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Public invited to give views on Liverpool Care Pathway

Family members of relatives who have been placed on the Liverpool Care Pathway are being asked to share their experiences of it with an independent review for the government.

The review, announced in November and to be chaired by crossbench peer Baroness Julia Neuberger, will hear evidence from patients, families and health professionals before reporting to ministers and the NHS Commissioning Board this summer.

The LCP - which recommends in some circumstances clinicians withdraw treatment, food and water from sedated patients in their final days - has come under intense scrutiny recently.

Reports suggest that doctors are establishing “death lists” of patients to be put on the pathway. Articles also claim that hospitals might be employing the method to cut costs and save bed spaces.

But clinicians have argued that the pathway has “transformed” end-of-life care, saying it can offer peaceful, pain-free deaths when used properly.

Care and support minister Norman Lamb said: “Experts agree the LCP, if applied properly, can help patients die a dignified and pain-free death.

“But, as we have seen, there have been too many unacceptable cases where patients or their families were ignored or not properly involved in decisions. There have also been reports of food and fluids being denied to people inappropriately.

“It is vital for relatives to have complete confidence in the care that their loved ones are receiving. This is why we want to hear from people with experience of the LCP, where it met the high standards expected and where things went wrong.”

He added: “I urge people to get in touch to share their experiences, so we can ensure that lessons are learned and things put right.”

Claire Henry, director of the National End of Life Care Programme, said: “I am pleased that Baroness Neuberger is giving everyone, from members of the public to health and social care staff, the opportunity to express their thoughts and share their experiences of the Liverpool Care Pathway.

“This review is an opportunity not to be missed for individuals and organisations and I would encourage as many as possible to contribute their experiences, whether good or bad.”

Dr Jane Collins, chief executive of Marie Curie Cancer Care, said: “The Liverpool Care Pathway was developed to spread the hospice model of end-of-life care into hospitals and other healthcare settings but we know from the stories in the media, that not everyone who is terminally ill and dying is getting the high quality care they need  and many are being badly let down.

“We look forward to providing any support and information we can to Baroness Neuberger and the inquiry panel and would urge patients and families with both positive and negative experiences of the Liverpool Care Pathway to come forward and take part.”

Baroness Neuberger has also announced full details of the panel of independent experts she has appointed to run the review:

  • Sarah Waller – a former trust chief nurse and director of human resources: currently leads The King’s Fund’s Enhancing the Healing Environment Programme
  • Lord Khalid Hameed – chair of the Alpha Hospital Group; chair and CEO of the London International Hospital
  • Denise Charlesworth-Smith – has experience of the Liverpool Care Pathway when her father was placed on it
  • Tony Bonser – fund-raiser for Macmillan Cancer Support; North Western Champion for the Dying Matters Consortium
  • The Rt Revd Richard Harries – former Bishop of Oxford
  • Lord Charles Guthrie – chancellor of Liverpool Hope University; chair of both the Hospital of St John and St Elizabeth and St Johns Hospice.
  • Professor Emily Jackson – dean of law at the London School of Economics
  • Dr Dennis Cox – Royal College of General Practitioners
  • David Aaronovitch – columnist for The Times

 

Readers' comments (55)

  • michael stone

    The Nobody | 21-Feb-2013 5:17 pm

    'I also never realised even experienced palliative care specialists can't know when someone's likely to die, it isn't an exact science.'

    Hi Nobody - I must admit that surprised me: I had assumed that your biochemist background would have led you to assume that death could not be predicted with much precision ?

    My feeling on this, is that nobody can do any better than plus or minus about 50% - whatever 'X' is (be it hours, days or years). So if even an expert says 'I think you will die in 2X-time', the expert would not honestly be very surprised by 3X or even 1X (so if the prediction were 'death in 3 days time', then dying a day earlier, or a day or 2 later, would not be any surprise).

    As it happens, that is why VoD protocols that place an emphasis on 'expected death' are so obviously flawed (i.e. the analysis in the PDF I offered to email to you).

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  • The Nobody
    Thanks
    DH Agent
    Proving your ignorance once again. LCP is what we were talking about, not the home. Every time you muddy the waters on here.

    Look at your own answers and you will see how laypeople, whatever their intelligence, frankly lose that ability to think objectively, and why one should be extra cautious of their input.

