When will we remember that good end of life care centres around the person, not a prognosis?
This week research was published which revealed that ‘a simple method, routinely used by clinicians to help identify patients who may be approaching their last years of life, is frequently inaccurate’.
This was picked up by the Mail Online, The Telegraph and The Times who stated things such as ‘tens of thousands of patients are being prematurely warned they could be about to die because of a defective diagnostic method used across the NHS’.
The research itself provides an interesting analysis. And it’s hardly surprising that the press jumped on the seemingly sensational findings, after all, if doctors are wrongly predicting when people are going to die surely this has negative ramifications for patients themselves? So what’s the issue? The issue is that, yet again, the importance of placing the individual at the centre of their care and at the centre of decision-making has been forgotten.
The ‘surprise question’ was developed as a way to enable clinicians to identify people who are nearing the end of life, with a view to this triggering a deeper look at that person’s needs. The healthcare professional is asked to consider the question ‘would you be surprised if this person died within the next 12 months?’
But the reductive reporting of this research conflates this ‘surprise question’ with a prognosis. They are simply not the same thing. The surprise question is a useful tool that enables clinicians to, amongst other things, identify those who may need a conversation about their wishes and preferences. To characterise it as a prediction of life expectancy is hugely misleading. Thinking you wouldn’t be surprised if someone died within the next 12 months is not the same as saying to that person they only have 12 months to live.
When the research states that clinicians made inaccurate predictions about one third of the patients who did die this unfairly infers that the surprise question is a prediction and lays ‘blame’ on the doctors who used it.
However, and more importantly, the coverage misses the point that good end of life care is the result of so much more than an accurate prognosis. Marie Curie, amongst others, have acknowledged that what really matters is providing the best possible care based on an individual’s needs, essentially being ‘person-centred’. However the reporting of this research has vilified the surprise question, the very point of which is to try to enable person-centred care.
The Times claimed that doctors were using “stone age” methods to pick out those patients who might need extra help at the end of their lives, risking overburdening palliative care services with the relatively well. It’s important to point out that the surprise question is not a tool that results in an automatic referral to palliative care, but is a trigger for those doctors themselves to instigate conversations with the person about their hopes, fears and preferences for end-of-life treatment and care. All people, regardless of how close they are to the end of life, should be encouraged to discuss these issues.
Our research with people who are dying and their carers has shown repeatedly that having conversations about wishes and preferences results in better outcomes for the person:
“Our choices were supported and we were prepared to make the necessary decisions, but that was because we had talked about it together, had thought, and talked about, end of life. We knew the questions to ask the healthcare team - and that's important.”
I don’t think anyone would disagree that providing end-of-life care that is person-centred is essential to achieving a better ending for people. But coverage such as this moves us away from that aspiration, not towards it.