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Government commits to ‘high quality’ end of life care by 2020

  • 48 Comments

NHS and care professionals will be expected to “reflect” six new commitments in their work surrounding end of life care, the government has announced.

Made in response to an independent review of end of life care, they include having “honest discussions” with patients who are dying, better care planning and more “informed” choices on care.

The Department of Health set out the six commitments yesterday, saying they were intended to end “variation in end of life care across the health system by 2020”. In full, the commitments are:

  • honest discussions between care professionals and dying people
  • dying people making informed choices about their care
  • personalised care plans for all
  • the discussion of personalised care plans with care professionals
  • the involvement of family and carers in dying people’s care
  • a main contact so dying people know who to contact at any time of day

New measures will be developed to ensure local health and care leaders are meeting the standards expected of them, added the government.

It said plans were already underway to ensure experts could provide specialist support on end of life care by acting as a first point of contact for anyone who needed them, as part of urgent and emergency care hubs currently being developed in all local areas.

“Every person nearing the end of their life should expect a good death”

Ben Gummer

The experts would be available 24 hours a day, seven days a week to help with symptom control or deteriorating conditions late at night or at the weekend, as well as clinicians who had questions or needed additional support.

In addition, there will be a “focus” on improving the training for clinicians, including a national plan aimed at sharing best practice among NHS staff, said the DH.

Pilots in Southend and Airedale will be launched to trial new ways to support clinicians to initiate meaningful conversations with dying people about serious illnesses.

Department of Health

DH moves to quicken FtP process and end midwife supervision

Ben Gummer

A potential new role, a care coordinator, will also be tested with the aim of helping patients have more choice and control at end of life.

Meanwhile, innovative community care pilots, including 24/7 specialised nursing services for end of life care, will be tested in a number of areas.

Announcing the measures, health minister Ben Gummer said: “Our commitment is that every person nearing the end of their life should expect a good death: attentive, dignified and compassionate care.

“To do this, we will address poor care where it exists and accelerate improvement across the health and social care system in England,” he said.

The announcement by the DH was made in response to report – called What’s important to me: A review of Choice in End of Life Care – which was published in February 2015.

Published by an independent board chaired by Claire Henry, chief executive of the National Council for Palliative Care, it offered a blueprint for how greater choice in end of life could be achieved.

“I’m pleased by the overall vision set out in the government response”

Claire Henry

Among its recommendations were that each patient should be offered a care coordinator who would be their “first point of contact”, as well as a named senior clinician who would have overall responsibility for their care and their preferences.

In addition, it said there needed to be “more honest and open” communication about end of life issues, with better support for healthcare professionals and increased awareness among the public.

It also called for a new right in the NHS Constitution for everyone to be offered choice in the end of life care, and for these choices and preferences to be recorded in a personal plan of care.

Responding to the DH, Ms Henry said: “I’m pleased by the overall vision set out in the government response. They have clearly acknowledged our report, and taken its recommendations seriously.

“It will be vital that we continue to work with the government to ensure all these commitments are realised as part of all future care delivery,” she said.

However, another report, also published this week, warned that an overload of policy recommendations is making it harder for nurses and other health professionals in England to deliver quality end of life care.

Written by Sheffield Hallam University, the State of the Nations report looked at policy on terminal illness in all four UK nations. It found 76 different government publications relating to the subject had been published in England since 2004.

Meanwhile, draft guidance from the National Institute for Health and Care Excellence has outlined what the best palliative care for children looks like.

The draft emphasises the need for infants, children and young people to be treated as individuals and highlights the importance of children and their families being involved in decisions about care.

  • 48 Comments

Readers' comments (48)

  • michael stone

    I wrote this at home, and I'm copying it in without having read any of the posts more recent than my previous comment (I will read them, but I'm not online at home - I want to post this one and move on to other online stuff, then I'll look at this thread later in the day).

    The fundamental issue, which I am angered by, is that many clinicians seem to consider that 'whether a treatment should be administered' is 'a clinical decision' and falls to be made by clinicians: it IS NOT and DOES NOT. That is a 'consent issue' and all of the law (setting aside for now 'necessity' which is in my view also affected by the MCA - needs 'thrashing out' like many issues) for 'should a treatment be administered or not' is within the Mental Capacity Act, and 'consent' is very clearly NOT 'a decision the clinicians make - they have to ask for consent'.

    HOW THE TREATMENT IS ADMINISTERED is a 'clinical decision' - but 'SHOULD A POTENTIALLY SUCCESSFUL TREATMENT BE ADMINISTERED' is NOT.

