Liverpool Care Pathway

Rosie Cooper 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.

--- Later in debate ---

[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.

[Rosie Cooper]

Will my hon. Friend give way?

[Liz Kendall]

If my hon. Friend does not mind, I will not give way as I do not have much time.

I welcome the fact that the issues are now being looked into. I understand that three separate reviews are being undertaken. The national end-of-life care programme is doing a short, snapshot review of complaints about the use of the Liverpool care pathway, the Dying Matters coalition is working with families whose loved ones have been on the pathway, to see what worked well and what did not, and the Association for Palliative Medicine and a range of other national organisations are talking to clinicians, to get their opinions regarding integrated care pathways in the last days of life, of which the Liverpool care pathway is one.

In November, the Minister said he would appoint an independent chair to co-ordinate the work of the different reviews, so I ask him: has a chair now been appointed? Will the chair, the Department of Health or any other organisations consider any additional issues, alongside the work that is under way? For example, will the way in which the Liverpool care pathway is paid for be reviewed? It is important that hospitals receive proper payment for the care they give and for any associated training, but any evidence that patients are being put on a pathway for financial reasons is a serious matter and is totally unacceptable.

Will there also be a review of the education and training in end-of-life care for new and existing staff, in particular training in how to discuss difficult, complex and emotional issues with patients and their families? One of the real challenges is that the process of death and dying is so uncertain. A patient’s prognosis is not always clear; the situation changes. Doctors are used to treating and curing, giving clear evidence, treatment and advice—or they are trained to do so—but it is not always possible.

I want to finish on a broader point, which is important for us in this House. The difficulty that NHS and care staff, the media, families and the public have in discussing end-of-life care reflects wider society’s lack of familiarity with death and dying, which was not the case 100 years ago. Age, cause and place of death are generally very different now from what they were at the beginning of the last century, when a far greater proportion of deaths occurred in childhood or early adult life, often from acute infections, with most people dying at home. Now, more than two thirds of the 500,000 deaths a year are among people aged over 75, most of them following a long-term illness such as heart disease, cancer, stroke, chronic respiratory disease or dementia, and most are in hospitals and care homes.

Many people do not, therefore, experience the death of a loved one until they are well into mid-life. We do not see dying people and dead bodies—not for real. We see them on television and in computer games but not in real life, and we do not talk openly in society about death. I know that in all our families it is difficult to discuss death, but in the century of the ageing society, with chronic conditions as the major cause of death and disease, that must change.

As the hon. Member for Banbury (Sir Tony Baldry) said, death comes to us all, and we should strive for as good a death as possible. That will, of course, mean different things to different people—I would like to go quickly, and I hope that the people I love go quickly, too, and do not have a long, slow death.

[Rosie Cooper]

We will not be bumped off.

[Liz Kendall]

Indeed, or have a premature death. For many of us, a good death means being treated as an individual with dignity and respect, without pain and suffering wherever possible, and in a familiar environment surrounded by the people we love. We need a full and frank debate about these difficult issues, handled calmly and sensitively and based on evidence and fact rather than on myths and misconceptions. Dying matters, not just to the NHS and the wider care system but to us all, and for that reason I am grateful to the hon. Member for Montgomeryshire for securing the debate.

[The Minister of State, Department of Health (Norman Lamb)]

I do not have a Parliamentary Private Secretary sitting behind me, and I am most grateful therefore to you, Mr Weir, for your assistance with some Members’ constituencies.

I congratulate the hon. Member for Montgomeryshire (Glyn Davies) on securing the debate, and on the sober, serious and rational tone he deployed in his contribution. The whole debate, in fact, has been exemplary in that regard. I suspect that all of us in this room are after the same thing; it is how we secure it that matters so much. I have just over 11 minutes, which is not really enough to do justice to every contribution, so as soon as I possibly can, I will write to all the Members who have taken part, to update them.

I take the Liverpool care pathway extremely seriously. It has been much discussed recently: many hon. Members and members of the public have written to the Department of Health expressing their concerns, and there have been numerous parliamentary questions, too, all of which stems from a lot of media interest over the past few months. Several stories have appeared discussing the ways in which the LCP is used and what it is for. In particular, there have been a number of reports in the media alleging that patients are being placed on the LCP secretly, with no consultation with them or their relatives. It has been suggested that the LCP routinely involves medical staff withdrawing treatment, including food and fluids, from patients. Perhaps most seriously, the LCP has been accused of being a way to kill patients to save the NHS money. There have been suggestions that the Department of Health bribes hospitals with extra money for every patient placed on the pathway.

Those accusations paint a misleading picture of the purpose of the Liverpool care pathway, yet I take seriously the concerns raised by the families of patients who have experienced extremely poor end-of-life care. I am horrified by some of the stories that people have told me about the withdrawal of food and fluids from sick relatives in hospital and about the failure to inform loved ones that the patient has been placed on the pathway.

The hon. Member for Congleton (Fiona Bruce) spoke movingly of her experience, and I am pleased that she came to the round table that I held to discuss those concerns. As the hon. Member for Gainsborough (Mr Leigh) made clear, the concerns are legitimate and should be taken seriously, not dismissed because of exaggerated reporting. What happens on the front line and how we translate theory into practice are so important.

I agree with my hon. Friend the Member for Southport (John Pugh). I dislike the jargon: what on earth does “Liverpool care pathway” mean to patients and their families? We must use language that ordinary people understand, particularly at a most traumatic time for all involved. That is one thing we need to address.

