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

Abstract

Almost 30% of all deaths in England are now of care home residents, with care homes predicted to become the most common place-of-death in England by 2040. However, end-of-life care (EOLC) in care homes is often reported as suboptimal. In the first in-depth and wide-ranging study on the topic in nearly 20 years, this thesis examines the management of residents’ dying in and by English care homes. Applying a mixed-methods design, the thesis is based on secondary quantitative analysis of the English Longitudinal Study of Ageing (ELSA), ethnographic fieldwork in five residential and nursing care homes in the South-West of England, and recorded interviews with 25 staff members. Building on Marxist-feminist social reproduction theory and Foucault’s biopolitics, the thesis conceptualises issues of paid care work, the predictability of resident’s dying, the governance of EOLC, and the good death in the care home context. The thesis argues that care work in care homes is shaped by the governance priorities to keep residents on the care home’s premises (custodial), keep them alive (medico-legal), and achieve both while curtailing costs to NHS England and care home providers (economic). These priorities reduce care work to bodily care, extend residents’ dying trajectories, and construct the good and natural death in care homes as the regulations-compliant death. The unpredictability of residents’ deaths is the result of both residents’ underlying conditions and the over-extension of their dying trajectories by the health and social care provided by carers, senior staff and GPs. The thesis concludes by arguing that the devaluation of the non-instrumental aspects of carers’ emotional work marginalises existential questions about residents’ desires to live or die and the loss of their capacity to act as persons. The devaluation of the non-instrumental aspects of emotional care work mirrors the devaluation of social reproduction work in English society. It further constrains carers’ ability to treat residents as people with emotions and desires about the way they die as opposed to the mere recipients of bed and body care/work aimed at the realisation of regulations-compliant deaths