Norman Lamb writes: The Liverpool Care Pathway and end of life care

I imagine many people had not heard of the Liverpool Care Pathway before it hit the headlines a couple of weeks ago with allegations of patients denied drugs, liquid and sustenance and families experiencing real distress. Set up in the late 1990s, its intention was to help spread elements of the hospice model of care into other settings: hospitals, care homes and people’s own homes. We all want to know that our loved ones – no matter where they are – will receive dignified and appropriate care in the last hours and days of their life.

Used properly, the Pathway ensures that individuals receive whatever treatments are right for them in their final days. The Liverpool Care Pathway itself is very clear that patients should be involved in decisions about their care if possible, and that carers and families should always be included in the decision-making process.

There is a public statement about the Pathway which you can read online here. The statement sets out what the Pathway is and, crucially, what it is not. It has been signed by more than 20 leading organisations including Age UK, Marie Curie Cancer Care and Macmillan Cancer Support. They would not support any programme that denied dignity to people at the end of their life.

If, as it appears, the Pathway has not been used appropriately then that is a matter for serious concern.  I have been deeply troubled by media reports of cases where families have not been properly involved, and by the distressing stories of people who have contacted me directly about this issue to relate their own personal experiences. The National End of Life Care Programme will be looking into complaints about end of life care and I will be meeting with doctors and patient groups to hear firsthand about their experiences and to talk about how to ensure that end of life care is as good as it can be.

The Liverpool Care Pathway is not about ending life, but about supporting the delivery of excellent end of life care. I will continue to support its appropriate use. However, I will not shy away from challenging where this has not been the case.

One step to help address the concerns that have been raised is contained in the draft updated NHS Constitution. We have launched a consultation on this today. For the first time it reinforces the importance of patients and their loved ones being involved in decisions about end of life care.

This is a hugely emotive and hugely important issue. We need to get it right, for the best interests of patients and for the peace of mind of their families.

 

* Norman Lamb MP is Liberal Democrat Minister of State at the Department of Health

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7 Comments

  • I lost my Father in July this year. He was a long term resident of a nursing home primarily due to dementia who, in a very short period of time, suffered a significant infection linked to diabetes. The only treatment for the infection would have been highly invasive and has a 50% survival rate for a fit person in their 30′s and would never have been considered appropriate.

    I attended A&E with him when he was admitted and met (at the request of my Mother) the next morning with a Consultant who discussed the condition, the lack of any feasible treatment, and the options open to us. We decided upon following the Liverpool Pathway together. We did not suspend food and drink as he was able to take these with assistance, including the odd sip of contraband whisky. After a stabilising 24 hours we were able to transfer him back to his nursing home where he was surrounded by fantastic and loving staff until the end some 8 days after his initial admission. He continued to receive excellent treatment until he passed away peacefully holding my hand.

    The hospital staff were excellent throughout and a credit to both the NHS and Torbay Hospital. They consulted with me, as the family representative, throughout and helped us through a stressful and desperately sad situation. The same is true of the staff at the nursing home. And I feel it is important to note that he was an NHS patient, which never affected the level of his care in the home. The whole process was a model of care, I will never be able to thank the staff enough, many even came to his funeral to pay their respects.

    I write this as a balance to some of the comments I have read regarding the use of the Liverpool Pathway in the media. It is a tool that prevents suffering and crucially prevent the extending of suffering. Dad never wanted to be kept hanging on. He watched his own mother do so and always made us promise to ensure he did not, because of the wonderful staff mentioned above we were able to keep that promise.

    As a society we need to ensure that this baby is not thrown out with the bathwater.

  • right at this very moment my partners grandmother who’s in her late 90′s is in hospital and has been there since her fall where she broke her hip and shoulder. she survived her hip operation and has been in a lot of pain from her broken shoulder which apparently couldnt be mended. she’s also had a stroke which has affected her ability to swallow comfortably and as she’s very sensitive in general has not liked to drink or eat. she has been taken off a drip and it has been assumed that she’s dying due to her not wanting to eat or drink. the last thing she said to a family member was that she had a terrible dream that she wasnt coming out of the hospital. that in itself was a message that she didnt want to die. she’s been put on the LCP and my partner has said that she s got her eyes open and is squeezing his hand. previous to this she was asleep and it was thought that she would not wake up. she s shown an improvement but everyone is still in the belief, (apart from my partner) that its kinder to not give her food and drink by placing her on a drip. he feels that this is effectively legalised manslaughter. he feels helpless and as he’s not the next of kin cant do anything to stop it. he has voiced his concern to his family in front of his nan , who apparently was looking at him throughout , and squeezing his hand, but everyone still believes that its “kind”. she s fought all of her life and recovered after every fall and illness, and has survived periods of fasting for weeks previously. she has not made this decision and my partner is beside himself as he knows this is not her decision. how can this process be legal? how is the judgement made on the belief that someone is dying? this is happening right now. euthanasia is happening in britain legally no matter what people believe.