    The pre-prepared post:

    This ‘National Conversation about Dying/Death’ was originally called for in the Neuberger Review of the Liverpool Care Pathway, in its Foreword:

    ‘Whatever decisions are made about the LCP (our recommendations are listed on page 52), we believe there needs to be a proper National Conversation about dying. Otherwise doctors and nurses are likely to become the whipping-boys for an inadequate understanding of how we face our final days.’

    The recommendations did not unequivocally deal with that National Conversation – the recommendations were more about ‘increasing understanding of dying and death’.

    When Professor Bee Wee became the lead for End-of-Life at NHS England in 2013, and the Department of Health disbanded its EoL team previously led by Tessa Ing, I sent an e-mail to Bee asking about her new role (and her leading of the LACDP group which was to consider how to replace the LCP). One thing I asked about, was that National Conversation, and in a November 2013 e-mail Bee answered that question with:

    ‘In your email of 8th Oct, you asked if my intention was to try and establish a national conversation about dying (as per Neuberger report) or a national consultation about dying. The answer is the former, though I wouldn’t claim it to be something as grand as a ‘national conversation’.’

    The new DH ‘response/promises’ which the NT article is discussing, ‘Our Commitment to you for end of life care’, includes a foreword by Ben Gummer MP, Parliamentary Under-Secretary of State for Care Quality. He writes in his foreword:

    ‘Providing the opportunity of a good death lies at the heart of this document – our commitment to you for end of life care. It is born of HM Government’s response to the Review of End of Life Care, a report presented in 2015 at the request of Ministers concerned at the state of care for the dying person in our country. The Review was a seminal piece of work, a culmination of many years of research into the components of providing exceptional palliative care to the dying person. I am very grateful to all the partners who contributed to the Review, in particular the End of Life Care Coalition of charities and the Ambitions for End of Life Care Partnership, led by the National Clinical Director for End of Life Care, Professor Bee Wee. We accept the recommendations of the Review, which form the basis of the broader commitment we give in this response.’

    So it isn’t surprising – whether or not anybody has so far worked out how to achieve it – that the support for a National Conversation about Dying and Death, and the necessity of somehow getting that conversation started, is an ongoing theme within reports about EoL.

    You cannot properly join together understanding, beliefs, perspectives and behaviour for end-of-life, if you have nurses talking to nurses, doctors talking to doctors, family carers talking to family carers, etc: you NEED to get everyone talking to everyone.

    And the reason is simple (and it is why ‘go away and talk to other laymen’ so annoys me ‘as a clinical attitude’) – it is this (the final bit, below), as pointed out in a summary note published by the DH about an MCA ‘listening event’ held earlier this year (the summary note can be downloaded from the SCIE website – I’ll not bother with the url, because long urls seem to often fail to work here on NT):

    The National Mental Capacity Forum (NMCF) seeks to bring together professionals from a range of sectors to seek to improve awareness of the rights and responsibilities contained within the Mental Capacity Act (MCA). Further details on the Forum can be found at the following link: http://www.scie.org.uk/mca-directory/forum/

    To ensure the work of the Forum is informed by what really matters to individuals affected by the MCA, the NMCF held a “Listening Event” on 8 February 2016, to hear the experiences – good and bad – of service users, their family members and carers.

    In the words of one contributor:

    “I really do think it is important for patients, family and friends to get their experiences and perspectives to Baroness Finlay’s group, because otherwise professionals end up discussing the problems which seem more important to them: and the most important problems can seem different depending on whether you are a patient, a GP, a nurse or a family member supporting a patient”.

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  • michael stone

    TONY MCKERNAN 13 JULY, 2016 2:37 PM

    'Try to start the discussion and planning early' is a major thrust of recent end-of-life guidance - there is agreement about that.

    The bit 'planning' seems to find problematic, is 'patients can change their minds'.

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  • Stone are you suggesting that every patient going into hospital should discuss an end of life plan? How do you think that would enhance confidence in their care and help their healing? Imagine going under anaesthetic with a belief reinforced by the staff that you may never wake up, which many naturally fear anyway. Not every treatment facility is a mid staffs and some, strange as it may seem to you, do manage to get out alive. I find your attitudes here quite despicable and once again you are not involved in any sort of care and have no idea what you are telling about. Kindly leave all that concerns professional care to those that do and stop hammering them!

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  • michael stone

    14 JULY, 2016 7:19 PM

    Actually I'm less than totally enthusiastic about 'EoL Plans' - my position is that because dying patients are dying for the first time, they cannot necessarily anticipate their future decisions, so 'dying patients must be allowed to make their own choices in real-time'.

    What I am keen on, is the correct and ongoing application of the law around 'consent' - which means for dying but mentally-capable patients they should consent to any intervention, and it also means that decision-making during mental incapacity becomes very complex indeed (because section 4 of the MCA is complex).

