RIP – Liverpool Care Pathway

There are some images that you just can not erase from your mind right?

I have quite a few.

One of those images is watching the face of a woman as I stood in a room with my hands behind my back, watching her, a daughter holding the hands of her father, as he took his last breath, and passed away.

Another image I will never forget is the face of another man, whose hand I was holding and whose face I studied, as he too moved on from this life to whatever it beyond it.

I will never forget watching a lady, whose family were travelling back from the States to be with her, battle with her breathing, and eventually become too tired to keep the fight. I sat vigil, in place of those loved ones who were in a plane above the seas. There was music playing, and I laid a rose by her hands as she slipped away.

Another image in my mind is watching another scene unfold one evening, as another person crippled with illness and disease died. That day I cradled and comforted them and silently cried as they took their last exhales. A few hours earlier, in the same shift I had nursed with a colleague someone else, and stood back watching as family said their goodbyes, and as she slipped away. By 8.30 that evening, myself, and my team (I was the Senior Care Leader) and the Clinical Nurse in Charge sat in the empty dining room, crying. Together. We cried. Myself and the Nurse went out and smoked, and smoked. And we cried, and wondered if we could keep doing what we did. But then a pager went, the ciggie’s went out, the tears were dried, and the night continued. I stayed on to support the night shift coming onto duty, and on we went …

On and on I went, day in and day out. Sitting with people as they died. Comforting people, crying with people, laughing with people, remembering with people. Doing life with people, more importantly being part of the process of doing ‘end of life’ with people.

Because we are all born. And we all die. And for that season of my life, my purpose was to be there in the midst of that, in the midst of the pain, the darkness, the journey of moving on from this life to another.

See, some of you know me as @fragmentz who writes and tweet’s a lot about nothing much, which is fine, because that is what/who I tell you I am. Some of you will know me as @fragmentz who was a nursery nurse, a youth worker and a church worker. And then some of you will know me as someone who has just spent 5 years working in a nursing home, which as well as providing care for the elderly, also provided end of life care to anyone who was dying. That meant we cared for, looked after, nursed, supported and provided emotional love to people of all ages, from all backgrounds and situations who were dying.

Initially my job was as a Senior Care Lead, working ‘on the floor’ providing the practical care that people who are sick need. That was me in a uniform changing beds, bathing, washing, supporting people to eat and drink, administering medications, being part of a team of people ensuring the very best of care was provided so that the people we were nursing were comfortable. My role involved liaising with the Nurse in Charge, with Dr’s, with other healthcare professionals, families, and most importantly the patient themselves. It involved ensuring the staff I worked with kept the very highest standards of care possible and leading by setting a good example. It was tough, really really tough.

What would be tougher would be then moving into a more ‘pastoral role’. I was asked to become the ‘activities coordinator/pastoral overseer’ and became responsible specifically for supporting the people we were seeing coming to us specifically to die.

And this is why I am writing this blog. Because then I became so much more involved in the ‘big picture’. Became so much more involved in the holistic element of caring for people, especially those who are dying. I became the person who had the time to sit with people and their families for hours on end. I was the person who had the time to sit with and explain options, talk about the next stage, what the Dr’s said, what could or could not be done, and so it goes on … I was the person to support the patients and their families see through whatever was going to come, and for those people it would be death.

Because that is why they were with us. That is why they came to us, either from home or hospital, so that they could be cared for well in their last few days. Because they were in them. Maybe months, weeks or days. Mostly weeks and days.

Today we have seen the review of the Liverpool Care Pathway for dying patients Independent Report released. And its recommendation is for it to end. To be phased out by the end of the year. This is from the Panel Press release …

‘The Liverpool Care Pathway should be phased out and replaced by an individual end of life care plan, an independent review led by Baroness Julia Neuberger recommended today.

The review was commissioned by Care and Support Minister Norman Lamb in January 2013, because of serious concerns arising from reports that patients were wrongly being denied nutrition and hydration whilst being placed on the Pathway’.

For those who don’t know – ‘The Liverpool Care Pathway for the Dying Patient (LCP) is a UK care pathway covering palliative care options for patients in the final days or hours of life. It has been developed to help doctors and nurses provide quality end-of-life care’ (source: Wikipedia)

And it is something I have experience of working with. It is something I have seen implemented properly, and something I have seen working well. It IS a tool that when used as it was designed to be used can ensure that the suffering and pain of someone who is dying is kept as minimal as possible. That they are comfortable, pain free and are afforded their last days and hours in dignity. Which is what my role was there to ensure, that people were comfortable, pain free and dying in dignity. It is a tool that when used properly and well can be individual, can be done in conjunction with personal care plans and can ensure that the care a person receives is personalised to them.

