Perspectives of elders and their adult children of Black and minority ethnic heritage on end-of-life conversations: A meta-ethnography

Palliat Med. 2020 Feb;34(2):195-208. doi: 10.1177/0269216319887070. Epub 2020 Jan 22.

Abstract

Background: People of Black and minority ethnic heritage are more likely to die receiving life supporting measures and less likely to die at home. End-of-life care decision making often involves adult children as advance care planning is uncommon in these communities. Physicians report family distress as being a major factor in continuing with futile care.

Aim: To develop a deeper understanding of the perspectives of elders of Black and minority ethnic heritage and their children, about end-of-life conversations that take place within the family, using a meta-ethnographic approach.

Design: Systematic interpretive exploration using the process of meta-ethnography was utilised.

Data sources: CINAHL, MEDLINE, PubMed and PsycINFO databases were searched. Inclusion criteria included studies published between 2005 and 2019 and studies of conversations between ethnic minority elders and family about end-of-life care. Citation snowballing was used to ensure all appropriate references were identified. A total of 13 studies met the inclusion criteria and required quality level using Critical Appraisal Skills Programme.

Results: The following four storylines were constructed: 'My family will carry out everything for me; it is trust'; 'No Mum, don't talk like that'; 'I leave it in God's hands'; and 'Who's going to look after us?' The synthesis reflected the dichotomous balance of trust and burden avoidance that characterises the perspectives of Black and minority ethnic elders to end-of-life care planning with their children.

Keywords: Attitude to death; adult children; decision making; end-of-life conversations; meta-ethnography; race; terminal care.

Publication types

  • Meta-Analysis
  • Research Support, Non-U.S. Gov't
  • Systematic Review

MeSH terms

  • Adult
  • Adult Children / ethnology
  • Adult Children / psychology*
  • Advance Care Planning*
  • Aged
  • Aged, 80 and over
  • Anthropology, Cultural
  • Black or African American / ethnology
  • Black or African American / psychology*
  • Communication*
  • Decision Making
  • Female
  • Frail Elderly / psychology*
  • Hospice Care / psychology*
  • Humans
  • Male
  • Middle Aged
  • Qualitative Research
  • Terminal Care / psychology*