(Cross-posted from the Journal of Medical Ethics blog)
The Liverpool Care Pathway provides a rubric for managing the care terminally ill as they approach death. A helpful pamphlet explaining what it is and what it does is available here. Ideally, I’d quote the lot; but for the sake of efficiency, I’ll make do with an edited quotation:
What is the Liverpool Care Pathway (LCP)?
The LCP is a pathway/ document that outlines this best care, irrespective of your relative/ friend’s diagnosis or whether they are dying at home, in hospital, in a hospice or a care home.
Medication/ treatment
Medication will be reviewed and any medication that is not helpful at this time may be stopped and new medication may be prescribed so that if a symptom should occur there would be no delay in responding.
It may not be possible to give medication by mouth at this time, so medication may be given by injection or sometimes if needed, by a continuous infusion by a small pump called a Syringe Driver, which will be tailored to individual needs.
It may not be appropriate to continue some tests at this time; these may include blood tests or blood pressure and temperature monitoring.
The staff should talk to you about maintaining your relative’s/ friend’s comfort; this should include discussion regarding position in bed, use of a special mattress and regular mouth care. You may want to be involved in elements of care at this time.
Diminished need for food and drink
Initially, as weakness develops, the effort of eating and drinking may simply have become too much and at this time help with feeding might be appreciated.
Your relative/friend will be supported to take food and fluids by mouth for as long as possible.
When someone stops eating and drinking it can be hard to accept, even when we know they are dying. It may be a physical sign that they are not going to get better. Your relative/friend may neither want or need food and/or drink and decisions about the use of artificial fluids (a drip) will be made in the best interests of your relative/friends for this moment in time. This decision will be explained to you and reviewed regularly.
This can be paraphrased further: medically futile treatment may be withdrawn; the main criterion for administering drugs will be symptom alleviation rather than life extension; some testing may be discontinued; it’s possible that there’ll come a point when artificial nutrition and hydration are no longer in the patient’s best interest, and they might be withdrawn if and when that point is reached.
None of this is particularly cheery; but death rarely is. 
The LCP simply recognises that there are some times when aggressive treatment – or very much treatment at all – simply isn’t worth the candle, and advises on how to manage such situations.
The LCP found itself under attack from the Daily Telegraph at the end of October, with the suggestion that it might put patients at risk, on the basis that NHS trusts were being rewarded financially for putting patients on to it. This followed reports that some medics were equating it with euthanasia, on the grounds that statistical evidence shows that people live longer when not on the pathway. Of course, that should hardly be a surprise given that implicit in the whole idea of the pathway is the idea, borrowed from palliative medicine, that fighting to keep people alive isn’t always desirable. (The financial incentives bit is, I’ll admit, a bit strange – but it could be something as simple as the LCP being recognised as best practice, and funding decisions being used to incentivise that – or withheld if best practice isn’t followed. Still: that’s just a guess, and there’s a whole book’s worth of stuff about NHS funding that I don’t understand.)
Anyway: that wasn’t going to stop the Daily Mail giving its own version of the story, and running its own human prurience interest piece about someone who was put on the pathway, but fed by her family, and who survived – and then another two days later. Melanie Phillips joined in, too, with the nuance for which she’s famous. Naturally, that someone on the pathway might go on to recover is not all that surprising: medicine is an imperfect art; but – vitally – it doesn’t follow that decisions to use the LCP are unreasonable or indefensible at the time. Rather, best practice would simply be to keep these decisions under review – as the Marie Curie Palliative Care Institute Liverpool, which pioneered the LCP, admits:
The patient’s condition should be continually monitored in order to assess the patient’s needs and to give support to the relatives/carers. Clinical experience has shown that in around 3% of cases, the patient’s condition can improve and the patient is no longer deemed to be in the dying phase. A full reassessment of the patient is then undertaken and an alternative management plan is put into place. The patient’s [sic] whose care is supported by the LCP must be assessed closely by the doctors and nurses at the bedside. LCP Version 12 also includes a formal process for reviewing decision making by the multidisciplinary team at least every 3 days over and above the ongoing assessments of the patient’s condition.
