Family refusal rates for organ donation after brain death and after circulatory death: a single-center 6-year experience

Background: A wide gap exists between the number of patients awaiting organ transplantation and the availability of donor organs. For most vital organs, no artificial substitutes are available, resulting in the death of approximately 3–4% of patients on transplant waiting lists. Deceased organ donation occurs through one of two pathways: donation after brain death (DBD) or after controlled circulatory death (cDCD). In the absence of documented consent during the patient’s lifetime, many countries rely on family members to make the decision, placing an emotional burden on them during a time of acute grief. Data on family attitudes toward organ donation, particularly in relation to the mode of death (DBD vs. cDCD), remains limited. This study aimed to examine the frequency of family refusal in the context of deceased organ donation and assess whether it differs between DBD and cDCD cases. Methods: This retrospective, single-center observational study analyzed 6 years of hospital data (2019–2024) from five intensive care units at a tertiary university hospital in Varese, Italy. All patients, regardless of age, who were eligible for deceased organ donation through either DBD or cDCD were included. Results: A total of 158 patients were evaluated for donation (135 DBD; 23 cDCD). Documented opt-in consent, as recorded in the national donor registry, was available for 41 patients (20%), while 3 had registered their refusal. Two patients were ineligible for donation; for the remaining 112 patients (71%), consent was sought from family members. Family refusal occurred in 28 cases (25% of the 112 families asked for consent). No significant difference in consent rates was observed between DBD and cDCD pathways (DBD: 73/98 vs. cDCD: 11/14; p = 0.74). Conclusions: Family refusal was the leading reason for missed donation opportunities among patients without documented opt-in consent, accounting for one in four cases. The donation pathway (DBD vs. cDCD) did not significantly influence family decision-making. Given ongoing organ shortages and high wait-list mortality, strategies are needed to support family decisions and to promote the formal registration of opt-in consent among citizens.