Dying in residential care homes during the early COVID-19 pandemic: a qualitative interview study.

Abstract

Background: Early in the COVID-19 pandemic, care homes (long-term care facilities) globally were severely impacted in many ways, including end-of-life care and death of residents. They experienced significantly elevated mortality rates amongst residents, compounded by restrictions on support from external healthcare and specialist palliative care providers. Family access to dying residents was often severely restricted. This paper explores experiences of deaths, dying and end-of-life care in care homes during the first year of the pandemic (Spring 2020-2021).

Methods: As part of a wider study of experiences in care homes in Northern England during the early pandemic, we conducted semi-structured interviews with care home staff (16), residents (3), family members (5) and health service staff (10). Interviews were analysed using reflexive thematic analysis, this secondary analysis focusing on experiences of death and dying over the period.

Results: Thematic analysis generated three key themes: (1) Preparing for large scale deaths: Care home staff reported a sense of foreboding at requirements to prepare for large scale resident deaths, sometimes feeling left with minimal external support to manage this, and uneasy about the rapid roll-out of emergency care planning to residents; (2) Balancing support and policing visiting during the terminal phase: The requirement to restrict access for family members when their relatives were dying was experienced as distressing for both family members and care home staff; and, (3) Distress surrounding deaths for staff and families: Care home staff were distressed by the frequency and speed of deaths that they witnessed when their care home had a COVID-19 outbreak. Family separation near time of death was a source of distress for everyone involved, with suggestions that this led to regrets in bereavement for family members, and moral distress in staff.

Conclusions: The experience of death and dying in care homes in the early waves of the COVID-19 pandemic was extremely challenging for care home staff and family members. Our analysis suggests that the ramifications of stringent visitation policies and the consequent distress may shape experiences in bereavement. Monitoring for longer term consequences, such as prolonged grief and moral injury, should be a priority.