Bereaved relatives' decision about deceased organ donation: An integrated psycho-social study conducted in Spain

Rationale: Family refusal to organ donation of a deceased relative represents one of the most important barriers to organ transplantation. Although a large literature about family decisions has amassed, the existing evidence needs further integration and structuring. Objective: This study seeks to analyse relationships between bereaved relatives' decisions and a wide range of factors that converge in the family decision process, including interactions and complex relationship patterns, and taking psychosocial theoretical frameworks as reference to conceptualize empirical findings. Method: This observational study examined 16 Spanish hospitals during a 36-month period. Transplant coordination teams collected data of 421 cases of family decision processes about donation (338 donations/83 refusals) through a previously validated instrument. Indicators of the following factors were collected: deceased's characteristics; circumstances of death; bereaved relatives' characteristics, beliefs, and expressions; behaviour of health and coordination staff; and family's emotional responses. Three global hypotheses related to bivariate and multivariate relations of factors with family decisions and relationships/interactions among factors were tested. Results: Relatives' beliefs about the deceased's wishes concerning donation are the strongest predictor of family decisions. However, family decisions are also related to the deceased's characteristics, relatives' characteristics, satisfaction with medical attention, satisfaction with personal treatment and relatives' emotional responses, and other factors. Relatives' emotional reactions are related to satisfaction with health-staff interventions and condition family decision, even if deceased's will concerning donation is known and positive. Relatives' beliefs about deceased's wishes concerning donation vary as a function of deceased's characteristics and according to relatives' characteristics. Conclusions: Understanding of family decisions underlying organ donation may greatly benefit from a more complex, integrated, and theoretically based approach. Educational efforts should stress the need to register or simply communicate own willingness to donate organs. However, an adequate training and performance of the health-staff involved in the organ donation process may generate substantive differences in consent rates.