July 17, 2013

end of the road for the Liverpool Care Pathway: no cause for celebration

This is a guest blogpost by Helen Jamison, Deputy Director of the Science Media Centre.

The ‘pathway to death’ is finally being killed off. Gross failings and distressing examples of appalling care have brought the Liverpool Care Pathway abruptly to the end of its life. The move has been welcomed by many across the worlds of health and palliative care, and the Daily Mail has claimed a victory for their campaign against this ‘national disgrace’. Yet I for one take no joy in this decision.

I would be the first to call for continued improvements to end of life care, indeed when my own mother died I felt there were aspects of her care that were severely lacking; I am sure there are many ways to better the treatment of dying patients, who are individual human beings with complex needs. However, many believe that the LCP, set up in order to ensure the best quality of care for those in their final hours, was already doing just that. And without exception all the leading palliative care experts I have spoken to believe that the basic principles of the LCP are sound while they acknowledge that its application may of course sometimes fall short of best practice.

But this latest instalment in the row over the LCP leaves me with a profound sense of unease, that health policy on such an important issue may be being driven too much by the media and political manoeuvring, and not enough by evidence from the experts. Incredibly the report from the LCP review panel openly acknowledges that the entire policy is being reviewed ‘because of substantial criticism of the LCP in the media and elsewhere’. There is a fine tradition of campaigning journalism in this country, which I applaud, but am I the only one saddened to hear the LCP is to be scrapped primarily because of sensational newspaper campaigning? Is this really evidence-based policy making at its best?

It’s unsettling to hear Baroness Neuberger say that, despite evidence the LCP helps ease the dying process when used correctly, it must still be phased out. Leading experts at a press briefing at the SMC in January all argued that the LCP works when used properly, so why such radical action? The only answer I am getting from people I speak to is that the ‘brand had become toxic and had to go’. But as NHS commentator Roy Lilley starkly puts it, we don’t do away with traffic signs because some people don’t follow them. I know I may be painted as naïve, and of course I do not have the responsibility for leading a system that is so under fire, but I cannot help feeling that the right thing to do is for government and health experts to roll up their sleeves and defend what works about the LCP, while being open about what needs to change. I’m not even convinced that giving in to a one-sided media campaign will deliver the easy life our health leaders must yearn for; end of life care will always be an emotive issue and there will always be positive and negative experiences in the press. What’s to say that the replacement for the LCP won’t come in for an equally rough ride?

I also feel uneasy about other aspects of this story. From the beginning the review was described as ‘independent of government and the NHS’. So why was the story trailed in the media by government sources with comment from care minister Norman Lamb the weekend before the review panel’s embargoed press briefing? With the story leaked but the report still held under wraps it was almost impossible for the SMC to get independent experts to give informed comment as the story broke, quite simply because they had nothing to comment on.

And the whole saga raises another issue that we care about here. The Science Media Centre has raised concerns about the fact that when scientists, clinicians and other experts advise government on important medical and science issues their voices are often lost to the media. The explanation from government for taking these independent scientists out of the fray is that it’s crucial for them to be given time out of the media spotlight to privately advise and inform policy making, allowing for a full and proper review of the evidence. Yet this example proves what we have been arguing for some time – that governments are just as influenced by the media debates as private scientific advice, and thus experts should be part of the media debate as well as advising government behind closed doors.

Most palliative care organisations have welcomed the review as an opportunity to overhaul and improve end of life care. Maybe they are right and the end justifies the means. I hope so. But changing health policies largely in response to media outcries is not without cost. I fear we’ve given up the chance to have a rational and informed public debate about the evidence, and I fear that those who believed their families benefited from the LCP may now question their own judgement. And it means that when they finally turn off the LCP’s life support, I won’t be feeling much like celebrating.

This blog contains the thoughts of the author rather than representing the work or policy of the Science Media Centre.