What is the Liverpool Care Pathway?

Behind the Headlines

Tuesday November 27 2012

The Liverpool Care Pathway aims to improve care of the dying

An independent review of the controversial palliative care practice known as the Liverpool Care Pathway (LCP) has been announced, many newspapers report.

The LCP is intended to allow people with a terminal illness to die with dignity. But there have been a number of high-profile allegations that people have been placed on the LCP without consent or their friend’s or family’s knowledge.

Concerns have also been raised about hospitals receiving payments for increasing the number of patients who are placed on the LCP.

Care minister Norman Lamb is quoted as saying: "It is clear that everyone wants their loved ones' final hours of life to be as pain free and dignified as possible, and the Liverpool Care Pathway is an important part of achieving this aim."

"However, as we have seen, there have been too many cases where patients were put on the pathway without a proper explanation or their families being involved. This is simply unacceptable."

"Today I have committed to appoint an independent chair to review how end of life care is working and oversee the reviews into the LCP. This will report back to me in the new year. This review will also consider the value of locally set incentives, and whether they are leading to bad decisions or practice."

 

Daily Mail article on LCP ‘highly misleading’ says BMJ editor – update December 11 2012 

The editor of the British Medical Journal (BMJ), Dr Fiona Godlee, has released a public letter to the Daily Mail claiming that it is "misleading readers by publishing a highly inaccurate article on the care of severely disabled newborn babies".

The Daily Mail’s front page story – Now sick babies go on death pathway: Doctor's haunting testimony reveals how children are put on end-of-life plan – was based on a piece from the 'personal view' section of the BMJ entitled How it feels to withdraw feeding from newborn babies.

In her letter Dr Godlee voices concern that the Mail's report did not reflect that the anonymous doctor who wrote the piece in the BMJ does not practise in the UK or in Europe. She highlights also that the doctor did not mention the Liverpool Care Pathway.

The Mail’s article included the following quote: "One doctor has admitted starving and dehydrating ten babies in the neonatal unit of one hospital alone". In fact, the doctor in question said that such situations were "very rare", having occurred 10 times in 13 years of practice in a large specialist hospital.

The doctor who wrote the BMJ article is quoted as saying: "To juxtapose the article with pictures of healthy babies misrepresents the clinical situation entirely. Some babies are born without intestines or with other abnormalities that make oral feeding physically impossible. Others have such catastrophic medical conditions that continued artificial hydration would only prolong the dying process. One would never undertake a decision to forgo artificial feeding if it could in any way benefit the child. Parents request cessation of this treatment, and the health team deliberates about this extensively before any action is taken, not the other way round."

 

What is palliative care?

Palliative care is medical treatment designed to make people with terminal illness feel as comfortable as possible – both physically and emotionally. It can be used to relieve symptoms but not cure a condition.

What is the Liverpool Care Pathway?

The LCP was developed during the late 1990s at the Royal Liverpool University Hospital, in conjunction with the Marie Curie Palliative Care Institute. It was intended to provide the best quality of care possible for dying patients in the last hours and days of life, whether they were in hospital, at home, in a care home or in a hospice. It was widely seen as a way of transferring the model of “excellence” in the care provided in hospices to other healthcare settings such as hospitals and care homes.

The goal of the LCP is to ensure a death is as dignified and as peaceful as possible. It may involve, for example, reviews of:

  • whether any further medications and tests (such as taking the patient’s temperature or blood pressure) would be helpful
  • how to keep the patient as comfortable as possible, for example, by adjusting their position in bed or providing regular mouth care (some illnesses or treatments can cause over- or underproduction of saliva)
  • whether fluids should be given, when a patient has stopped being able to eat or drink
  • the patient’s spiritual or religious needs

According to the Marie Curie Palliative Care Institute, the LCP can “guide the delivery of care for the dying to complement the skill and expertise of the practitioner using it … the goals of care prompt staff to consider the continued need for invasive procedures and whether current medications really are conferring benefit”.

