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Independents' Day

The Liverpool Care Pathway’s abrupt demise offers some hard lessons for the profession

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So the abolition of the Liverpool Care Pathway now looks a certainty. A rash of negative newspaper headlines last year, seemingly out of the blue, prompted ministers to set up an independent review led by former King’s Fund chief executive Baroness Julie Neuberger; today that review has recommended that the pathway should be phased out ‘within the next six to 12 months’.

The instinctive reaction of many GPs and other healthcare professionals today has been scepticism. Whatever comes next will be the Liverpool Care Pathway by any other name, it has been suggested. The change will be a cosmetic one to appease the Daily Mail. Others have gone further, suggesting on Twitter for instance that the pathway has been unfairly ‘demonised’ and ‘killed through ignorance’.

This stance echoes the response of much of the medical profession last year, when concerns were first raised. One hospital doctor wrote of the ‘panic spread by hacks and politicians’. A letter signed by 1,300 healthcare professionals argued that media criticism had caused ‘a lot of distress among families of patients and doctors’. Our very own Dr Martin Brunet, whose Pulse blog ‘Beyond the Headlines’ explores the coverage of health stories in the national press, asked whether the row was ‘a storm in the Mail’s teacup’, and concluded that ‘while individual patient stories should never be ignored, neither can they be used as evidence that the Liverpool Care Pathway is fundamentally flawed’.

Such a response from the profession in the face of apparently alarmist news stories about a long-established, evidence-based practice is entirely understandable. But with the benefit of hindsight, it was also misguided, for two key reasons.

Firstly, while the medical profession, hospitals and even Jeremy Hunt were in rare agreement that the LCP represents the gold standard for end-of-life care, it is clear now its implementation in many cases has fallen far short. Horror stories from patients’ relatives in the Daily Mail and elsewhere have perhaps been too easy to dismiss as hyperbole, but Baroness Neuberger’s sensible, measured report today points to real failings.

It found ‘a significant number of relatives and carers do not feel that they were involved in discussions about the care plan, or even offered the chance to be involved.’ A recurrent theme is that of inexperienced, junior clinicians making the decision to put patients on the LCP overnight or at weekends, when senior staff are less likely to be around.

The absence of palliative care services at night and over the weekend is flagged up as a serious issue, as are the incentives paid to hospitals for use of the pathway. There are issues with sedation and pain management – the report found ‘many hospital patients appear to be put on a syringe driver with morphine as the “next step” on the LCP, even if morphine is not the right drug or pain relief is not what is needed.’ And perhaps most shocking is the section on hydration and nutrition, with concerns that ‘risk-averse’ staff are overusing the ‘nil by mouth’ instruction. ‘There can be no clinical justification for denying a drink to a dying patient who wants one, unless doing so would cause them distress’, the report concludes.

(It’s worth noting too that despite the widespread assumption that the LCP represents the gold standard, today’s review raises real questions over its evidence-base, pointing to ‘significant gaps’ in the evidence and finding that ‘formal, independent, prospective testing of the LCP has not yet been carried out after nearly 10 years of its dissemination, which is a major cause for concern.’)

But secondly, and more significantly, the entire episode represents a catastrophic underestimation of the importance of genuine communication and engagement with patients. Even if the entire controversy was a phantom problem whipped up by the national media – and the findings already cited suggest that it was not – in this day and age it can never be enough for doctors to simply blithely insist that a medicine or a technique or a pathway is supported by the evidence, or that it is what they would want for themselves.

As every GP faced with yet another lengthy online printout knows all too well, the rise of the internet and the era of instant, mass communication has contributed to increasingly well-informed patients challenging the medical consensus. And when it comes to dealing with this kind of media storm, any sniff of ‘doctor knows best’ in the response from the profession will ensure that response falls on deaf ears.

Ultimately what comes next for end-of-life care may not look very different from the Liverpool Care Pathway. Those behind the review insist the changes will be substantive, but even if the new ‘end-of-life care plans’ differ largely in how they are presented to patients, the change will have been an important one. As one of the review’s panel put it at the press conference today, the Liverpool Care Pathway is now seen as a ‘toxic brand’  - and whatever healthcare professionals think of it, the pathway is next to useless without the confidence of the patients who are placed on it, and their relatives.

And as for the profession? Well, there are clearly lessons for the NHS in terms of how it listens to patient feedback and responds to media concerns. But Baroness Neuberger’s report also points to wider, systemic issues, which as she herself points out on a number of occasions echo some of the concerns raised in the Mid Staffordshire inquiries.

‘Forget the headlines, look at the evidence’ seems to have been a running theme throughout the Liverpool Care Pathway debate. Today, GPs could do worse than to forget the headlines about the pathway being axed, and instead look in detail at the evidence in the report.

Steve Nowottny is the editor of Pulse. You can follow him on Twitter @stevenowottny.

Readers' comments (10)

  • It is never right to dismiss patients' concern, even if this is expressed by the Daily Mail.
    The systemic problem here is the arrogant " pathway is evidence based and we know best" attitude which dismisses patient choice.
    The increasing use of one size fits all" pathways of care" ( or medicine by numbers) is the most worrying aspect of medicine and is supported by the Royal Colleges. It is clear that the intention is to improve the care given by people who are less experienced but this is not what happens. In fact it becomes a rigid framework which must be obeyed.

    I would love to list a few more pathways for the mail to get their teeth into.......

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  • Great comment from Anonymous - 15 July 2013 5:39pm - the problem isn't so much the guidelines as the "professions" who implement them.

