Liverpool Care Pathway - The Westminster Hall Debate

This is Westminster Hall Private Members’ Debate: Liverpool Care Pathway – Glyn Davies:

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WESTMINSTER HALLTuesday 8 January 2013

Westminster Hall Meeting started on Tuesday 8 January at 2.30pm. Ended at 5.01pm Private Members’ Debate:  Liverpool Care Pathway – Glyn Davies Private Members’ Debate:  Funding for schools and sixth-forms in Cambridgeshire – Dr Julian Huppert Private Members’ Debate:  Trends in donations to charities – John Robertson

Mr. Davies, the right honourable member for Montgomeryshire, spoke his lines well. It is not known if he has an interest in amateur dramatics, but he might well consider this an option. To learn his lines so completely and so well, word for word from the DOH and LCP handouts is quite an achievement. Of course, this can be a problem when it is necessary to have some insight and knowledge of the facts behind the figures and the real-life figures behind the fact of those condemned upon this pathway.

Mr. Davies fell at a few hurdles and his ride was fraught with issue raised by fellow MPs who were there to represent their constituent members rather than their own oar to brandish, as was Mr. Davies.

All in all Mr. Davies played the part of the perfect monkey dancing to the LCP organ grinders' tune.

The transcription of the debate follows -

Andrew Bridgen raises his concerns about the Liverpool care pathway

Speaking during a debate on the Liverpool Care Pathway, Andrew Bridgen raises his concerns that local anecdotal evidence suggests that there is little opportunity for patients to be taken off the care pathway if they improve.

Andrew Bridgen: I thank my hon. Friend for calling this very important debate. I, too, share some of his concerns about the consistency with which the Liverpool care pathway is implemented across the country. I made some inquiries in the hospitals that serve my constituents, but information seemed to be lacking on the implementation of the care pathway. I am particularly concerned that patients placed on the pathway may have no opportunity to be taken off it if they improve. There are no figures on the number of patients for whom care has been reintroduced after being placed on the pathway. One of the hospitals told me, anecdotally, that no one there could remember anyone being taken off the pathway. I find that worrying.

Westminster Hall

Tuesday 8 January 2013

[Mr Philip Hollobone in the Chair]

Liverpool Care Pathway

[Mr Mike Weir in the Chair]

2.30 pm

Glyn Davies (Montgomeryshire) (Con): Mr Weir, I would like to say how much of a pleasure it is to serve under the chairmanship of a fellow Celt. I declare an interest as a board member of Living and Dying Well, which specialises in research into and opposition to the legalisation of assisted suicide.

I shall begin with a summary of the current position. The “Liverpool Care Pathway for the Dying Patient” was developed by the Marie Curie Palliative Care Institute Liverpool as a framework for health professionals to use to ensure that people who are dying have as comfortable and dignified a death as possible. The pathway was developed and has been in use since the 1990s. Today, about 130,000 of the 450,000 patients who die in hospital care every year die while being cared for on the pathway. It has also been exported and is now in use in more than 20 other countries.

However, during the past few months, the Liverpool care pathway has been the subject of some very serious criticisms and allegations in the media, which has led to questions about whether it is indeed a worthy process. I shall explain why I sought this debate and the outcomes that I would like to achieve before considering in greater detail the criticisms that have been made of the pathway.

By any measure, the Liverpool care pathway plays a very significant role in how the end of life is managed in our country. Its role is much greater than most of us realise: 30% of patients who die in hospital care die while on the pathway. The sheer scale of this is why I believe that debate about it is too important to be led by national newspapers, although I certainly do not criticise those newspapers for reporting stories in the way they have done. Indeed, they have served a valuable purpose by raising public awareness of such an important issue. However, there is, almost inevitably, a tendency for newspapers to couch the debate in sensationalist terms. It is up to us as parliamentarians to ensure that this complex and potentially controversial issue is subject to balanced and thorough debate in the House of Commons.

The outcome that I seek today is calm reflection by parliamentarians, including those on the Front Benches, on this most sensitive of issues—calm reflection on the issues without encouraging the spread of alarm and despondency among those entering care, which can result from sensationalist allegations. I also seek a response from Government—from the Minister—that they will ensure that the review on which they have already embarked includes careful and thorough investigation of the allegations that have been made of bad practice. It is important to know whether the allegations are accurate and, if they are, where the weaknesses lie and what needs to be done to put those matters right.

