Abstract
BackgroundIncreasing 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.AimTo explore the role of an end-of-life diagnosis in shaping the provision of health care outside acute hospitals.Design and settingQualitative interviews with 19 healthcare providers from community-based settings, including nursing homes and out-of-hours services.MethodSemi-structured interviews (nine individual, three small group) were conducted. Data were analysed thematically and using constant comparison.ResultsIn 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.ConclusionEnd-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.
Highlights
The project of end-of-life care, like its parent project palliative care, evolved in the context of care for people with cancer[1] before broadening to include all those with a lifethreatening illness.[2]
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 ‘endof-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
Summary
The project of end-of-life care, like its parent project palliative care, evolved in the context of care for people with cancer[1] before broadening to include all those with a lifethreatening illness.[2] In English end-of-life care policy, for example, a key commitment is to ensure good care for ‘every person nearing the end of their life’.3 This commitment implicitly extends the remit of palliative care to encompass the growing proportion of deaths that occur in older people,[4] many of whom die with frailty[5] or multiple age-related comorbidities[6] rather than with a single life-limiting condition. 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. This difficulty makes it important to ask how care provision is affected by not having an end-of-life diagnosis
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