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'The LCP is only as good as the people who use it'

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12 November, 2012

One of the worst examples in recent history was the hysteria whipped up about the MMR jab, on the basis of highly questionable evidence from a tiny sample of children. This evidence has now been utterly discredited, but not before vaccination rates dropped to dangerous levels.

The latest target is the Liverpool Care Pathway, or the pathway to death as the Daily Mail prefers. A torrent of stories about hospitals being bribed to put patients on the LCP, patients being routinely denied food and fluids, or health professionals being too keen put patients on the pathway and refusing to take them off if they show signs of recovery have bounced health secretary Jeremy Hunt into declaring that the revised NHS Constitution will require patients and or families to be involved in end-of-life care decisions.

Anyone who took the time to read less sensationalist sources – or to look at the LCP documentation itself – would see that the pathway is simply a tool to help health professionals to make the last hours of their patients’ lives as peaceful as possible. It is only to be used in patients who are dying, and any who show signs of recovery can be taken off the pathway. Food and fluids are only withdrawn in specific circumstances where this will reduce patient distress, and patients and families are already required to be involved in the decision-making process.

Of course, like any tool, the LCP is only as good as the people who use it, so it is vital that it is implemented by health professionals who understand its principles and purpose, and who stick to the guidance.

Properly used the LCP is a way of providing the best possible care to dying patients and their families. Attacks on the pathway on the basis of instances of improper us, or presenting opinions as facts will simply lead patients, professionals and families to avoid using a tool that has spared countless people distress in their final hours.

Readers' comments (23)

  • Why don't you send this article to the newspapers. Perhaps they should also be invited to attend the training days.

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  • who has suggested that the DM is 'popular press' - it's a horrid paper.

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  • I can fully support your statement, 'The LCP is only as good as the people who use it'. I also support, and endorse Professor Pullicino's claim that the LCP, when inappropriately administered, can hasted death my following account which has been forwarded to the 5 eminent physicians who raised concerns of its use in September 2009.
    My partner entered hospital for a day surgery biopsy on a neck mass that began development in March 2005. At no time had she been judged as terminally ill and certainly not hours away from death.
    As opposed to accompanying me home the Consultant surgeon told me that she suffered post-op respiratory collapse in the recovery room. An emergency Tracheostomy was performed and she was made stable in ICU.
    A week later, she was transferred from ITU to a nursing ward where the biopsy confirmed lung cancer and a discharge plan for home was made for 4th Sept with a referral for further out patient appointments. Post-op surgery notes, of 23rd August, record a follow up out-patient appointment for 5th September.
    But no one can comprehend how just a fortnight following a supposed cancer diagnosis, my Partner passed away at just 63.
    Only upon gaining all medical notes did I discover an undated DNAR notice and the surreptitious administering of a Morphine syringe with Midazolam and Cyclizine.
    Independent medical expert reports confirm the cancer nodules as multiple pulmonary embolisms. No evidence of any anticoagulant therapy is documented.
    As the Trust involved stated, 'we want to listen and learn from complaints'.

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  • Anonymous | 12-Nov-2012 11:04 am

    There is an issue, over whether treatment provided for pain/distress relief can 'hasten death' entirely legally (I see no reason why not) but the LCP claims that nothing which is part of the LCP does this.

    Getting consent, is the answer !

    I have sympathy for your experience - but that is not of much use, is it ?

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  • It is distressing for relatives to watch somebody die after food and water have been withdrawn. I was a nurse of 30+ years experience when it happened to one of my parents and I found it deeply traumatic. There was no pain management offered. Nobody even mentioned LCP then and consent was never discussed with us as a family. I was afraid to leave the bedside and I'm still haunted by the possibility of unexpressed suffering.

    Now I campaign for active euthanasia as a choice. Passive euthanasia makes doctors feel easier in their consciences, but it's not a humane solution for nurses, families or patients.

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  • michael stone

    Anonymous | 14-Nov-2012 9:56 am

    Be careful if you use the word euthanasia.

