Perspectives on autonomy and advance decision-making: A qualitative study based on older people living with frailty and their carers

Abstract

The Mental Capacity Act 2005, covering England and Wales, sets out formal tools to extend autonomy past the onset of incapacity that protect an individual’s right to retain autonomy in decision-making. Despite policy drivers who encourage healthcare professionals to support advance decision-making for future care, very few individuals living with frailty engage in doing so. In this article, we interrogate these issues using data from a qualitative study of older people living with frailty, which engages with how those living and coping with varying degrees of frailty experience their situation day to day and their perceptions of planning for incapacity and decision-making. After critically evaluating the viewpoints of older people living with frailty and their carers, we assess the significance of their perceptions for the contemporary debates surrounding autonomy and how they align with the policy perspectives and the clinical practice of advance care planning.