Today the social media has been awash with comment. Comment, views, thoughts and opinions, from some people who know a bit about it, and some people who know little about it (and a few people who know a lot about it). Much of the conversation has been negative. I have tried to engage with people. I have tried to engage with the person who suggests that LCP is ‘evil and unchristian’. He knows this because they heard this on a radio phone in where a few people spoke of their negative experiences. I’ve seen tweets that say outrightly that nurses, care staff and people who dedicate their lives to caring for the dying are murderers, sick, have no compassion, don’t care, should die themselves or be thrown into jail. I have tried to engage with people who are out to criticise and who refuse to actually research, learn and understand what LCP really is, what it really stands for and does, and why.

The report acknowledges that the panel ‘recognised that, when applied correctly, the Liverpool Care Pathway does help patients have a dignified and pain-free death. And they support the principles underpinning it’.

So, what is at fault here? Really? Is it really the Liverpool Care Pathway which has been implemented successfully for many thousands of people enabling them to die in comfort, and without pain, or is it lack of understanding, training and the misuse of something? And don’t get me wrong, where this tool has been used and abused, the outcome is horrific. Wrong and horrific. I do not doubt or deny that. But why is that not being challenged and dealt with? Why are we seeing, because of the failings of a few, the entire LCP abolished?

This can only be a bad thing. It IS a bad thing, and a very sad day for end of life care.

If you look deeper you will find the tweets that talk about how the last days of ‘Mum/Dad/Brother/Sister’ were kept dignified, and that they were able to pass away from this life to another without battle. Without pain. And what it meant to the patient, and to the families.

If you look deeper you will find the stories of people who were helped immensely on the LCP, families who have nothing but praise for and the staff who work tirelessly. But you have to dig deep, because at the moment the over riding theme we are seeing talked about is about ‘starving people to death’ or ‘people being dehydrated to death’.

Lets be clear here, if thats what you are reading in relation to LCP, then that IS NOT THE LIVERPOOL CARE PATHWAY BEING IMPLEMENTED PROPERLY.

Never once did I see anyone refused food or water. That is not what it is about. Whatever the media or the hype might tell you.

What is about, and what we must must must make sure we have is guidelines in how to ensure that those who are dying, who are already at the point of no treatment (LCP is also not about refusing treatment, it is something implemented once that decision has already been made), have the right to die well.

We have midwives and processes to bring babies into the world.

We must have processes and people dedicated to ensuring people pass out of this world well too.

I’ve read some damning comments today. Please do not tar us all with the same brush. There are many compassionate people out there working day in and day out to make a difference to the the most very vulnerable, the dying.

Another image has entered my mind today whilst thinking/talking/reading about the LCP.

Its of my dear dear Gran.

I remember cradling her for hours on end, one night, in the hospital, the night after she had been told she was dying. That there was no more treatment left, and that it would be days, not weeks. I sat with her all night, in a ward, in a hospital bed as she shook and screamed in pain. As she cried in delirium because her body was torturing her. I cried as she cried in pain, and prayed for it to end. For the pain to end. Eventually she was given enough pain relief to stop her screaming. But we could not touch her, because her whole body was consumed by it. Even to gently stroke her hand, in her sleep she would wince. 12 hrs later, the Liverpool Care Pathway was commenced. After much debate as to whether or not she could be moved, she was transferred to the nursing home that had been her home for 7 years. And on the LCP she remained.

For the few weeks that she clung on, with the LCP in place, she was able to be made comfortable. She was given water when she needed it. She was given food when she could take it, but she was equally not forced when she could not. She was not subjected to endless blood pressure checks, blood tests, Dr’s coming round for ‘this and that’, endless routine tests to see what else could be done. She was allowed to rest, and get to the point of being totally pain free, so we could sit with her, hold her hands, laugh and reminisce with her in her moments of awakeness. It meant we could spend some precious time with her at peace, instead of seeing her screaming out in pain.

That is what the Liverpool Care Pathway ensured. How can that be wrong?