Point is, this looks like a bit of a non-story, unless your standard for clinical acceptability is perfection – and even then, we’d need to know more about rates of aggressive treatments to extend life, and the quality of those lives. Aggressive treatment simply to extend life mighn’t be morally acceptable in some cases – though it’s much less likely that the press’d complain about that.
Anyway…
The Mail is at it again: NOW SICK BABIES GO ON DEATH PATHWAY, it screams. My instincts are that any headline in any newspaper – but especially the Mail – that begins with the word “Now” is probably unmitigated scaremongering bullshit. This article is a rehashed version of a very worthwhile piece from the BMJ. Except… Well, here’s the Mail‘s version of a key part:
Earlier this month, an un-named doctor wrote of the agony of watching the protracted deaths of babies. The doctor described one case of a baby born with ‘a lengthy list of unexpected congenital anomalies’, whose parents agreed to put it on the pathway. [emphasis mine]
It does sound rather as if the LCP was suggested by medics, and the parents agreed. But wait! Here’s the BMJ version:
The voice on the other end of the phone describes a newborn baby and a lengthy list of unexpected congenital anomalies. I have a growing sense of dread as I listen. The parents want “nothing done” because they feel that these anomalies are not consistent with a basic human experience.
Slightly different, what say?
And if you search for the words “Liverpool”, or “Pathway”, or “LPC” in the BMJ article… can you guess how many times they appear? That’s right.
Almost, but not quite, once.
So what we’ve got, really, is a non-story about the LPC reworked into a scaremongering ZOMG! Teh evil doctorz is killin ur babies piece of journalism. It’s all there: shoehorning in the LCP, and renaming it – a recognised “best practice” protocol – a “death pathway”; the alarmist rent-a-scare quotation from the Medical Ethics Alliance; the out-of-context quotations… We could play yellow-press bingo.
And this stuff does matter: it’s not just a quibble over terminology, or interpretation. It matters because, like it or not, people do believe what they read in the papers. At least some of the people reading that article are likely to have a seriously ill child, or to know someone with one, or to have had some contact with serious paediatric illness. And it’s likely that this kind of story will add to their fear and distress: as if having an ill child isn’t bad enough, the doctors don’t want to treat her but would prefer to starve her to death, and if the doctors don’t want to, the managers will insist that they do anyway, yadda yadda… and added to it utterly needlessly.
Sometimes fear can be warranted, and causing it justified. But it is not at all obvious – to say the least – that this is one of those times.
On the other hand, causing this kind of distress makes good commercial sense. It shifts units (and causes people like me to link to the website: kerching!). It’s a pornography of fear. And it’s foetid.
Incidentally, Anthony Wrigley, who runs Keele’s MA in Ethics of Cancer and Palliative Care in cooperation with the Marie Curie hospice in Liverpool, and who knows a thing or two about this stuff, notes something else:
The odd thing about the story is it seems internally inconsistent. The Mail is obviously anti-euthanasia but all the critical aspects of the article were about how terrible it is to allow children to die slowly. At the same time it acknowledge that the LPC was only implemented in cases where further treatment was futile and death inevitable. The obvious conclusion from this is that active euthanasia is the position the Mail is actually arguing for whilst being explicitly opposed to it. So, if we ever wanted any more proof that the Mail writes a load of [ballistics] all the time, here is another to add to the pile.
He didn’t use the word “ballistics”, obvo.
Thanks for the auspicious writeup. It in truth was once a entertainment account it. Glance advanced to far delivered agreeable from you! However, how could we be in contact?
Nicely put – thanks for this.
which comic have you been reading gregory the dandy or the beano what you have just written is far from the truth.
I don’t know whether my precious precious husband was put on the LCP or not. He was a very very sick man fighting and losing the battle with cancer and was admitted to hospital with an infection which turned out to be pneumonia. The Doctor who admitted him initially told me that if his heart stopped there would be not attempt to revive him. I argued forcibly with this until she pointed out that he was so frail that all it would do would break his ribs and cause him incredible pain with little hope of recovery. I hadn’t thought of this consequence but she was right and I told her so. I also told her that short of CPR, I expected her to do all she could to make him well enough for me to take him home. She promised she would and ordered an Xray and culture in addition to putting him on antibiotics. Pneumonia was diagnosed and after 2 days the culture indicated that the antibiotic he was on was not suitable so it was changed. I didn’t have a problem with this – they started him on the most appropriate treatment pending the culture result.
