Liverpool Care Pathway

Robert Flello Excerpts

Tuesday 8th January 2013 Westminster Hall

[Rosie Cooper (West Lancashire) (Lab)]

It is a pleasure to serve under your chairmanship, Mr Weir. I congratulate the hon. Member for Montgomeryshire (Glyn Davies) on securing this essential and timely debate.

As hon. Members and the Minister will know, opinions on this end-of-life care framework tend to be polarised, but I believe that fundamental questions need to be answered about how the Liverpool care pathway has fallen into such disrepute, when it was developed to help doctors and nurses provide quality end-of-life care for the dying. That involves palliative care options for patients in the final hours or days of life, not a procedure that some members of the public now regard as a way prematurely to kill off the terminally ill or senior citizens.

The hon. Member for Montgomeryshire has outlined the process in which the Liverpool care pathway should work, involving significant communication if possible with the patient, but certainly with their next of kin and family. I share his support for the framework when it operates properly and allows the dying to die with dignity and free of pain. Why are there so many stories in the press of distressed families complaining that they did not know that a relative had been put on the pathway? The huge problem lies in the human application of the rules, not necessarily in the rules themselves. One in three families of those dying say that they never received the leaflet explaining the LCP process that they should have been given. Why is it not mandatory to evidence in the notes discussions with the patient or the family about the Liverpool care pathway?

Some would say that the difference between a multidisciplinary team decision, taken with the family’s knowledge and consent, and a decision taken in isolation could be seen as murder or at least manslaughter. The stark reality of the Liverpool care pathway is that 57,000 patients a year are dying without being told that efforts to keep them alive have been stopped. In some respects, there are parallels with the cases of Mid Staffordshire NHS Foundation Trust and University Hospitals of Morecambe Bay NHS Foundation Trust, which were supposed to be operating the same system as that in every other NHS trust in the country and yet somehow ended up abjectly failing their patients, so that people died unnecessarily. The sheer scale of the failure to inform people, or their relatives, that they are on the pathway opens up the practice to attack.

People talk about back-door euthanasia and some say that it is tantamount to assisted death, except that in 57,000 cases people were not aware that they were being assisted. That has to be added to the cocktail of the timing and the context of where we are now. The NHS is saving £20 billion over four years. There are service pressures—the lack of available beds and severe cuts in social services budgets that result in bed blocking, together with the demands of an aging society—but, frighteningly, as we have become aware via the press, at the same time hospital trusts receive financial incentives for achieving certain performance targets in putting people on the Liverpool care pathway.

Let me be clear—not for one second am I suggesting that those factors are part of the decision-making process; I use them merely to highlight the fundamental problem of the pathway and the perception that exists in the wider public, especially among the elderly.

Why do hospital trusts require any financial incentive to follow the Liverpool care pathway? For me, that question goes to the very heart of our national health service and our absolute understanding of what the medical profession stands for in people’s eyes. We believe that it is the role of the NHS and medical professionals to take every conceivable step to preserve life until the options are exhausted. The Department of Health has proposed to enshrine in the NHS constitution, as a patient right, an entitlement to be informed of any consideration about placing a patient on the Liverpool care pathway. Why can that not be made a legal requirement, so that everybody knows—and we are sure that everybody knows—and can be assured that taking such a decision is right?

[Robert Flello (Stoke-on-Trent South) (Lab)]

I add my congratulations to the hon. Member for Montgomeryshire (Glyn Davies) on securing this important debate. To go back to the hon. Lady’s point about the financial incentives for hospitals, it appals me, too. Surely, if patients or their families are not consulted, the Liverpool care pathway is not being followed, so any payment by the Department of Health to a hospital for having supposedly had someone supported by the pathway is money paid wrongfully, deceitfully and possibly unlawfully. Does she therefore agree that the Department should tell hospitals that have failed to consult family and friends or the patients themselves that the Department wants back some of that money?

[Rosie Cooper]

That takes me back to my earlier point that we should document the conversations with families, so that that would be the tick box for payments. I am running out of time, so I shall move on quickly.

Will the Minister elucidate how the NHS constitution requirement will make a difference? Procedures are already in place, yet 50% of patients on the pathway were not informed, or their families were not consulted. It is time that the soundbite, “No decision about me without me” became a principle and a value, rather than the vacuous phrase that it currently is. There is no politics in that—it is really important; it is the core of everything.

