Family perspectives on declining organ donation: A qualitative study

INTRODUCTION: With a national consent rate of 53%, Australian families decline donation in much higher numbers than other high-income countries. Yet, few studies have focused specifically on families who declined donation. OBJECTIVE: The aim of this study was to examine the experiences of families who declined donation after the death of a relative. METHODS: A qualitative study using in-depth interviews was conducted to elicit detailed narrative accounts. Interviews were conducted between April 2022 and May 2025 in South Australia, Victoria, Queensland, and New South Wales. Thirty-three recently bereaved families (43 individuals) who were approached for organ donation were purposively sampled and participated in the study. This paper reports on the experiences of the nine families (11 individuals) who declined donation. Data were analysed inductively through familiarisation, thematic framework development, and interpretation. FINDINGS: Families who declined donation reported inconsistent, ambiguous or contradictory communication, limited agency, and a perceived lack of care and compassion-experiences that intersected with broader social, economic, and racial marginalisation. Supportive engagements-such as clear and compassionate communication, rapport with staff, intensive care unit access, and personalised care-were described as helpful in navigating crisis. However, these often coexisted with episodes of confusion, exclusion, and powerlessness, shaping families' (mis)trust in the healthcare system and their attitudes towards organ donation. CONCLUSIONS: The decision to decline donation is not solely based on individual, family, or cultural preferences but is embedded within broader social, emotional, and institutional processes and can be enacted as a form of resistance by families who experience social disadvantage in and beyond the intensive care unit. Improving communication and care for the families of potential organ donors requires addressing institutional exclusion and building capacities for inclusion and trust to redress structural inequalities and enhance end-of-life care. Importantly, this study highlights a successful approach to engaging with families who decline donation, providing a platform for their experiences to inform improvements to care.