Embracing inherent uncertainty in advanced illness
BMJ 2016; 354 doi: https://doi.org/10.1136/bmj.i3802 (Published 18 July 2016) Cite this as: BMJ 2016;354:i3802
- B Kimbell, researcher,
- S A Murray, professor of primary palliative care,
- S Macpherson, carer support group representative,
- K Boyd, consultant in palliative medicine
- 1Primary Palliative Care Research Group, Usher Institute of Population Health Sciences and Informatics, University of Edinburgh, Edinburgh EH8 9AG, UK
- Correspondence to: K Boyd kirsty.boyd{at}ed.ac.uk
Everyone dies, but uncertainty about how and when that will happen is inevitable.1 Uncertainty can be seen as an “enemy” to be constrained by medical science. Work continues on tools that try to provide a reliable prognosis for people with advanced health conditions as far as six or 12 months ahead on the grounds that meaningful choices require robust evidence of risk of death. However, such tools are not reliable when applied to individuals.2 Uncertainty also drives fears about future debility, loss of control, and either inadequate or excessive healthcare.
We question the perception that uncertainty is a barrier to appropriate person centred care towards the end of life. Uncertainty may in fact be more friend than foe. An unpredictable but evident risk of deteriorating and dying should be a trigger for planning care with all people who have an advanced illness and in all care settings. It offers a prime opportunity to accept and manage the inherent uncertainties of living and dying well with progressive, advanced conditions.
Challenge for people with advanced conditions
Most people have a poor understanding of the underlying causes, severity, and future course of many long term conditions. Many struggle to make sense of events and experiences or to predict likely outcomes. They have difficulty finding the resources they need to cope with them. This in turn reduces their capacity for self management and puts patients and carers at risk of anxiety, depression, and poor outcomes. Professionals need to manage uncertainty, coordinate care, and help people to sustain their identity.3
When we consider the experiences of people with different advanced conditions, contrasting illness narratives and perceptions of uncertainty emerge among patients, carers, and professionals (table 1 …
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