nonorgan donorpatients. Three themes emerged: 1) taking responsibility-relatives explain how they endorse decisional responsibility but do not experience it as a burden, on the contrary; 2) ambiguous perceptions of death-two groups of relatives emerge: those for whom ambiguity hinders their acceptance of the patient's death; those for whom ambiguity is an opportunity to accept the death and say goodbye; and 3) donation as a comfort during bereavement. CONCLUSIONS: In spite of caregivers' efforts to focus organ donation discussions and decision on the patient, family members feel a strong decisional responsibility that is not experienced as a burden but a proof of their strong connection to the patient. Brain death however creates ambivalent experiences that some family members endure whereas others use as an opportunity to perform separation rituals. Last, organ donation can be experienced as a form of comfort during bereavement provided family members remain convinced their decision was right.
Authors: 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 Journal: CMAJ Date: 2022-08-08 Impact factor: 16.859