End of Life Care in English Care Homes: Governance, Care Work and The Good Death

Since the beginning of the COVID-19 pandemic, care homes have been in the eye of the storm. A large proportion of COVID deaths in England and Europe has come from those living in care homes. This should come as little surprise given the prevalence of chronic underlying conditions in the care home population (Teggi 2020) and that 28% of all deaths in England are of care home residents (NEoLCIN 2017). However, very little is known about dying and end of life care (EOLC) in care homes, the last multi-sited ethnographic study on the topic being more than 25 years-old (Sidell et al. 1995). This paper presents the ethnographic and qualitative findings from a mixed-methods study of EOLC in five residential and nursing care homes in the South-West of England. It shows that EOLC in care homes is shaped by: (1) the uncertainty of death’s timing in old age; (2) the need for staff to predict and anticipate the time of residents’ dying; (3) the need to balance institutional pressures to keep residents alive (or let them die) with residents’ agency and best interest; and (4) staffing levels enabling or disabling carers to sit and just ‘be with’ residents as they are dying. The study depicts a complicate picture of failing bodies, existential uncertainty, EOLC governance and relationships of care between staff and residents that challenges received notions of medicalisation, institutionalisation and social death in very old age. This knowledge is crucial in the wake of a pandemic that risks stigmatising care homes once again as places for bad living and bad dying.