Survey of the Awareness and Beliefs Regarding Brain Death and Deceased Organ Donation Amongst Lay People in India

Abstract

Background: Deceased organ donation rates in India are amongst the lowest in the world. This survey aims to identify the problems related to understanding of the concept of brain death and deceased donation amongst lay people in our country. Methods: A questionnaire (30 multi-response questions) was designed and administered to lay people in order to assess their knowledge and awareness regarding brain death and deceased organ donation. Data thus collected was analyzed using SPSS software version 17.0. Results: A total of 250 people [median age: 27(13–80) years; M: F = 143:107] participated in the survey. Most people were aware that organ transplantation may benefit patients suffering from organ failure (92%) and also that there is severe shortage of organs in our country (95%). Most people were aware that eyes (82%), kidneys (80%) and liver (74%) can be procured from brain dead donors. About half (51%) felt that organ donation leads to disfigurement of body. Around 40% of the respondents were aware of the concept of brain death, mostly through media (46%), internet (24%) and health awareness programme (22%). Most (83%) were willing to donate their organs if their family agreed, but only 45% would do so without family consent. Only a third (37%) felt that religious beliefs influenced their attitudes towards donation. A majority (70%) believed that donor's willingness was paramount and only 25% agreed (54% disagreed) with concept of presumed consent. A majority (80%) felt that instituting national organ donation programme and improving awareness would help in preventing illegal organ trading and improving the deceased donation rates. Most people (82%) thought that the treating physician was most appropriate person to counsel family of deceased donor. Lack of awareness (78%) and religious beliefs (64%) were thought to be most important reasons for poor donation rates in our country. Conclusion: This survey highlights that a majority of people are willing to donate organs if this decision is supported by their family. Misconceptions related to disfigurement and religious beliefs need to be addressed directly by tailored educational/ awareness programmes targeting whole families.