End of Life Care in Care Homes: Practices and Issues

In Western industrialised countries, most people now die aged 80 or above from disabling, chronic and degenerative diseases, having spent an average of nine years in poor health. There is thus continuity between long-term care (LTC) and end of life care (EOLC) in old age, but this continuity is poorly understood in policy and service delivery. Further, EOLC research has mostly focused on dying in hospital, hospice and domestic settings as opposed to care homes; and dying from cancer as opposed to from/with frailty, dementia or chronic diseases. Nonetheless, the latter are prevalent at age 80+, while dementia and ischemic heart disease are the new leading causes of death in all ages (ONS, 2019). Evidence shows that adults living and dying in care homes are more likely than adults in other LTC settings to be aged 80+, severely disabled and affected by dementia (Teggi, 2020). Care homes, rather than hospices, are thus specializing in the care of the most common forms of dying in old age (and at the population level). Based on the qualitative findings from my PhD in five care homes in the South-West of England, this paper focuses on the characteristics and challenges of dying in care homes and how EOLC in care homes is organized, managed and governed. It argues that care homes developed forms of EOLC which, despite being marginal with respect to specialist palliative care services, are attuned to the characteristics of dying in very old age, with frailty, dementia and severe longstanding disability.