Pandemic narratives in stories about hospice palliative care: The impact of Covid-19 upon ideals of timely, holistic care and quality of life

Abstract

Background Hospice palliative care aims to provide timely interventions and holistic care that focusses on quality of life for people who are terminally ill. In the first two years of the Covid-19 pandemic the national political and healthcare contexts changed significantly. Throughout this time hospices had to repeatedly adjust their approach to supporting terminally ill people, many of whom were especially vulnerable to Covid-19. Aim The aim of this paper was to explore hospice patients, carers, staff and senior managers stories to identify how changing pandemic narratives affected their understanding of hospice palliative care as timely, holistic and supporting quality of life. Methods Narrative analysis of in-depth interviews with patients, carers, staff and senior managers (n = 70) recruited from hospices across the West-Midlands, UK, in 2020–22. Findings We identified four ‘pandemic narratives’ (reaction; revision; resilience; (re)normalisation) in the participants' accounts of hospice palliative care support in the first two years of the pandemic. In each narrative we explore how Covid-19 and the associated pandemic guidance affected what quality of life was understood to be; how what was considered to be timely care could change during the palliative care journey; and, how different ideas of holistic care were emphasised as the hospice and wider healthcare context changed. Conclusion This is the first-time stories about the first two-years of the Covid-19 pandemic from hospice patients, carers, staff and senior managers have been analysed together. We identified how the pandemic brought an existential challenge to ideas of what hospice palliative care is and could be. Our findings suggest that ‘living with covid’ will continue to affect hospice palliative care's ideals of timeliness of care, holistic support, and quality of life left.