Uncertainty and advance care planning in older adults living with frailty
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.
We can also create uncertainty for people living with frailty and their supporters; fractured communication, use of euphemistic language, having the same discussion with their GP, their community team and the team in hospital all lead to unease and sometimes upset. Advance care planning is an emotional undertaking, yet it often occurs in the noisy and chaotic environment of a hospital ward.
Living well day-to-day is a key priority of older people living with frailty, yet research into advance care planning often focuses on outcomes that are important to healthcare systems, such as admissions to hospital, numbers of plans made and health care usage. Having an advance care plan may mean that people are more likely to die in their care home, but this does not always decrease their number of hospital admissions. Ambivalent outcomes such as these have led some to question the value of advance care plans.
Embracing the concept of uncertainty as it applies to a person living and dying with frailty can lead to a reconsideration of the goals of advance care planning. Having meaningful conversations to understand a person's life story and values, encouraging discussions between family members to avoid decision-making in a crisis, and enabling people to prioritise what is important to them (rather than what is important to clinicians) are all important outcomes. Measuring the success of advance care planning interventions requires moving beyond numbers and towards assessment of quality of implementation. Helping individuals to live with ongoing uncertainty may be an important element of advance care planning that deserves further investigation.
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