People living with frailty face an inherently uncertain future with the unpredictable dying trajectory of frailty being widely recognised. Uncertainty can also result from healthcare systems, from fragmented care due to multiple illnesses, or patchy communication between services. It can leave patients, carers, and health professionals distressed and overwhelmed.
Advance care planning is seen as an important intervention for people living and dying with frailty as the process has the potential to prevent individuals receiving care and interventions that may be of low value. Current approaches to advance care planning originated in palliative care for people living with cancer, which typically has a relatively predictable disease trajectory. In contrast, the norm in frailty is a more ambiguous trajectory characterised by an uncertain future, where any plans must necessarily be adaptable to future changes in circumstance.
Advance care planning seeks to help individuals articulate their preferences and priorities for care in the face of an uncertain future. Advance care planning is thus intertwined with and inseparable from uncertainty, yet the relationship between the two is relatively under-recognised and under-investigated. The papers in this themed collection explore aspects of this relationship in the context of frailty. Some of the included papers discuss uncertainty explicitly, while in others, uncertainty is implicit in discussions of advance care planning, reflecting that uncertainty is often an important undercurrent in these situations. Uncertainty is commonly conceptualised as a barrier to advance care planning, but advance care planning can also be seen as an opportunity to help people live well by supporting them to make sense of ongoing and irreducible uncertainty.
This collection of Age and Ageing papers is accompanied by an expert commentary on the topic.
Guest editors: Dr Pippa Collins, Dr Sarah Hopkins, Dr Helen Milbourn, Dr Simon Etkind
