Analysis of Reasons for Family Refusal on Organ Donation in the State of Rio de Janeiro, Brazil

Janaina Lenzi¹, Andreia Assis¹, Márcia Ponte¹, Priscila Paura², André Albuquerque², Rodrigo Sarlo³, Cláudia Araújo⁵, Eduardo Rocha^5,4

¹Family Services, State Organ Procurement Organization , Rio de Janeiro, Brazil, ²Education, State Organ Procurement Organization, Rio de Janeiro, Brazil, ³General Coordination, State Organ Procurement Organization, Rio de Janeiro, Brazil, ⁴Health Foundation, State Health Board, Rio de Janeiro, Brazil, ⁵COPPEAD, Federal University of Rio de Janeiro, Rio de Janeiro, Brazil

Introduction: Family Refusal (FR) to organ donation is well-known as a major barrier to transplantation worldwide. In recent years we observed a drop in FR rates in the State of Rio de Janeiro (RJ). Comparing 2011 to 2012, FR went from 51.9% to 44%. Our study aims to analyze FR in this region of Brazil in order to formulate strategies for public awareness, as well as to improve interviewers’ qualification. Methods: Donation interviews occurring in 2011 and 2012 were reviewed and reasons for FR were classified in the following categories: first person refusal (FPR), family misunderstanding of brain death (FMBD), lack of familial consensus (LFC), religion issues (RI), others (O) and unknown reason (UR). Data were extracted from the Transplant State Program data base and are expressed as percentage (%). Results: Respectively in 2011 // 2012, the reasons for FR were: LFC 21% // 25%, FPR 19% // 14%, FMBD 14% // 23%, RI 6% // 3%, O 8% // 10% and UR 32// 25%. Conclusion: Our numbers indicates that the main reasons for FR were FPR, FMBD and LFC as shown in previous research by others. In our series, religion issues were not identified as an important reason for FR in RJ. Noteworthy is the large number of cases of FR for UR, which clearly demonstrates a need for educational efforts toward the health care team, in order to identify and clarify families’ reasons. Findings related to LFC and FPR point to the importance of previous discussing the subject with the society in order to decrease the conflict and the emotional instability of families at the decision-making moment. Furthermore, considering FMBD, it is important that bereaved families have a better understanding of what brain death means. It´s difficult for members of a family to understand and accept brain death if there is miscommunication with physicians and nurses. Therefore, these themes should be the focus of awareness campaigns and reinforced in the training of health professionals.