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  • DH Agent
    One last thing, no nurse withholds oral fluids who can swallow. Or would you prefer we just funnel fluids down and fill their lungs as well as their stomach with fluids.Showing how your limited experience with the dying process really is, and why people like you should be kept as far away from legislation as possible.

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  • Hmm.... Biochemistry as I studied it was clinical pathways - things like the Krebs Cycle. Yes, I vaguely remembered that glucose metabolism changes as a person approaches death (hence their inability to metabolise food, loss of appetite and so on) but I'd forgotten a lot of physiology. Which is what a lot of symptoms hinge on, as redpaddys12 refers to. When I did the EOLC baseline review, I had to read up a lot and used things like the Royal Marsden Nursing Procedures book and so on. No, a specialist can't foretell down to the hour, but there are certain things that are fairly irrevocable. And because relatives don't know all this sort of thing, they may want clinicians to do interventions that are pointless if not downright harmful. It is difficult to explain when people are emotional. I remember another family member being in ITU opposite a chap who had a AAA and was clearly dying, but his family were bringing in flowers and teddy bears. They didn't believe the nursing staff and insisted they should've done "something" to save him - whereas in reality, he'd been kept alive by the technology we have nowadays. Or a colleague who's mum died of an MI and as she rushed into to see her in CCU, the staff slowly turned down the sound on the heart monitor as she'd been in VF in the ambulance. There are things clinicians do for us that are kind rather than cruel, even if we don't understand or appreciate them at the time.

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  • michael stone

    The Nobody | 24-Feb-2013 8:48 pm

    I'll get back when I have time - interesting.

    redpaddys12 | 24-Feb-2013 4:42 pm

    Just to check on your position on this: the LCP is the gold-standard for care of imminent death, but you don't think that applies if patients wish to die at home ?

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  • michael stone

    Red and Nobody,

    All of the survey evidence, suggests that most people (about 60% or so) would prefer to die not in hospital, but at their normal place of residence. That includes care homes, and perhaps hospices, but I’m only going to discuss ‘in their own home’ here.

    If you go to www.dignityincare.org.uk and then go Discuss and debate > ‘The Surveys I made of Dignity in Care Champions’(you might need to click on ‘View all Dignity Champions Discussion Forum threads’), you can download my PDF file describing a few surveys I carried out, and on page 31 I start on the ‘consent to CPR’ one, where the relevant text of part of a paper includes:

    ‘Dementia, dependent status, metastatic cancer and a serum creatinine raised above 133umol/L all predict failure to survive until hospital discharge.’

    Now, I am accused frequently by Red and others of being mono-perspective – I try not to be, but I do go patient > relatives > clinicians > police in my ordering for priorities.

    If I were terminally ill at home, and my choice was to die at home, then provided I had tidied up my life, WHY WOULD I ALLOW CLINICIANS TO TAKE BLOOD SAMPLES SIMPLY TO BE MORE CERTAIN OF HOW NEAR TO DEATH I WAS ?

    Why would I automatically consent to the type of ‘monitoring’ necessary, in order to establish my serum creatinine level ? Why would I consent to being used as human pin cushion, or lab rat, if I knew I was dying soon ?

    So even if in an idealised world clinicians might be able to get more precise in terms of predictions of when I would die, why do clinicians seem to think they will invariably be allowed to behave so intrusively ?!

    Thus, it ISN’T even in principle automatically possible to be at all precise, about when when a patient will die, especially for patients who are in their own homes.

    Before I move on to the consequences of that (bloody obvious !) conclusion, I will include something else from my submission to the LCP review (I fear this will de-format when I post it, as might some other bits I’ve extracted from PDFs):


    Hospital or Home

    If ‘the LCP’ is the gold-standard for EoL care, then it should presumably be
    used both at hospital, and also at home (even if some things would not be
    possible, or would need modification, at home).

    Currently, most clinicians are coming round to the view that DNACPR Forms
    must stay ‘with the patient’ – usually, right at the top of the medical notes.
    This has resulted in the odd situation, that most hospitals have guidance
    which does not state that patients must be informed of ‘clinical’ DNACPR
    decisions – but for patients who are home, if the DNACPR Form is also at
    home and sitting on top of their medical notes, it is effectively impossible to
    not ‘tell the patient/relatives’ of the DNACPR decision.