    Professor David Oliver has just written a BMJ piece at:

    http://www.bmj.com/content/354/bmj.i3888

    David seems to think that it helps enormously if patients do discuss EoL (and I know this to be true from e-mails with him, even if it is not obvious in that BMJ piece), and his article does point out:

    'Despite concerted campaigns to improve care in the last year of life and get more people to make advance plans, these opportunities are missed.4 5 Only 4% of 9000 patients in the hospital audit had any form of advance plan made before admission.3'

    I can't work out what 'attitude' of mine you so dislike - please be clear, by explaining what you think 'my attitude' is ?

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  • You comments are totally insignificant despite your low opinion of the NHS and its staff. Strange it may seem to you these are compassionate individuals who give their lives to care for others, putting them and their needs, in the limits of the possible their wishes where they are relevant to their care and treatment, first. Obviously they cannot provide the all the extra services of a five star hotel! Outside the MH act which does not apply to the majority of patients and can be excluded from the present discussion for the sake of simplicity, time and space, staff are bound by their ethical codes of conduct and do not just go and 'attack' their patients as you imply but always, for every single intervention, where the patient or a representative is able to give it, seek informed consent in the form of a signed document right down to an informal exchange of words and explanation for the application every sticking plaster or the administration of an aspirin. Professionalism apart, you don't just approach someone and force something upon them without asking first or without offering reasons. I am sure, or at least hope you wouldn't even do that to a guest in your own home when offering hospitality, on the assumption that you do on occasion show some such generosity! Well, in hc where all care and treatment are concerned there are laws, policies and regularly discussed ethics for professionals to abide by, and apart from the occasional criminal you read about in the press, they all do!

    I would suggest you roll up you sleeves and go and work on the wards but unfortunately it would be a breach of confidentiality and judging by your endless comments, for staff and patients, a hindrance. Now please stick to websites for your sort of commentary and stick to something you understand.

    Apologies for any typos and a hasty comment but no time to read through again and repeatedly correct predictive text errors, having already done so several times!

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  • Stone
    ,David seems to think that it helps enormously if patients do discuss EoL ...'

    Of course it can help and any experienced clinician knows that but patients are human beings and high,ply individual and you cannot categorise people like that and decide what every patient needs. That is where the skill of professionals is important in being aware of those who want a discussion even if they don't, or are afraid to express it, and those who don't want such a discussion, some may be highly sensitive or for any other reason and to do so could cause them more harm than good. You cannot simply impose your own will ipon others as you persistently do here and thank goodness we have professional highly skilled in their work. Michel, it is not a subject you should be constantly trivialising over.

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  • Stone

    '...dying patients must be allowed to make their own choices in real-time'. '

    Once again, you cannot generalise very highly individual human beings no matter what their state of health or Steve of their life. You need experience of a considerable number of patients and of care of the dying as perceptions and perceptively about everything in life change over time, as you should know from your own experience, and even with dying and how patients wish to confront it the goal posts can move and as far as care goes need to be very flexible to accommodate that. Until people are dying they have no idea how it will happen nor how it will feel and their ideas if they are still able to express them, depending on their condition, may be quite different from previously the case ane even a few minutes before. It is an evolving situation for each and every which requires constant vigilance and adaptation and skill. In any form of healthcare and especially at the end of life there is never, and never will be, one side fits sl, please get that into your head and lay it to rest and go and take your discussions elsewhere.

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  • michael stone

    There is finally some near-to-sensible discussion going on - and I'm still being traduced but that doesn't surprise me - but despite the more sense in some of the comments, I had pre-prepared this, and I'm going to post it:

    I'll be sending this to NT by e-mail, and as I approve of transparency, I'm also putting it here.


    Thanks for responding to my comment – as I've posted on NT 'your position is a reasonable one'.

    The 'pity in all of this' (in bullying and name-calling instead of discussion) is that for the article at:

    https://www.nursingtimes.net/news/policies-and-guidance/nurses-must-reflect-new-end-of-life-care-standards/7006217.article?blocktitle=Most-commented&contentID=-1

    the nurse who posted at 7 July, 2016 2:37 pm and also I think at 8 July, 2016 9:16 am, clearly has a good deal of understanding of EoL.

    The end of the second post, is spot-on, with the possible exception of that word 'manage' (I see the role of clinicians in EoL as the provision of clinical expertise and the facilitation of options for patients – I don't like the idea 'that patients should be 'managed' by staff'):

    'End of life is the one certainty facing us all where there is only one chance for those accompanying the individual to endeavour to get it right for each and every individual and it is imperative to 'manage' it well.'