  • I levelled a formal complaint against the same NHS Trust that Professor Pullicino practices from.
    I commend and fully support Professor Pullicino’s claims that the LCP is, and has been, at times used inappropriately.
    I accompanied my partner for, what should have been, an everyday routine biopsy of a neck mass that began 6 months previously. Her GP made a rapid referral in April 2005 for the biopsy and the ENT Consultant performed a Fine Needle Aspiration in July ’05. With the FNA proving inconclusive, blood and debris only, she elected for a biopsy under general anaesthesia in August ’05. Following surgery she suffered respiratory arrest in the recovery area and an emergency Tracheostomy was performed.

    As opposed to accompanying me home that day the surgeon explained the unfortunate events and that she was now stable in ITU. I next saw her consciously 4 days later on the nursing ward where she then told me, “I have been through hell”. Because she expressed a wish to seek legal action, when she returned home, I took photographs of her condition.
    In absence of any past medical history of any cancer, at just 63 years young, she died 3 weeks later and death is recorded as Lung cancer. Not until I obtained 300 ward medical notes, that took the Trust 4 months to provide, now condemning the NHS Trust’s treatment, did I discover the surgeon had implemented the LCP without anyone’s knowledge. Also discovered was an undated DNAR notice.
    The shambolic “Kafkaesque” NHS complaints procedure, as described by solicitor, Sarah Harman, where the Trust deliberately stalled their responses in order to expire the limitation period for litigation, followed by 2 Independent Reviews, concluded that there is no evidence of cancer. Lung nodules present on a CT scan are, in fact, multiple pulmonary embolisms.
    Not knowing their misdiagnosis my partner was placed on the LCP and the first treatment to be deprived of was her respiratory medication being withdrawn. Subsequent ward notes then document, breathing difficulties, and once the concomitant use opiates, Tramadol, Oramorph and MST (Morphine Sulphate) were commenced in an unstable asthmatic there was no chance of reversing the LCP.

    Again, only after I obtained the medical notes did I discover an undated DNAR notice and the surreptitious administration of a Morphine syringe, together with Midazolam and cyclizine.

  • Jo, Will – I am very sorry to hear about your experiences. As I said above, the Liverpool Care Pathway is not, nor should it be, about ending life. I am absolutely clear about this. The Pathway is clear about this. Patients and their families should be involved in any decision. Good communication from healthcare staff is essential.

    It is clear that there are problems with how the Pathway has been used in some instances and I am treating this matter extremely seriously. The aim of the Pathway is to allow people to have the care that best suits them in their final days. As Steve suggested, some of the media reporting has not been as balanced as one would hope. Steve – thank you for sharing your experiences. As a society we are historically not very good at talking about death and dying. As minister with responsibility for end of life care, I want more people to be able to experience ‘a good death,’ whatever that means to them. Steve, I am glad your father was able to do so.

  • Thank you for replying Mr Lamb. I note that you stated in the House, in answer to Glyn Davies, we have received no formal complaints about the Liverpool Care Pathway (LCP). However, we have received a number of letters from Members of this House and members of the public raising concerns about aspects of the LCP and about reports in the media.

    I have to add that because I, nor my partner, was aware of the Liverpool Care Pathway in September 2005 I never made it part of my formal complaint against the Trust. The main thrust of my complaint centred upon why my partner, in absence of any previous cancer, suddenly died just 2 weeks following a cancer diagnosis. I have over 300 medical notes clearly indicating the LCP protocol of beneficial medication being withdrawn and the surreptitious use of a Morphine syringe. Together with an undated DNAR notice. The top of her discharge form also has “not for 222″ written in pencil which is the code for not resuscitation.
    It took over 4 years for the NHS complaints procedure, including 2 Independent Reviews by the Healthcare Commission, to establish from their clinical experts that, from the CT scans and x-rays provided by the Trust, none showed any evidence pointing towards a lung cancer.
    Apart from the, now proven, erroneous cause of death the Trust’s Legal Services department created a number of other contentious issues. As the nominated Next of Kin I received a phone call from the hospital primarily to inform me that the death certificate was ready for collection.
    It has since become evidently clear why that conversation included my being told that because I was only a partner I would not be entitled to request a post mortem. In reply to my MP’s request to the Trust’s CEO as to why the complaint was taking so long to conclude a chronology of the complaint offered no substance to the issues I raised. After taking 4 years for the Trust to concede that I was wrongly informed as to my legal status, and that I was indeed entitled to request a post mortem, they were more than happy to comply with the Healthcare Commission’s recommendation that the Trust should apologise for giving wrongful information as they had escaped litigation by exceeding the 3 years limitation period.
    If you would be willing to accept my formal complaint against my Trust as evidence that the Liverpool Care Pathway needs revising I have already spoken with my MP’s secretary who has asked me to forward details. Dr Tony Cole of the Medical Ethics Alliance and Dr Bee Wee of APM also have copies of my case.