    Presumably, this will also be true, if the LCP is employed in a home setting.

    It seems to make little sense, to have an objective to allow more patients to die at home, and for the ‘discussion/disclosure’ to be effectively unavoidable for patients who are at home, if hospitals are to have a policy of only optional discussion/disclosure !

    ______________________________________________

    Returning to those who are dying at home, there is also this concept (not properly described, and not properly understood by many people – some of whom really should know better) of ‘expected death’.

    Expected death as it applies to home EoL deaths, is only meaningful if one defines ‘an expected death’ as being one where if death occurs and the GP cannot attend post-mortem, suitably trained district nurses are allowed to verify the death, and arrange for the removal of the body, without involving anyone else. This equates to ‘An expected death is one which the GP has promised to certify in advance’ (expressed simply and without the limited caveats).

    However, we know that the GP cannot say for sure if a patient at home will die in 3 days time or 2 or 4 days time, or in 3 weeks time as opposed to 2 or 4 weeks time – so this ‘I now promise to certify if the patient dies’ is very fuzzy, and subjective across different GPs.

    However, if the patient has not been formally declared to be ‘expected death’, then nurses cannot verify the death alone, and if the GP cannot turn up to decide whether to certify, you end up with the police: and the police behave as if these somewhat early, but almost invariably natural, home EoL deaths are ‘de facto suspicious’. THIS DEEPLY ANGERS ME ! I repeat, that is entirely inappropriate, when the demarcation between ‘expected’ and ‘earlier’ deaths is IMPOSSIBLE to sensibly define, beyond what I have said above.

    Throw in that patients are perfectly entitled to refuse future CPR even if a future arrest is entirely ‘sudden’ (something most clinicians seem unable to grasp as a concept, judging by my lengthy discussion last autumn with a Palliative Consultant) and the current belief, behaviour and guidance for home EoL death is a nightmarish mess, if you happen to be living with the dying person !

    I’m getting a bit grumpy typing the obvious, but I’ll end with a comment for Nobody: was it the tutorial question ‘Mathematically describe the kinetics of the Krebs Cycle, and use your equations to investigate perturbations from the equilibrium state’, that gave you your phobia of maths ?

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  • NHS WHISTLEBLOWER DIARY
    WWW.THECITIZENDEFENCE.COM

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  • Hi Mike. No, my maths allergy was simply because I was rubbish at it. I had dreadful teachers but it was a must do for uni, so I just made sure I got enough marks to get through the A level. I liked biology best.

    The LCP does apply for people wanting to die at home. About 4 or 5 years ago, all the commissioners had to do an EOLC review, and they found the facts you mentioned. The PCT/ CCG will have a report on your local demographics and epidemiology. There was a move to help people die at home if they wish, for enablers like just in case boxes, reducing ambulance activations and so on. I don't think anyone's remotely thinking of taking blood samples to measure things.

    In all seriousness, you obviously know a lot and care passionately about this. Why don't you get involved in your local EOLC commissioning group? Mine is made up of local specialist nurses from the hospice and trust, GPs and a pharmacist. It's multi disciplinary, they have an annual work programme, and the groups are always looking for lay input. Often that comes from the cancer network, but as I'm sure you know, more of those patients end up in a hospice than e.g. with HF. Your input would be used to make a difference locally, and that may be quite fulfilling. A patient or carer's perspective often helps the most to sense check what we all plan out of text books or research papers.

    Either way, thank you for caring!

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  • new to working in the NHS and patients are just left. I do understand the concepts of the end of life care.

    However, needs more supervision and more dignity and patient respect and right to a more dignified death should be more reacted upon.

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  • michael stone

    The Nobody | 25-Feb-2013 10:57 pm

    You raised an interesting question in there (to whom should I be talking ?) which I'll return to in a later post. Perhaps in the forum section, with a pointer for you.

    But for now, a comment and a suggestion.

    The comment - as it happens, yes I do 'understand a lot' about the issues around EoL that are wider than merely clinical, but if you say that too loudly on this website, Red will it seems fall out with you.

    The suggestion, because you raised something about clinicians being more 'objective' around deaths, is there was a very interesting piece on this NT site called 'The death of a dog in the night time'.

