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Scrapping end of life care pathway was 'too extreme'

Axing the controversial Liverpool Care Pathway (LCP) was “too extreme” a measure, a medical ethics expert has argued in a leading journal.

The decision to scrap the end of life care pathway, following a wave of bad publicity last year, has been dubbed “peculiar” by ethicist Dr Anthony Wrigley from the Centre for Professional Ethics at Keele University.

Writing in the Journal of Medical Ethics, Dr Wrigley said Britain was ranked as having the best end of life care in the world before the LCP was axed.

“The Neuberger Review has taken us both one step closer and one step further away from the goal of achieving the highest quality end of life care”

Anthony Wrigley

He said that the recent review into the LCP highlighted some cases of inadequate implementation of the care regime. But he said scrapping the measure on the basis of some poor use was like prohibiting the use of morphine because some do not know how to implement it properly.

In July last year the government announced that the measure would no longer be used, after an independent review concluded doctors had used the LCP “as an excuse for poor-quality care”.

The review panel, chaired by crossbench peer Baroness Neuberger, said they were “shocked” and “upset” at some of the “distressing” cases of appalling care.

Patients were left on the pathway for weeks without any review and some patients’ families were even shouted at by nurses for giving them water.

In response, care and support minister Norman Lamb ordered all NHS hospitals to undertake reviews of care given to dying patients.

He also ordered hospital bosses to ensure that in the future every patient has a named senior clinician responsible for their care in their final hours and days of life. Financial incentives to put people on the regime would also be scrapped, Mr Lamb added.

Norman Lamb

Norman Lamb

But Dr Wrigley said the conclusion of the Neuberger Review were “questionable”.

“What seems to be far too extreme, however, is the recommendation by the Neuberger Review that on these grounds the LCP should be phased out,” he wrote.

“One reason why this seems too extreme is that end of life care in the UK is of a quality that is world-leading, recently being ranked as having the best overall palliative care in the world.

“Moreover, one of Neuberger Review’s conclusions was that: ‘In the right hands, the Liverpool Care Pathway can provide a model of good practice for the last days or hours of life for many patients… But it is clear that, in the wrong hands, the LCP has been used as an excuse for poor quality care.’

“However, to recommend from this position that the LCP be phased out is to make a seemingly invalid inference.

Keele

Anthony Wrigley

“By analogy, one might construct a similar argument for many different treatments by claiming that, for example, the use of morphine should be phased out as a painkiller in medicine because its correct use is beneficial but some people incorrectly use it.”

He added: “The Neuberger Review has taken us both one step closer and one step further away from the goal of achieving the highest quality end of life care.

“It has taken us closer by helping to break a long-standing taboo that end of life issues are not widely and openly discussed, by highlighting reasons why there are failings in providing high quality care that are very entrenched and go beyond the failure to properly implement a particular approach, and by calling for more emphasis to be placed on this area in terms of training, support and development.

“It has also taken us a step further away by calling for the phasing out of a care pathway that is widely held to be an example of the very best approach to palliative care.”

Readers' comments (43)

  • Having helped to care for my mum, who was dying from Cardiac Failure, this carepathway was an absolute godsend. Without it we as a family along with home care and NHS nurses could not have managed her needs and her ultimate death with such dignity and kindness.

    This pathway was important for the whole care team including the family.

    Please bring it back, babies and bathwater reaction is my view!

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  • michael stone

    I'll be trying to track down Dr Wrigley's e-mail address.

    There was a basic problem with the LCP, in that in far too many instances clinicians were 'fitting patients to the LCP' rather than [correctly] using the LCP 'as an aid to correct behaviour'. This was clearly exacerbated, by (as Dr Wrigley has pointed out, and as I myself have pointed out on the BMJ website) 'a long-standing taboo that end of life issues are not widely and openly discussed', and also by a widespread incorrect understanding/interpretion of the Mental Capacity Act, and in particular of decision making while patients are mentally incapable.

    I agree, that there is a significant concern that end-of-life care might become worse after the LCP has been discarded: however, I also strongly dislike ANY 'approach to EoL' which can lose (as the [implementation of the] LCP clearly at times did, 'the patient is an individual, and not merely a 'clinical situation''.