    Kind regards

  • kathleen grant 30th Nov '12 - 5:32pm

    My older Brother died in July this year after being placed on the LCP.We {his siblings} were given very little information as to why he was placed on the LCP.His death was a very traumatic one for us it was harrowing and very distressing as he was on the LCP for 13 days before he died I understand from the MedicalEthics Alliance that the cruellest part of this is that he was not given any water for all that time. Despite our constant requests that he be given water we were ignored .After my Brothers death we had a meeting with the Doctors involved who told us he needed an operation on his gall bladder to survive and no Doctor would operate on him given his health problems{he had Parkinsons disease and Diabetes}they also stated he was considered to be dying when they placed him on the LCP.We consider that any person who survived for 13 days was A not near death B had a strong heart so would have survived an operation on his gall bladder and C bu surviving for so long was demonstrating a very strong will to live. The situation was made even more fraught for us because at his wifes request the Hospital allowed domiciliary carers to be at his side 24/7 so we were never able to see our Brother alone.The decision was made to place him on the pathway by the Hospital ,his second wife and his children of his first marriage who he had very little contact with for years.We his siblings who had been very strong advocates on his behalf throughout his illness were allowed to have no input and were sidelined and most importantly of all my Brother was never asked what his wishes were.As my Brother {because of the Parkinsons disease} found it difficult to vocalise his wishes he had an advocate appointed for him by the PCT but when this most important life and death decision was made on his behalf the Hospital did not see fit to appoint an advocate to ascertain his wishes.We are left feeling this decision was taken for financial reasons {my Brother had an extremely generous care package in the community as his wife did not undertake any of the care herself he had 2 carers 5 times a day 7 days a week which cost the PCT in excess of £1000 a week} We feel our Brother was discriminated against on the grounds of age {he was 74 } and disability.

  • Heather Blenkinsop 10th Jan '14 - 10:50pm

    My Grandmother was placed on the LCP without solid diagnosis. The medical staff were very sneaky, and they new what they were doing. It was not lack of training.
    Nan contacted MRSA and ecoli in that filthy place.
    Medics decided that my nan, had a hole or tear SOMEWHERE!
    that’s not a diagnosis, only a probability. I really believe they made it up, as their diagnosis was based on past medical conditions. They had no scans or xrays to prove their findings.
    They began by removing life saving drugs, which included heart medication and blood thinners to name a few. Stopped observations, and left her there in the bed to rot. Stopped all food intake and most importantly refused water and drinks.
    The Lcp was commenced when no one was around. They did not discuss what they were doing. They told us our Grandmother she would be dead in 2 days. Medics refused her an operation even after she begged them. My Grandmother said she was not in pain. She could eat and drink, but was not allowed to do this. We were told they were keeping her comfortable.
    Our Grandmother asked us to set her hair, and she removed a few fine facial hairs herself, as she wanted to look decent when she was dead.
    This did not seem like a patient at deaths door to me?
    However, my Grandmother was deemed to be dying by the medics, and was placed on this pathway.
    It is a very evil end of life protocol when used incorrectly, and it hastens death.
    No medicine, No food, No water. No observations. No real diagnosis. = DEATH
    Remove these mass murderers from the NHS it is a very dangerous place.
    The medics involved in my Grandmothers case, were corrupt and evil.
    My mother next of kin begged them to operate. I begged at least three times. My sister begged them to operate.
    They refused. Their answer was “SHE’S NOT A VIABLE OPTION. what they really made, she’s not worth spending the
    money on.
    My family contacted the hospital after my Grandmother died. We asked them why they refused an operation? they said “NOBODY NEW SHE WANTED AND OPERATION” they are liars. I have the proof to support this.
    The reason they refused the operation was either PREDJUDICE against old people or NO HOLE OR TEAR?
    WHY LIE?
    Please take of your old folk, as they are at huge risk of neglect or I believe even MURDER if placed in some NHS hospitals. What I seen will haunt me for ever, I will never trust them again, my Nan and the family were cheated and treated appallingly.

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