The LCP is recommended as a model of best practice by the Department of Health and has been adopted in many UK hospitals and other healthcare settings. Deborah Murphy, a national nurse lead for the LCP, calls it “a process that inspires, motivates and truly empowers the generic workforce in caring for the patient and their family in the last hours or days of life”.

 

Why was the Liverpool Care Pathway introduced?

The LCP was introduced because, during the 1990s, there was an increasing consensus in the UK medical community that standards of end-of-life care were patchy. Some hospices provided excellent treatment, but some hospitals did not meet the same standards. In particular, concerns were expressed about issues such as:

  • patients being subjected to invasive testing and treatment that offered no chance of preventing death
  • causing unnecessary pain and suffering by needlessly prolonging life

 

Why has it been controversial?

According to newspaper reports, several families have complained about use of the care pathway. Some relatives have claimed that their loved ones were put on the pathway without their consent and some have said it has hastened death in relatives who were not dying imminently. Critics say that it is impossible for doctors to predict when death is imminent, so the decision to put a patient on the pathway is at worst self-fulfilling.

It would be inappropriate to comment on individual cases. If there were failings, as has been alleged, it could be that these were the result of professionals not following the recommendations of the LCP, rather than faults with the LCP itself. For example, the LCP recommendations make it very clear that:

  • 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

The media has also reported that use of the pathway is being encouraged for financial reasons, linked to targets. The Daily Telegraph reports that almost two-thirds of NHS trusts using the LCP have received “payouts” totalling millions of pounds for hitting targets related to its use. While these financial incentives do exist, they are designed to support the implementation of better care. It is disappointing to see the level of cynicism in this story, with the unspoken – and hardly credible – implication that doctors and nurses would routinely hasten patients’ deaths so that their hospital would make money.

 

What about people who have survived the Liverpool Care Pathway?

There have been reports, including in the Daily Mail, that people have “survived” the Liverpool Care Pathway. It is cause for celebration that someone who was believed by health professionals to be dying has survived. Indeed, guidance for health workers on the LCP states: “Uncertainty is an integral part of dying. There are occasions when a patient who is thought to be dying lives longer than expected and vice versa. A second opinion or the support of a palliative care team may be required”.

 

What do health professionals think?

The LCP has been praised by many doctors for its aim to make life for those who are imminently dying as comfortable as possible, rather than using artificial efforts to prolong life. A recent article by a GP in the British Medical Journal argued that the pathway had "transformed" end-of-life care and offered a “good death” when used properly.

 

What does the Department of Health say?

The Independent reports that the Department of Health says that it doesn’t provide direct financial incentives for trusts to use the LCP. However, local areas may choose to have these in place.

A Department of Health spokesman told the Independent: “The LCP is supported by more than 20 leading organisations, including Marie Curie Cancer Care and Age UK, as a way to help meet the care and dignity needs for those who are at the end of their life.

“We are clear the LCP can only work if each patient is fully consulted, where this is feasible, and their family involved in all aspects of decision-making. Staff must properly communicate with the patient and their family – any failure to do so is unacceptable."

 

How can I have a say about my end of life care?

Those with a terminal illness or approaching the end of life may wish to think in advance about plans for the future of their care. This is sometimes called advance care planning and involves thinking and talking about your wishes about how you are cared for in your final months. Read more about planning for end of life care.

You can write down your wishes in what is called an ‘advance decision’, sometimes known as an advance decision to refuse treatment (ADRT) or a living will. This is a decision you can make now to refuse a specific type of treatment at some time in the future. It lets your family, carers and health professionals know whether you want to refuse specific treatments in the future. This is so that they will know your wishes if you are unable to make or communicate those decisions yourself.

If you have a relative who is terminally ill you should – where feasible – be consulted and kept informed about the plan of care, including use of the Liverpool Care Pathway. Health staff should also check with families that they understand the LCP.

Analysis by Bazian. Edited by NHS Choices. Follow Behind the Headlines on twitter.

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The 9 comments posted are personal views. Any information they give has not been checked and may not be accurate.