Through Lord Alton of Liverpool, I am aware that Liverpool medical school requires all its students to undertake one month’s training in the care pathway, working in a hospice during their fourth year. Such good practice should surely be a core component nationwide, and in the light of a recent study, there is perhaps an argument for making it mandatory across the country. That kind of training needs to be given to those already qualified and working on our wards—not just doctors, but nurses and all members of the multidisciplinary team who are called on to make decisions. If there have to be financial incentives, they should follow the training to ensure that all those who care for the terminally ill and dying are properly equipped with the skills that they need, in what for all concerned are traumatic and often complex situations. Good training costs money and must be externally validated, and I invite the Minister to respond specifically about that need.

I see merits in a system that manages end-of-life care effectively—it is a measure of our humanity that we seek ways to ease suffering—but my concerns about the application of the Liverpool care pathway remain. There is far too little reassurance in the system, which has allowed the pathway to move from an end-of-life care system to one that is held up as hastening death. We can talk about the theory of how the LCP should be followed, but the fact remains that, in practice, it is not always implemented as intended. It should never be seen as a conveyor belt to the cemetery. Some 80,000 patients are supported by—not put on—the Liverpool care pathway, and many receive the finest care, but many is not good enough. It is said that about 1% of cases go badly wrong, but just one case—never mind 1% of cases—is one too many. Those who founded the pathway did so because of their respect for the dignity of patients; those who implement it need to understand and share that view or face the legal consequences and their own consciences.

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[Mr Edward Leigh (Gainsborough) (Con)]

I am glad to have this opportunity and I thank my hon. Friend the Member for Montgomeryshire (Glyn Davies) for raising this important subject. We all know that the Liverpool care pathway was devised with the best of intentions. I assure my hon. Friend the Member for Banbury (Sir Tony Baldry) that none of us wants to end or take away palliative care. We all want to relieve pain and we all want people to die with dignity, but there are serious concerns about the Liverpool care pathway and that is why this debate is so important. Those concerns have been expressed by physicians. It was physicians—ethicists—who started this debate, not the newspapers. The newspapers did not start the ball rolling and we should be aware of that. Professor Peter Millard, emeritus professor of geriatrics at the university of London, and Dr Peter Hargreaves, palliative care consultant at St Luke’s cancer centre in Guildford, have warned of the risk of “backdoor euthanasia”—their words—and that economic factors are being included when treatment is considered. We must be aware of these concerns, which were originally expressed by clinicians. However, I believe that it is one of the chief duties of those of us in this House who are not clinicians to speak up in defence of the vulnerable, the voiceless and those who are sometimes forgotten.

It is simply unacceptable that vulnerable people, including the poor, the elderly and those who do not have close friends and family to look after them, come to a premature death—an unnecessarily early death. As my hon. Friend the Member for Congleton (Fiona Bruce) and others have said, in numerous cases, even friends and family caring for a loved one have not been informed that they have been put on the LCP. May I say that my hon. Friend’s speech was a wonderful speech? It drew on her personal experience and was one of the most moving speeches that I have heard in this place over many years.

I sat with my best friend, Piers Merchant, as he was dying; he was a former MP and my hon. Friend the Member for Banbury (Sir Tony Baldry) will remember him well. I saw the morphine being pumped through his body. I am sure that he died early—perhaps a few hours or even a few days early, I do not know—from the morphine. Those of us who loved him wanted him to be cared for properly, but we also did not want him, or any of our loved ones, to be put on an irreversible path to death where that was avoidable.

I welcome the statement by the Department of Health that it

“has consistently made clear that care provision, including for people at the end of life, should be based on need.”

But the question that we need to ask in this debate is this: how are the Department’s intentions implemented on the front line of medicine and hospital care? No doubt there is wonderful care being given in many hospices, but is that gold standard being replicated in all our hospitals?

It is undoubtedly true that the LCP has led to the premature death—it may not be premature by much, but it is still a premature death—of as many as 130,000 hospital patients each year. This is a vital issue that we must address in this House; with 450,000 hospital deaths in Britain each year, that figure of 130,000 is about 29% of the total number of hospital deaths. In fact, this is a frightfully serious issue.

[Robert Flello]

Will the hon. Gentleman give way?

[Mr Leigh]

Does the hon. Gentleman mind if I do not give way? I just want to make my speech and give my hon. Friend the Member for Plymouth, Sutton and Devonport (Oliver Colvile) a chance to speak too.

Professor Pullicino, who was quoted earlier, has himself personally intervened to have a patient taken off the LCP who went on to be successfully treated. So, despite the fact that we must listen to clinicians, it is simply impossible to determine satisfactorily that a patient has hours or days left to live, which is one of the worrying flaws of the LCP.

