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

Abstract

SummaryBrain 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.

Increasing the acceptability and rates of organ donation among minority ethnic groups: a programme of observational and evaluative research on Donation, Transplantation and Ethnicity (DonaTE)

“…Important influences on consent to donation were identified as including prior knowledge of the patients' views, having more contact with requesting staff, viewing the requestor as sensitive to their needs and experiencing an optimal request pattern, which corresponds with the findings of qualitative interview studies with families in the UK. [109][110][111] Black families in the USA, as in the UK, are less likely to consent to donation. A study by Siminoff et al, 112 based on a chart review at nine trauma hospitals in the USA, indicated that non-consent was partly linked with families' experiences of care, with black families less likely to have spoken with an organ procurement representative, being given fewer opportunities to consider the decision with a health-care provider, and having less knowledge of their family members wishes, while they also expressed less favourable attitudes to donation and the health-care system.…”

Maternal organ donation and acute injuries in surviving children

“…Organ donation is an esteemed virtue in society that might subsequently change the behavior of others in the community who interact with the surviving family [105][106][107][108][109][110][111][112]. The conceptual idea of leaving a legacy can provide some further solace for those searching for meaning in the aftermath of a family member's death [113][114][115][116]. The full explanation remains unknown and would be difficult to explore through clinical trials, survey studies, qualitative research, or other approaches that depend on voluntary participation of bereaved children.…”

“As good as dead” and is that good enough? Public attitudes toward brain death

“…One study examined the value of families' observing bedside testing of brain function to help them understand that death had taken place [14]. Yet, for some, their own preestablished belief whether death had already occurred took over.…”