Decision making by relatives about brain death organ donation: an integrative review

Abstract

Background: Deciding about the organ donation of one's brain-dead beloved often occurs in an unexpected and delicate situation. We explored the decision making of the relatives of potential brain-dead donors, its evaluation, and the factors influencing decision making.

Methods: We used the integrative review method. Our search included 10 databases. Inclusion criteria were presence of the donation request or the subsequent decision process. Three authors independently assessed the eligibility of identified articles.

Results: Content analysis of 70 included articles led to three themes: decision, evaluation, and support. We extracted results and recommendations concerning these three themes. The timing of the request and understandable information influence the decision. The relatives evaluate their decision differently: in case of refusal, approximately one third regret their decision, and in case of consent, approximately one tenth mention regret. The relatives are often ambivalent about their values (protection, altruism, and respect) and the deceased's wishes, not wanting additional suffering either for their beloved or for themselves. Support is mainly focused on increasing consent rates and less on satisfaction with the decision.

Conclusions: Evaluation of decision making by the relatives of potential brain-dead donors reveals possibilities for improving the decision process. Special skills of the requester, attention to the circumstances, and unconditional support for the relatives might prevent the relatives' regret about refusal and unnecessary loss of organs. We hypothesize that support in exploring the relatives' values and the deceased's wishes can lead to stable decisions. This hypothesis deserves further investigation.