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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

    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.

    ___________________________

    Depending on the decision, not getting permission from the patient could well be an assault in some situations - and in the more complex circumstance of mentally-incapable patients, not correctly applying section 4 of the Mental Capacity Act, which does seem to require quite wide lay involvement usually, in my view is potentially legally very dubious.

    I'm pleased this list has appeared, becauser I was wondering who the review's members were going to be (and I sent a submission to the review a few weeks ago, as it happens).

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  • How do people submit a view - does it tell us in there somewhere, because I missed it if it does ?

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  • Poor choice of the people on the panel! As many journalists as palliative care nurses!

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  • michael stone

    redpaddys12 | 19-Feb-2013 3:43 pm

    Red, a major aim of the review, is to work out how the public perceives the LCP - why the press keeps having a go, and why there are so many 'angered bereaved relatives' who complain about their own experience of how the LCP was used re one of their loved ones.

    You need more than clinicians, to get to the bottom of that.

    Anyway, I have conceptual objections to the LCP being 'regarded as a thing' - and I've sent that, with other comments, to the review's secretariat, weeks ago.

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  • http://www.dh.gov.uk/health/2013/01/review-lcp/

    Gives the email address to respond to and info about public meetings.

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  • michael stone

    The Nobody | 19-Feb-2013 9:18 pm

    Thank you Nobody - always good to know how you respond to these things !

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  • michael stone

    I have just looked at the link, and the contact address has been added to the page unless I missed the obvious when I originally looked at a week or two ago - the rest of the text, and its description of the objectives and terms of reference seem very familiar.

    I would encourage people to send in their opinions about the LCP, because I happen to know that the DH does have a GENUINE desire to better understand what professionals believe the LCP is, whether guidance about it is good enough, why so many relatives are distressed by experiences of the LCP, etc.

    But I'm not posting the contact address, because it makes sense for people to read the page it is on which the Nobody pointed at:

    http://www.dh.gov.uk/health/2013/01/review-lcp/

    first. It isn't very long.

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  • I think we have complicated things by giving dying the title End Of LIfe.It's surely a time in a persons life that could do without any confusion.and the words death and dying should not be removed.We need more openness,more human responses,more honesty.

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  • Julie Laidlaw | 20-Feb-2013 4:41 pm

    I agree with you. the whole normal, and natural process of dying seems to have become totally embroiled in a mesh of legal red tape causing doubt, confusion, stress and even feelings of guilt for all of those involved and at a time when families should be allowed the space and peace to grieve with only the support that they may need.

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  • why can't people accept death anymore, it is going to happen to all of us.

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  • Because we don't understand it and it's frightening.
    I'm just a manager, not a nurse (sorry) but almost everything about my dad's long lingering death of his metastases was new to me or a shock or just almost too awful to think about. I didn't understand cathexia or break through cancer pain or what a PEG feed was or a million other things. I found the succession of staff confusing. The rest of my family couldn't deal with it either so I was "it". I can't tell you how I felt when they told me he was on the LCP. They might as well have been talking Chinese. Even when he was Cheyne Stoking I was trying to organise a Doro mobile phone for him when he went home.
    I have a PhD in science but to be honest it all went out of the window. I just desperately wanted my nursing colleagues to make him "better". They were brilliant and I'll never forget the care they give him, and one of the reasons I fight for staffing and quality, to try and give what I can back.
    Perhaps it's a parent child thing (in terms of psychology) - we want someone in a uniform to make it go away and we're afraid when you tell us you can't and suspicious of people like me in a suit because we're bean counters cutting beds.
    But my mother told me death wasn't hidden away like it is now when she was my age. So perhaps we do need a debate about death, as a society. Face our fears too.

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  • DH Agent
    Why Aaranovitch? Is it because Christopher Hitchens is dead? The Pathway needs neither romanticizing or sensationalizing. What it does need is the truth telling about it.
    Read the words of 'The Nobody' above, very emotive, but at the heart of it he says that he knew nothing of the process of death. The average layman has a very narrow concept of dying and what it entails. Most of us are introduced to it at an early age from the death of a beloved pet to, as we age, the passing of parents and grandparents. Some of these will be gentle, some horrific and some a blessed relief to all.
    Now, the thing is, as time passes we all go to more and more funerals, but how many times does the average person physically witness another persons demise? Throughout their life? 5? 10?
    Clinicians may witness thousands during their career, from the gentle last expiation of a 100 year old surrounded by their loved ones, to the 17 year old boy with a stab wound to the chest having open heart surgery in an ambulance, to a 32 year old woman whose oesophageal varicies give way to such an extent that their entire blood supply is plastered all over the walls ceiling and staff in their cubicle. THAT'S why there should be more clinicians on the panel, because they are people who can see things without prejudice, or malice or overarching love. They are objective, not maudlin, sentimental or superstitious.
    You like to talk the talk on EoL care, have you read the pathway? If you have you will realize that its ultimate aim is towards the patient, and the patient is paramount.
    If News International wants to lend its expertise to the debate, then it could do no better than to publish it as a supplement in the weekend edition of every filthy rag it prints. Let the people read it, they can make up their own minds rather than the lies and half-truths they currently digest.

