Families' Understanding of Brain Death

Context Families' understanding of brain death may be a factor that contributes to decisions regarding organ donation. Objective To examine factors related to families' understanding of brain death and how those factors affect families' decisions about organ donation. Design Chart reviews were conducted on all deceased patients at 9 trauma hospitals. Interviews were then conducted with healthcare providers who spoke with families about organ donation and family decision makers. Setting Southwest Pennsylvania and Northeast Ohio. Participants The sample consisted of 403 families of organ donor–eligible patients who reported that someone at the hospital told them the patient was brain dead. Main Outcome Measures Families' awareness of brain-death testing procedures, understanding of brain death, and donation decision. Results Most families (96%) were told their family member was brain dead, but only 28.3% were able to provide a completely correct definition of brain death. No association between the definition of brain death and willingness to donate was found. Those who donated were less likely to agree with the statement that someone is dead only when the heart stops than those who did not donate. Respondents who accepted that their loved one was dead when informed the patient was brain dead were more likely to donate than those who did not consider the patient dead until mechanical support was turned off and the heart stopped.