Dr Pippa Collins is an advanced clinical practitioner at Dorset Healthcare University NHS Foundation Trust and ARC Wessex/Alzheimer's Society post-doctoral research fellow at the University of Southampton. She is also a member of the BGS End of Life SIG, part of the nationwide community of ARC Dementia Fellows, member of the ARC Wessex Ageing and Dementia theme, and lead advanced clinical practitioner for research in her NHS trust. Her clinical and research interests are in understanding, recognising, demedicalising, and improving the end-of-life period for people living with severe frailty and dementia.
One of the aspects of working with older people that has always attracted me is the uncertainty that nearly always surrounds decisions around their health and care needs. We work in a grey area (literally and metaphorically) where certainty is rare.
Our recently published commentary brings attention to how uncertainty is intertwined with - and inseparable from - the process of advance care planning. Current approaches to advance care planning originate in palliative care for people living with cancer, which generally has a fairly predictable disease trajectory. The trajectory of dying with frailty is an unpredictable and dwindling one, with episodes of crisis and partial recovery.
People living with frailty face an inherently uncertain future, yet when discussing advance care plans with people living with severe frailty, we are often expected to give clear prognoses. That interconnectedness of advance care planning and uncertainty are intertwined remains under-recognised. Situations can change from day to day and even over the course of a day, making both healthcare professionals and people living with frailty reluctant to plan ahead.
Although uncertainty is a barrier to advance care planning, if acknowledged, it can be an opportunity to enable a person to live well whilst facing an uncertain future. Overtly recognising uncertainty with all participants in the advance planning conversation and encouraging conversations between them is key, as is really understanding what is important to that person, and recognising that healthcare is only a small part of a person's life - and that other elements may be more important. Through advance care planning conversations, clinicians can help people to address the uncertainty and make sense of their situation, potentially leading to an improvement in wellbeing.
