Ready for Donation, Not for Death: A Qualitative Study of Families' Experience With Controlled Donation After Circulatory Determination of Death in Intensive Care.

Abstract

Research on relatives' experiences with controlled donation after circulatory determination of death (cDCDD) is limited. This study aims to explore the challenges and experiences of relatives whose loved ones die under cDCDD, focusing on how they navigate the process. A qualitative study using semi-structured, in-depth interviews conducted 6 months post-death. This research is part of a larger quantitative multicenter study on the psychologic burden in relatives of cDCDD patients. Relatives of patients in the cDCDD process were purposively sampled and invited to participate in qualitative interviews. Thematic analysis was used to explore the phenomenon from the participants' perspectives. This study was conducted in France between November 2022 and November 2023. Family members of ICU patients identified as potential cDCDD donors. None. Of 23 family members approached, 19 (mean age 53 yr; 11 women) agreed to participate. The mean interview duration was 43 minutes. In three cases, organ retrieval was not possible. Thematic analysis revealed three key themes: 1) "Two decisions, two worlds"-discussing the decision to withdraw life-sustaining therapies and the organ donation request; 2) "Waiting for death"-the period between the decision and its implementation; and 3) "A controlled death"-dying and death in a monitored and technical environment. Relatives can be deeply engaged in cDCDD when well-prepared. However, additional support is needed during the waiting period, as families witness their loved one's decline. Proper preparation for dying is crucial to prevent perceptions of suffering, thereby reducing distress. Healthcare professionals must balance emotional, ethical, and medical considerations to facilitate informed choices in a highly regulated system.