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New 'approach' to end of life care replaces axed Liverpool pathway

Leading palliative care nurses have welcomed the launch of new approach to caring for dying patients, which is intended to replace the now defunct Liverpool Care Pathway.

The new Priorities for Care, which are backed by government, are designed to ensure the wishes of patients are respected and that care is tailored to their needs.

“It gives nurses a really clear idea of what they should be discussing with patients and their families”

Amanda Cheesley

These guiding principles were drawn up by a group of 21 organisations under the umbrella title of the Leadership Alliance for the Care of Dying People.

It includes the Royal College of Nursing, the Nursing and Midwifery Council, Marie Curie Cancer Care and Macmillan Cancer Support.

The change follows a major review of the Liverpool Care Pathway, which was sparked by intense media scrutiny on the way it was being used in some instances.

The review, led by Baroness Julia Neuberger, uncovered harrowing examples of poor care, and found that in some cases the pathway had become little more than a “tick box exercise”.

The review also highlighted a worrying lack of guidance for nurses on care for the dying and that some shied away from having difficult conversations about end of life care.

“I call on individuals who deliver services for people in the last few days and hours of life to make the Priorities for Care part of their practice”

Jane Cummings

The new guidelines, which form part of a wider report called One Chance to Get it Right, stress the importance of clear and sensitive communication between staff like nurses and the person who is dying, their family and friends.

They spell out the need for individual care plans and place a particular emphasis on ensuring dying patients are helped to eat and drink for as long as they wish to do so.

They also say nurses and others, where appropriate, should help patients and their families plan what they would like to happen long before someone’s final few days.

“They make it clear that care for the dying is integral to nursing care,” said Dee Sissons, director of nursing at Marie Curie, who said she was pleased with all the changes.

“It no longer requires a different set of documents to be started when someone is dying,” she said.

Dee Sissons

Dee Sissons

The RCN described the new approach as a significant step, but said it needed to be closely monitored and evaluated.

“It’s really good because it gives nurses a really clear idea of what they should be discussing with patients and their families, and it is explicit about involving not just family but people who are important to the patient,” said Amanda Cheesley, the RCN’s lead on end of life care and the college’s representative on the alliance. 

Under the Liverpool Care Pathway, it was only necessary to review care for patients nearing the end of life every three days, but the new approach makes it clear this should happen far more regularly.

“Instead people’s care should be reviewed at least every day and probably more often right at the end,” said Ms Cheesley.

“In most settings where people receive good end of life care that will be happening already, but it is very explicit it should happen. The senior person who does that may well be a nurse especially in a community setting or a hospice.”

Amanda Cheesley

Amanda Cheesley

She said it was vital all nurses got the right training to ensure they had the skills and confidence to deliver the best care and to have difficult conversations with patients and families.

While some trusts provided in-house training headed-up by specialist palliative care nurses or teamed up with local hospices that could provide bespoke training for staff, she noted that nurses in the independent sector might find it harder to access these kind of opportunities.

“This is not just about the NHS but providing education and training to anyone providing end of life care, which includes settings like care homes where people can find it difficult to access education and training,” she said.

The RCN will be working with other organisations including the Royal College of GPs and National Council for Palliative Care to look at ways to provide training and support to healthcare professionals, she added.

Meanwhile, Unison argued that efforts to ensure best practice and 24-7 services were being put at risk by lack of funding.

Gail Adams

“The new guidelines provide, if used properly, a dignified end of life journey,” said Unison’s head of nursing Gail Adams.

“However, it has to be properly funded and resourced to ensure it is available to all who need it whether they are cared for in hospital, in a hospice or care home.”

Jane Cummings, the chief nursing officer for England, said the new guidelines promoted a “culture of compassion” that put patients and relatives at the centre of decisions about their care.

Jane Cummings

Jane Cummings

“This is something I am passionate about,” she said.

“I call on individuals who deliver services for people in the last few days and hours of life and their families to make the Priorities for Care part of their practice and to support colleagues in doing the same.

“I will be writing out to all nurses to inform them and raise awareness of the report,” she added.

The documents published yesterday on the NHS Improving Quality website include:

  • One Chance to Get it Right: improving people’s experience of care in the last few days and hours of life.
  • Core commitments from the 21 organisations that made up the Leadership Alliance for the Care of Dying People
  • A summary of engagement that the Alliance carried out on proposed “outcomes and guiding principles”, which have been developed into the Priorities for Care

Readers' comments (16)

  • A rose by any other name.... People abused the LCP to it was axed and now there a new one with a different name to ignore if you choose to.

    The LCP was great if used correctly and this one can be poor if not used correctly. Great use of resources there!!!

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  • While I agree that the LCP was effective when used properly, which it was when used in the patient's home, generally in the last few days of life when the patient had stopped eating or being able to swallow oral medication.
    Its is a positive step that a new 'approach' has been developed but your article mentions hospital, hospice and care homes, no mention of the patient's own home where a lot of palliative care takes place as the patients preferred place of death.

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  • "The LCP was great if used correctly and this one can be poor if not used correctly. Great use of resources there!!!"

    but then the LCP also proved poor if not used correctly!

