The difference an end-of-life diagnosis makes: qualitative interviews with providers of community health care for frail older people

Louisa Polak, Sarah Hopkins, Stephen Barclay, Sarah Hoare

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 health care encourages them to make end-of-life diagnoses more often in 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. To explore the role of an end-of-life diagnosis in shaping the provision of health care outside acute hospitals. Qualitative interviews with 19 healthcare providers from community-based settings, including nursing homes and out-of-hours services. Semi-structured interviews (nine individual, three small group) were conducted. Data were analysed thematically and using constant comparison. In the 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 being 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 was identified as excluding people who die without an end-of-life diagnosis. 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 policymakers and practitioners to mitigate it.