    Why not change the professions first, and then start on the pathways?

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  • Vinci Ho

    It is a pity :
    In these cases(still minority) , the decision to put patients on the pathway was most probably rash and lack of support from senior clinicians . At the same time , it was also the the tick box culture which pushed the financial incentive to use the pathway .The pathway, I truly believe ,is correct as far as principles and ethos are concerned BUT it needs great deal of consideration and caution of how to implement :
    (1) Three ways communications involving patient , relatives and nursing staff are paramount . But the dialogues are not one off but must be consistent and progressive . This is time consuming and this cannot be underestimated . I can see how difficult it is in hospital at the moment when every body is rushing on their feet .And this is certainly NOT better with the so called efficiency saving .( of course, the government will not care about this.)
    (2) the diagnosis of 'dying' can be difficult in times . Any benefit of doubts should go back to the patient and family. Of course , majority of times , we get that right and it is unlikely one would have to reverse the decision .But it is not invariably true all the time . Nothing is in medicine.
    (3) Leadership is important in making the decision after co-ordinating all parties( patient , family , doctors, nurses/nursing staff/carers)
    As we discussed in Liverpool LMC last and this year on several occasions , the name LCP would have to be dropped to ,more or less ,alleviate people's anxiety . Media is so often unfair in make judgement but if it provides the channel for some patients to express their ' unhappy' stories , we have to listen . Otherwise , what is the difference between us and the bureaucrats behind the Staffordshire scandal?
    Sadly, Liverpool needs to re-establish reputation by one getting rid of the name LCP and two Luis Suarez for LFC.........

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  • I think the Daily Mail should run the health service...after all they are very talented and smarter than anybody else. Let them commission services and design pathways. Call them "The Daily Mail" pathways......and then...the icing on the cake....let them take all the ******* blame and **** *** and leave us all alone.

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  • The fundamental flaw at the heart of any EoL pathway is the assumption that you can somehow recognise when someone has reached end of life.You cannot.You rely on a hunch knowing full well that you may well be wrong and that one "error" is all that takes to blow your entire trust with the patient and the family.To add petrol to fire you then begin to incentivise the system under the guise of "good medical practice" turning it into a tick box exercise.I would rather have the resources go into expanding the palliative care services.

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  • Any guidance, pathways, recommendations, suggestions, will never fit every single person out there. If an experienced clinician is allowed to utilize his common sense, supplemented by the guideline, patient care will improve.

    But in increasingly accusatory and litigious society, "common sense" equals risk. The prosecution will ask why didn't the nt so good doctor follow the national guidance? It's hard to dismiss it in an artificial environment of the court room when all you've got is your clinical judgement and common sense when the evidence s stacked against you.

    So, we end up doing what is safe (for s, not the patient), rather that what is best for the patient. British public, DoH, GMC and last but not least, Daily Wail must shoulder the responsibility of this!

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  • Evidence based medicine will never be able to tell you what to do with that particular patient sitting infront of you at that time.EBM applies to groups of people not to individuals.Its only useful in 2 situations:
    1: you're a policy maker and have to decide between a public policy A and public policy B.
    2.In casting doubt on non tested established practice.

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  • Despite all the emotive criticism (was any of that 'evidence based'?) the LCP revolutionised the standard of terminal care in GP when first introduced. I'm old enough to remember the 'good' old days of ad hoc (in modern parlance 'tailored') terminal care and in many cases it was very poor. The Daily Mail, god help it, wouldn't want a return to that!!

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  • i for one am quite happy. Are we all not professionals and can we not do the job properly. I am sure most us were doing it properly before this tick box culture came in. The amount of communication between HCPs has got worse since this came in. As for patients if it is ticked it is right. Patients are humans and not machines if this is wrong give taht culture should end and the lead professional, Gp or palliative care nurse should decide on an idividual basis and not follw like an alogrithm monkey

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  • I would like healthcare providers to remember that our primary purpose is to take care of vulnerable people in a respectful and compassionate manner. That is why doctors are valued and paid highly, relative to most other members of society.
    It is regrettable, therefore, that so much of the LCP debate has consisted of doctors bristling like bantam cocks in defence of their territory, insisting that they knew best.
    Any objective analysis of the LCP protocol would begin by observing that there was never any rigorous evidential base for its use: no RCTs were done. There was some positive anecdotal evidence, but naturally, people whose patients were less than appreciative, and who had the obstinate temerity to keep on begging for water as they died, weren't going to report that. The BMJ survey showed that junior doctors were far more confident than their senior colleagues that they could accurately predict how soon a patient's death would come. The joint RCP/Hospice study revealed that in many cases, there had been no informed consent on the part of patients who were competent to give it, or on the part of relatives if the patients were beyond asking. The CQUIN payments looked abhorrent to some troubled relatives, who felt that hospitals were being paid to usher the expensive and troublesome elderly apace out of the world.

    Personally, I would like to leave the world using some version of the LCP, to be left to die in peace and without pain. (Preferably, too, with a kind person holding my hand, and having some kind of psychological or spiritual revelation of their own as they shared in the profound experience of dying, but I shan't hold my breath for that.)
    The Review has, in my opinion, made some commonsense proposals to eliminate the abuses of LCP delivery, and restore it to something closer to ideal functioning. But it's a shame that some doctors have to be dragged kicking and screaming towards that end, and as the editorial notes, arrogance leading to the dismissal of service users' concerns contributes a great deal to that attitude, and to the patients' loss of trust.

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