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  • "One Chance to Get it Right:"

    very much business management and customer care jargon.

    please could we go back to nurses managing nurses and using nursing language to communicate and to convey the message that nurses care about people and patients and not nurses using business language designed largely for managing inanimate objects, and of which much is vacuous totally meaningless and should not be used to refer to the care of human beings, just like 'targets' and 'outcomes' instead of patients and how they respond to treatment and 'lessons will be learned' by way of an apology when no action is taken and the same mistakes repeated!

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  • my first job in the NHS after a 20 year successful career abroad I worked with a couple of nurses who had been given some bed management duties. so impregnated was their language with management speak when discussing their work as nurses on the wards and their bed management role I could hardly understand a word they were talking about.

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  • michael stone

    Carmel Hutchcraft | 27-Jun-2014 7:06 pm

    The 'new advice' is intended to apply in all settings - so, yes it applies in patient's own homes.

    It is lengthy, and I only downloaded it yesterday, so I have not worked through it all yet: it is in my opinion better than the earlier stuff [certainly the bits I've already read] although it does contain at least one factual inaccuracy [in a glossary].

    Will 'it work' ? Who knows - it isn't 'the complete answer', and the 'advice' does recognise that better training/understanding is a major requirement.

    I can't really comment any further, until I've read it all through.

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  • How exactly is "nurse language" any better than "management language"? Bad use of language had a tendency to give way to more bad use of language. Nursing jargon is often crammed with stereotypical views about human nature and behaviour. Is it any surprising that more stereotypical language, based on jargon, should eventually substitute for nurse jargon? Management jargon is the new nurse jargon: both are bad, inefficient ways of communicating with real human beings.

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  • michael stone

    Anonymous | 29-Jun-2014 11:42 am

    I couldn't agree more - 'specialist language' often gets in the way of conversations, both between laymen and professionals and also between different types of professional. And if you can't adequately express something using everyday language, then this often indicates that you don't properly understand it. There is very little place for 'jargon' in end-of-life care, except within intra-clinician descriptions of treatments.

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  • " "The LCP was great if used correctly and this one can be poor if not used correctly. "

    "but then the LCP also proved poor if not used correctly!" "

    My point was that both can only be as good as the implementation. Hence the word can, sorry if I didn't make this clear.

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  • Anonymous | 29-Jun-2014 11:42 am

    speak for yourself!

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  • Great news that food and drink included and that training staff, especially students in individual holistic care is on the cards.Tick box exercises are no use. The LCP was not individualised. It was a lazy way to despatch patients quietly!

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  • The side-lined meeting at Congress, on what was to follow LCP did not give any of these five points in end of life care, though they must have ready been prepared and would have been more interesting

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  • The LCP has now been withdrawn from our Trust. However we do not have a new document to replace it or have we had any training on end of life care. We have been told to just make a care plan for the dying patient, without any guidance. This seems much worse than the LCP as some nurse will not have a clue where to start, leaving the patients and their family with extremely poor end of life care.

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  • Amanda Gwyther | 1-Jul-2014 6:36 am

    if this comment is coming from a service run by qualified nurses I find this truly shocking and extremely worrying as it expresses a general attitude of learned helplessness which may extend to other areas as well. it is indicates that hc professionals have been made so dependent on guidelines that they are lost without them and unable, as autonomous professionals, to treat patients as individuals rather and assess and attend to their personal needs as there history unfolds rather than classifying them and subjecting them to stereotypical type care.

    This should be taken as an example to inform better education and training if there is really a shortfall in this area.

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  • michael stone

    Amanda Gwyther | 1-Jul-2014 6:36 am

    Section 57 of 'One Chance ...' covers that issue - there are dangers to the approach chosen [of leaving clinicians to get it right locally] but 'you should be thinking it out' has got to have some advantages:

    57. In developing its programme of action in response to the report by the independent panel, the alliance has spent considerable time debating the pros and cons of developing either a single, recommended set of support materials, or a process for endorsing such products. This would save organisations having to develop their own materials and potentially ‘re-invent the wheel’.

    However, one of the key issues with the LCP was the way in which some organisations and health and care staff came to regard it as an end in itself, rather than using it to pro-actively engage with the needs of individual patients and their families. Alliance members therefore consider that a key part of ensuring effective care for all people in the last few days and hours of life is that organisations work out for themselves, using the Priorities for Care and the supporting documents, how they can deliver the best outcomes for dying people and their families, bearing in mind their own particular circumstances.

    The alliance is also very conscious of the fact that in some cases, the effectiveness
    of different support materials will depend on the setting in which care for the dying
    person takes place.

    Anonymous | 30-Jun-2014 8:57 pm

    On the issue of food and drink, if you read the stuff properly you will discover that it does say this on page 89 (this point could be missed if you only read some earlier sections of One Chance):

    11. If a dying person makes an informed choice to eat or drink, even if they are deemed to be at risk of aspiration, this must be respected.

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  • I nursed for more than 40 years and am now retired.

    As the years tick by and I read statements as above I become, not only, despondent but quite terrified of the dying process when my turn comes. Please let me be dead before I hit the floor.

    A lot has changed in nursing and a lot for the better. But I do despair when it appears a nurse cannot do anything except follow written guidlines and tick boxes.

    What on earth are you taught during your university years prior to obtaining a degree that would appear to prepare you for absolutely nothing.

    Awaiting for the full turn of the wheel, please dont let it be too long.

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