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  • Yes But

    Julie Laidlaw | 20-Feb-2013 4:41 pm

    The problem is that although usually the LCP should end in death, it is possible that for a very few patients recovery will unexpectedly occur.

    So when you mention 'death' you get a furore from places such as the Mail.

    Anyway, in reality the provision should simply be proper care of the patient, and priorities change as death becomes likely - but it isn't obvious why a 'name' needs attaching to that concept, and 'pathway' appears to be too deterministic: calling it 'a pathway' seems to introduce an elment of pre-determination of the choices the dying patient might make as an individual.

    This is being discussed quite a lot at present - hence the review, although the scope of the review is not unrestricted (see its terms of reference and related info on the page linked to above).

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  • michael stone

    Redpaddys and Nobody – I’ll start with Red.

    You have ‘set me off’, Red.

    In no particular order (and I have looked at the LCP, but that does not resolve a lot of issues – I have also e-mailed the LCP team in the past):

    1) I am almost 60, I was holding my father when he died, and I was alone with my comatose mother when she died. I also found a housebound cousin dead. Those are my only ‘close encounters with death’ – I think you are probably over-estimating how much contact most people have with death.

    2) I agree that only clinicians and some police have a lot of experience of death, but I disagree about this making them ‘objective’. What it does, is give them some sort of ideas about ‘what a death should look like’ – in the case of the police, who are deliberately kept away from anticipated deaths, this makes their involvement in some EoL home deaths very unsatisfactory (because they have got the wrong type of prior experience).

    However, death is not essentially objective – most of it is SUBJECTIVE: how dying is experienced by the dying person, and by those close to him. I do not believe, because the death of my own loved ones significantly affected me (and I am not hugely empathic) that clinicians who see ‘lots of deaths’ could do other than ‘become detached’: the only alternative, would be to become totally wrecked psychologically, I suspect.

    Before moving on, I will insert something from my submission to the LCP review, to make this point clear:

    ‘I am a layman, who became involved in a wide-ranging discussion of End-of-
    Life behaviour and beliefs, as a consequence of my mother’s death at home
    in late 2008. I tend to examine things from the perspective of live-with
    relatives and patients, with a concentration on EoL death within the patient’s
    own home.

    I am not primarily interested in the LCP, as CPR decision making is more
    relevant to my issues: however, there are common factors between the non
    discussion of placing patients on the LCP, and the non discussion that
    patients have been made ‘not for resuscitation’.

    My general approach to all end-of-life analyses, is to attempt to promote more
    balanced (perspective-independent) and coherent behaviour both across
    different professions, and along timelines as experienced by lay persons
    when they interact with a series of different professionals. In that vein, my
    comments regarding the LCP follow.’

    3) As the patient or a loved one, I WOULD like objective answers from the clinical profession to certain questions, such as this one which I recently posted in the forum section:

    ‘There was a recent piece in the Daily Telegraph about end-of-life in France, and it included this snippet of information:

    ‘A 2005 law already authorises doctors to administer pain-killing drugs at levels they know will, as a secondary effect, shorten a patient's life.’

    I would like to know whether people (clinicians and laymen) believe that this is currently also legal within England, Wales, Scotland and Northern Ireland, or do people consider that any treatment where the clinician could reasonably conclude it would probably hasten death, is illegal in these countries ?’


    I want to know, whether clinicians are willing to relieve MY pain to MY satisfaction – the patient is the person who suffers the immediate potential distress of dying, and yet getting answers to that question from clinicians is nigh on impossible ! If you are experts, and ‘transparent’, the answers to such questions should be in the public domain, and generally agreed across the clinical professions.