Having been on this new antibiotic for 36 hours his condition got much worse. He was X-rayed on the ward and fighting for life. The consultant was called. He had me and my husbands 3 adult children into his Office and told me that my husband was very very sick, that he had been on antibiotics for more than 48 hours and was not responding to treatment. It was his intention to withdraw treatment. I told him firmly that that was not going to happen. He was so arrogant when he said that the decision was not mine to make, it was his and it was a clinical decision. I told him that my husband had not been on antibiotics for 48 hours because following the culture result it was found that he had been on an inappropriate type. He began to contradict what I was saying and very bravely his nurse affirmed what I was saying. I was then called back to my husbands side. A short time later, I was joined by his children and they told me that the consultant said he would give him something for his secretions. A nursing sister came in and injected him before leaving us. 10 minutes later my precious precious husband died.
Perhaps another 10 minutes later, the nursing sister came just through the room doorway, looked at us from there, gave a sympathetic nod and left. No one came to listen to his heart or anything and we were with him a long time. They knew what they had done. His records show that his last injections included Diamorphine, Midazolam and Hyoscine Hydrobromide. I don’t know about the latter 2 but he didn’t need diamorphine for pain.
It took 3 days to get his death certificate and he didn’t have or need a post mortem so I cannot understand why. His death certificate showed that he died of Pneumonia and cancer.
Having got his records, the last X-Ray that morning indicated fluid tracking up into his semi diaphragm. I understand that this is indicative of a rupture in his bowel and from that there was never going to be a way back.
My point is this, this so called Consultant with the power over life and death couldn’t even be bothered to check my husband’s records or to ask to see the results of the X-Ray taken 2hours – 20 minutes earlier. There was no respect for my husband’s life – he was a nothing. Had he taken the time and trouble to look at things properly he would have known what was happening. There would have nothing he could have done but tell me the position and my response would have been to say “Just make him as comfortable as you can.”
So people like this having the right to “bump” people off as and when they think things are tough – no way. And for there to be any additional payment is such an obscenity that it is amounts to state funded euthanasia and in some cases state funded murder. Whoever introduced such payments at best want sacking and at worst – well words cannot describe my feelings
I am so sorry for your loss Mrs. Fox- deeply sorry. I am also sorry this will soon be the norm in my county of America. It cant be undone so dont allow this to become bitterness and poor health in you. Be a voice to end this and speak the truth and it will be healing. Again- very sorry to hear your husbands story. God bless!
..most relatives who stand and fight against an overdose of morphine find themselves surrounded by a gang of nurses, being accused of cruelty for ‘not letting him/her go’….rather like being in a dairy shed ….sadly,, you are FAR from alone in your ‘patient journey’…I’d rather they set up palliative care units at Poulton’ s Park myself…at least our father could have decided whether to get in the darned queue for it or not!
And what of the 7 or 8 other patients in the ward witnessing people being subjected to these treatments??? Don’t they have any rights to be treated with dignity?
Whilst your story is undoubtedly a sad one, I’m afraid your post here is clouded by your grief, and reflects a lay view of the situation, which does not benefit from an understanding of the medical situation.
It seems here the biggest problem was poor communication skills from the doctor, which is regrettable, and sadly happens more often than it should – and which has left you with these bitter feelings about your poor husband’s last few days. However, as you have said yourself in your post, with what you have described as end-stage cancer, a severe pneumonia that wasn’t responding to antibiotics (36 hours on the “right” antibiotics should be enough to see a response), and maybe even a bowel perforation “…there was never going to be a way back… There would have [been] nothing he could have done…“. It sounds to me that in that situation they did exactly the right thing in giving him the diamorphine, midazolam and hyoscine. “…but he didn’t need diamorphine for pain.” Really? Do you think that those 3 conditions are painless? Bowel perforation tends to be excruciating, but from your description it is likely that your husband was so unwell it would be very difficult, if not impossible, to assess his pain accurately. Would you rather doctors gave patients pain relief on the basis they probably do need it and thus make them comfortable, or would you prefer that it was withheld, just in case they don’t? His passing away 10 minutes later was a result of the overwhelming effects of his illnesses, not these medications which are given in very small doses. How would you have felt if he had more obviously been in pain but they refused to give anything in case of side-effects? How will you feel if, on the basis of your complaints and accusations, the next frail and dying patient in pain was denied pain-relief because medical staff are too afraid of relatives complaining that they are ‘bumping off’ patients?
