South Asian Indian Immigrant Perspective on End of Life Care and Organ Donation

Qualitative Research

Background and Purpose:  This paper examines the  attitudes toward end of life care and organ/tissue donation among South Asian immigrants living in the US. Existing research indicates that it is a taboo to talk about end of life care and organ donation among several Asian immigrant groups (Trompeta et al., 2012). Furthermore, organ donation is also affected by the effectiveness of the health care system in guiding clients and patients through culturally sensitive decisions.  We use the Karmic theory which offers Hindus with a broad set of life principle to gain an understanding of attitudes toward organ donation (Hutchinson et al., 2008). 

Methods: A purposive snowball sample of 31 older Asian Indian older adults (ages 60-95) was secured to assess the level of preparedness regarding end of life care and organ donation.  We posted fliers as well as garnered assistance from service providers working at religious organizations.  About 80% of the sample were Hindus and 20% Ismaili Muslims.  Face to face in depth interviews were conducted in mosque and temples in Dallas Fort Worth. Interviews elicited participants’ health and life history narratives, including how participants learned about their complex health issues and their views on how they envision a “good death”.   About 90% of the participants did not know about organ donation.  Interviews were transcribed verbatim and coded thematically using Microsoft word, guided by the principles of grounded theory and an inductive approach to qualitative analysis.

 

Findings: We gathered extensive qualitative data on religious beliefs regarding knowledge of end of life care options and organ donation.  Participants were ambivalent about the place where their life would end, whether in United States or in India.    About 80% wanted a “good death” without prolonged pain and suffering due to illness and did not want to life in a prolonged vegetative state.   We found several contributors that had a negative effect on the likelihood of organ donation. Our results suggest that several factors such as (1) inadequate opportunity or efforts to explore relevant end of life care and organ donation issues with patients and their families and (2) insufficient knowledge of basic ethical and legal principles had a negative effect on the likelihood of organ donation.   Based on the results of this study we find that lack of education, communication regarding older adult’s values and preferences on prolonging life are rarely taken into account.

Implications:  Based on the results of this study social workers need to assess the beliefs and values of South Asian older adult clients  regarding end of life care preferences and their views on organ donation.  A structured family meeting needs to be conducted so that the views of the elderly as well as the family are taken into account.  Educational seminars and pamplets in Hindi and other languages need to be provided. Future research should take into account the level of acculturation of South Asian Indian immigrants on end of life care and organ/tissue donation