    4) There is a deep connection between the LCP and my main concerns re end-of-life behaviour, in that a major issue is decision making. Again, extracted from my submission to the LCP:

    ‘Very few people are very good at handling uncertainty, and clinicians are
    always trying to improve the accuracy of clinical prognoses. There are also
    wider-life uncertainties, involved in decisions which are in anticipation of the
    future.

    But, it is important to place these uncertainties correctly: they form part of the
    things the decision-maker considers, in reaching his or her decision. So,
    returning to section 14 of that GMC guidance, clinical uncertainties are to be
    described as such, within the information about clinical outcomes (14(b)) that
    mentally-capable patients use in deciding which, if any, treatments to accept
    (14(c)). It is important to note, that this is not ‘shared decision making’: the
    patient makes the decision, the clinicians provide clinical information:

    (b) The doctor uses specialist knowledge and experience and clinical
    judgement, and the patient’s views and understanding of their
    condition, to identify which investigations or treatments are clinically
    appropriate and likely to result in overall benefit for the patient. The
    doctor explains the options to the patient, setting out the potential
    benefits, burdens and risks of each option. The doctor may recommend
    a particular option which they believe to be best for the patient, but
    they must not put pressure on the patient to accept their advice.

    (c) The patient weighs up the potential benefits, burdens and risks of the
    various options as well as any non-clinical issues that are relevant to
    them. The patient decides whether to accept any of the options and, if
    so, which. They also have the right to accept or refuse an option for a
    reason that may seem irrational to the doctor or for no reason at all.

    5) A really major issue with the LCP, is placing patients on it without the proper discussion with patients or ‘family and friends’. Again from my submission:

    ‘I think calling ‘the overall care’ ‘being on the Liverpool Care Pathway’ is
    conceptually confusing – all people are doing, are changing behaviour when
    the patient’s situation changes (from being cured, to dying, in essence).
    There are clinically-proven methods of providing palliation, but these need not
    only be involved in the care of the terminally ill: likewise, a patient is entitled to
    refuse some active interventions but accept others (it is reasonable in some
    situations, to accept all types of active intervention except for a blanket refusal
    of attempted CPR). The widespread confusion/conflation between clinical
    effectiveness, and a patient’s right to refuse interventions (a right which is
    ongoing and applies to each individual intervention), is probably one reason
    why the communication your webpage stresses as being so important, does
    not always occur – if every aspect of ‘the LCP’ were thought of as being a
    separate ‘intervention’, and it were understood that these individual interventions required patient consent, then surely clinicians would be more-or- less forced to talk to patients (or for mentally-incapable patients, ‘relatives’) ?

    I’m quitting that one here, because I hope all of my submission will be downloadable (if the file ever gets approval) on the Dignity in Care website.


    Nobody – I think it is often ‘horrible’ when someone you love is dying, and very rarely less than ‘not nice’.

    I have argued the toss with the Head of EoL Care at the DH over the ‘concept’ of ‘Good Death Theory’ (also in the Discuss and Debate section at Dignity in care), basically because I do not like the ‘label’. I see almost no deaths as ‘good’ if you are the bereaved, and I see what clinicians should be doing as ‘making the death less bad’. This is the kind of ‘perception issue’ that tends to ‘get me into arguments’, but the first person to respond was interesting:

    ‘Paul Kellard
    You're quiet right there's no such thing as a good death!

    Especially to the loved ones of the person who has died. They might think it was a release from pain and discomfort, but it's never good to them as there's always something in life that they wish could have happened.
    Having been on both sides, that is personal & professional, I see that there is comfort in calling it a good death, but the reality is there's no such thing.’


    PS – I’m not going to discuss the deficiencies of Advance Decisions and of CPR/VoD protocols here, but they they do impinge on dying in a general way, and those problems also demonstrate the same type of issue as one encounters re the LCP.


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  • michael stone

    Sorry about the deformatting in the comment above - it looked okay when I pasted it into the comment box (very annoying !).

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  • the media need to present facts to the public far more clearly and honestly and we need to pay far more attention to the public perception and their understanding and interpretation of what they see, hear and read as well as the serious effects of the 'Chinese Whispers Syndrome' of which everyone of us is guilty at some time.

    a recent and example given by Sir Paul Nurse, was that people are up in arms about genetic modified food as they do not want to eat food with genes in it!

