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Liverpool Care Pathway: Learn the lessons of history, or be condemned to re-live them

July 21, 2013

Liverpool Care Pathway: RIP to a short and troubled life. Like a new character recruited to rescue an an ailing soap, great hopes were riding on your shoulders – but having failed to turn the tide, you became the object of tabloid vilification and finally, after a heavy trail, you were bumped off in your prime. Now it’s too late, of course, they’re starting to say nice things about you – how you had your good points, how sorely you’ll be missed. What they’re really wondering is – how can we be sure that whoever fills your newly-vacant shoes won’t meet the same fate as you did? And might you come back to haunt us?
Nowadays, people don’t remember (or never knew) what care of the dying was like before we had Liverpool Care Pathway (LCP). There was endless debate and confusion about whether artificial hydration should be maintained in the final phase of life. Years ago, I heard of a ward where there was an unofficial policy of ‘peaceful death for all’ and liberal dosing with Brompton Cocktail to ensure that promise was made good. At the other end of the spectrum, as a very junior student I witnessed a young man dying in agony while his desperate family, powerless to help him, sat at his bedside reading out loud from the Bible.
By basing care on solid research, LCP promised an end to these indignities. One of the more depressing aspects of More Care, Less Pathway, the highly critical review of LCP that was published this week, was the revelation that yet again, what we thought was evidence-based care was actually nothing of the kind. The review concludes that LCP should now be phased out in favour of end of life care plans tailored to the patient’s underlying medical condition. Fair enough.  But how can we be sure that we won’t just end up going round in circles?
In contrast to the Francis Report (which at other points it seems to seek to emulate), More Care, Less Pathway shows a marked eagerness to blame individuals for lapses in care without any concomitant examination of the context in which that care takes place. From paragraph 2.15 for example, we learn that ‘Numerous relatives and carers told the Review panel that, once the decision was made to put the patient on the LCP, doctors and nurses stopped engaging with the dying person’s clinical needs, almost as though these needs were no longer relevant. Some families were left to carry out as much as they could themselves, such as suction for secretions, washing and mouth care’. The review speculates that professionals may rationalise this failure of care (because that’s what it is) as ‘giving relatives or carers time to be with the patient’. Thanks for being so charitable but – let’s be honest – it’s not the whole picture.
Acute wards are busy places and often understaffed. The emphasis is on patient throughout and  the daily challenge is to get through drugs round, observations, handover and documentation without mishaps and more or less on time. When a patient is placed on LCP, they are on a supposedly evidence-based care plan which officially sanctions: no oral medication, no observations, no routine pressure area care and only minimal documentation. The unintended consequence is that for over-worked nurses, LCP patients represent a welcome respite from the onslaught. From there, it’s only a short step to falling off the radar completely, especially when the nurse doesn’t know the patient or family very well. This is categorically not an excuse for poor care but – in some places – it’s almost certainly a contributory factor.
One of the remedies put forward by More Care, Less Pathway is ‘a system-wide, strategic approach to improving care of the dying’ (recommendation 39). This is to be achieved by promoting ‘a coalition of regulatory and professional bodies with NHS England, along with patient groups, setting clear expectations for a high standard of care for dying patients’. Sorry, but this is an interpretation of ‘systems-wide’ that wilfully ignores the most important part of the system and its biggest dilemma: how do you ensure that low-tech care does not get lost inside a culture that, driven by management imperatives, is heading full-tilt in the opposite direction?
Because we’ve been here before. More Care, Less Pathway is far from the first attempt to improve end of life care in the NHS. In 2008, the then-Labour administration produced  End of Life Care Strategy: promoting high quality care for all adults at the end of life, a document which arguably paved the way for the widespread implementation of the LCP throughout the NHS. In many respects, it’s an admirable piece of work: sensitive, inclusive and thorough. It has a lot to say about care integration and co-ordination; possibly doesn’t say enough about leadership. At its heart is a detailed six-step journey through the end-of-life process starting with ‘Discussions as the end of life approaches’ and ending with ‘Care after death’.

But what’s really striking is that many of the problems flagged up by More Care, Less Pathway were already identified within the pages of the earlier document, together with strategies for addressing them. Poor communication, lack of NMC guidance on end-of-life care, the need for more research, appropriate training – talk about re-inventing the wheel…IT’S ALL ALREADY THERE. So while there can never be any excuse for poor care by individual practitioners, it is also legitimate to ask why NHS and Trust managers escape virtually without censure when they were the ones who accorded such low priority to the framework set out in End of Life Care Strategy that just five short years later, we are having to re-visit it. Big time.
And actually, it just got a whole lot worse. End of Life Care Strategy included a whole chapter entitled ‘Death, Dying and Society’. Starting from the premise that ‘there is now much less familiarity with death and dying than in previous centuries’ (para 2.1), it went on to state that ‘The National Council for Palliative Care (NCPC) has agreed to lead a broad based national coalition of organisations…in promoting greater public discussion and awareness of issues involved with death and dying’ (para 2.7). Well, we’ve had that all right. The poor implementation of LCP in some areas meant the tabloids had a field-day with what they inevitably dubbed the ‘Pathway of Death’. Would you like to be the one who has to broach the subject in the current climate?
Thanks in part to this avalanche of adverse publicity, LCP is now so discredited in the public mind that the Review felt it had no choice but to recommend that it be phased out over ‘six to twelve months’. Great. What are we meant to do in until then? On 16th July, NHS England rushed out a ‘helpful’ two-and-a-half page long ‘guidance for doctors and nurses caring for patients in the last days of life’, whose advice amounted to ‘careful how you handle this one’. So it looks it will be left to individual Trusts to work interim arrangements for themselves.
Nurses, meanwhile, are stranded in an unenviable limbo. The NMC’s response to More Care, Less Pathway has so far been even more useless than NHS England’s. It took up a mere four lines and can be summarised as ‘We’re thinking about it. But in the meantime, don’t assume you don’t need to watch your step’. Dear reader, my apologies. I confess I am quite unequal to the task of conveying the inadequacy of this statement. In the new atmosphere of uncertainty about end of life care, how will it now be possible to uphold article 35 of the Code of Professional Conduct (You must deliver care based on the best available evidence or best practice)? Even point four of the preface to the Code (Be open and honest) may be problematic if lack of guidance results in indecision and paralysis. Does the NMC have any understanding of its responsibilities here? At all?
In many ways, the history of LCP has been like the NHS in microcosm: honourable in intent, patchy in execution. But it’s difficult to see how ripping up sensible guidelines replacing them – even if only temporarily – with a free-for-all is going to help anyone. To paraphrase George Santayana – those who fail to learn the lessons of history will be condemned to re-live them. For some people, it’s going to be a long hot summer of awkward conversations.

For More Care, Less Pathway: a review of the Liverpool Care Pathway, see
https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/212450/Liverpool_Care_Pathway.pdf

For the 2008 document, End of Life Care Strategy: promoting high quality care for all adults at the end of life, see
https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/136431/End_of_life_strategy.pdf

For NHS England’s Guidance for doctors and nurses caring for people in the last days of life
see http://www.ncpc.org.uk/sites/default/files/Guidance_for_doctors_and_nurses%20_Liverpool_Care_Pathway.pdf

For the NMC statement, see
http://www.nmc-uk.org/media/Latest-news/NMC-responds-to-the-independent-review-of-the-Liverpool-Care-Pathway/

For the NMC Code of Professional Conduct, see
http://www.nmc-uk.org/Documents/Standards/The-code-A4-20100406.pdf

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