    If TRAINING and UNDERSTANDING were good enough, then you wouldn't need 'the LCP' or anything equivalent to it - and if training and understanding are inadequate, things like the LCP are open to being misused.

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  • michael stone

    I've just downloaded the full paper - no problem with 'finding' dr Wrigley's e-mail address, as he includes it. Also, quite a bit to read, before I send an e-mail to him: I think we will agree about a lot, but I'm not sure if he will agree with me about decision-making.

    Anonymous | 22-May-2014 2:02 pm

    I don't understand why you think the LCP - as opposed to legal, decent, humane and individualised care and behaviour when patients are dying - is the requirement ?

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  • If it is to extreme to have it scrapped then why before the Nueberger review not recognise or follow the LCP and still do not.

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  • (Corection)
    If it is to extreme to scrap the LCP then why
    did some hospitalsl not recognise nor follow the LCP even before the Nuerberger report and still to this day do not recognise or follow the LCP.

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  • looks like they screwed up the headline!

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  • michael stone | 22-May-2014 2:21 pm
    once again you have not the faintest clue what you are talking about! I doubt you have the experience in caring for hundreds of terminally ill hospitalised patients in various different clinical settings such as medical, surgical, ICU, pediatrics, gerontology and various other specialties.

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  • As a champion nurse for the LcP I have found it a very useful tool in providing essential care at the end of life. It allows the nurse to follow guidelines and provided the best most appropriate care ensuring that nothing is missed or left in covered. It is regularly scrutinised to ensure that proper care is being provided appropriately tailored to that particular patient. As health professionals we would be losing an essential tool in providing the best end of life care.

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  • This article is spot on. The LCP model had only positive effects when practised in my ward which is acute medicine of the elderly based. There seemed to be a lot of misunderstanding from the general public, but if used correctly it is the most ethical way to treat a palliatively unwell patient. They definitely shouldn't have scrapped it, they should have used it as a basis to be worked on and improved.

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  • I agree that scrapping the LCP entirely was a mistake. Personally, I understood it and applied it in it's best context. Michael Stone, although he seems to put an academic rather than an experiential view across about this, he does have a point about education and application being the key components. Perhaps, a review and adaptation followed by education and adequate manpower from Palliative care teams to implement it, would have been better than the present situation of doggy paddle in a busy and stresed NHS. Our Trust just stopped it immediately and we now have written care plans in the hospital notes which get lost in the following entries. It is time consuming for the palliative care team and may not engage the ward staff who are then looking after the patients 24 hours a day. Our palliative care team are wonderful and the care can be excellent but dying patients may not be a daily or even weekly occurance on many hospital wards. Guidance is so important. Our CQC inspection highlighted Palliative care as struggling. Not bad care but over stretched. I think the scrapping of the LCP has contributed. What a slap in the face our excellent team who do offer fantastic support.

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  • My 91 yr old mother was on the LCP, 18 months ago after a sudden terminal diagnosis indicating a matter of hrs/days to live in abject agony. Agony and distress that the locum GP had missed over 3 days and attributed to norovirus but was actually a perforated small intestine. The LCP whilst not in British concept of something that we talk about or acknowledge is, when handled appropriately, a dignified route for a person to end their life with dignity and with pain management. For the family surrounding the individual it is a process that we participated in totally as that is what we wanted, massaging the limbs, administering the mouth washes, talking to her even though unconcous, whilst the morphine was administered via a pump. Whilst difficult to watch a family member die it was with respect and dignity and controlled.

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  • copy of my comments made elsewhere

    "Tragically there is a lot of misunderstanding, fear and even anger surrounding the LCP. Once any flaws are removed from such an instrument it should be a good and useful tool for planning consistent high quality care and for communication between the numerous different members of the care team who are involved, like any other protocol. The problems are not with this instrument itself, designed for optimal care, but in its interpretation and how it was used, misused and even reportedly in some cases abused, and public and staff perceptions of it.