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  • redpaddys12 | 21-Feb-2013 2:13 am

    Thank you for your reply, you cut straight to the heart of it. I'd never seen anyone die, and I'm in my 40s. Most nurses have, in their 20s onwards. If there was anything that gives me the drive to cut through as much cr*p as I can to help them with staffing, that's top of my list.
    I also did various service reviews and learnt about some of the physiology and biochemistry behind "with-holding" nutrition (which sounds dreadfully cruel when it's your family) but is so much clearer when you're able to have a calmer conversation. The LCP seems to have a sound clinical basis, but how it's implemented is hard. I also never realised even experienced palliative care specialists can't know when someone's likely to die, it isn't an exact science.
    And completely agree with your point about clinicians on the panel. The rest of us are too emotional. I'm very glad I have nursing colleagues who can take that responsibility and I see my job as getting them the resources they need and giving them the space and support to do their jobs with as little interference as possible.

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  • michael stone

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

    There is a complication you have missed - it isn't a case of clinicians taking responsibility, it is also a situation where the law should be followed, because there is 'some law around dying'. Mainly the Mental Capacity Act - something much misunderstood by many or most clinicians.

    That law is nowhere near as simple, as 'clinicians can make the decisions'.

    The emotional/detached/objective/subjective issues are complications, and various clinicians (the name I seem to recall is The Medical Ethics Alliance) are introducing religious perspectives into essentially legal questions, to add further confusion !

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  • DH Agent-the law is no way clear that clinicians can make decisons, but they do. They tell the patient's relatives that their loved one is not responding to treatment and so TLC is the only help they can give. They may, or may not, be put them on LCP but a "Nil by mouth" sign goes up over the bed-death, then, is imminent. No one can live without fluids. The clinicians DO make the decision, esp in memtally incapacitated cases such as strokes. Quite often a CT Scan has not been done and swollowing test not done either but when relatives ask for water for their thirsty loved one, they are told that they may choke if they give them anything, or as I have witnessed, they are told that it would only prolong the agony! Why is there not frank and openness through out the profession

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  • michael stone

    Anonymous | 23-Feb-2013 11:31 pm

    DH Agent-the law is no way clear that clinicians can make decisons, but they do.
    __________________

    Yep - and I'm bothered about EoL at home, where often the only people who are present when a decision needs to be made, are live-with relatives. There we also get into the absurdity and lack of balance of contemporary post-mortem protocols (arggh !).

    The law for mentally capable patients, dying or otherwise, is clear and based on only 2 principles;

    1) patients can refuse any offered treatment;

    2) clinicians can decide what treatments to offer.

    But stopping a mentally capable patient from drinking a glass of water, seems to be outside the powers of clinicians, however unwise clinicians think it might be.

    For mentally incapable patients, the law gets very complex, but it does NOT simplify to 'clinicians make the decisions' - it comes down to:

    A) If there is a suitably empowered Welfare Attorney, effectively the WA can refuse proposed treatments;

    B) If there is not a WA, everyone involved has got a legal duty to follow section 4 of the Mental Capacity Act, but nobody has actually got anything resembling a true 'legal power'.

    Of course, the LCP is complicated, both in terms of what it actually is, and in terms of how it is discussed/presented, as well as the above legal issues and the pyschological state of relatives etc being complications.

    Your comment:

    Why is there not frank and openness through out the profession

    is one of the things this review will be looking at.

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  • 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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  • Yes But

    redpaddys12 | 6-Mar-2013 1:32 am

    Policies and procedures in hospitals are set up to comply with law, by lawyers, to fit in with agreed frameworks.

    ______________________

    By lawyers WORKING FOR CLINICIANS - and lawyers can be persuaded, to argue both sides of something, can't they !

    '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?)'

    That seems to be Mike's point - which you are missing: how is it ethical to NOT believe what a person living with a dying patient, tells you ? Surely you should need some evidence, before implying that anyone is lying !

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  • michael stone

    redpaddys12 | 6-Mar-2013 1:32 am

    Remember to read my submission to the LCP review, before you 'rubbish' them - you would not wish to appear uninformed, I assume.

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  • Yes But
    'That seems to be Mike's point - which you are missing: how is it ethical to NOT believe what a person living with a dying patient, tells you ? Surely you should need some evidence, before implying that anyone is lying'
    You need to read your last statement again. Put it another way, surely you need some evidence to be sure that the person isn't lying. The burden of proof isn't with the police or ambulance service, and remember, they both have a duty of care, and it isn't towards the relative.

    Mike, you are the only uninformed person on this site!

