Blogs — 29.03.2023

Reflecting on the uncertainty in serious illness: to the state of the science, and beyond workshop

Dr Simon Noah Etkind is a member of the Cambridge Palliative and End of Life Care Research Group (PELiCam) at the University of Cambridge. His research addresses uncertainty in serious illness. In this blog, he describes a rapid prioritisation approach at a workshop he organised to develop and rank uncertainty research priorities. The workshop was supported by NIHR ARC East of England.

There was a buzz in the room as the votes came in and attendees at our ‘uncertainty in serious illness: state of the science’ workshop ranked their priorities for future uncertainty research. This was the culmination of an intensive day in which about 50 people from across the country had convened to tackle this tricky but ubiquitous topic.

I’ve been exploring uncertainty in advanced illness for several years, and its association with illness goes back to antiquity. But uncertainty is a very modern issue. As a palliative care physician, I see people every day who face an uncertain future, and have seen the distress that uncertainty can cause, especially when it is poorly addressed.

Equally, I’ve often felt overwhelmed by uncertainty myself when caring for someone with complex illness. What is happening? What to do next? Who to involve? Who is in charge? Shouldn’t these be questions we as clinicians should know the answer to? And yet often we don’t.

Uncertainty workshop

Total Uncertainty diagram by Dr Simon Noah Etkind, Clinical Lecturer in Palliative Care & Acting Consultant in Palliative Medicine

Whilst uncertainty sometimes results from a lack of information that can be remedied, or a communication deficit that can be addressed, there are many uncertainties that we will never be able to eliminate in serious illness. These are often aleatory uncertainties, i.e. they are governed by random chance and cannot be predicted. Such uncertainties are here to stay.

But uncertainty doesn’t have to be distressing: in psychology, uncertainty is seen as a neutral concept, and its impact depends on how it is appraised and understood. This means that if we can enable people to appraise uncertainty differently, or tolerate uncertainty better ourselves, then much of the distress associated with uncertainty, and its potential wider impacts on decision making and care planning, could be ameliorated.

Total uncertainty describes multi-perspective experience in advanced multi-morbidity. Whilst there are communication gaps, uncertainty is fundamentally a shared experience – a mutual understanding is possible!

Dr Simon Noah Etkind, Clinical Lecturer in Palliative Care & Acting Consultant in Palliative Medicine

One-day workshop to develop consensus on future research

One difficulty researching uncertainty in serious illness is that it is everywhere. There are so many uncertainties, experienced by different people, in different contexts, at different stages of illness, that it is difficult to know where to start to address it. That’s why I and colleagues from ARC East of England, Hull York Medical School, and the NIHR national cross-ARC Palliative and End of Life Care Collaboration decided to convene a one-day workshop to explore the issue of uncertainty in serious illness and develop consensus on future research priorities.

We invited those with an interest in uncertainty related to serious illness, and included patient representatives, researchers, and clinicians from palliative care, gerontology, primary care, intensive care, and other relevant areas to join us on 28 February 2023. Following presentations summarising our current understanding of uncertainty, we held focus groups in which we asked attendees to share their experiences of uncertainty in serious illness, identify key challenges and, crucially, identify what we don’t yet know about uncertainty and what we need to know as a priority to be able to address it optimally. These conversations resulted in long lists of possible research priorities.

Uncertainty in all its forms is an important component of much of our patient care, but is rarely acknowledged either to ourselves as professionals or with patients and their families. This workshop “brought the elephant into the room”, starting a programme of work in this important area of care that Simon Etkind and colleagues in the ARCs will be taking forward together in the future.

Professor Stephen Barclay, Theme Lead for Palliative and End of Life Care

The rapid prioritisation approach

To make the most of the experience in the room, we adopted a rapid prioritisation approach, aiming to develop and rank research priorities during the one-day workshop. This came with its challenges: I and Professor Koffman spent a demanding hour during the lunch break summarising the wealth of information from the focus groups. But by the final session we had developed a summary list of key areas from the focus group discussions, which we presented back to attendees for review and comments. Encouraged by nods of recognition and agreement from the room, we put the list to a vote using a live online survey tool.

The result came instantly with a mouse click, and whilst there is work to do to further analyse the workshop findings and finalise the ranked priority list, there was consensus that communication of uncertainty is the highest priority for future research in this area. I think this reflects a recognition that when uncertainty cannot be eliminated, the most important thing is clarity, and an opportunity for all involved in a situation of uncertainty to understand what is happening in order to make a joint plan. In essence, we all need to talk about uncertainty more.

Where next?

The best way to communicate uncertainty will depend on many factors related to the context, how individuals respond to uncertainty, and the responses of others involved in care. We need more research to explore communication of uncertainty and identify optimal strategies for conversations about uncertainty. The priorities identified at this workshop, which I hope to be able to share in full in due course, will help build the case for such research.

Dr Simon Noah Etkind is Academic Clinical Lecturer in Palliative Care, working with the Palliative and End of Life Care Research Group (PELiCam), Primary Care Unit, University of Cambridge. This event was supported by the NIHR ARC East of England

Email: sde23@medschl.cam.ac.uk

Relevant publications relating to serious illness uncertainty