    A thorough understanding and good training for all in its use is essential and which must always be in the best interests of each individual patient and according, where possible to their own wishes, and where appropriate also those of their family. It still requires input of the highest quality into the care of the patient from each and every participating clinician and their support staff as well as excellence in clinical judgement adapting it to patients' needs every single step of the way."


    and in response to somebody who challenges 'my theory'.

    theory is important to inform good practice and also to examine where things can go wrong.

    bearing in mind clinical protocols/guidelines/care plans or pathways or whatever name is chosen for them are the norm for all manner of clinical investigations, diagnostics, treatment and care, and like everything else, the LCP is only as good as the understanding and competence of those using it, and surely in a multidisciplinary team involved with the patient it makes sense to have such plans or pathways to give consistency and clarity to their care, but obviously assuming adequate training and the development of skills in its application are essential.

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  • Response to Joe Denholm.
    My wife was put on the pathway without any discussion with me or the family and we did not find out until months after she died.
    How can you say a lot of misunderstanding when we were not informed.
    wake up and smell the coffee as this sort of practice still goes on.

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  • michael stone

    Anonymous | 22-May-2014 3:58 pm

    Actually the headline is Anthony's position - I sent him an e-mail yesterday and so far I've had two replies from him. He does think that Neuberger went too far in suggesting scrapping the LCP, something I'm not as bothered about because the LCP isn't entirely helpful re my EoL at home concerns.

    It looks as if Anthony and I agree about most things, but Anthony's position is 'when used properly, the LCP leads to world-class behaviour' (which I probably agree with) whereas my position is 'if the LCP guidance was good enough, how come Neuberger found so many cases where the LCP wasn't leading to good care ?' (a question nobody has yet given me a satisfactory answer to).

    Anonymous | 23-May-2014 8:15 am

    The 'standardised record-keeping' of the LCP, seems to be the only thing that separates 'using the LCP' from 'good EoL care from first principles'.

    I do agree, that the replacement being proposed by Bee Wee's Consultation Team (Personal Palliative Care Plans) seems rather 'dangerous' UNLESS clinicians are well-trained - Bee's idea seems to be to only 'give advice about the principles to be followed' for PPCPs, and to NOT 'propose a standardised 'document''. That could lead to good care where staff are relatively expert, but very bad care where expertise is lacking - that is a very real danger !

    Anonymous | 22-May-2014 4:03 pm

    I have no experience at all of caring for even a single terminally-ill patient in any of those settings.

    Now, please tell me - how many terminal patients who were within their own homes, have you cared for ?

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  • michael stone | 23-May-2014 3:05 pm

    your comment has nothing to do with it. they had screwed up the headline which has now been corrected. it originally read '..end of live care ...' rather than '... life ...'.

    as usual you go off on a complete tangent and discuss something else to suit your own ends!

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  • michael stone | 23-May-2014 3:05 pm

    LCP is designed for interdisciplinary teams caring for patients in hospital settings and the discussion here surrounds that! your question is totally irrelevant!

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  • michael stone

    Anonymous | 23-May-2014 4:11 pm

    For your information:

    Text of an e-mail to me (March 2013):

    The Liverpool Care Pathway is simply a framework to guide care in the last days of life. It can be used in any care setting, including at home. This is clear in the LCP's own documentation.

    The sender of that e-mail:

    Tessa Ing
    Deputy Director, Cancer and End of Life Care
    Department of Health

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  • michael stone | 24-May-2014 3:13 p

    thanks. if I ever happen to need your information I will ask for it. I have no idea who any of these people are who keep sending you e-mails.

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  • Anonymous | 24-May-2014 5:13 pm

    michael stone | 24-May-2014 3:13 pm

    Mike explained who sent him that e-mail - so it seems someone hasn't read either the LCP guidance, or Mike's shorter post above. I think 'Deputy Director Cancer and End of Life Care Department of Health' is sufficiently explanatory about who 'that person' is!

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  • Anonymous | 25-May-2014 12:48 pm

    my comment was addressed to MS in the context of his previous comments. as I said to MS if I need information I will ask for it.

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