The difference an End of Life diagnosis makes: a qualitative study of community care providers’ perspectives

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Polak, Louisa 

Background Increasing numbers of people die of the frailty and multimorbidity associated with old age, often without receiving an End-of-Life diagnosis. Compared to those with a single life-limiting condition such as cancer, frail older people are less likely to access adequate community care. To address this inequality, guidance for professional providers of community healthcare encourages them to make End-of-Life diagnoses in more such people. These diagnoses centre on prognosis, making them difficult to establish given the inherent unpredictability of age-related decline. This difficulty makes it important to ask how care provision is affected by not having an End-of-Life diagnosis. Aim To explore the role of an End-of-Life diagnosis in shaping the provision of healthcare outside acute hospitals. Design and Setting Qualitative interviews with nineteen healthcare providers from community-based settings including nursing homes and nursing services. Method Semi-structured interviews (nine individual, three small group). Data were analysed thematically and using constant comparison. Results In our participants’ accounts, it was unusual and problematic to consider frail older people as candidates for End-of-Life diagnosis. Participants talked of this diagnosis as useful to them as care providers, helping them prioritise caring for people diagnosed as “End-of-Life” and enabling them to offer additional services. This prioritisation and additional help were identified as excluding people who die without an End-of-Life diagnosis. Conclusion End-of-Life diagnosis is a first-class ticket to community care; people who die without such a diagnosis are potentially disadvantaged as regards care provision. Recognising this inequity should help policy-makers and practitioners to mitigate it.

aged, community health services, frail elderly, palliative care, terminal care, Aged, Community Health Services, Death, Frail Elderly, Humans, Nursing Homes, Qualitative Research
Journal Title
British Journal of General Practice
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Royal College of General Practitioners
Marie Curie Cancer Care (unknown)