The Liverpool Care Pathway – a personal & political perspective

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…

Postscript: My best friend made the first comment on this post – and if anything, it’s an even more eloquent testimony to the value and, yes, heroism of our NHS and its staff. Please make sure to read it before you leave. Thank you.

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

  1. A resonant and challenging post, Steve.
    Resonant because your loss mirrored my own devastation nearly a decade earlier when cancer of the rectum claimed my father. My dad, bullet proof…like all dads…and who had spent a lifetime providing for his family, was taken just a couple of years or so after he retired.
    He endured not one…but two…hugely invasive procedures over a two year period, the second of which weakened him to a point from which he never recovered. He passed away on a snowy morning in a beautiful Sue Ryder hospice in February 1994. I remember spending night after night at his bedside after distracting myself with work during the days and weeks preceding the inevitable. I’d just stepped into the shower at home at 8am when the phone call came. I knew. That last act of the gentleman…the gentle man…who was my old man, was typical of him. Understated, not wanting to cause a fuss and dignified. Full of pain, full of morphine, a husk of a man, but still in control.
    My mother cries for him every day.
    My point is that in the NHS, this country has an institution, a keystone in our society, and one that should be the envy of the world. Healthcare free at the point of delivery. To all, regardless. An institution that has looked after countless mums like yours and dads like mine, providing not only pre-surgical, surgical & post-operative care, but also emotional & nursing excellence right on the front line. At the bedside 24 hours a day. Every day. An institution that fixed my brother’s broken collar bone and removed my appendix. An institution that at all levels cares for my elderly mother on a weekly basis. An institution that should be properly funded & not torn apart by this administration
    My dad may have ended his days in the palliative care of the wonderfully gentle Sue Ryder nurses, but without the equally wonderful care at all points in the NHS – paramedics, porters, junior nurses, junior doctors, sisters, consultants, radiographers, and more – he wouldn’t have had the time he did.
    Final point…his younger sister..my Aunt…spent her working life in the NHS. She was a nurse.

  2. I just called it as I see it, Steve. Your personal reflection was the catalyst to put something I’ve experienced, but only previously talked through with one or two people special or important enough to me, into the public domain.
    There are millions of us with similar stories; individually vital, emotional roller coasters, but because they’re individual each one in isolation gets lost on the breeze.
    That is why your campaigning…and that of others…is crucial.

  3. Interesting post although personal experience varies. In the year 2000, I whistleblew on how the elderly were being ended too early. This is the Sunday Times article http://www.webarchive.org.uk/wayback/archive/20100224023917/http://www.nhsexposed.com/patients/hospitals/nstaffs/elderly.shtml

    There are two issues,

    1. Voluntary euthanasia
    2. Involuntary euthanasia
    3. Deaths that happen naturally.

    My point is that [2] has never been addressed properly. My personal experience is that the NHS is institutionally discriminatory. As such, poor assessments are made on quality of life and not enough effort is made for people who can survive. Now, I know this because I have saved many who would have otherwised perished.

    Best

    Dr Rita Pal

  4. Steve,
    Your blog evoked a range of emotions for me. My gran was a manageress for Greggs for starters and when my Mam died a couple of years ago of a poorly known condition that steadily robbed her of her sight, independence (she set up one of the first one-stop GP practices in the country, and working before that in a Deanery many Doctors today in the North-East owed the organisation of their GP rotations to her) and finally, excruciatingly, her life. Although to some brutal, the fact that a Consultant sat with her and my Dad and told her that there was nothing more that could be done and that she was going to die, meant that they had a precious few days to share all the things a couple never separated for 49 years want to before her health deteriorated to a point where her end of life care started. By the time Dad would let us join him, my Mam was sedated and had a syringe driver. I spent a night in the hospital with her (the staff were fantastic and put us in a fortuitously badly designed 2 bay side ward that meant we could come and go without disturbing anyone).
    The LCP in and of itself is a useful tool. It is how it gets applied, by whom, in what context, in collaboration with which carers and the patient and with what resources to support its use.
    Without doubt it has the potential to be abused and it is for professionals, families and advocates to guard it’s use from motivations less pure.

    • to the person who wrote political and personal perspective attacking the telegraph i read the telegraph it was not the paper scaremongering but two professors and six intelegent doctors condeming the liverpool so called care pathway who work in this field of work so lets have the truth it was not the telegraph but professors and doctors, i smell a lying rat. lets get this barbaric money saving evil act abolished for the good of english patients.

      • My article doesn’t question the integrity of the doctors who wrote the letter. What I do criticise is the use of it made by the Telegraph – their article is framed as a criticism of the NHS for the alleged acts in question. Even though the Telegraph accuses that if it’s done, then it’s for cost reasons, they don’t mention at all the massive cuts being forced on the NHS by this government. Then they simply quote a Dept of Health spokesperson saying ‘this shouldn’t happen’ – when the reason it’s happening (if it is) is because of the government’s cuts.

        The Telegraph article is framed as an attack on the NHS – typically, using whatever incident is to hand as a weapon. Does anyone really think they – or the government – really care about patients? It’s politics and propaganda.

  5. to skywalker, dont talk so stupid how can it be propaganda when you have two professors and six top doctors plus dr. rita pal who has taken more than one patient off the back door pathway and saved there lives, these doctors are not lord haw haw in the hitler regime, they are professional medical experts, which trust do you propoganda for skywalker.

    • If you read the post a little more carefully, you’ll see that I’m saying that the propaganda is in how the report was used, not in the report itself. The Telegraph itself says that the actions were driven by cost – but then instead of using that to attack the government for its cost-cutting measures and the pressure it’s applying to Trusts to achieve them, it frames the report as a condemnation of the NHS. That’s propaganda.

      But thank you for the comment.

  6. Pingback: Hunt planning massive new wave of NHS attacks, Telegraph colludes | skwalker1964·

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