    I think I support assisted-suicide but only provided the decision is made by the patient - 'euthanasia' has got a long history, of being a decision made by someone who isn't the patient.

    Our laws, get very tricky indeed, if a terminally-ill patient is suffering 'but not dying quickly enough' and the patient him/herself has not explicitly requested very heavy levels of pain-relief and sedation prior to a loss of mental capacity: the complication is section 4(5) of the Mental Capacity Act, clinicians seem very unsure about what that section means legally, and there is 'much fudging' in this area of 'dying'.

    It urgently needs cleaning up.

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  • Michael Whitehead

    Many say that as soon as patients are placed on the LCP, their right to food and fluid intake is withdrawn. This, as suggected in this article, is completely erroneous information.
    If anything,in my experience staff are extremely happy when LCP patients are able to eat and drink, and they are usually persistent in encouraging this till the very end of a patient's life. Where did this information come from? Perhaps it happens in other trusts but it certainly hasn't been the case for the ones I have worked for.
    In fact,in four years of nursing I have never seen an LCP patient who asked for food and fluids and been denied becasue they are on the LCP.

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  • Anon 11.04am
    Multiple pulmonary embolisms are likely the mode of death in your partners case, but where did they originate from is the question. Had they an undiagnosed heart arrythmia, peripheral vascular disease or some clotting disorder? If the original diagnosis was cancer, then why would they need anticoagulation> Was a VTE risk assessment done?
    As for the surreptitious use of opiates and midazolam, these both need presribing by a medic, and in the case of morphine, is kept in a secure area and counted every day ( by a 2 trained nurse process)to keep an accurate record ( any discrepancies of which are immediately called to the attention of the Police) so very much doubt that they were made with no-ones knowledge ( unfortunately I don't think that you are entitled to know, which is a difference).

    Parts of this need clearing up, as Mike Stone has said, but has no-one on this site heard of confidentiality? Doctors are NOT obliged to give out details of their treatment or condition to patients relatives, the patient themselves have to give this permission out! Go to any GP's in the land and ask to view a relatives casenotes and see what happens, doesn't matter if you are their son or daughter or they yours, or a wfe or husband, they are not your casenotes and never will be!

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  • michael stone

    redpaddys12 | 15-Nov-2012 6:13 am

    Patient confidentiality is a huge 'spanner in the works'.

    However, if the patient has become mentally incapable, and there is a Welfare Attorney, the law is very clear that the WA is the ranking decision-maker for section 4 MCA best interests decisions: logically doctors have got to provide all of the details re prognoses to the WA.

    And some of us think a very similar disclosure is legally necessary when there isn't a WA but people are trying to justify a section 4 decision - needs sorting out !

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  • surely if a patient, dying or not, 'mentally capable' or not is in pain or distress then health professionals have a duty to alleviate that as much as possible, otherwise what's the point in being in a hospital.

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  • michael stone

    redpaddys12 | 15-Nov-2012 6:13 am

    Doctors grasp confidentiality, they don't properly undertsand the MCA, and they therefore write high-level guidance which contains logical conflicts. When I pointed this very obvious one out to a consultant recently, he implied that I have an almost preternatural ability to notice inconsistencies - weird !

    I sent this recently to a consultant who was involved with the 2007 Joint CPR Guidance – the colours I used in emails won’t work here, but there is an obvious paradox between the 2 sections.

    ‘PS If you were involved with the Joint CPR Guidance, do you have any idea (because when I pointed this out to Rebecca Mussell she couldn’t rationalise this – beyond ‘you have already highlighted some paradoxical guidance’) how come both of these are in there ?

    7. Decisions about CPR that are based on benefits and burdens

    If CPR may be successful in re-starting the patient’s heart and maintaining breathing for a sustained
    period, the benefits of prolonging life must be weighed against the potential burdens to the patient.
    This is not solely a clinical decision and must involve consideration of the patient’s broader best
    interests including their known or likely wishes. In these circumstances, discussion with the patient
    (or, if the patient lacks capacity, those close to the patient) about whether CPR should be attempted
    is an ESSENTIAL part of the decision-making process.

