Family members’ experiences of death and organ donation in intensive and critical care units: a qualitative systematic review with thematic synthesis

Family members of patients in intensive care units (ICUs) occupy a uniquely distressing position, navigating death determination and organ donation decisions at the most acute moments of loss. Qualitative evidence on these experiences has predominantly focused on donation after brain death (DBD), leaving the distinctive challenges of donation after circulatory death (DCD) largely unexplored, with no synthesis to date attending to both pathways within a single review. This review aimed to synthesise qualitative evidence on family members’ experiences of death determination and organ donation in intensive and critical care settings across both DBD and DCD pathways. Thematic synthesis was employed, incorporating reciprocal translation from meta-ethnography and constant comparison from grounded theory, following the Thomas and Harden three-stage analytical framework. Reporting adhered to the Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) guidelines. Five databases were searched in December 2025 with no date restriction. Eligible studies were peer-reviewed qualitative or mixed-methods publications reporting verbatim family member accounts of death determination or organ donation in adult ICU settings. Quality was appraised using the CASP checklist and the Mixed Methods Appraisal Tool (MMAT). Twenty-eight studies (2001–2025; 14 countries) were included. Of the 28 studies, 13 addressed DBD exclusively, four addressed DCD exclusively, and eight examined both pathways. Three analytical themes emerged. “Constructing Death” pertains to how families make sense of death determination through suspended temporality, bodily witnessing, and contested definitions, processes differing markedly between pathways. “The Contested Body” encompasses tensions between bodily sanctity and organ donation, shaped by clinician behaviours and consent processes. “Relational Meaning-Making” regards how families construct meaning through collective deliberation, cultural and religious frameworks, and farewell rituals. Whilst both pathways share core experiential dimensions, DBD families navigated the sensory dissonance of a physiologically supported yet neurologically dead loved one, whilst DCD families faced temporal compression and the moral weight of perceived involvement in an irreversible clinical event. Family experiences are simultaneously individual, relational, and culturally embedded. Findings point to context-sensitive practice considerations, communication quality, person-centred care, and institutional flexibility, that may support families across both DBD and DCD contexts.