    It was, I think, before you joined the site, but I suspect you would find the comments (about 10 or so) interesting, and the page is:

    http://www.nursingtimes.net/nursing-practice/clinical-specialisms/educators/the-death-of-a-dog-in-the-night-time/5026587.article

    As it happens (and I'm not great at maths, either), what I do re EoL is read a bit and then think a lot. As far as I can see, most clinicians read and then remember what they read.

    There is an interesting category of clinicians, who read (the law and/or high-level guidance) then publish guidance about EoL, without 'properly thinking', and many of these people tend to get e-mails from me containing either a critique or some 'challenging questions' (responses range from incomprehension, through 'confusion' {this is too tricky for me - you need to ask 'my boss'} to engagement, depending on the recipient).

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  • michael stone

    I’ve decided to put it here, not in the forum section (because if here, it will appear in the ‘My comments’ list).

    I don’t know how often you have tried to get guidance changed, but your local-level EoLC group, isn’t necessarily my main ‘target’. But I will see if one exists around here, and try to track down an e-maila ddress for it. However, I would like to ask the local district nurses a few questions, but the local PCT refuses to allow me to do this – I had a falling out with my local PCT.

    I want the high-level guidance changing: for my purposes, this is the ‘Joint CPR Guidance’ (the BMA/RCN/RC(UK) one), plus various utterances from the GMC. I e-mail the BMA’s person on the Joint CPR revision group, to pursue that one – and I sometimes send stuff to the GMC.

    Lower down the chain, what influences behaviour on the front line for EoL death at home, is the regions CPR/VoD policy – I tend to send critiques of these, to the relevant regions/authors.

    I also tend to e-mail the authors of other EoL guidance, where it departs from balance, law and logic (the national EoL group and various consultants, usually).

    The interesting point re NT, is that it to an extent allows me to ‘work out what front-line nurses think the law/etc is’ – it is very difficult to get even senior clinicians to clearly defend things they are unsure about (and they are often very confused about certain legal issues), and the less senior the clinician, the harder it is to actually get an answer out of them (they tend to point you at their guidance – hence, if you object to parts of the Joint CPR Guidance {invariably referenced by regional CPR/VoD groups} then you MUST contact the authors of that guidance).

    In general, if you think some piece of guidance is flawed, you have to contact its author(s).

    I also more widely ‘discuss various issues’ with some contacts (such as the paramedic who has been writing the local AS’s EoL guidance: I wish he was more confident {he phoned me for a chat just before last Christmas, and he thinks I’m more expert than he is about the law around dying: I’m slightly more ‘expert’ than he is, but he is much more expert than most clinicians, he is just much too cautious about claiming that !}).

    I also have one comment, of a general nature – it is more fun to argue the toss with experts, firstly because they tend to grasp your points better, but mainly because they put together much better (more interesting) arguments.

    I suspect that responding to consultations and reviews might work, but almost always I stumble across consultations after they have closed. The Neuberger LCP review is an exception, because I sent an e-mail to an address I had found for Baroness Neuberger very quickly, that found its way to the secretariat of the review, and the secretariat happened to be one of my e-mail ‘discussion partners’. So I asked her ‘how would a person like me, submit something’ and she said ‘send it to me’ – so my submission to the LCP review, was not only before the deadline, but before there was a published address for submissions. Unlike now, there was not an e-mail address to send stuff to, on the LCP review webpage originally.

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  • "Peter Saul: Let's Talk About Dying"

    TED Talk

    http://www.ted.com/talks/peter_saul_let_s_talk_about_dying.html

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  • Mike Stone
    Wrong again. All your posts on here are about legislation, nothing to do with dying, or the ideal care for those about to pass. I suggest that you would be better posting on a lawyers website.
    Put it bluntly, more strangers have died in my arms than family members have died in yours.
    You have obsessively read every lawbook regarding EoL care, but, quite frankly, that equates to knowing the full rules of golf without knowing how to play.
    The reason why most won't give you the time of day on your crusade is that we all work in areas where lawyers have already decided on the legal aspects of any policy and where it fits in the confines of law.
    You need to justify the panel on this Mike, nowt else!

