Understanding Asian Indian Americans’ Knowledge and Attitudes Toward Hospice Care

Abstract

Background: Previous research has found racial differences in hospice knowledge and misconceptions about hospice care, which may hinder access to hospice care. Asian Indians are a rapidly growing population in the United States, yet limited research has focused on their beliefs toward end-of-life care. This project investigates Indian Americans’ knowledge of and attitudes toward hospice care and advance care planning. Procedures: A cross-sectional design was employed using surveys about participants’ knowledge of and attitudes toward hospice care and advance care planning. Surveys were conducted among Indian Americans, age 60 and over, recruited from Indian cultural centers in Northern California. The participants were first asked questions about hospice care. They were then given a summary explanation of hospice care and later asked about their attitudes toward hospice care. Data were analyzed using descriptive and bivariate analyses. Results: Surveys were completed by 82 participants. Findings revealed that 42.5% of respondents had an advance directive and 57.1% had named a health care proxy. Only 10% of respondents had known someone on hospice care and 10.4% correctly answered 4-5 of the knowledge questions. After being informed about hospice care, 69.6% of participants agreed that if a family member was extremely ill, they would consider enrolling him/her in hospice. Conclusions: This study’s results present a need for greater education about hospice services among older Asian Indians. Health practitioners should remain cognizant of potential misconceptions of hospice and cultural barriers that Asian Indians may have toward hospice care, so they can tailor conversations accordingly.

“It Seems Like a Bad Thing”: US South Asian Youths' Perspectives About the Use of Hospice Care

“…Possibly, lack of awareness is a more important factor than formal education in increasing hospice acceptability as studies including this one have shown negative perspectives towards hospice despite high education levels. 20 Findings also reveal the importance of the home as a private space among South Asians, that needs to be navigated sensitively by healthcare providers. The present study found that even home hospice was rejected by some participants, similar to hesitance towards hospice staff home visits expressed by nearly 44% of participants in another study.…”

“…The present study found that even home hospice was rejected by some participants, similar to hesitance towards hospice staff home visits expressed by nearly 44% of participants in another study. 20 A systematic review of palliative care among the South Asian diaspora similarly reported about the home as a place for comfort where rituals, privacy, spiritual and personal cleanliness, a sense of security and being surrounded by family were maintained, in contrast to a hospital or hospice where these considerations were often not met. 2 Studies among the South Asian diaspora about palliative care provide context to our findings.…”

“…In contrast, a study reported that after learning about hospice care from the interviewer, the majority of participants were in favor of hospice care for critically ill family members. 20 The different findings may be due to older age (82 adults with ages ranging 62-86). 20 Understandably, the difference in health status and circumstances at an older age would influence participants’ attitude towards hospice care differently than among healthy youth who are culturally expected to express filial piety towards older family members.…”

“…The most recent study surveyed older Indian Americans in Northern California and found that 10% of respondents had known somebody that had used hospice care and less than 11% “correctly answered 4-5 of the knowledge questions”. 20 After getting a description of hospice care services from the interviewers, the majority of participants expressed agreement with enrolling critically ill family members into hospice care. 20 A prior study with Asian Indian immigrant Hindus, also reported low awareness of hospice.…”

“…20 After getting a description of hospice care services from the interviewers, the majority of participants expressed agreement with enrolling critically ill family members into hospice care. 20 A prior study with Asian Indian immigrant Hindus, also reported low awareness of hospice. In this study, all participants were college-educated with more than half holding a graduate degree.…”