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

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/whānau to be with their family/whānau 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.