Background ACP is commonly conceptualised as informing treatment and decisions in event of a person’s loss of capacity. People with progressive frailty are at high risk of mortality and loss of capacity. Little is known about whether frail older people (FOP) regard advance care planning as relevant or what perspectives they have on decision-making for the future.
Aim To investigate the perspectives of very frail older people and their carers on decision making and planning their future care.
Methods The study adopted an exploratory case study design using serial qualitative interviews. FOP scoring five or more on the Clinical Frailty Scale and their nominated carers were recruited from hospital wards. Up to two interviews were undertaken. Within and cross case qualitative analysis was undertaken.
Results 16 FOP and 8 carers were recruited. Many have difficulty imagining a future. They experience profound uncertainty, associated with rapid changes to their physical and/or mental state and complex challenges in everyday life. Consequently, their attention is focused on day to day maintenance of quality of life, rather than on future care or decision-making.
Discussion The future and end of life orientation of current ACP policy and practice is at odds with the dynamic nature of frailty and does not correspond to individuals’ needs to find ways to maximise their current quality of life.
Conclusion Further research is required to inform a model of ACP that is inclusive of and commensurate with the needs of very frail older people to focus on improving day to day quality of life.
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