Abstract
BACKGROUND
Although end-of-life care preferences vary across racial/ethnic groups, little is known about how cultural values affect end-of-life care preferences among South Asian immigrants and their offspring in the US.
OBJECTIVE
To examine the perspectives of first- and second-generation South Asians living in the US regarding end-of-life care.
DESIGN
Focus group study. Discussions explored participant preferences and experiences with family members facing the end of life.
PARTICIPANTS
Twelve first-generation and 11 second-generation self-identified Asian Indians living in the mid-Atlantic region.
APPROACH
Content analysis of focus group transcripts.
RESULTS
First-generation participants ranged in age from 41 to 76 years and were evenly split by gender. Second-generation participants ranged in age from 23 to 36 years and included seven women and four men. All participants were highly educated, and two thirds were either studying or working in a health care field. All but two subjects were Hindu. Several themes emerged that highlighted cultural differences and challenges for this population in the context of end-of-life care: attitudes toward death and suffering; family duty; and preferences for information disclosure and decision making. Participants described cultural challenges due to the evolution of traditional roles, lack of explicit discussion between patients and family members about preferences and care expectations, and a tension between wanting to meet traditional expectations and the challenges in doing so given US social realities.
CONCLUSIONS
Traditional cultural values, such as duty to family, greatly influenced end-of-life care preferences and retained importance across generations. Clinicians caring for Asian Indian patients at the end of life may be better able to assess care preferences after exploring the complex interplay between traditional expectations and specific social realities for each patient. Particular attention should be given to attitudes toward death and suffering, family duty, and preferences for information disclosure and decision making.
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Acknowledgments
The authors wish to thank all of the study participants for sharing their stories with us.
Conflicts of Interest
None disclosed.
Prior Presentations
Partial data from this study were presented at the Society of General Internal Medicine’s 34th Annual Meeting in Phoenix, AZ, on May 5, 2011.
Financial Disclosures
Funding for this project was provided through a grant from the Osler Center for Clinical Excellence at Johns Hopkins. Dr. Carrese’s effort was supported by the Morton K. and Jane Blaustein Foundation, Inc.
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Sharma, R.K., Khosla, N., Tulsky, J.A. et al. Traditional Expectations Versus US Realities: First- and Second-Generation Asian Indian Perspectives on End-of-Life Care. J GEN INTERN MED 27, 311–317 (2012). https://doi.org/10.1007/s11606-011-1890-7
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DOI: https://doi.org/10.1007/s11606-011-1890-7