The last image that has entered my head tonight is a picture. This picture … handsThe right hand is my Grans. Taken before she became ill and died. But a picture I have and will always treasure of her.

Please please remember her and the many people who have passed away, pain free and in dignity because of the implementation of the LCP before you rush to criticise it too heavily. And the staff who work so hard and compassionately to make sure it can happen that way.


16 thoughts on “RIP – Liverpool Care Pathway

  1. This is fab, sadly the majority of LCP positivity gets deeply buried under negativity (not to negate anyone who suffered as a result of poor implementation.) Dying a good death isn’t glamorous but it’s part of the nitty gritty. Thanks for sharing the story of your Gran, I was already in tears before the picture popped up.
    You are a jewel girl

    • Thanks Jo for taking the time to read and respond. I’ve been away which is why its taken me a little while to reply to comments. As you say, the positive gets buried entirely by the negative, which of course must be exposed, but sadly the ‘tool’ is being blamed for something it did not do wrong.
      Thanks for the love x

    • Hi AFZ,
      sorry its taken me a while to reply, been on holiday!
      Thank you for taking the time to read, and post your link, I have read it and will reread and check out your follow up!
      Fragz x

  2. What a brilliant post. It made me weep. I too have lost someone dear to me and we were all fortunate enough to witness exceptional end of life care from a compassionate and dedicated multidisciplinary team. I will be forever indebted to the NHS. I fear the the withdrawal of the LCP will mean that there will be less funding for palliative and EoL care.

    Gemma x

  3. Brilliantly written – having been a children’s nurse who did a lot of work with children who had life limiting disorders I was with you all the way. Thanks for speaking out for what end of life care should be.

  4. Thanks for writing this, I’m spreading it about a bit!
    I used to care for the dying (retired hospice nurse). I was very anti using the Liverpool care pathway when we started using it in the hospice because I felt we were all well trained and empathetic to our patients and their relatives and we didn’t need it, BUT as a guide, used PROPERLY, it is very good for less experienced people caring for the dying. I rather dread to think what they’ll replace it with. Wish the government would just allow nurses to nurse.


    • Hi Holly,
      sorry to only just be replying to your comment, been away.
      My experience of LCP was never that it was being put into place because staff were not empathetic or trained enough, but that actually anything that can support and enhance our practice is a good thing right?

      I also worry hugely about what will replace it, if anything. And what happens when the replacement gets misused and abused, which it will, unless the heart of the issues are address – poor care/standard/funding/staffing etc?

      Fragz x

  5. I have seen the Liverpool Care Pathway work well with a relative of mine who died peacefully and pain free with her son at her bedside in the middle of the night. I worry about personal care plans, I had one myself when recovering from an operation – all it did was tick boxes to prove issues had been considered.

    • Hi, I’m sorry to have taken so long to respond to your comment. I’m glad that your experience of the LCP was positive. And sorry that your experience of personal care plans was not. Again, as with anything, any tool, any process, such as LCP, PCP’s etc, they work, IF they are implemented properly. And thats the key, training, funding, enough staffing for these things to be put into place and practice properly AND for bad practice and bad implementation to be challenged and acted on instead of just abolishing the tools.

  6. If there had been but a minute of decent concern for those who had so horribly and cruelly treated, whilst the Liverpool Care Pathway was in use, I for one would have been more sympathetic to its retention. However, there was no sympathy, no understanding, just a profound arrogance, contempt and medical dialogue which consisted of making mistakes and errors, but which was also wrapped by a clinical, almost malevolent cold indifference to the suffering of others.

    People were left to die in the most appalling and inhuman conditions, which could have possibly been manifest in our 21st Century hospitals. Patients had bruising and suffered assault, whilst others were left to beg and cry for water. I am aware of the testimony of many others including that of the daughter of a blind 92 year old man who had food and water put out of his reach and another who had a brother who was draining water from a cloth, where medical staff had deprived fluid. Hundreds of others watched their relatives die paralyzed under the influence of Morphine and left without food or fluids sometimes up to periods of 28 days and more. Who would dare call that care?

    Quite truthfully the NHS put these down to mistakes and medical blunders, whilst there was no compassion at all for the suffering caused and equally no intention of correcting this abysmal system and its abominable care practice. A practice which left many people suffering so much because it became wholly abused by a hostile NHS service. Which in many cases did not even either tell or involve the relatives as to what was happening. A sickening indictment to an arrogant and unconcerned health service, which protected itself with its own autonomy and internal complaints procedures, at the expense of its patients.

