The Liverpool Care Pathway – a personal & political perspective

Jeremy Hunt has announced that he’s going to make it illegal to place dying patients on the Liverpool Care Pathway (LCP – or ‘Death Pathway’ if you read the Mail or the Telegraph) – a medical regime intended to ease the last days of the terminally ill – without seeking patients’ consent and ‘consulting’ with relatives.

This is a massive red herring. The LCP itself addresses the issue of consent and discussions with relatives:

  • while legal consent is not required to place a patient on the LCP, the fact that the plan is being considered should always be discussed with a relative or carer and, if possible, the patient themselves
  • there should never be an occasion when a relative or carer who is named as the main contact is not informed when a diagnosis that the person is dying has been made
  • withdrawal of nutrition and fluids should never be a routine option, but done only if it is felt to be in the best interests of the patient, judged on a case-by-case basis

And medical professionals are puzzled by the sudden, high-profile controversy about a ‘pathway’ that has been in use for years.

I can tell them why it’s suddenly receiving such attention – it’s part of the tactic employed by the right-wing press on behalf of the government to chip away at public support and affection for the NHS, and Hunt’s measure is all part of the plan, to prepare for the next wave of attacks on our greatest national achievement, which I flagged a few days ago when the Telegraph ‘telegraphed’ the assault by renewing its attack by – you guessed it – making a major front-page splash of the ‘DEATH PATHWAY!’.

Because this subject is one that is so easy for unscrupulous editors and politicians to exploit, I wrote a post about it back in July, when it first started to be used as a weapon to attack NHS workers – and ultimately to attach patient welfare. In view of the renewed attention and Jeremy Hunt’s ‘new’ measure of telling medical staff to do what they’re already doing, it seemed the right time to repost that article. So here it is:

The Liverpool Care Pathway – a personal and political perspective (first published 9/7/12)

If you’ve visited this blog before, you’ll know that I’ve written on various occasions about the general Tory tactic of eroding public support and sympathy for a section of the workforce or population before targeting the same group for cuts or theft of support or conditions. In particular, I’ve written how Health Secretary Andrew Lansley’s escalated attacks on the NHS can be read and even predicted by watching the press for negative articles on the NHS.

The Daily Telegraph today published an article claiming that some hospitals are putting patients on the ‘Liverpool Care Pathway’ earlier than justified as a cost-saving measure. Now you might think that making such an accusation would highlight the insanity of the government’s cuts and the pressure that these are putting on the managers and clinical staff of the NHS. But the article quickly slants toward accusing doctors of not obtaining proper consent from patients while they are still able to communicate, and to the idea that LCP pathways are used even when natural death would be equally peaceful and pain-free, or even more so.

In the overall context of the way the right-wing press collaborates with the government to spread ‘helpful’ propaganda in preparation for attacks on the NHS, there’s a devious logic to this. Bear with me until the end I’ll explain it.

First, I want to take a look at the Liverpool Care Pathway itself, and the way it’s used in caring for the terminally ill. You see, I have experience of ‘the pathway’ from both ends. Going on 9 years ago, my terminally-ill mother was put on it for the last fraction of her life.

My mother was a remarkable lady. You’d expect me to say that, of course, but it’s true. From a very deprived background, she self-educated to the point where she could speak decent German and was widely read (and highly opinionated!). She looked after myself and my brothers until we were in our teens, then did a variety of jobs starting as a hospital cleaner, through working in a Greggs, to passing her qualifications to be able to work with special needs adults. She wrote poems, wrote one for her grave when she found out she was dying, and recorded a message to be played for everyone at her funeral, telling us all not to waste time being sad and she’d see us on the other side in a while. I had to give the eulogy at the service, and I joked – but not really – that she couldn’t stand the thought of someone else getting the last word!

Quite a woman. And not least in the way that she faced a 2-year battle against ovarian cancer without an ounce of self-pity and with an eagerness to get involved with other sufferers to encourage them not to despair.

Eventually, at the end of 2003, she went downhill rapidly and we knew she wasn’t going to last much longer. For the last few weeks, she was marvellously cared for in the local hospice, where of course she made friends with other patients to cheer them up because ‘there’s always somebody worse off’.

I had the privilege of being with her through the last 24 hours or so, along with my dad. She died on the morning of 15 December. The day before, she was becoming more and more distressed. The cancer had eaten its way up into her lungs, which were gradually filling with blood and fluid – drowning her from the inside out. This very proud and self-sufficient lady was struggling not to worry us, but it was clear she was very anxious and panicky. Who wouldn’t be?

The nurses came to talk to my dad and me, suggesting that it was time that we had to think about sedation. It would mean my mum was unaware of her last hours, but it would prevent her distress. This kind of sedation is one of the key elements of the LCP, to prevent unnecessary pain and distress and to allow a patient to sleep peacefully through those last hours. But of course, it also means that we – and she, once they’d explained it to her and offered her the choice – had a last few minutes together, knowing those were the last few minutes we’d be able to communicate.