I am a supporter of the Liverpool care pathway, but my aim today is not to defend or to attack the pathway, those who have made allegations of shocking bad practice, or the media, which have given the allegations such great publicity. It is to promote open and genuine debate in Parliament. In any case, I am not in a position to judge how much substance there is to the various 

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criticisms that have been made, but I do know that we cannot avoid death and I also believe that most people do not fear death so much as they fear the process of death. The aim of the Liverpool care pathway is to ensure that the process is as compassionate, dignified and free from pain and discomfort as possible and, importantly, consistent with public safety. Our aim should be that the pathway is used in a way that retains public confidence—that it is being used in accordance with the principles on which the Marie Curie Palliative Care Institute developed it.

I hope that the Minister will agree that we must ensure that the pathway is subject to the very highest levels of scrutiny and that the framework can be allowed to be implemented only against a background of total transparency. There must be discussion with patients or with patients’ families or carers and there must be clearly available avenues through which complaints and concerns can be channelled. I hope that the Minister will assure us that the very serious allegations reported in the media will be thoroughly investigated and that, if any examples of bad practice are found, action will be taken to expose those responsible, to hold them to account and to do everything possible to prevent it from happening again. The experiences at Winterbourne View and hospitals in Worcestershire and the appalling and chilling events that took place in Stafford are too raw in the memory to allow anything else. It is only through audit and disciplinary measures, if and when appropriate, that the Liverpool care pathway will retain the integrity needed for it to be acceptable and the confidence of those who might use it.

Two years ago, I had never heard of the Liverpool care pathway. I first took an interest in it as a consequence of my concerns about and opposition to the legalisation of assisted dying. I was hugely surprised by how widely the pathway was in use. I had no idea that 130,000 patients in hospital care died while on the pathway every year and I do not think that many people realise that today.

Jonathan Evans (Cardiff North) (Con): I am grateful to my hon. Friend for giving way to a fellow Celt. I congratulate him not just on securing the debate, but on the tone in which he has introduced it. He referred to the number of people who are on the Liverpool care pathway, but to help the debate has he done any work on the expansion in numbers since the 1990s? Did we swiftly move to 130,000? Is that a consistent number, or has there been a gradual increase over time? I ask that because of course it is the rolling out of the pathway that may lead to some people having less expertise—less skill—and then, as a result of that, some of the instances that my hon. Friend refers to some poor reporting of?

Glyn Davies: My hon. Friend makes a very important point about the need for training and expertise for all those who are responsible for putting people on the pathway and for looking after them when they are on it. I want to come to that later in my comments.

The negative coverage in our national media has probably increased awareness of the Liverpool care pathway. To that extent, I think that it has been a very good thing, but because I do not believe that the scale of the pathway is widely known, I think that it is right to say something about what the Liverpool care pathway is and what it is not in order to set out the context of the 

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debate,. It is certainly not and must never be any form of “euthanasia by the back door”—a phrase that I have heard—nor is it a form of clinical treatment or even any specific type of care. It does not instruct doctors or nurses to provide this or that treatment. What it does is prompt them to consider whether certain treatments are appropriate in individual circumstances. It supports—it does not replace—clinical care. It is no more than a framework of good practice, backed up by training and education, to guide doctors, nurses and other health professionals towards delivering the high levels of palliative care that have been available in hospices for many years. It enables them to be transferred to hospitals, care homes and patients’ homes. It is about the appropriate way to look after a patient who is clearly dying through the last few days and hours of life.

Some other points should be made in this debate. The Liverpool care pathway does not recommend, as some have suggested, that dying patients should be deprived of food and water, although food and water may be withdrawn in individual cases if clinicians believe that that is the right step to take. The Liverpool care pathway does recommend to doctors and nurses that they explain to dying patients, or more often their next of kin, exactly what is happening and why. Secrecy forms no part of the Liverpool care pathway whatever.

It is also important to emphasise that there is nothing irreversible about being placed on the Liverpool care pathway.

Andrew Bridgen (North West Leicestershire) (Con): Will my hon. Friend give way on that point?

Glyn Davies: On that point, I will, yes.

Andrew Bridgen: I thank my hon. Friend for calling this very important debate. I, too, share some of his concerns about the consistency with which the Liverpool care pathway is implemented across the country. I made some inquiries in the hospitals that serve my constituents, but information seemed to be lacking on the implementation of the care pathway. I am particularly concerned that patients placed on the pathway may have no opportunity to be taken off it if they improve. There are no figures on the number of patients for whom care has been reintroduced after being placed on the pathway. One of the hospitals told me, anecdotally, that no one there could remember anyone being taken off the pathway. I find that worrying.

