Similar uncertainties about illness, care, and the future are experienced by older people with multiple advanced chronic illnesses (multimorbidity) and by their carers and healthcare professionals, according to new research from the Primary Care Unit at the University of Cambridge.
The research holds promise for supporting the holistic care of those with advanced multimorbidity.
Uncertainty exists within almost every clinical encounter for those with multimorbidity. We know that uncertainty can be highly distressing and that some people really struggle to say what care they want or to plan ahead when the future is uncertain.”
– Dr Simon Noah Etkind, lead author and Academic Clinical Lecturer in Palliative Care, Primary Care Unit
A new model called Total Uncertainty, based on the research, summarises the ways that uncertainties are experienced. The aim is to support shared understanding between patients, carers and healthcare professionals and ultimately to facilitate improved person-centred care.
The researchers conducted an analysis of available research on uncertainty, focused on the illness trajectory of older people with two or more advanced illnesses (multimorbidity). The team’s analysis included qualitative data from 40 different studies with 1147 participants, conducted in Europe, North America and Australasia. Participants were mostly healthcare professionals and patients, with a smaller number of carers.
The research team, led by Dr Simon Noah Etkind at the Primary Care Unit, identified five themes within which uncertainty could be experienced: ‘appraising and managing multiple illnesses’; ‘fragmented care and communication’; ‘feeling overwhelmed’; ‘uncertainty of others’ and ‘continual change’.
They developed the Total Uncertainty model from their research, which represents the ways that patients, carers and healthcare providers might experience uncertainty across the five themes.
Physical uncertainties: patients, carers and health professionals experienced uncertainty as they attempted to unpick the complexities of multiple illnesses. Often each additional health condition added an additional layer of complexity. Healthcare professionals, for example, reported that the standard guidelines did not always apply when it came to treating frail patients with many illnesses.
Practical uncertainties: the research revealed that multimorbidity was synonymous with complex care, but that care was often fragmented. Patients were frequently unsure who was responsible for each aspect of their care.
Psychological and existential uncertainties: uncertainties were also generated in the psychological domain. One study commented that “For some participants, the impact of uncertainty was overwhelming, resulting in an experience of powerlessness and confusion.” Clinicians commented on not knowing where to start and not having an obvious best decision. One said: “ He’s got like 30 things wrong and he’s on a ton of medications.”
Social uncertainties: the uncertainty of others was important. Some patients noted that professionals and carers were uncertain as to their (the patient’s) ability to function and did not trust their physical abilities. They sometimes thought that health professionals were uninformed and uncertain about their patient’s needs.
Continual change: finally, experiences of uncertainty inevitably changed with the course of time, as illnesses changed. Some uncertainties fluctuated greatly or could be ‘episodic … relat[ing] to symptoms, aspects of care, changes in provision, or decision-making.’
The researchers hope that the new Total Uncertainty model will help patients, carers, and health professionals to develop a shared understanding of the uncertainties they are experiencing and apply this understanding to make joint plans for an unpredictable future. Dr Etkind said: “The Total Uncertainty approach could help patients, carers and healthcare staff to bridge gaps between their experiences of uncertainty. We hope that it will be useful in establishing understanding that will make it easier to negotiate a person-centred plan for care.”
The next steps, explained Dr Etkind, are to work out how the model could be applied in practice, to incorporate cultural differences in attitudes to illness and end of life, and to find ways of communicating uncertainly more effectively. Improving communication of uncertainty could greatly improve how people experience their illness and care.
Simon Noah Etkind, Jiaqi Li, John Louca, Sarah A Hopkins, Isla Kuhn, Anna Spathis, Stephen I G Barclay: Total uncertainty: a systematic review and thematic synthesis of experiences of uncertainty in older people with advanced multimorbidity, their informal carers and health professionals. Age and Ageing, 18 August 2022. https://doi.org/10.1093/ageing/afac188
Simon Etkind is funded by a Health Education England Academic Clinical Lectureship and Stephen Barclay is funded in part by the National Institute of Health and Care Research (NIHR) Applied Research Collaboration East of England (ARC EoE) programme. Sarah Hopkins is jointly funded by The Dunhill Medical Trust and British Geriatrics Society.
Find out more
The Total Uncertainty graphic by Dr Simon Noah Etkind is licensed CC BY-NC