    7.1 Communication and discussion with patients or those close to patients who
    lack capacity

    If a patient lacks capacity, any previously expressed wishes should be considered when making a CPR decision. Whether the benefit would outweigh the risks and burdens for the particular patient should be the subject of discussion and agreement between the healthcare team and those close to or
    representing the patient. Only relevant information should be shared with those close to patients
    UNLESS, when they were previously competent to do so, a patient has expressed a wish that
    information be withheld.

    Consulting with those close to the patient in these cases is not only good practice but is also likely to
    be a requirement of the Human Rights Act (Articles 8 – right to private and family life and 10 – right
    to impart and receive information), the Mental Capacity Act 2005 (England and Wales), and the Adults with Incapacity (Scotland) Act 2000 (see section 9). Clinicians should ensure that those close to the patient, who have no legal authority, understand that their role is to help inform the decision-making process, rather than being the final decision-makers.

    That final sentence I have made green, is incorrect: only suitably empowered Welfare Attorneys have ‘legal authority’ over DNACPR decisions if CPR could be successful, and everyone else (clinicians and relatives) simply have a legal duty to act in the patient’s best interests.’

    Anonymous | 15-Nov-2012 12:15 pm

    If the patient consents - if a patient prefers pain to sedation and lack of 'awareness' then that is the patient's decision, surely ?

    And some of the legal issues do get hugely complex, once patients lose mental capacity - especially because most clinicians seem very poor at 'the legal stuff'.

    For example, and I've asked this before, is heavy pain relief and deep sedation titrated against the patient's own perception of his pain (do you increas the dose until it seems to be working in terms of symptom control) or is it titrated against 'we must not shorten life' and therefore stopped, sometimes, before the pain-relief is adequate as felt by the patient ?

    You need to understand the apaprent menaing of the law (for that one, section 4(5) of the MCA and its wording 'motivated by a desire to') to try and tackle these - most clinicians, behave awfully cautiously, which is not necessarily to the benefit of their patients.

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  • Mike Stone
    The points you put out all say discussion. Where does it say that a relative has the right or the power to influence DNAR decisions? Its still a medical decision after discussion.
    As for the up-titration of medications, it can be argued that you had to use an amount of opiate that has lead to respiratory arrest whilst the patient was in pain is ok.
    The difficult part ( and this happened to me early in my career) that some patients have ' suicide by nurse/ dr' tendancies and still ask for overdoses of morphine for 'pain relief' when all they really want is permanent escape from suffering ( hence to say I got the reversal agent out and this lady died a few days later)

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  • A dear friend of mine has just had the 1st anniversary of her husbands death at age 52, she says she was coping quite well in the circumstances until she read about the "death pathway" in the DM. This left her distraught, wondering if she should have questioned the care he received in the hospice for the last few days of his life. She is now riven with guilt.
    I saw the pain and distress he was in while at home the week before his death. All I can do is assure her that the DM talks a load of c**p in order to have a sensational headline so that they can sell more stock, and assure her that in 30+ years of nursing, including on an Oncology unit, I have never seen anyone given drugs to hasten their death.
    As someone said above, the LCP, like any other protocol/pathway is only as good as the staff implementing it. Maybe this comes down to adequate training and staffing levels.
    Contrary to what the DM and their ilk would like the public to believe, 'bad' nurses, HCA's, Drs etc are in a very small minority, most of us work our bootys off to ensure our patients are receiving the best care possible.
    Rant over, except to say that all helath care staff should stop buying the DM and find another source of internet news.

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  • no-one should read the DM, especially healthworkers.

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  • michael stone

    redpaddys12 | 15-Nov-2012 11:53 pm

    'Where does it say that a relative has the right or the power to influence DNAR decisions? Its still a medical decision after discussion.'

    Ah - 'it is still a medical decision after discussion' is the bit I can't find within logic or law - and as we know that Welfare Attorneys are the ranking decision makers, and WAs are probably laymen, it is clear that something other than medcial expertise is necessary to make best interests decisions.