    The NHS simply did not care about patient welfare and that was made very clear, even before the review was called, as over 1000 complaints had been made then about the implementation of The Liverpool Care Pathway. As for the people who made those complaints, they have had to carry the loss of their loved one’s, whilst also indirectly feeling that they were to blame for putting their loved one’s into hands of the care services.

    The whitewash of cruelty covered by the NHS was not only untenable it was appalling and disgusting. It was not just about bad care, it was willful clinical neglect, inhumane treatment and worse, cases of assault became apparent. Clinicians, took it upon themselves to decide, that a person was ready or to die, even if that were not the case.

    The use of the Liverpool Care Pathway was to lead to a catalogue of sustained and systemic abuse, which was inflicted on patients by their carers. There were no excuse, no justification and no reason. Indeed the NHS has only itself to blame for the demise of the LCP. I only pray that which replaces it, has much better controls over patient safety. But I doubt it.

    I for one will never trust the NHS again and I know I speak for hundreds of others, who were put through this appalling procedure. Indeed anyone now trusting palliative care practices, is quite simply a fool as there is no guarantee whatsoever, that your loved one will get a good care team to look after them.
    This does not however decry the fact that there were good nurses and good care practice, of course there was. I however believe that was not down the Care Pathway at all, indeed you could have any “delinquent” framework in place, such as the Liverpool Care Pathway and it would not affect good quality care. Only those who genuinely care for their patients can deliver end of life quality care, maybe that is more down to a humanitarian aspect rather than a medical one though?

    Finally, we are not talking about negativity, or whether you would get rid of a car if it were faulty, or whether all driving should stop if there were accidents etc etc. Indeed with bad driving people should be prosecuted and have their license revoked. That should include every doctor who has made a mistake with the LCP, without fail. But unfortunately it won’t.

    It is the lives of others you are talking about here, not your own and also the added effect that the loss of those lives has had on relatives, where the use of the Liverpool Care Pathway was abused. If the loss of life in such circumstance is to be referred to simply as being negative, then there are far too many who are in the wrong job. Bad care, led to the deaths of what has potentially been thousands of victims.

    Negativity? is that all those lives mean? Just so that the NHS could continue to practice the LCP? – I think not – The NHS needs to take a really close look at itself to see exactly what it has become, then talk about how things might improve.

    Written on behalf of The Liverpool Or Care Pathway Group.

  7. Yes it all sounds very nice , but this is not everyones experience is it ???? why does there have to be any pathway ? why are there targets to be met ? why are hospitals being paid to put people on these pathways ? Too many people makeing money out of this , too many horrible experiences from people (or are you saying they are lies ? ) Im afraid that after all this everyone will be watching and waiting for the next Pathway and I for one will be watching too . Yes we all die , but to deny people water and increase medication to the point that on one visit in the evening when a loved one is totally coherent to the next afternoon being in a comatose state and stated above the bed nil by mouth , said person tongue stuck to the roof of their mouth due to dehydration so wrong !!!! . A natural death occurs whether patients have fluid or not if they are going to die anyway , so why increase the suffering denying basic care is so wrong ,and placing people on this pathway without relatives being informed is murderous, used to agree with with giving people the right to die with dignity , but since this Liverpool care pathway has been highlighted im totaly against it because it should be up to every individual not doctors or nurses putting people on this because they THINK they are going to die , too much to be gained moneterily by emptying hospital beds on a conveyor belt process Im glad this wicked plan is to be aborted better that than thousands more being murdered in the name of the NHS

  8. I loved hearing your heart. I would have felt reassured if I had known that staff with your care and compassion had been assisting my grandparents when they spent their time in hospice.

  9. the Liverpool care pathway was the most disgusting treatment in England, thank the lord they are rectifying the rights and wrongs, it has been scrapped but why phased out in six to twelve months it should have been instant, you must still keep your eyes open with patients in hospitals, to take the name Liverpool out does not mean they will not still do as before, by back-door murder. be alert at all times. so good luck and god bless you.

  10. come on fragmentize, why is my letter waiting moderation is it too near your nerve endings,, there are no abusive words and no swearing if you have a blog going why just listen to the things you want to hear, it must feel great on your high horse by stopping truths I feel sad for you.

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