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  • michael stone

    redpaddys12 | 10-Mar-2013 2:25 am

    Sorry, you seem not to grasped 'innocent until proven guilty' - the burden of proof, is to prove wrong-doing. Not to ASSUME wrong doing, or to assume guilt.

    My senior lecturer who is a nurse, and who has also got a legal qualification, contact, is very clear on this point - you are reversing it, along with many 999 Services' personnel ! I'll search out her explanation, of the point, and post it - for the benefit of 'the uninformed'.

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  • michael stone

    Here is her (see my previous post) admiral explanation of the above point (cut from a pdf so it might deformat on posting):

    The MCA does not ask anyone to prove or disprove the validity of an advance decision. It is not for the health professional to do this – unless there are actions or comments that cause a high index of suspicion and then they refer to the police or coroner; but not at the time of delivering care.
    …………
    In essence health professionals have to work on trust, if we find out after the fact that a relative told an untruth then we should report it to the Coroner who decides whether or not to get involved.
    …………
    This is the academic argument around the MCA in that we do not know whether or not a third party is in actual fact expressing the wishes/beliefs of the patient - we just have to trust that they are. Also a written directive - it is not up to us to prove or disprove the validity of a signature.

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  • DH Agent - as if ! | 10-Mar-2013 12:58 pm

    why can't you take you self serving discussion elsewhere so that the rest of us nurses can comment here, exchange views and inform and advance our own practice on what is important to us without your constant non-professional interruptions. I have a very important professional issue I would like to raise for response by other nurses but can't use this site for this purpose as I know you will but in with your arguments from your own point of view which are irrelevant.

    I respect you seek answers to your problems but it seems you have garnered enough support and sympathy elsewhere by now and you must have understood after all this time that many nurses on here do not wish to pick up and discuss your own personal theme.

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  • Mike Stone
    'It is not for the health professional to do this – unless there are actions or comments that cause a high index of suspicion' - there is your answer Mike. Now what was the topic again?

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  • Mike Stone
    So one nurse is to be believed ( the one who agrees with you, naturally) but the rest make dubious decisions?
    If you knew your Mum was dying, then why on earth did you ring the police and ambulance whilst she was alive? Policemen aren't lawyers, they keep the peace. Paramedics aren't lawyers, they have a duty of care to the sick. To expect either group to have a grasp of what you wish is unlikely. I suggest that you speak to your local police commissioner/ chief superintendant, and to the head of your regional ambulance service BUT NOT US!!

    What kind of library do you post from that is open on a Sunday? Please tell me it will be closed as part of this country going down the toilet? Only kidding! BTW that ain't me as anon above, I only use my nom-de-guerre.

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  • michael stone

    redpaddys12 | 11-Mar-2013 2:36 am

    redpaddys12 | 11-Mar-2013 2:48 am

    First - this 'nurse to be believed' has a legal qualification, and teaches the legal aspects on her university's nursing courses.

    Second - I did NOT call 999 when my mum arrested, I called the GP's Surgery as had been agreed. But the GP had disappeared to Europe (on a Friday) as the start of a long weekend - the receptionist TOL ME to call 999. The complication, was that my mum -who had been terminally comatose for 4 days - happened to die about 45 minutes before I thought the Surgery opeend, so I delayed calling the Surgery for about 40 minutes.

    It gets too complicated to explain, after that ! But I was not at all happy , to effectively be blamed for the absence of things (notes in records) which it was never my responsibilty to record !

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  • michael stone

    redpaddys12 | 11-Mar-2013 2:48 am

    This isn’t the place to explain the events surrounding my mum’s death, which were the reason I got tangled up in this debate. If you want more on that, you will need to download my submission to the LCVP review from the Dignity in Care discussions section (www.dignityincare.org.uk) and e-mail me (an e-mail address is in the submission, at the start).

    I have also nicked some of your words, for a new discussion I’ve just tried to start on DIC – you posted something, that poses an issue I think is very relevant.

    Anonymous | 10-Mar-2013 1:11 pm

    The ‘academic’ part of my brain is struggling with that one: if you have something to say and discuss, then say it – it will either stand up on its own legs, or be easily pushed over by debate. As for ‘non-professional’ – you mean the people who DIDN’T contribute to the disaster at Mid Staffs, presumably: professionals working in isolation from ‘non-professional input’ did marvellously well at Mid Staffs, didn’t they !?

    Similarly, whether I know what I’m waffling on about, or am writing nonsense, has to be judged by analysing the internal validity of what I write – not by simply noting that I am not a clinician !

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