Two studies published in the journal PLOS ONE directly compare, for the first time, commonly used algorithms for predicting survival length (prognosis) against clinicians’ predictions, and combine interviews with patients, carers and healthcare professionals to assess the perceived usefulness of prognosis tools.
The findings of the work, funded by the National Institute for Health Research and led by the Marie Curie Palliative Care Research Department at University College London (UCL), show that at least two of the studied algorithms were equally as good as the combined judgement of an experienced doctor and nurse in predicting whether patients would live for days, weeks or months. All of the patients in the study had advanced cancer, with no further curative treatment options, and an average survival of only 45 days.
The lead researcher explained that although the best algorithms were as accurate as expert clinician judgement, the overall accuracy was only just over 60%. The research concludes that while prognosis algorithms are currently no more accurate than clinicians’ judgments they may be helpful in other ways such as providing a supplementary second opinion or helping less experienced staff navigate difficult conversations with patients and their loved ones about their prognosis and end of life plans.
Lead researcher, Professor Paddy Stone, from the Marie Curie Palliative Care Research Department at UCL said:
“Even when patients are terminally ill, having an accurate prognosis can be extremely valuable. Knowing whether one only has days, weeks or a few short months remaining can help prepare for the end of life and to focus on achieving the best possible quality of life.
“Although clinicians can recognise when patients with advanced cancer have become terminally ill and will no longer benefit from life-prolonging treatment, they still cannot be sure whether the remaining time is to be measured in days, weeks or months. For clinicians, knowing an accurate prognosis can help with planning care and with facilitating access to services. For example, knowing when someone is likely to die can unlock faster access to welfare benefits and extra social care support.
“Despite its limitations, professional judgment is still the best way to predict how much time remains for people who are terminally ill. Algorithms may, however, have a role in supplementing the judgments that clinicians make, or maybe helpful in guiding less experienced professionals. I would not recommend that prognosis algorithms should be used by patients themselves, since the results still need to be interpreted in the light of clinical judgement. As is often the case, good communication skills are essential. Open and honest conversations can help people to live the best quality of life and clinicians should not shy away from recognising uncertainty.”
Interviews conducted as part of the research show that some doctors found the prognosis tools helpful to supplement their own predictions.
“I think we’re a little bit uncomfortable when we are asked the question about what time is left, because we know that it’s an estimate? We don’t want to be completely wrong, I suppose, and yet we understand that something sudden can happen at any point, can’t it? So, I think the PiPS tool perhaps gives you more confidence in making a prediction.”
Junior doctors expressed that the second opinion that a tool might offer could improve their confidence and help with their lack of experience.
“In the past I’ve found it extremely difficult to give prognostic information, especially when working in a hospital as it seems more unpredictable and, you are not really working in a specific palliative care environment, you do sometimes feel a bit lost with these kinds of conversations.”
“It would be interesting for junior staff like me to use PIPS that are new to palliative care. Say, okay, for your first month in your job, try and plug in the details of the patients that we’ve actually got the relevant details for, and then just get a feel yourself on how that’s matching up to your own reality and clinical judgement of what time patients have left.”
One patient interviewed by the research team said that having a more formal tool could be a helpful way to start a conversation about the end of life with a loved one and their clinicians.
“I think the tool would be useful to help doctors start that sort of conversation about time left for people, I have felt that it is treated as a big secret as if they [doctors] feel embarrassed to tell you or don’t know what to say. But I think if you’ve got something saying, look, we’ve had a look at this tool and it says maybe it’s months not years, you know a bit of power to your elbow is always useful, isn’t it?”
The research papers – Prognostic tools or clinical predictions and The Prognosis in Palliative care Study II – compared the effectiveness of five prognosis tools with clinician judgement in 1833 adults with incurable cancer, who had recently been referred to community, hospital and hospice palliative care services across England and Wales. Interviews were held with 29 patients, 20 caregivers and 32 clinicians.
About Marie Curie
Marie Curie is the UK’s leading end of life charity. The charity provides essential frontline nursing and hospice care, a free support line and a wealth of information and support on all aspects of dying, death and bereavement. It is the largest charity funder of palliative and end of life care research in the UK. Marie Curie is committed to sharing its expertise to improve quality of care and ensuring that everyone has a good end of life experience. Marie Curie is calling for recognition and sustainable funding of end of life care and bereavement support.
The charity believes it is important to talk more openly about dying, death and bereavement to improve experiences at end of life and to help reduce the lasting effects of grief. Marie Curie organised a National Day of Reflection on 23 March 2021 to provide an opportunity for the Nation to reflect, remember and celebrate the lives of everyone that died during the pandemic – from Covid and other causes. The charity aims for the national day of reflection to become an annual event.
Please note we are ‘Marie Curie’ (not ‘Marie Curie Cancer Care’).
About The National Institute for Health Research (NIHR)
The National Institute for Health Research (NIHR) is the nation’s largest funder of health and care research. The NIHR:
• Funds, supports and delivers high quality research that benefits the NHS, public health and social care
• Engages and involves patients, carers and the public in order to improve the reach, quality and impact of research
• Attracts, trains and supports the best researchers to tackle the complex health and care challenges of the future
• Invests in world-class infrastructure and a skilled delivery workforce to translate discoveries into improved treatments and services
• Partners with other public funders, charities and industry to maximise the value of research to patients and the economy
The NIHR was established in 2006 to improve the health and wealth of the nation through research, and is funded by the Department of Health and Social Care. In addition to its national role, the NIHR supports applied health research for the direct and primary benefit of people in low- and middle-income countries, using UK aid from the UK government.