A bad time to die? Exploring bereaved families/wha-nau experiences of end-of-life care under COVID-19 restrictions: a qualitative interview study

Author:

Morgan Tessa1ORCID,Gott Merryn2ORCID,Williams Lisa2,Naden Joe2,Wang Yingmin3,Smith Brianna2,Fanueli Elizabeth4,Budi Setyawati Martyarini2,Morgan Kathryn2,Robinson Jackie2,Anderson Natalie2,Carey Melissa2,Moeke-Maxwell Tess2

Affiliation:

1. Applied Social Science Group, Department of Public Health and Primary Care, The University of Cambridge, Forvie Site, Cambridge CB2 0SR, UK

2. School of Nursing, Faculty of Medical and Health Sciences, The University of Auckland, Auckland, New Zealand

3. School of Foreign Studies and School of International Culture, South China Normal University, Guangzhou, China

4. School of Population Health, Faculty of Medical and Health Sciences, The University of Auckland, Auckland, New Zealand

Abstract

Background:There have been international concerns raised that, during the COVID-19 pandemic, there was an absence of good palliative care resulting in poor end-of-life care experiences. To date, there have been few studies considering the pandemic’s impact on people dying from non-COVID-19 causes and their families and friends. In particular, there has been very less empirical research in relation to end-of-life care for Indigenous, migrant and minoritised ethnic communities.Objectives:To explore bereaved next-of-kin’s views and experiences of end-of-life care under COVID-19 pandemic regulations.Design:This qualitative study involved in-depth one-off interviews with 30 ethnically diverse next-of-kin who had a family member die in the first year of the pandemic in Aotearoa, New Zealand.Methods:Interviews were conducted by ethnically matched interviewers/interviewees. A reflexive thematic analysis was used to explore and conceptualise their accounts.Results:A key finding was that dying alone and contracting COVID-19 were seen as equally significant risks by bereaved families. Through this analysis, we identified five key themes: (1) compromised connection; (2) uncertain communication; (3) cultural safety; (4) supported grieving and (5) silver linings.Conclusion:This article emphasises the importance of enabling safe and supported access for family/whanau to be with their family/wha-nau member at end-of-life. We identify a need for wider provision of bereavement support. We recommend that policy makers increase resourcing of palliative care services to ensure that patients and their families receive high-quality end-of-life care, both during and post this pandemic. Policy makers could also promote a culturally-diverse end-of-life care work force and the embedding of culturally-safety practices across a range of institutions where people die.

Funder

Auckland Medical Research Foundation

Publisher

SAGE Publications

Subject

Advanced and Specialized Nursing

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