Care homes as hospices for the prevalent form of dying: An analysis of long-term care provision towards the end of life in England

Teggi, Diana (2020). Care homes as hospices for the prevalent form of dying: An analysis of long-term care provision towards the end of life in England. Social Science & Medicine, 260, article no. 113150.

DOI: https://doi.org/10.1016/j.socscimed.2020.113150

Abstract

In the UK and the Westernised countries, most people die aged 80+ from disabling, chronic and degenerative diseases, having spent several 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 within policy and almost nothing is known about what determines the modality and intensity of LTC provision in old age towards the end of life. Drawing on multinomial logistic regression analysis of the English Longitudinal Study of Ageing (ELSA), this paper evaluates how health and socio-demographic factors affect the relative probability of receiving care through one of five long-term care arrangements (LTCAs) from the time of need at age ≥50 to death; and assesses the consequences this has for the English LTC and EOLC policy and planning. The study reveals that hospices provide end-of-life LTC for cancer diagnoses and adults aged 50–64, while care homes provide open-ended and end-of-life LTC for non-cancer diagnoses, dementia, severe disability, and adults aged 80+. Further, the informal, formal, mixed and care home LTCAs reflect increasing levels of disability and ill-health, and decreasing levels of family support, with differences concerning education and gender. Finally, dementia and Parkinson's disease are the single strongest determinants of high formal LTC provision, and overall high care needs determine high formal LTC provision. Within the English context, the consequences of this are that: 1) Continued reliance on informal family care is not sustainable; 2) To provide free formal LTC to old adults with high care needs is appropriate; and 3) Hospices do not cater for the prevalent form of dying in old age while care homes do, being the de facto hospices for severely disabled, very old (80+) adults with dementia. Yet this is not represented in English EOLC policy and research.

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