Experiences of families when a relative is diagnosed brain stem dead: understanding of death, observation of brain stem death testing and attitudes to organ donation.

Brain stem death may be a difficult concept for relatives to understand. Our ITU practice follows published recommendations that the use of explanatory leaflets showing CT scans and observing brain stem death testing in some cases may help relatives to understand that death has occurred. Using this strategy, we interviewed 27 relatives 12 months after bereavement following certification by brain stem testing, investigating their understanding of brain stem death, subsequent attitudes to organ donation, grief reactions and attitudes of those who had observed the tests. Most relatives understood that the brain stem death tests indicated that survival was not possible, although three relatives had not fully understood this and valued the opportunity to discuss it again. Only five relatives observed the tests, all were pleased that they had done so as this had confirmed their understanding that death had occurred; however, these relatives had more evidence of psychological distress. No relatives who agreed to organ donation regretted this but three who did not allow donation subsequently expressed regret. Several relatives thought that observing the tests would have helped them to understand that death had occurred, making easier the decision to allow organ donation.