I won’t tell you the details of those few minutes, but I’m sure you can imagine that they’re among the most bittersweet in memory of my whole lifetime so far. It was a quiet agony to hold my mum’s hand as the kind, gentle nurse slipped the needle carefully into her arm, then watch her eyes close for the last time. But it was also a massive release – a kind of emotional exhalation – to know that she wasn’t suffering any more. She died about 16 hours later – we were ‘lucky’, in that the progression of her disease meant that she died quite rapidly and the issues of nutrition and hydration didn’t need to be addressed.

My experience from the ‘other end’ comes from the fact that I’m married to a nurse who works on a ward where a high proportion of the patients are going to die from their disease at some point sooner or later, and often sooner.

My wife gets very emotionally-attached to her patients. Part of our routine after every shift – whether that’s at tea-time, late on a night or over breakfast if she’s been on a night-shift – is to talk (well, I mostly listen and sometimes prompt) through her shift. She needs to talk out the pent-up emotion to be able to deal with it, especially if she needs to sleep imminently.

As a result, I get to know her patients quite well – though always anonymously to protect their privacy – and particularly to see how the ups and downs of caring for them affects my wife. When she tells me that the time had come for a particular patient to be put onto ‘end of life’ (her hospital’s shorthand for the LCP), her eyes will fill up as her sympathy for the patient and their loved ones wells up. If she knows a few days ahead, and from her long experience she often does, that the moment is approaching for a patient, it will weigh on her mind through all that period. More so as she knows she needs to treat that patient just the same and not show distress or an extra-solicitous manner that will increase the patient’s anxiety.

Nurses have to do that – force down their own emotional reactions so that patients don’t see them and have it add to their own distress. They have to show just the right amount of care and compassion, or else they make things harder for the patients. And, just occasionally, they have to cover for each other while one of them goes out of the ward if they can’t hold back the tears.

Nurses also have a veto – a certain amount of discretion – in the administration of the LCP. Doctors – who are no less diligent and caring for the most part, but of whom I have much less direct experience – do, if they’re inexperienced, occasionally prescribe the pathway a little early according to the judgment of the nurses. But the nurses can delay its beginning if they’re not convinced the time is right yet – and if necessary they can refer up the medical ladder for confirmation of their instincts.

But always, when it eventually happens, it’s a deep trauma for the clinical staff. Less acute than for the grieving loved ones, but more chronic, more cumulative. A daily diet of small, and sometimes larger, griefs.

All of which is a way of underlining that there’s really no possibility of staff putting patients onto the pathway a moment earlier than they judge to be not only clinically justified, but also the kindest thing for the dying patient.

I promised to explain the devious logic of the kind of article that the Telegraph published today. Even though they started off the article by naming the need to save money as being the context for the decision, by subtly switching the emphasis onto the medical staff’s supposed lack of due procedure and medical justification for ‘pathway’ decisions, they’re setting hospitals and trusts up as targets. Targets the government can then shoot at along these lines:

Well, cuts are unavoidable in these difficult times – but clearly NHS trusts are failing to adapt to those cuts in clinically and morally acceptable ways. This is bad for patients – so we need to put everything even more quickly into the hands of private enterprise, into the hands of people who know how to cut costs and still maintain service standards. People who will do a better job – and prevent suffering and distress.’

Of course, it’s all absolute hogwash – a narrative to justify the unjustifiable. A fiction – because it is a fiction to say that if money’s tight, you can improve things by adding a profit-requirement to the costs.

If – and it’s a planetary-sized ‘if’ – a hospital or a doctor were to be bringing forward even marginally the deaths of patients purely in order to save cost, then that would demonstrate one thing only. It would demonstrate that this government is imposing such unrealistic, unachievable cuts that doctors were pushed to the end of a tether – and then pushed even further until the tether snaps. And the fault would lie with the imposers of the cuts, not on the broken staff.

Keep an eye on the news media over the next few weeks. There will almost certainly be more stories along these lines. And then, either announced or by stealth, the government will use them as an excuse to speed up privatisation measures, dressed up as rescue-missions to prevent suffering.

But when you see these stories, just remember this article – and remember that there’s no way that doctors and nurses will be implementing the LCP early. It’s just too emotionally damaging. I know that – I’ve seen it, from both ends.

But there is a group of people who stand far enough away from the suffering not to experience it or be moved by it – far enough to care only about profits and their own narrow ideology.

Those are the ones we should be pointing the finger at.

Those are the ones that should be accused…

19 responses to “The Liverpool Care Pathway – a personal & political perspective

  1. Thanks for this beautiful account of the LCP. My only reservation about it was based on the rumour that hospitals were getting cash for each person put on the LCP. That would be absolutely unacceptable. Do you know whether it is true?

    • Thank you! I’ve seen conflicting reports and am looking into it. I can’t imagine it – my suspicion is LCP forms part of some larger category and it’s the larger category that is targeted somehow. But we’ll see.

