Relatives' experiences of end-of-life care and organ donation after controlled circulatory death: a national prospective multicenter study

The development of controlled donation after circulatory determination (cDCDD) - a promising strategy to improve access to transplantation - raises unique ethical, relational and communication challenges. We aimed to evaluate the psychological outcomes and lived experiences of relatives of potential cDCDD donors.

We conducted a prospective multicenter study in 32 French ICUs. Relatives of patients identified as potential cDCDD donors following a decision to withdraw life-sustaining measures (WLSM) were recruited. One relative per patient, preferentially the most involved in decision-making, was followed up by structured phone interviews at 3 and 6 months. Outcomes included PTSD symptoms (IES-R, primary endpoint), anxiety and depression (HADS), experience of dying and death (CAESAR), prolonged grief (PG-13), and a study-specific questionnaire on perceptions of end-of-life and organ donation (OD) processes. Two subgroups were defined: OD+, when WLSM was initiated while OD was still considered possible, and OD-, when OD was no longer considered at the time of WLSM.

A total of 159 relatives were included (119 OD+, 40 OD-). Follow-up was completed in 118 relatives at 3 months and 109 at 6 months. At 3 months, one third reported PTSD symptoms, half reported anxiety, and one third depression, with persistence at 6 months for a substantial proportion. Around 10% described a distressing experience of dying and death, and fewer than 10% met criteria for prolonged grief disorder. Psychological outcomes did not differ between OD + and OD - groups. Most relatives felt involved in WLSM and OD discussions, though 80% perceived being asked to authorize donation. Emotional responses were ambivalent, combining reassurance and distress.

Relatives of potential cDCDD donors experience high levels of psychological distress, but OD discussions did not exacerbate burden. These findings support that cDCDD can be implemented without additional risk for families, while underscoring the need for improved shared decision-making, communication, and emotional support in the ICU.

ClinicalTrials.gov ID NCT05041023 (First registration date: 2021-09-02).