In November, an independent inquiry into the LCP was announced, and I welcome that announcement. My hon. Friend the Minister is doing his job extremely well in this regard, and we respect him as somebody who will genuinely try to get to the truth. He himself has said that there have been too many cases of patients dying on the pathway while their families were not informed, so he is quite right to zero in on that issue. He has said, “This is simply unacceptable.” I echo those words and I hope that he will repeat them when he winds up the debate.

Of course there are people who speak on both sides of this issue, but I believe that any inquiry must be conducted by a suitable variety of individuals and not just by supporters of the LCP. It is not good enough to state, as the Department of Health sometimes does, that the LCP is not euthanasia. It might not be euthanasia and, of course, if it is implemented properly it is not euthanasia. However, it has become obvious to many people that the LCP can be employed, and indeed has been employed, in cases that are highly questionable.

I say to those who have spoken today that what worries me is this: why is it that the average time to death on the LCP is 33 hours? An identical figure for average time to death was found in two consecutive national audits that were conducted two years apart. In the view of many people, that shows that the LCP has a machine-like efficiency in producing death within 33 hours, and that is why some people say that the LCP is in effect a “lethal care pathway”. Statistics suggest that fewer than 5% of patients put on the LCP are taken off it. Why only 5%? There is something wrong here, and the inquiry needs to get to the bottom of it.

I believe that we should appoint a member of the judiciary rather than a medical expert, to carry out the inquiry. Of course, they will have medical advisers, but we should appoint a member of the judiciary rather than just a medical expert to lead the inquiry, so that they can look at this complicated issue with a fresh perspective and a judicial mind.

Thank you for calling me to speak, Mr Weir. In conclusion, I believe that we have a duty to instil confidence in each of the citizens and residents of this country that they live in a society that believes in their inviolable dignity as human beings, and that takes the necessary steps to ensure that they are cared for and looked after when they are ill, especially in the closing moments of their life.

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[Liz Kendall (Leicester West) (Lab)]

It is a pleasure to serve under your chairmanship, Mr Weir. I congratulate the hon. Member for Montgomeryshire (Glyn Davies) on securing this extremely important debate and on his heartfelt but calm and thoughtful opening speech, which set exactly the right tone. How we care for the dying is a measure of how we care for all sick and vulnerable people. It is a litmus test not only for the NHS and the wider care system but for society as whole.

This debate comes at an important time because, as the hon. Gentleman said, in recent months growing media attention has been paid to the Liverpool care pathway. Several Members have talked about the misconceptions and the inaccurate information that has been published about it. I have read the recent consensus statement from 22 patient and professional organisations and also the full care pathway documentation, and it is clear to me that the Liverpool care pathway is not in any way about ending someone’s life but about supporting the delivery of excellent end-of-life care.

The pathway does not seek to replace clinical judgment; it is not a treatment but a framework for good practice. It does not seek to hasten or indeed delay death, but to ensure that the right type of care is available for people in the last days or hours of life, when all the reversible possibilities for their condition have been considered. I do not believe that it is a deadly or lethal one-way street. Precisely because it is not always easy to tell whether someone is very close to death, the pathway emphasises the need for constant and regular review, and if a patient’s prognosis changes, their care needs should be reassessed and, if appropriate, the use of the pathway stopped.

The pathway does not preclude the use of clinically assisted nutrition or hydration; in fact, it explicitly states that patients will be supported to eat and drink for as long as possible. It absolutely emphasises that wherever possible patients must be involved in decisions about their care, and that carers and families should always be included in decision making. Such involvement of patients and families is enshrined at the very heart of the Liverpool care pathway.

[Robert Flello]

Does my hon. Friend agree that if there is no consultation, and there is denial of care and of treatment that eases pain, it is not the Liverpool care pathway?

[Liz Kendall]

I absolutely agree. The issue we face is less about the pathway itself and absolutely about how it is implemented in practice. The pathway document states on its very first page that the pathway is only as good as the teams who use it.

There has clearly been an issue about taking a pathway that was developed by experts in one part of the country over several years, with regular training and audit, and trying to implement it across the wider NHS. Individual patients and families—as we have heard—and also the national audit of the Liverpool care pathway, suggest that there are genuine problems with communication. Too many patients and families are not properly informed about what the pathway is and how it works, and they are not effectively involved and their consent not sought at every stage and on all the necessary decisions. One incident in which patients and families are not fully and sensitively involved is one too many. It is not acceptable, and it directly contradicts the very essence of the Liverpool care pathway and its key principles and values.