Between breaths of grief, a gift: Understanding families’ consent to organ donation in New Zealand intensive care units

BACKGROUND: Consent plays a pivotal role in organ donation. In intensive care units (ICUs), families make organ donation decisions on behalf of their deceased relatives while navigating grief, emotional distress, and challenging clinical circumstances. Globally, donation opportunities do not proceed due to clinical and organisational constraints, as well as the family's decision. This raises questions about what shapes family decisions and how healthcare professionals can support the decision-making process. In New Zealand (NZ), research examining the experiences of families of potential deceased donor patients remains limited, constraining the development of contextually relevant, evidence-based guidance for practice and public education. OBJECTIVES: The aim of this study was to explore potential donor family members' experiences and factors influencing their organ donation decision-making at the time of a family member's death in NZ ICUs. METHODS: A qualitative descriptive study was conducted using semistructured interviews and Braun and Clarke's approach to reflexive thematic analysis. Between February and December 2024, 16 family members of 14 donor patients were recruited using purposive sampling. Eligible participants were aged 18 years or older, English-speaking, residing in NZ, and able to provide informed consent. FINDINGS: Three themes were developed: Navigating Loss from Diagnosis to Donation, Building Comfort through Connection, and From Possibility to Practicality. Participants described emotional journeys from the initial shock to reconciling personal, cultural, and spiritual beliefs about death and donation that facilitated their decisions to donate. Trusting, empathetic partnerships with ICU staff, and receiving clear, transparent communication further supported families as they navigated decision-making. Participants also described practical aspects of the donation process which impacted them, offering insights to inform future practice and improve the decision-making experience for other families. CONCLUSION: Personal, relational, cultural, and practical factors shape families' organ donation decisions in NZ ICUs. Support that acknowledges personal and cultural beliefs, alongside transparent, inclusive, partnership-based care, enhanced families' comfort, confidence, and informed decision-making. Findings highlight actionable strategies to support families' decisions on deceased organ donation and have implications for clinical care, policy, and cultural safety.