“They knew what they had done” So, what had they done? They made sure a dying man was not in pain or distress in the last few minutes of his life, then gave you time to sit with him without disturbing you. The Consultant doesn’t have “power over life and death” and he has no motive or incentive to do anything but his best for your husband, but sometimes people are sick and can’t be mended. Do you think that your misinformed accusations will motivate over-stretched NHS staff to go the extra mile? If anything is going to encourage a couldn’t care attitude, it is ungrateful relatives making outrageous accusations of “murder” when they don’t understand the situation.
On top of this, you then misunderstand the way funding works in the NHS, leading to your hyperbolic statements of “state funded euthanasia” and “state funded murder”. Simply put, hospitals are paid based on their performances in meeting the Department of Health targets – which usually includes implementing “best practice”. This applies to everything they do, not just the LCP, although as it happens The Liverpool Care Pathway is considered best practice in the care of they dying patient. So, if they did not use the LCP and instead their dying patients were cared for in some other, inferior, way that would be considered to be poor practice and thus they would be financially penalised. There is no direct “reward” for the clinical staff making the decisions.
I sincerely hope you can move on from this experience, and remember the good times you shared with your husband, rather than dwell on his last few days. But I don’t think making accusatory comments towards the staff who did their best for your husband is going to help anyone, including you.
I am sure that MD is right in most of what s/he writes.
I am not convinced, however, by her/his statement that «the biggest problem was poor communication skills from the doctor». (I agree that it was a problem, but not the most serious one; it was, rather, a symptomatic one)
From what Alice Fox writes, her husband was already a very sick person, and already «losing the battle with cancer». The biggest problem thus appears to be the lack of a clearly defined plan constructed by Mr Fox with Mrs Fox and the medics at the time of diagnosis, and then subsequently reviewed and modified during the evolution of his condition. This plan should have aimed to ensure clear agreement on the general outlines of treatment, including possible future hospitalisation.
Of course, no plan can predict all eventualities, but at least there would be a broadly accepted view of the appropriate treatment, its form and its objectives.
The real problem is that without such discussion early after diagnosis there can be a divide between “lay people” and the medical profession, such that MD can write that Mrs Fox’s post “reflects a lay view of the situation, which does not benefit from an understanding of the medical situation.”
We should be capable of rising above such conflicts : what we should be aiming for is the vision of a shared perspective.
It is clear that articles such as that in the Daily Mail do nothing to advance such practices (but neither does over-reaction in the other sense).
For anyone interested : from the November issue of Mayo Clinic Proceedings
Tips For Resolving Conflicts Over End-Of-Life Care
It’s one of the toughest questions patients and their loved ones can discuss with physicians: When is further medical treatment futile? The conversation can become even more difficult if patients or their families disagree with health care providers’ recommendations on end-of-life care. Early, clear communication between patients and their care teams, choosing objective surrogates to represent patients and involving third parties such as ethics committees can help avoid or resolve conflicts, Mayo Clinic experts Christopher Burkle, M.D., J.D., and Jeffre Benson, M.D., write in the November issue of Mayo Clinic Proceedings.
“Health care professionals in the United States have struggled with the importance of maintaining patient autonomy while attempting to practice under the guidance of treatments based on beneficial care,” Dr. Burkle, the study’s lead author, says.
Tips from Drs. Burkle and Benson to effectively discuss end-of-life care include:
Clear communication: Early and clear communication between health care providers and patients or their surrogates is the best way to avoid disagreement over whether medical care should continue. Recent studies show that more than 95 percent of such disputes are resolved through mediated meetings involving physicians and patients/surrogates.
Choose objective surrogates if patients cannot represent themselves: The surrogate’s role is to stand in the shoes of the patient and suppress his or her own judgment in favor of what the patient would have done. However, it is important to acknowledge that medical surrogates often struggle to balance their wishes for the patient with the patient’s own wishes. Studies have found that not only do many surrogates fail to accurately predict a patient’s treatment wishes, but when asked to resolve disputes, they are more likely to show bias by overestimating the patient’s desire for continued treatment.
