Bereaved family members’ perspectives of their organ donation decision at 3 months post death of the donor-eligible patient in critical care: A dual-method study

Offering organ donation is part of routine end-of-life care in critical care. Families describe feeling emotionally overwhelmed, which reduces their ability to understand complex medical information necessary to make informed decisions about organ donation. Late decisional regret is more common among families who decline donation. Thus, it is vital to investigate whether the organ donation decision choices that families make in hospital endure unchanged and what factors affect their perspectives. The objective of this study was to explore family members’ perspectives of their final organ donation decision in hospital, either to consent or to decline donation, at around 90 d later. This dual-method study comprised semistructured interviews of family members of donor-eligible patients who experienced care in seven metropolitan teaching hospitals, a tertiary paediatric hospital, and a major regional hospital in New South Wales, Australia. Interviews were audio recorded and transcribed verbatim. Descriptive quantitative analysis and thematic analysis were used. Participants overwhelmingly agreed that their organ donation decision remained unchanged at 3 months after the death of their relative (n = 127, 97%). The remainder (n = 3, 2%) were unsure or stated “possibly not” (n = 1, 1%); in these cases, the eligible donor was certified dead via circulatory criteria. Five themes were synthesised in relation to the organ donation decision: Knowledge of the donor-eligible patient's prior wishes, Family members' prior decision to donate their own organs, Solace in the decision, Altruism, and Reality of the process. The organ donation decision choice remained unchanged for the large majority. Further research is required to ascertain how people can be assisted to understand the organ donation process, particularly in the setting of certification of death by circulatory criteria, and how best to positively influence consent rates. Australian and New Zealand Clinical Trial Registration ACTRN12613000815763.