Dr Louise Bramley, University of Nottingham
Negotiating care services with frailty: Implications for autonomous decision making and the policy and practice of advance care panning.
Background: The Mental Capacity Act (MCA) provides a statutory framework for advance decision making and upholding patients’ autonomous choices in the event of incapacity. In practice, advance care planning (ACP) can facilitate this process and is promoted in policy as a means by which older people living with frailty can make decisions regarding future care. However, few engage in this process and little is known about they 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. Frail older people and their nominated carers were recruited from hospital wards in a large University Hospital NHS Trust prior to discharge. They took part up to two interviews either in hospital or their homes. Within and cross case qualitative analysis was undertaken.
Results: 16 frail older people and 8 carers were recruited (17 female, 7 male age range 70-96). Rapid changes in their physical condition meant older people living with frailty experienced uncertainty and as a result focused on living day to day. Making future care plans that were likely to become obsolete was of little interest to them. Increasing dependency on care and care systems appeared to offer little individual flexibility meaning that they struggled to assert any control over day to day decisions. For many, autonomous choice and decision making gave way to relationships, partnerships and negotiations that are commensurate with a more relational model of autonomy.
Discussion and Conclusion: Profound uncertainty and rapid change makes future decision making challenging for older people living with frailty. Lack of autonomy in day to day decision making makes the liberal ideal of autonomy as presented by the legalistic and ideologically driven policy of ACP out of step with the lived worlds of frail older people. For those facing increasing dependency on care and care services, frameworks that acknowledge a more relational approach when planning future care are needed to engage older people living with frailty in ACP.