Involve third parties when necessary: When health care providers and patients or their advocates cannot agree on end-of-life care, involving a third party becomes necessary. Beginning in 1992, the Joint Commission, the largest hospital accréditation organization in the United States, required hospitals to establish procedures for considering ethical issues. Hospital-based ethics committees have been the most common response to this requirement.
“End-of-life care will continue to be an ongoing discussion within the medical community; however, it is important that medical care providers and patients/medical surrogates continue to dialogue,” Dr. Burkle says. “Only then can experts continue to offer insight into the effectiveness of systems used in countries that have moved to a more patient-centrist approach to end-of-life care treatment choices.”
to alice fox i am so sorry to read your sad letter about your husband i can understand your distrust in the care of your beloved husband, simular ocared to me with my wife, at times they do get it wrong but they will not admit it for obvious reasons, because whan all said and done nobody is perfect and mistakes do take place fairly regular and quite often in hospitals thats why they pay large amounts of money out for negligence. i am sorry dutch cloggs. thats someone who spoke against your beliefs alice god bless you. john.
I lost my lovely Mum and Dad to Lung Cancer – I would have given the world to cure them but it wasn’t to be. My Mum said to me – “I’m scared of pain – please don’t let me be in pain” Because her immune system was so low trying to fight the cancer – she developed a painful infection and was given antibiotics but the infection was overwhelming and antibiotics didn’t work. She was given an appropriate amount of painkillers to alleviate her suffering – thank heavens. We trusted the GP and the nursing staff who treated her with kindness beyond belief. It still gives me a lump in my throat when I remember how they were with her. There was no going back from the cancer – she wasn’t well enough to have chemo or radiotherapy. I wouldn’t have wanted them to withhold painkillers or any other symptom relief – why would I do that? In the vain hope that this would prolong her life? She was dying – she had untreatable cancer – she didnot have the strength to fight the infection, her immune system was laid low by the cancer – the antibiotics weren’t a miracle cure. Whether we gave her the painkillers or not she would have died that day the difference would have been dying peacefully or dying in pain. I take comfort that she did not not suffer. I really hope you do get some of this wonderful care in your country
Oh dear – the ‘anonymous ‘ doctor who wrote the BMJ article – is it ‘rag week’? Was this in fact – the doctor who gave 2,000 mg doses of pancuronium bromide to 2 premature babies, because he “felt in his heart” that the children were suffering? The GMC let him off anyway as I recall….(http://www.guardian.co.uk/uk/2007/jul/12/ukcrime.health).
..as I’m sure they would let off any LCP implementor who admitted to hastening death. We already have euthenasia in the UK because of this case .
Trouble is, the public haven’t. Won’t be too long I’m sure before the MCPCIL hires a ‘media consultant’ to post positive stories into Daily Mail comments boxes…I’d rather there was a Public Inquiry, but those responsible for the roll out of this flawed scheme I guess lack the professional integrity to insist on one themselves…and are quite relieved they’ve been given time by Hunt to back – clerk all their errors. The number of documents on their site which have already been hurriedly edited is a testament to their ineptitude. Presumably, everything will be ship shape before Hunt’s ‘independent review’…otherwise the DOH and NHS face a whopping great legal bill for Corporate Manslaughter, for bringing a healthcare scheme online with no quality control, or indeed ethnic monitoring (which is illegal in the UK).
Suppose the profession can just say ‘whoops, only obeying orders’…but to use an anonymous author at the BMJ in an attempt to stifle public scrutiny is a form of unprofessional conduct in itself.
I’m always a bit concerned when a ‘professional magazine’ like the BMJ publishes anonymous contributions….could be written by anyone….rather like yours 🙂
..the GMC find it perfectly acceptable to inject 2,000 mg of pancuronium bromide into premature babies now…http://www.guardian.co.uk/uk/2007/jul/12/ukcrime.health …why don’t they just allow this in the UK for consenting patients?
Far better than allowing the covert euthenasia of discarded patient groups to continue…..
What a load of crap. The WHO standards also say live low-birthweight babies cannot be recorded as stillbirths since the 1980s, but statistical analysis shows the practice is still common.
Why? Same reason the LP is misapplied. It’s easier, cheaper, and it makes everyone look better.