    The point, is that if CPR might work, then DNACPR is not a medical issue a tall - it is a CONSENT issue.

    If you go to this page, you will find inside my post a link to a very interesting NHS Choices page about exactly this situation:

    'As for the up-titration of medications, it can be argued that you had to use an amount of opiate that has lead to respiratory arrest whilst the patient was in pain is ok.'

    I agree - that is my interpretation of section 4(5) of the MCA, and the purpose (pallaition and SYMPTOM CONTROL) of the LCP: symptoms are felt, signs are observed.

    ,The difficult part ( and this happened to me early in my career) that some patients have ' suicide by nurse/ dr' tendancies and still ask for overdoses of morphine for 'pain relief' when all they really want is permanent escape from suffering ( hence to say I got the reversal agent out and this lady died a few days later)'

    That is getting into the under-discussed trickier areas of EoL, they need greater and wider discussion, and that discussion is what I am engaged in with various clinical bodies and clinicians.

    End-of-Life is very complicated, especially for those patients who wish to die at home, but it does NOT just come down to 'clinicians make the decisions' - it is 'however, quite complex !

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  • Tiger Girl

    DH Agent - as if ! | 16-Nov-2012 11:33 am

    Hi Agent - I've followed your link(s), and as you say, that NHS Choices page does not state that doctors/clinicians make the decisions about the provision or withholding of offered treatments, if a patient lacks mental capacity. Actually, it could be argued that the page implies that the relatives and friends make the decision, not the HCPs.

    But it doesn't say how the decision is arrived at, either - I suspect that you have got something to say, about what that page means ?

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  • Mike
    You go on about welfare attourneys, never have I come across one in my whole career. I bet there aren't too many nurses on here who have.
    As for if CPR may work then it is a matter of consent, then I have to disagree. CPR in reality only works a fraction of the time anyway ( they dont tell you that in the adverts because few would undertake it), and whilst an acute condition may require it, the Dr has to take into account chronic conditions as well which may decrease the chances of successfull resuscitation, e.g. patients in advanced stages of cancer.

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  • what caring welfare attorney would want to put someone through cpr that isn't going to be successful or leave someone in pain? a welfare attorney is there to protect patients from distress.

    like someone else has mentioned I have never met a welfare attorney, I have heard relatives say "I have power of attorney" when they haven't at all, can produce of evidence of such a role and the patient doesn't know what they are talking about.

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  • DH Agent - as if ! | 16-Nov-2012 11:33 am

    I have followed your links, and that NHS Choices page does not state that doctors make the decisions about the withholding of treatments - but it does not explain much at all beyond that !

    Obviously, this area must be complex legally !

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  • michael stone

    redpaddys12 | 17-Nov-2012 5:03 am

    You go on about welfare attourneys, never have I come across one in my whole career. I bet there aren't too many nurses on here who have.'

    I can't find any figures about how many welfare Attorneys are appointed and also active - one of the many problems for EoL is the absence of data.

    But the legal significance is not whether there are WAs, but it is the fact that patients can appoint relatives as Welfare Attorneys, and once appointed the MCA is very clear that the refusal fo a treatment by a WA (i.e. the WA's stated section 4 best interests decision) can only be overridden 'while applying to a court'.

    I agree that CPR usually does not work, and it is also true that one cannot be very sure exactly why someone arrested (you can be sure that the person is very ill and probably going to die soon), and post-mortem 'labelling and behaviour' for home deaths also needs sorting out.

    Anonymous | 17-Nov-2012 9:47 am

    A Welfare Attorney is appointed because the patient trusts the WA to 'make decisions in lieu of me, when I can't make them myself' in normal language, but in legal terms a WA is appointed to be the person whose section 4 best interests decision takes precedence over other opinions about that.

    It really would help, if people read the MCA (the Act itself) and not the Code of Practice and the further guidance - if you don't decipher the Act, you can get confused very easily !

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