Introduction: Deceased organ donation rates in India ranks amongst the lowest globally, indicating a significant gap in the availability of organs for transplantation. Unfortunately, organ donation remains a relatively uncommon practice among Indian families facing bereavement. Highlighting a pressing need for understanding the factors influencing consent in this context. This study examined various factors involved in the decision to provide affirmative consent for organ donation and aims to understand the complexities of obtaining consent for organ donation as well as to gain insight into the experience of the family during the decision-making process. We seek to shed light on the underlying motivations and concerns that Indian families encounter when considering organ donation during times of grief.
Materials & Methods: Retrospective exploratory mixed method study, in which telephonic semi-structured interviews of the family members who consented for deceased organ donation, were conducted at PGIMER Chandigarh, India between July 2019 to June 2023.
Results: Amongst the 108 eligible families during the study period, 83 families responded and 81 were eligible for analysis. Only 15%(n=12) of the decision makers were females. Wishes of the donor were known to the family in 5%(n=4) cases only and that too without any formal pledging. 78%(n=63) of the decision makers heard about brain death for the first time in the hospital.  About 35%(n=28) families had disagreements among the members regarding consent for organ donation and 22%(n=18) of decision makers did not tell other members for the fear of disagreement and blame. 77%(n=62) of the decision makers said that the decision to donate was not influenced by their religion. The decision-making process was difficult for 80%(n=65) of the decision makers.
Conclusion: In India patriarchal system of decision making is prevalent, with decision-making for organ donation often falling within the purview of male family members. Limited knowledge and various social and emotional factors complicate the decision-making process of deceased organ donation. Decision related to organ donation is profoundly influenced by family dynamics and community perceptions. Addressing these multifaceted factors is essential for improving deceased organ donation rates in the country.