It’s nice there’s some well-meaning words out there in the official description of the process. Hopefully if you ever end up at the mercy of the State, they’ll comfort you as you die a slow agonizing painful death by starvation.
Dear Mrs Fox. I am sorry for your loss. I feel your husband received perfectly fine treatment at the end of his life, apart from the apparent lack of communication. They gave him something so he was not in pain: Diamorphine. They gave him something for his chest secretions so he would not feel like he was drowning in fluid: Hyoscine Hydrobromide. And they gave him something that helped him not to panic in case he DID feel pain or a drowning sensation from his chest secretions: Midazolam. I am sure any nurse or doctor would have explained the use of these medications to you had you asked.
It seems there are a lot of things you are unhappy with about the treatment but instead of asking the doctor, you have made some assumptions based on your emotions, rather than on the facts. It might be worth it to simply make an appointment with the doctor and ask him to simply explain all the steps in the treatment and why they did what they did. I did that when my partner died. I spent an hour with the consultant who explained, with the use of scans and test results, all that had happened in the past 5 years and why things had happened they way they had. After that, it all made perfect sense to me. Because then I had the knowledge.
My partner died whilst on a syringe driver with those exact medications. They were what she needed to go to a painless death. We never want our loved ones to die. But from what you described in your post, your husband was already very close to death. He was not killed by anything the medical staff did. I work in palliative care and one of our big fears is that families *think* we kill their loved ones if they happen to die shortly after an injection of morphine. Sadly this has lead to a reluctance to give people pain relief which they may desperately need. Because people hear; Morphine Injection and they think they know that means DEATH. It doesn’t.
Communication, communication, communication. It is the KEY.
the patient will stop eating and drinking if they are not offered or helped. the lcp is for one thing only to get them out of the way, starvation this should never be done not to a cat a dog a bird or any of gods creatures so why inflict this starvation on humans. if not by mouth by drip.
It must be great, Watchman, to be able to have an opinion without having ANY knowledge of facts. Shame the Daily Mail and the likes of them are the same. Who cares about facts if it can make a big fat headline.
ye dutchcloggie , i may not have any knowledge on the liverpool death care wrongway, pathway but what about , professor peter millard emeritus professor of geriatrics at the london university , and dr. peter hargreaves palliative care consultant at st lukes cancer centre in guildford surrey professor patrick pullcino nursing specialist, plus twelve nurses would you say these doctors have no knowledge, they all say its induced coma and involantary euthanasia, whos kidding who cloggie in my bricklayers eyes its 100% murder in most cases. now reply back to me lets see what nonesense you have. brickie.
i am waiting for cloggies or dutchcloggies reply are you shy or are you lost for words. brickie.
to md ithink you talk as though you are intoxicated with morphine or midazolum, you say its for the dying patient from relatives complaints they were not dying taken they were taken off it and still alive today one going on a world cruise get your facts right md and stop the involantary euthanasia the right word is cold blooded murder.they have to be treated not executed.
hi cloggs, this evil pathway would be okay in amsterdam i mean the laws there are a bit relaxed they sit in windows with red curtains to atract punters have you sat in one before being and still being learned about the lcp that you said you can laugh at it so be it.
Working on crafts and homemade projects at your home tend to be fun, plus its another thing that you can turn into a small business from home once you get the hang of what you are making. Candles are invariably a preferred item, because they are for virtually any season of the year, they create wonderful gifts, and you could put all the creativity as you have into the candle making designs that you create. This site is great for reinforcing these points and tips.
thats right candle maker, i would imagine your candle kits would light up anyones fire it can be like when you trump its candle in the wind, elton john sang it, i think.
to iain brassington. your report about babies being put on the liverpool care pathway is true, it was also highlighted to the bmj of all people why dont you stop trying to make excuses up for the pathway it was not the mail itself it was given these facts the writing came from the professors , doctors and nurses stop saying the mail and thetelegraph are scaremongering, its the whistleblowers who work in hospitals that are telling the public about this evil liverpool uncareing pathway, so come on iain own up to the truth.
to night watchman, well written watchman no one can convince me this lcp is okay to use it is like you say when you get professors and doctors and nurses speaking against it how can it still be allowed to be used its unbelievable keep up your good work speaking against it. curious.
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