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  • michael stone

    This was on page 4 of the DT today, but I'm not sure if the question asked was precise enough or not (you need to know whether or not the patient was mentally incapable and section 4 of the MCA is being considered, or whether the patient had 'consented' to the 'LCP'):

    ONE in five doctors is ambivalent or hostile to always telling families that they are putting a patient on the Liverpool Care Pathway, according to a survey.

    Norman Lamb, the care minister, has said it is "unacceptable" not to do so. But an anonymous survey of nearly 600 doctors involved in end-of-life care, by the British Medical journal and Channel 4, found that many disagreed.

    Nine in 10 doctors who used the pathway thought it represented "best practice", and the same proportion of senior palliative care doctors would choose it for themselves. Half said that patients and relations had asked them not to use it.

    But almost a fifth of 185 palliative care consultants who answered, failed to agree that the decision should always be discussed with a patient's relation or carer.

    Overall, almost a quarter of the survey respondents failed to agree with the statement.

    redpaddys12 | 28-Feb-2013 7:02 pm

    As it happens, I DON'T 'read law books' - I read the Mental Capacity Act, from the perspective of a patient or relative.

    As for your comment:

    'The reason why most won't give you the time of day on your crusade is that we all work in areas where lawyers have already decided on the legal aspects of any policy and where it fits in the confines of law.'

    what you mean is you think Trust Lawyers (who are representing the Trust) agree with certain dubious clinical positions - that is indeed the debate.

    This is about communication, who makes what decisions, and patient self-determination: the efficacy of palliative treatments I'll happily leave to you lot, but I won't have clinicians making decisions which legally are not theirs to make, and denying patient self-determination by doing that !


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  • redpaddys12 | 28-Feb-2013 7:02 pm

    I agree.

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  • Yes But

    redpaddys12 | 28-Feb-2013 7:02 pm

    You commented to Mike - so I assume you must think this has a point:

    'Put it bluntly, more strangers have died in my arms than family members have died in yours.'

    Isn't it the experience of having the first person you are really close to dying, and perhaps one or two more deaths of loved ones to discover how consistent your feelings are, that teaches you the lessons ? In my opinion Mike has adequate experience to make him informed - the big gap is between those who have never been closely involved with the death of a loved one, and those who have experienced that at least once.

    Anonymous | 1-Mar-2013 5:11 pm

    I don't agree.

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  • Yes But | 2-Mar-2013 1:23 pm

    in that case, let's agree to disagree!

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  • michael stone

    Redpaddys

    Dignity in Care, has finally (after I sent them a hurry-up e-mail) approved my file, which is the submission I made to this LCP review, and it can now be downloaded from their website (anyone can download stuff - no registration required).

    If you think I don't know anything about the issues, I'm quite happy for you to send your own views to the LCP Review, including a critique of my submission.

    To download my submission, you go:

    www.dignityincare.org.uk

    Discuss and debate

    and then find 'A Submission to the Independent Review of Liverpool Care .' in the discussions (you might need to click on a button to reveal this, if it isn't one of the 5 most recently-active discussions.

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  • Anonymous

    Channel 4's 'Dispatches' is doing the LCP, apaprently as 'a death pathway', tonight at 8pm.

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  • Mike Stone
    I know fully what I mean Mike. Policies and procedures in hospitals are set up to comply with law, by lawyers, to fit in with agreed frameworks.
    Become a Dr or nurse, and see you change those 'dubious' clinical decisions. What is it about a little knowledge being a dangerous thing? I will quite happily e-mail the commisssion and tell them of your mental health issues, and ask them to ignore your comments as they are done by a man who quite clearly has a tin-foil hat on.
    Yes But
    Here's something for you, the death of parents makes us sad. Awww. Does that then qualify us to decide on the best care for every death? No, of course not. Extrapolate this to Mike Stone, one death has lead to his fevered crusade, imagine how big his tin-foiled boater would be if he worked in palliative care! Oh, no, it wouldn't be that big because then he would become innured to this, because his life would become impossible. Yet, here he is pontificating on the future of other peoples parents through the skewed perspective of one death to him ( PS, its not his Mum dying that was the problem, or the dignity of her death as painlessly as possible, but the fact that the police and ambulance service didn't believe him when he said that his Mum was to die at home. Absolutely FA to do with the LCP or EoL care. If you were that first responder, would you believe him?)

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