One aspect of care that receives almost universal praise, as the hon. Members for Banbury (Sir Tony Baldry) and for Hackney South and Shoreditch (Meg Hillier) have made clear, is the hospice movement, which grew from Dame Cicely Saunders’s belief that, however ill, people matter at the end of their life and should never be abandoned. That is why the Marie Curie Palliative Care Institute Liverpool, led by Professor John Ellershaw, developed the Liverpool care pathway in the late 1990s. The pathway was designed to transfer the principles of hospice care—the shadow Minister, the hon. Member for Leicester West (Liz Kendall), made this point—so that terminally ill patients always get the best treatment, even if they do not receive specialist palliative care.

The Liverpool care pathway is not a treatment but a framework for managing treatments, which is important to understand. As the hon. Member for Montgomeryshire made clear, the LCP, when used correctly, is one way to ensure that the last hours or days of a patient’s life are as comfortable as possible. The guidance for using the LCP makes it clear that the aim is to support, not replace, clinical judgment. Sometimes there are questions about clinical judgment, but not about the pathway itself.

The Liverpool care pathway guidance sets out the following objectives and considerations for taking care of patients: determining whether any further medications and tests would be helpful; ensuring that the patient is as comfortable as possible—surely we all agree with that; helping the patient to take on food and drink for as long as possible, which means not denying them food and drink, as we sometimes hear; and taking care of the patient’s spiritual and religious needs, which is of acute importance to many people. The guidance reminds clinicians that unnecessary treatment or tests may cause harm rather than good.

The guidance states that regular review is acutely important. If their condition improves, the patient should be taken off the pathway. The 5% figure to which the hon. Member for Gainsborough referred is of concern and should be considered; it is essential that the medical team discusses the pathway with the patient, their family or their carers. Those people need to be fully involved in decisions about end-of-life care, even though those discussions may be very difficult. Obviously, those conversations need to happen as quickly as possible.

The Liverpool care pathway can work as intended only if each patient is fully consulted, unless that is not possible. Even then, the family must be fully involved. Through his interventions, the hon. Member for Stoke-on-Trent South (Robert Flello) made that point strongly. The opening section of the information sheet that comes with the pathway cites the absolute importance of discussion with the family. Staff must talk to the patient and their family as much as they need and want, to explain what is happening and why. That is non-negotiable. Any failure to do so is completely unacceptable.

The hon. Member for West Lancashire (Rosie Cooper) mentioned documentation, which is best practice and should always happen so that everyone can see what has been discussed. She also mentioned the constitution, and we are considering how we can give it greater traction. There is a sense that everyone agrees with the constitution, but what value is it? How can we make the constitution provide real power to patients in the NHS?

I agree with the shadow Minister’s concerns about translating across the whole system something that has been designed by experts. Such translation can be problematic and needs further attention.

[Rosie Cooper]

rose—

[Norman Lamb]

I am conscious that time is tight. I will write to the hon. Lady. If she wants to raise issues with me later, I will be happy to address them, but I need to respond to the debate.

From what people have said, it is clear that there are too many cases where patients have been put on the pathway without proper explanation, without the involvement of their family and sometimes without any notification, which is totally unacceptable. Yet again, we see how right Dame Cicely Saunders was when she said:

“How people die remains in the memory of those who live on”.

The impact is profound. My wife works for Cruse Bereavement Care, which does magnificent work helping people who have suffered bereavement. We have a duty to give such people the best possible experience as they lose a loved one.

On 26 November, I hosted a round-table meeting with patients, families and professionals—both supporters and critics of the pathway were represented—and at that meeting I announced that we will appoint an independent chair to consider how the LCP is used and experienced and to examine the accusations made in the press. We expect to announce the chair of that review very soon, and we expect that the chair will want to identify a small panel of independent experts from a range of backgrounds, including representatives from faith groups, which is important. I reassure hon. Members that the review will be independent.

The Liverpool care pathway is internationally recognised as good practice, and it is widely supported by organisations involved in end-of-life care. If people do not feel that they have received the best care or, worse, if patients cease to trust the pathway, that is a problem that needs to be addressed.

Training is fundamental, as the hon. Members for Hackney South and Shoreditch and for Congleton and the shadow Minister said, and it will be considered as part of the review. The review will systematically examine the experience of the Liverpool care pathway by patients, families and health professionals, and it will seek evidence to support or refute the accusations and to see where improvements might be needed. The review will hear directly from families. There will be a session dedicated to families so that they can tell the panel about their experiences.

The review will also consider the role of financial incentives in the use of the LCP. Like my hon. Friend the Member for Southport, the hon. Member for West Lancashire and others, I have concerns about the use of financial incentives. The review will report both to the Department of Health and to the NHS Commissioning Board by the summer.

Everyone wants their loved ones’ final hours to be as pain-free and dignified as possible. Used as intended, the Liverpool care pathway can help achieve that. The pathway prioritises comfort, dignity and appropriate care, but all that is undermined if the public distrust the pathway and if clinicians do not apply it properly. We do not dismiss people’s concerns, which I take extremely seriously. Instead, we have to ensure that care in the last few days and hours of life is always of the highest standard. Reinforcing the absolute importance of involving patients and their families in discussions on their care and treatment is essential.