    So it really would be interesting, if that nurse would discuss some of the issues I bang on about on BMJ, for example in my pieces at:

    http://www.bmj.com/content/353/bmj.i2230/rr-7

    http://www.bmj.com/content/352/bmj.i222/rr-0

    http://www.bmj.com/content/352/bmj.i1494/rr-3

    In fact, I think it would be better if nurses in general spent rather more time discussing those questions,

    Best wishes, Mike Stone

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  • michael stone

    15 July, 2016 10:31 am

    'despite your low opinion of the NHS and its staff'

    I do not 'have a low opinion' of NHS staff.

    'Strange it may seem to you these are compassionate individuals who give their lives to care for others'

    I am fully accepting of the compassionate nature of most NHS staff – in my opinion, much more compassionate than I am (and probably also 'better people' than I am).

    'Outside the MH act'

    Yes please – the MHA is seriously problematic where it interacts with EoL: but the MCA is fundamental, and applies to every patient.

    'staff are bound by their ethical codes of conduct'

    I am forever arguing over this one: clinicians often think it goes 'ethics then law' and even most of the rest think it goes 'law then ethics' – I insist it should be 'law then a combination of logic and perspective-balance'.

    'but always, for every single intervention, where the patient or a representative is able to give it, seek informed consent in the form of a signed document right down to an informal exchange of words'

    Only the patient can give consent – there is no part of English law for adult patients which suggests that 'a representative of the patient can give consent'.

    'Well, in hc where all care and treatment are concerned there are laws, policies and regularly discussed ethics for professionals to abide by, and apart from the occasional criminal you read about in the press, they all do! '

    I don't doubt it – but clinicians currently tend to get the law wrong (sorry, but that is true – I keep pointing that out on BMJ).


    15 July, 2016 11:03 am

    'but patients are human beings and high,ply individual and you cannot categorise people like that and decide what every patient needs.'

    That is precisely my point – the inherent danger with 'advance planning' is that there is a possibility of 'fitting the patient into the plan' rather than responding to the changing needs and choices of individual patients. That seems to be where the LCP failed – in some places, instead of thinking of 'planning' for EoL as what is should be (a framework of options which ideally the patient chooses from when decisions become necessary) it seemed to be the case that 'the patients were made to fit into a plan'.

    'That is where the skill of professionals is important in being aware of those who want a discussion even if they don't, or are afraid to express it, and those who don't want such a discussion, some may be highly sensitive or for any other reason and to do so could cause them more harm than good'

    That is far too complex to discuss briefly – but you don't need to be a professional to be aware of that issue.

    'You cannot simply impose your own will ipon others as you persistently do here and thank goodness we have professional highly skilled in their work. Michel, it is not a subject you should be constantly trivialising over. '

    I think you are confusing presenting an analysis with 'imposing will' – and I have NEVER 'trivialised end-of-life' !


    15 July, 2016 11:15 am

    '...dying patients must be allowed to make their own choices in real-time'. '

    Once again, you cannot generalise very highly individual human beings no matter what their state of health or Steve of their life.'

    My only generalisation, is the universality of our 'consent' laws – I'm very forceful on the 'patients are all individuals' issue.

    'with dying and how patients wish to confront it the goal posts can move and as far as care goes need to be very flexible to accommodate that'

    I just stated that, above.

    'Until people are dying they have no idea how it will happen nor how it will feel and their ideas if they are still able to express them, depending on their condition, may be quite different from previously the case ane even a few minutes before'

    Yes, I keep saying that !

    'In any form of healthcare and especially at the end of life there is never, and never will be, one side fits sl, please get that into your head and lay it to rest and go and take your discussions elsewhere.'

    You've traduced my position – one-size-fits-all is precisely what I complain about – so what is inside my head isn't what you claim: and because of that misrepresentation of my position, this is exactly where my discussion needs to be !


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

    This confusion about the LCP's replacement was predictable (title)

    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!

    23 January 2015
    Michael H Stone
    Retired non-clinical
    None
    None Private Individual
    Coventry CV2 4HN

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  • Stone

    Considering your position here your commenting has been treated with tolerance and as often as not apparently ignored judging by the lack of responses to it. Do you believe many actually read your lengthy rambles when they have access to an extensive and more reliable evidence based knowledge base and professional discourse?

    Beyond the username stone there appears to be not one single incidence of name calling and the only bullying is yours, where it is not your place, to express repeated annoyance at professionals for reasons that do not concern you chose the anonymous option. You do not run this site even though you have taken it over and do no more than give an impression of somebody totally deluded with ideas of grandeur far beyond your own importance. I would like this site to revert to its intended purpose of hc professionals having an opportunity to exchange views with one another without you constantly butting in. This has been made very clear to you by a number of posters.

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