User840669 said on 01 February 2014

When used properly the pathway worked, and worked well, as usual the minority have won yet again. The care that the majority of patients received under this pathway was fantastic and allowed elderly people to pass away with the dignity and care that is very much needed at this time. However, because of a very few mistakes in a very few hospitals the LPC has now got to be phased out, with nothing in place to replace it, what a sad and sorry state of affairs we now have, as now the elderly and others will not be able to have the care and respect that was the LPC, shame on everyone who sat on the panel, now we go back to the old days when even more mistakes were made and care for the dying elderly was almost non existent

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jasper41 said on 19 October 2013

"How can I have a say about my end of life care?

Those with a terminal illness or approaching the end of life may wish to think in advance about plans for the future of their care. This is sometimes called advance care planning and involves thinking and talking about your wishes about how you are cared for in your final months. Read more about planning for end of life care.
You can write down your wishes in what is called an ‘advance decision’, sometimes known as an advance decision to refuse treatment (ADRT) or a living will"

This does not answer my question, is there anything I can do in ensure that I receive treatment or is it up to doctors to decide to stop any treatment?

What do health professionals think?

"The LCP has been praised by many doctors" Why haven't the public been consulted on this or don't we have a say, it is our life's we should have a say. I for one do not wish this so called end of life care, I don't want the medical profession to decide when it's my time to die.

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jasper41 said on 19 October 2013

NHS Choices? It seems to me that we have no choices when LCP has been used without permission, it seems that doctor's can over rule the patient's wishes and that of their family. "The LCP has been praised by many doctors" It's not up to the doctor's to decide when someone's life should end! " How can I have a say about my end of life care?" " . Read more about planning for end of life care.
You can write down your wishes in what is called an ‘advance decision’, sometimes known as an advance decision to refuse treatment (ADRT) or a living will." I can't see any information for people on how to make sure they are not put on the LCP or any other name you will give it in the future, why is this??? No choice here!!!!

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Timothy White said on 19 June 2013

The Pathway, intendd to allow people with terminal illness to die with dignity. My younger siblings agreed to her going onto this pathway. during the last two weeks around our mother's hospital bed, the pathway was not discussed amongst us. I brought the question up, after seeing that my mother was in distress. She asked for help constantly, her tongue hung from her mouth. She would writhe in pain, and fear, and ask for help. She felt sick all the time, and was handed a bed pan. She asked for help, she said she was afraid. She asked: 'Am I going to die now?' I asked to speak to her consultant, he was condescending, derisory. My mother was ignored. What is more to the point, is that my mother did not know, was not told, that she was on the Pathway. Many of the articles concerning the Pathway, point out that families were not told. The salient point though, is that the patient is told. My mother died in pain, in anxiety, and when she asked was she dying now, she knew, she was intelligent, that she was not being given help. She was in fact, given a death sentence, and she cottoned onto it. The Pathway is euthanasia under a different name. She was denied medical help. The only help she received was from nurses placating her fears. The placation made her ever more fearful. And she died. She was denied hydration (on medical grounds!), She was denied medication (on medical grounds!). She was given a sedative the night before she died, which I believe sedated the staff, until she passed.
The Pathway, The Liverpool Care Pathway, is in my opinion, anything but caring, and should be made illegal. Perhaps, and hopefully, the fact that hospitals gain economically by it, is reason too.

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30michael said on 03 January 2013

