Talking about end-of-life care: the perspectives of older South Asians living in East London

Abstract

This document may differ from the final, published version of the research and has been made available online in accordance with publisher policies. To read and/or cite from the published version of the research, please visit the publisher's website (a subscription may be required.) East LondonThe National End-of-life Care Strategy for England identifies that a lack of open discussion about death and dying can be a barrier to achieving good quality end-oflife care. South Asians constitute the single largest ethnic minority group in the United Kingdom, yet little is known about their attitudes and expectations towards the discussion of death and dying. In this study, set in East London, five focus groups and 29 in-depth, semi-structured interviews were conducted with total of 55 older adults aged between 52 and 78 years. Participants from six South Asian ethnic groups were recruited from 11 local community organisations. Constructive grounded theory was used as data analysis approach. Findings revealed two key themes which capture the perspectives older South Asian study participants had towards end-of-life care discussions. The theme 'avoidance as a cultural norm' relates to the relative absence of discussions around death and dying experienced participants. Participants neither expected to have discussions about their own death and dying within their family, nor to assume any involvement in related issues of decision-making. The second theme 'avoidance as protection' relates to beliefs and experiences about the delegation of decision making to family members. Future research should explore the perspectives of second-generation adult children towards end-of-life care discussions.

Public, patient and carers’ views on palliative and end‐of‐life care in India

“…However, many elements of the nature and meaning of family caregiving, including women as primary caregivers, men as decision makers, the family to provide personal care and financial support, and protecting the family through non‐disclosure, are consistent with wider literature around Asian culture during end‐of‐life care moments (Kwak & Haley ; Venkatasalu et al. ). Indeed, such non‐disclosure practices are also reported by Glaser & Strauss () work on ‘closed awareness’ practices among U.S. clinical practitioners, which included giving inaccurate diagnoses, giving false hope relating to survival, and the inability to express grief.…”

Association between Chinese or South Asian ethnicity and end-of-life care in Ontario, Canada

“…46 Differences in patient and family preferences may relate to religious and cultural beliefs, practices regarding death, notions of filial responsibility, or a preference for family-centred as opposed to individual decisionmaking. 18,19,[21][22][23][24][26][27][28]41,43 Previous research documented an association between minority ethnicity and decreased knowledge of advanced care planning. 12,50 Communi cation difficulties may exist between patients of Chinese and South Asian ethnicity and health care professionals because of differences in languages spoken, culture, beliefs about end-of-life care and communication styles, which may manifest as cultural insensitivity and lead to a lack of trust.…”

“…medications, and the influence of common South Asian religions including Islam, Buddhism, Sikhism or Hinduism. [24][25][26][27][28][29][30] In 2011, Ontario had a population of 12 851 821, of whom the 2 largest ethnic minority groups were South Asian (833 085, 6.5%) and Chinese (531 635, 4.1%). 31 Previous research identified that people in Ontario who were born in South Asia or East Asia experi enced end-of-life care that was different from that experienced by long-standing residents, but this analysis did not investigate patient ethnicity.…”

Nurses' views regarding implementing advance care planning for older people: a systematic review and synthesis of qualitative studies

“…Older people often assume that their family members and health professionals know their preferences about end‐of‐life care (Venkatasalu et al . ). However, studies have indicated that family members or health professionals may not know their older relatives’ or patients’ medical preferences, and additionally their ability to predict these preferences is poor (Seckler et al .…”