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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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