LCP. If it wasn't so serious it would be laughable. My Mother was to me a victim of LCP. Don't listen to the media, don't you mean the doctors. Its so easy for the doctors to say, well we tried everything and the best we could do is let her/him die with some dignity. Oh you mean with severe mouth ulcers. She was in content pain and I asked the doctors to treat this apart from her other illnesses. They placed a large NIV marks on her face for most of her time in hospital without any mouth care at all which led to the pain she suffered before her death. Once they placed her on LCP on the Friday night before she died,there would be no more monitoring, no more water and no more interest. They completely ignored her, so much so that on the Friday her urine reservoir was so full it spilt onto the floor, even when I highlighted this they took 45 mins to empty it. The day she passed away, the head consultant marched into her room with 4 other medical staff where we were trying to look after our mother and demanded and shouting to know what complaint we had made. We hadn't any idea what he was talking about and he kept saying "I'm speaking turn around" to all of us who were trying to give mouth care to our mum. He did calm down eventually when he realized he got it wrong after 45 mins later. (Time he stole from us with mum). As for pain relief, well all she kept doing the past two weeks up to the moment she passed away was sticking her tongue out as she couldn't speak. I gave her water each night and it was full of blood. By the time I had done this a few times the water in the glass was clear. Each time I spoke to the doctors they gave me different answer about her health. I could go on but to say starving someone of vital liquids at the age of 82 with loads of morphine to end her life, is that what they call caring? NHS using LCP as a cheap alternative to a hospice which is specialized in treating terminally ill patients. They never explained LCP to us.

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bionicmoggie said on 08 November 2012

My mother is 91 and absolutely terrified that she will die a painful death because of the Liverpool Care Pathway. She has made me promise that if she is taken into hospital I will stay with her day and night.
Whilst this article points out the purpose of the Pathway (which is clearly meant to cause the patient less pain and distress than if they weren't on the scheme), it doesn't appear to be being applied according to the rules. Even nurses have commented on the Daily Mail website that they can't keep very ill old people in hospital beds and this is the best way to get rid of them sooner rather than later!!
In my view if the patient is conscious and wants water/food then they should be given it - dying with dignity does not mean dying in agony.
I also feel that the patient or a close relative should sign a consent form for them to be put on the Pathway. Isn't it strange - I agree with voluntary euthanasia but not such a decision made by a stranger.

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whiskymike said on 05 November 2012

A friends mother aged 91 was in a walsall hospital with a quiet minor complaint. her children happened to visit and queried why there was a notice above mother's bed nil by mouth. They objected and were told mother had been placed on the Liverpool care Plan, they therefore started to assist mother with food and drink at which point staff placed another notice above the bed suggesting there was danger in feeding the patient.
Subsequently the friends removed their mother from the hospital, their mother subsequently went on a Mediteranean cruise.
This careplan seems to being used on occassions to get rid of the old folks of which I am one, and I am stillpaying as much tax as when I was at work

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amcatpur said on 03 November 2012

My mother was put on the Liverpool Care Pathway in August 2011. I was not consented and when I objected the hospital said she had been on it for several hours and it was to late to take her off it, they said she would die regardless of being placed on the LCP it would just make death quicker. They noted my concerns, but informed me the decision to place her on the LCP was theirs. I don't know if they pumped her full of morphine, but the day before she was placed on the LCP she was sitting up trying to drink. Once on the LCP the staff ignored her, I had to make a complaint to the doctors just to get her mouth care. I don't feel it was a painless death as my mother clutched her head with severe headaches caused by the dehydration her face racked with pain. Severe cramps in her legs brought tears. The Liverpool Care Pathway is nothing more than a death sentence, don't let someone you love be placed on it without understanding that this Care Pathway means certain death. Waiting to see what happens can mean years more of meaningful life. People who have been rescued from the LCP by relations and are alive today will tell you that..

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Arda Elee said on 03 November 2012

This article misses some of the points of the criticisms. It does accept the the LCP does not always work well in practice (due to poor training, low skills, incompetence etc) however patients rights are limited. Patients can only opt out of treatments. They cannot opt in. They cannot demand to be given water and nutrition, they can only opt not to receive it. This means if the local MDT decides it is time to stop treatments including basic hydration then there is nothing the dying patient or their family can do about it. The family are consulated but their wishes can and often are over-ridden by 'professionals'. Some patients may prefer to hand all rights to their loving family members than to paid strangers who work in a hospital or hospice. The LCP is not perfect for everyone and patients should have the right to avoid the protocols it sets.

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Analysis by Bazian

Edited by NHS Choices

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