Why Families Decline Donation: The Perspective of Organ Procurement Coordinators

Abstract

Context Current knowledge regarding the barriers to organ donation relies on 3 data sources: potential donor families, hospital staff, and members of the general public. The current study complements these findings by interviewing organ procurement coordinators about their experiences during the familial consent process. Objective To characterize organ procurement coordinators' reports of barriers to obtaining familial consent for donation. Design Structured, face-to-face interviews. Participants One hundred and two organ procurement coordinators recruited from a national sample of 16 organ procurement organizations. Main Outcome Measure Interviews were content analyzed to describe coordinators' experiences with families who decline donation. Manifest coding was used to determine the frequency with which particular barriers were identified by coordinators. Coordinators' reports of barriers were compared with organizational conversion rates to determine which barriers were associated with performance as an organization. Results Organ procurement coordinators revealed 16 distinct barriers in 4 overlying categories: concerns regarding decedents' wishes, structural barriers to donation, unsupportive belief systems, and lack of public education. Three reported barriers could be used to differentiate between high- and low-performance organizations: (1) familial concerns over bodily disfigurement, (2) failure of families to understand brain death, and (3) families' cultural/racial background. Conclusion These results supplement existing reports of barriers to donation and are discussed in terms of shaping future public education efforts and request processes to improve conversion rates.