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Research helps understand how doctors recognise when a patient is dying

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Research has identified the key signs and symptoms that expert doctors use to recognise when terminally ill patients are imminently dying.

The findings, published in the journal BMJ Open, come from researchers Dr Nicola White, Stone and colleagues of the Marie Curie Palliative Care Research Department at University College London (UCL), together with Brunel University London’s Honorary Professor Priscilla Harries. Dr White’s and Prof Harries’s previous study found that some doctors are frequently inaccurate when predicting how long those living with terminal illnesses will survive. They have sought out the top experts, and statistically modelled how these top performers use and combine information to make the most accurate decisions. 

While the National Institute for Health and Care Excellence (NICE) guideline on care of dying adults in the last days of life describes the recognition of imminent death as an essential first step towards improving care for dying patients, it does not clearly explain how clinicians are expected to identify such patients – nor does it offer advice about how novice doctors can learn or improve their clinical skills in this area.

The team’s new study set out to first identify a group of palliative care doctors who had particular expertise at recognising when a patient is dying. Volunteer doctors completed an online test, in which they were presented with 20 real case studies of patients who had been referred to a hospital or hospice for palliative care. The doctors were asked to decide whether the patient was close to death or not, and the results enabled researchers to identify the top 20% of participants who were most accurate at predicting when the patients would die.

The ‘top performers’ were then presented with an additional 50 cases of hypothetical patients and were again asked to estimate the probability of death within the next 72 hours. Based on the decision-making of this expert group, the researchers were able to determine the relative importance of different factors that unconsciously lay behind the doctors’ survival predictions.

The most influential factor was the Palliative Performance Score, which measures how much support someone needs based on their functional ability: ranging from fully independent (100%) to bed-bound, needing full support and unconsciousness (10% and below). The next most important factor was the presence of an abnormal pattern of breathing called Cheyne Stoke breathing. 

Paddy Stone, Professor of Palliative and End of Life Care at the Marie Curie Research Department at UCL, said: “Even at the very end of their lives, patients, their families and the staff looking after them want to know how long they may have left to live. Understanding that death is imminent can allow patients and their families adequate time to prepare.

“This research has shone a light on how expert doctors are able to recognise when terminally ill patients are nearing the ends of their lives, and it is to be hoped that this greater understanding will help to educate medical students and less experienced doctors about how to improve this clinical skill.”

Dr Adrian Tookman, Medical Director at the Marie Curie Hospice, Hampstead, said: “When someone is unwell and imminently dying, the question that is almost always asked is ‘how long has my loved one got?’ This is such an important issue since it allows people to make the very best decisions in, what for most people, is a very distressing time.

“This paper reinforces that expertise and knowledge in this area is needed, we need to understand how we can help people to manage the uncertainties that can occur at this time. Medicine is part art and part science, we must ask and explore the most challenging questions to improve our understanding of the dying process. It is only by doing this, that we can teach others to manage dying patients in the most compassionate and appropriate way.”

Prof Harries – an expert in studying clinical decision-making, and now Assistant Dean of Research and Director of the Centre of Health and Social Care Research based at St George’s, University of London – added: “We are now developing and testing online education through a randomised controlled trial. If found to be effective, we will be able to teach novice doctors and medical students how to model their own judgement policies on those of the ‘experts’.

“It is so important to have this last stage of life recognised – in order for patients to be treated appropriately, to move home if wished, and to notify family and loved ones so they have the chance to say goodbye. Dying well is an important stage of life and a key aspect of the high-quality health services we provide.”

‘How do palliative care doctors recognise imminently dying patients? A judgement analysis’, by Nicola White, Priscilla Harries, Adam J L Harris, Victoria Vickerstaff, Philip Lodge, Catherine McGowan, Ollie Minton, Christopher Tomlinson, Adrian Tookman, Fiona Reid and Patrick Stone, is published in BMJ Open. The research was supported by the terminal illness charity Marie Curie and a UCL PhD studentship.

The previous study is ‘A systematic review of predictions of survival in palliative care: how accurate are clinicians and who are the experts?’, by Nicola White, Fiona Reid, Adam Harris, Priscilla Harries and Patrick Stone, published in August 2016 in PLOS One.

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