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

Abstract

The 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-of-life 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 a 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. A constructivist grounded theory approach was used to analyse the data. Findings revealed two key themes which capture the perspectives of older South Asian study participants 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 by participants. Participants neither expected to have discussions about their own death and dying within their family, nor to assume any involvement in 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.