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ABSTRACT: Purpose
Currently, there is little empirical data on family understanding about brain death and death determination. The purpose of this study was to describe family members' (FMs') understanding of brain death and the process of determining death in the context of organ donation in Canadian intensive care units (ICUs).Methods
We conducted a qualitative study using semistructured, in-depth interviews with FMs who were asked to make an organ donation decision on behalf of adult or pediatric patients with death determination by neurologic criteria (DNC) in Canadian ICUs.Results
From interviews with 179 FMs, six main themes emerged: 1) state of mind, 2) communication, 3) DNC may be counterintuitive, 4) preparation for the DNC clinical assessment, 5) DNC clinical assessment, and 6) time of death. Recommendations on how clinicians can help FMs to understand and accept DNC through communication at key moments were described including preparing FMs for death determination, allowing FMs to be present, and explaining the legal time of death, combined with multimodal strategies. For many FMs, understanding of DNC unfolded over time, facilitated with repeated encounters and explanation, rather than during a single meeting.Conclusion
Family members' understanding of brain death and death determination represented a journey that they reported in sequential meeting with health care providers, most notably physicians. Modifiable factors to improve communication and bereavement outcomes during DNC include attention to the state of mind of the family, pacing and repeating discussions according to families' expressed understanding, and preparing and inviting families to be present for the clinical determination including apnea testing. We have provided family-generated recommendations that are pragmatic and can be easily implemented.
SUBMITTER: Sarti AJ
PROVIDER: S-EPMC10203015 | biostudies-literature | 2023 Apr
REPOSITORIES: biostudies-literature
Sarti Aimee J AJ Sutherland Stephanie S Meade Maureen M Hornby Laura L Wilson Lindsay C LC Landriault Angele A Vanderspank-Wright Brandi B Valiani Sabira S Keenan Sean S Weiss Matthew J MJ Werestiuk Kim K Beed Stephen S Kramer Andreas H AH Kawchuk Joann J Cardinal Pierre P Dhanani Sonny S Lotherington Ken K Pagliarello Giuseppe G Chassé Michaël M Gatien Mary M Parsons Kim K Chandler Jennifer A JA Nickerson Peter P Shemie Sam D SD
Canadian journal of anaesthesia = Journal canadien d'anesthesie 20230401 4
<h4>Purpose</h4>Currently, there is little empirical data on family understanding about brain death and death determination. The purpose of this study was to describe family members' (FMs') understanding of brain death and the process of determining death in the context of organ donation in Canadian intensive care units (ICUs).<h4>Methods</h4>We conducted a qualitative study using semistructured, in-depth interviews with FMs who were asked to make an organ donation decision on behalf of adult or ...[more]