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New framework for action on end of life and palliative care

  • 6 Comments

A new framework on end of life care has been drawn up by a group of statutory health bodies which is hoped will spur clinical commissioning groups and health and well-being boards to make this type of care a priority in local areas.

The National Palliative and End of Life Care Partnership, made up bodies including NHS England, the Association of Adult Social Services, charities and groups representing patients and professionals, has compiled six “ambitions” on how care for those nearing death should be delivered.

The framework – called Ambitions for Palliative and End of Life Care: A national framework for local action 2015-2020 – states these include that each person is seen as an individual, that their comfort and wellbeing is maximised, that their care is coordinated, and that all staff are prepared to care.

“[Clinicians’] skills, and competence must be assured and kept up-to-date, commensurate with their role and level of responsibility”

Ambitions for Palliative and End of Life Care framework

It said “attending to physical comfort, pain and symptom management is the primary obligation of clinicians at this time of a person’s life and their skills, and competence to do so must be assured and kept up-to-date, commensurate with their role and level of responsibility”.

“Decisions about plans for symptom management and comfort measures that have been agreed between the attending clinician and person must be shared as appropriate with relevant others, and reviewed and updated regularly and shared with those providing care,” it added.

The framework also emphasised training for staff. It said to ensure people receive the care they need, “end of life care has to be considered as everybody’s business and all paid carers and clinicians at every level of expertise need to be trained, supported and encouraged to bring a professional ethos to that care”.

“They should know how to listen to people and to help them make decisions. They must be allowed to use their judgement, their values and their authority to ensure that the care is right for the individual and that nothing is allowed to get in the way of that goal,” it added.

The framework identified measures such as personalised care planning and shared electronic records that are needed to realise each of the six ambitions.

It called on CCGs, local authorities and health and wellbeing boards to designate a lead organisation on end of life care coordinate local plans.

“[Staff] must be allowed to use their judgement, their values and their authority to ensure that the care is right for the individual”

Ambitions for Palliative and End of Life Care framework

Professor Bee Wee, national clinical director for end of life care at NHS England, said: “This framework represents a shared vision for the quality of care that people should expect to receive towards the end of their lives, and a shared commitment to help local decision makers, service providers and people to improve the services in their area.”

The framework is an attempt to build on the Department of Health’s 2008 Strategy for End of Life Care.

It follows a major review in 2013, led by Baroness Julia Neuberger, of the now defunct Liverpool Care Pathway, which 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.

Since then, a new government-backed approach to end of life care for clinicians was introduced in 2014.

Earlier this year, an inquiry by the Commons’ health select committee recommended all nurses and clinicians receive tailored training to address the lack of confidence and skills they have in raising end of life issues with patients.

Dr Jane Collins, chief Executive of Marie Curie and co-chair of the National Partnership for End of Life Care, said: “While much progress has been made since the 2008 End of Life Care Strategy, more needs to be done and particularly in service delivery at local level.”

  • 6 Comments

Readers' comments (6)

  • michael stone

    I will certainly comment, after I've read these: I'll be looking at the 'detail' (if I can find any). A very quick glance, suggests the 'ethos' is good.

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  • At ward level non user friendly electronic record systems and the on going failure of of architects and managers to create environments optimised for care and the associated paper work will "get in the way of that goal" ....but onwards and upwards

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  • michael stone

    I've read the shorter of the two documents, and its 'ethos' is good. I am unclear about how it uses 'care/carer' and 'team' [supporting the patient] - does 'carer' include family carers and also nurses and doctors, and does 'team [supporting the patient]' include family carers, and friends and relatives who are supporting the patient, as well as the professionals ?

    I might add the above comment from anonymous, to the e-mail I'm about to send asking 'Ambitions' to clear up my above question (unless it is answered in the longer document, which I have not yet read).

    'Ambitions' is better than the stuff I was reading ca 2009, when I first became involved in this EoL stuff. Whether it will result in the objective - change as experienced 'at the front line' - is an open question.

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  • michael stone

    I've read it all now - it is in the main 'good but [somewhat] nebulous'. And patients and families, 'feel the actual front-line behaviour' as opposed to 'good intentions from on high'.

    Although there is something rather odd about its glossary definition of Palliative Care, when you combine that definition with something stated inside the piece, or indeed if you only read the definition itself.

    The ambitions are good.

    Nurses might be interested in its section on 'care of the staff involved with end-of-life care' (I can't be certain from memory, but my [perhaps wrong] recollection is that is Ambition 6.

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  • michael stone

    Anonymous | 12-Sep-2015 9:11 am

    No, I want it left to the individual patient to decide - my objection, is nothing to do with 'one-size-fits-all' and has everything to do with clinicians making decisions which are not correctly theirs to make, because they involve things the clinicians do not understand well enough (in essence 'the individuality of the patient').

    However, as for your comment about the problem with the LCP:

    'this is what was so problematic about the LCP, inexperienced staff following the guidelines blindly just so they could tick all the boxes and ultimately ensure their patient fitted into the largest one!'

    WE AGREE 100%.

    http://www.bmj.com/content/350/bmj.h386/rr

    I will copy in what I wrote in that BMJ piece to save people a mouse click - I get enough 'stick' for my actual EoL positions, without throwing in false ones:

    ********************



    It was entirely predictable that the LACDP's 'replacement' for the Liverpool Care Pathway, has confused some healthcare professionals. One reason the LCP was heavily criticised, is that it was [apparently] seen by some HCPs 'as a process into which patients are fitted', whereas good end-of-life care involves fitting the treatment provided to the clinical needs and wider-life requirements of individual patients.

    Two patients in identical clinical situations, might have very different objectives and therefore make different choices about which treatments to accept - people are not all alike, 'we are not tins of baked beans'.

    So the LACDP effectively said that end-of-life care has to be based on offering the best treatments which can be provided, combined with individual patients making their own choices about which offered treatments to accept: add in that 'I have not died before, so I can't really predict my future choices', that often dying patients lose mental capacity and there is inadequate agreement about 'the meaning of the Mental Capacity Act' [even among the apparently limited number of people who have actually read the Act], and that it is even more complicated when patients are dying at home, and it is easy to see why some HCPs 'are uncertain'.

    The LCP seemingly 'failed too often' partly because some of the staff who were using it, had an inadequate understanding of the law for things such as 'best interests decision making', which probably arose because the intention of the LCP, was to try and generate care in non-specialist situations (hospitals) which was more similar to the care in specialist situations (hospices). The LACDP's approach, is in principle better than the LCP was - but, it requires a much deeper understanding in the staff who work with dying patients and with the families and friends of those dying patients.

    As Margaret McCartney has just written in her piece about the prescription of Tamiflu:

    'But guidelines are not always applicable to our patients, and they are meant to guide practice; rarely should they dictate it.'

    I'll stop here: I can either be very brief, or very lengthy, on this particular topic!

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