    • They also obtain research funding -that’s an incentive too. One chap is receiving £95 K to research an algorithm for constipation in a palliative care setting…..I’m tempted to say a mathematician could work it out ….for a fraction of the cost, but the large cancer charities have already allocated large sums for palliative care ‘research’, so its another possible financial incentive. The incentive also appears to involve pharmaceutical companies too, who are busy building chemotherapy suites for hospitals and (since they are only able to offer ‘Phase I safety trials’ to patients who have been coded for ‘end of life care’) get a potentially huge number of guinea pigs …..

  2. My mother, 81, went to A&E in good spirits with a minor injury and ended up on “care pathway” that killed her. There was no consent and no adequate diagnosis or discussion with family. She fell from a height from a raised bed while observations were underway and hit her head. She was admitted not because of the minor injury but because of the fall in A&E and then fell a further three times injuring her head on the ward. In the following days her mental state changed and she became confused. The fall in A&E was denied despite its record on the file. I repeatedly told the hospital of the shift in her mental state. She was discharged with a confusional state (hypoactive delirium) unresolved and no longer able in the circumstances to look after herself at home. She fell again and was re-admitted. Acute onset delirium, especially if it is hypoactive, ticks most of the boxes for the LCP or any other end of life protocol, and yet it is common, treatable and often misdiagnosed in the hospitalised elderly.

    hospitalised elderly. How are this particular group protected from an u

    • I’m sorry for your loss. Bad care is bad care – but the solution is better care, and possibly dealing with culpable individuals – not the demonisation of the entire NHS.

  3. My experience – patient taken to A&E with suspected infection on Sunday evening. After tests, A&E doctors agreed, admitted & prescribed IV antibiotics. Monday morning, Consultant gerontologist arrived looked at age, history & apparently unilaterally decided to remove all treatment. Relatives arrived Monday afternoon and nurse asked whether they knew and asked whether they wanted to discuss it with the doctor – she was clearly concerned.

    I am completely in support of the NHS and can understand your concern about the way that this is being portrayed in the right-wing press – but there are enough first-hand experiences out there to see that the guidelines are frequently not being followed and for everyone’s benefit, there needs to be a better system to ensure communication with patient and relatives is improved.

    • Staff are already supposed to advise them. I’ve no problem with a legal requirement to ‘notify’. A legal requirement to obtain permission from relatives would be very problematic – patients are naturally distressed and sometimes even try to stop doctors beginning the LCP when the patient him/herself wants it.

      What I do have a problem with is using the LCP as a weapon to try to undermine public trust in and affection for the NHS, which is what’s happening and what my post was about.

  4. Its not a ‘left’ or ‘right’ wing ‘press conspiracy…its just that the number of victims families has reached a ‘critical mass’…for years, the LCP has been used to clear beds..and each victim’s family has been fobbed off by the NHS complaints system,CQC, PHSO, GMC,NMC etc etc. However, sooner or later, it starts happening to the families of qualified medics, qualified scientists, and …qualified Human Rights solicitors … people you can’t bs in the way you can bs less educated people ….people who look things up🙂
    Once the records are examined, and they see how many of the victims a) gave no consent or were not asked, b) had valid advance directives refusing Palliative Care which were ignored, c) had viable treatment options under the NICE guidelines relevant to their condition AND a sufficiently high performance status to undergo them…
    Once you see how many people with moderate pneumonia and a cannula already inserted, who were in no pain or remotely agitated, had their antibiotics witheld as ‘too burdensome’…and were for some reason given prn doses of midazolam and morphine.. its too late to blame ‘the press’…its down to the individual practitioner really…Some of the shouts have been so obviously age biased and race biased …I mean.. Rusty Lees mother…what ‘terminal illness ‘ did she have again???

    • I understand your points – and from ‘prn doses’ etc, it sounds like you’re medical and with direct experience.

      When anything is abused, it’s a bad thing. The remedy for that is to stop it being abused, though – not to target the whole practice.

  5. PS: I note someone has posted that the LCP is ‘kindest’ for a ‘dying patient’….have you ever considered how awful this death pathway is for the other patients in the surrounding beds to witness ?

    • My own experience of it, and what I hear from nurses I know, is that standard practice is for end of life patients to be put into a side ward on their own, so it’s not a factor when that happens.

      Having someone die in a bed near you wouldn’t be pleasant – but, again based on my own experience, watching/hearing someone die choking and panicking would be a lot worse than seeing their passage eased as far as humanely possible.

  6. How many people died choking and panicking before the LIverpool Care Pathway was invented I wonder? …..I truly cannot see nursing or medical care was so bad before…..having gone back through the DoH and NHS history of this care pathway, it appears to have originated with a ‘survey’ done by sensationalist journalist Esther Rantzen….she made a program called ‘How to Have a Good Death ‘ for the BBC, shortly after her husband died…she interviewed a young John Ellershaw (who co-authored this)…….problem is, it was a ‘That’s Life’ style ‘survey’…..and no one can actually lay their hands on the data anymore….so I think the entire thing began with ‘sensationalist journalism’…..and apart from a few ‘bad deaths’ before it, it was entirely a means for a few ambitious, anonymous people to get ‘in ‘ with the NHS.
    No small matter are they, ‘consent form signatures’ , when you’re administering morphine and midazolam prn…..shame so many have gone ‘missing’….

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