The End-of-Life Care Experiences of Relatives of Brain Dead Intensive Care Patients

Brain death is a traumatic and sudden event following a severe injury to the brain. Most patients with brain death spend the last days of life in an intensive care unit (ICU), where some families will be approached to ask for organ donation. This qualitative study was carried out with relatives of patients who had died of brain death in an ICU; all relatives were interviewed six months after the death. Twenty ICUs were recruited for this study. The next of kin of 130 patients who died during the study period were approached, and 30 (22%) agreed to be interviewed; one later withdrew. This paper focuses on the perceived palliative care needs of the 29 families. Participants valued the physical care their relatives had received, but communication and breaking bad news was a cause for concern. The facilities on many ICUs, for example, cramped relatives' rooms and little privacy to be with the patients or to say the final goodbye, was a common theme to emerge. Bereavement follow-up did not routinely occur, and this was an identified factor noted by relatives. Families living through the period of brain death in a loved one may have particular needs in terms of end-of-life care and should be offered the support of a palliative care team through the last days of a patient's life and into the period of bereavement. Staff training on how to communicate bad news also should be implemented as a matter of urgency.