Glyn Davies: My hon. Friend makes a very good point. Patients on the pathway should be monitored regularly, and if the patient shows signs of rallying, as does happen in a minority of cases, the treatment should be modified to support recovery. If that is not happening, the pathway is not being implemented properly. The Liverpool care pathway is not a pathway to death —a phrase I have seen used often, but which I think is unbelievably awful. It is a travesty of the truth to describe it as a form of euthanasia.

Why have we reached the point of huge public controversy, which has caused so much angst and fear? It has arisen from allegations—serious allegations, some of them from doctors and nurses—that the pattern of end-of-life care I have described has not been followed in some cases. There have been stories of dying patients 

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being deprived of the food and water they needed and others being kept continuously sedated until they died; and of patients being placed on the pathway without consultation with them or their families, or to meet targets. The fear of that is especially shocking, and I hope the Minister will comment specifically on the issue of targets.

Let me look at some of the allegations in more detail. According to the Daily Mail in June last year,

“NHS doctors are prematurely ending the lives of thousands of elderly hospital patients because they are difficult to manage or to free up beds”.

The report is based on a presentation to the Royal Society of Medicine by Professor Patrick Pullicino, a consultant neurologist. He stated:

“The lack of evidence for initiating the Liverpool Care Pathway makes it an assisted death pathway rather than a care pathway.”

That is the debate being led by the Daily Mail. Professor Pullicino continued:

“Very likely many elderly patients who could live substantially longer are being killed by the LCP.”

Imagine how a frail elderly person entering hospital a few weeks after reading that would feel. Professor Pullicino added:

“Patients are frequently put on the pathway without a proper analysis of their condition.”

According to the Daily Telegraph, in September, a group of experts stated in a letter that

“dying patients…can…have fluid and drugs withdrawn and many are put on continuous sedation until they pass away.”

The letter—again according to the Daily Telegraph—spoke of a “national crisis” in patient care, and

“a national wave of discontent…building up, as family and friends witness the denial of fluids and food to patients.”

According to the newspaper, some patients were wrongly being put on the pathway, which created a “self-fulfilling prophecy” that they would die. The report continued:

“Patients who are allowed to become dehydrated and then become confused can be wrongly put on this pathway”,

and,

“many doctors were not checking the progress of patients enough to notice improvement in their condition.”

Those are shockingly serious allegations. If they are true, urgent corrective action is needed.

There is another side to the equation, however. More than 20 respected organisations, including the Department of Health, Age UK, the Alzheimer’s Society, Macmillan Cancer Support, and the Royal Colleges of Physicians, General Practitioners and Nursing, have signed a declaration that:

“Since the late 1990s, the Liverpool Care Pathway has been helping to spread elements of the hospice model of care into other healthcare settings”.

It mentions:

“Published misconceptions and often inaccurate information”—

referring, I think, to the stories in national newspapers I have quoted. Our task and the Minister’s is to reconcile the support of all those organisations for the Liverpool care pathway with the allegations made—in good faith, I am sure—by people who believe that the pathway is what they call a pathway to death.

Any tool is only as good as the workman who uses it. The declaration states clearly that the Liverpool care pathway:

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“Relies on staff being trained to have a thorough understanding of how to care for people who are in their last days or hours of life.”

We have to face the fact that, in most professions, there are instances of excellence and malpractice, and health care is no exception. It would be surprising if, when 130,000 people a year are dying on the Liverpool care pathway, there were no cases in which the pathway had been misapplied. That applies to every branch of medicine and, indeed, every occupation. There are good and less good doctors and nurses; there are well run and less well run hospitals; but to lay the blame at the door of the Liverpool care pathway is like tearing up “The Highway Code” because there are some bad drivers. Where there is bad practice and poor care, it should be rooted out and replaced with good care.

It seems to me that the review the Government recently launched provides an excellent opportunity to consider thoroughly all those issues. It is urgently needed. The review should call for any evidence of poor end-of-life care. We need the Minister to assure us this afternoon that the stories I have quoted will not simply be taken at face value, but will be investigated in detail, so that we can establish the scale of poor end-of-life care, and understand the causes and correct them.

Lilian Greenwood (Nottingham South) (Lab): I am listening carefully to the important points the hon. Gentleman is making. My constituents John and Mary Roche lost their mother five years ago. They came to see me because, having seen the media reports, they were concerned about her care toward the end of her life—she had been admitted to hospital and subsequently had her food and nutrition withdrawn. Does he think my constituents and others like them should be encouraged to share their stories, so that they can be taken into account in the Government’s review of the Liverpool care pathway and its appropriate use?

Glyn Davies: I thank the hon. Lady for making that point, because I most certainly do agree. I hope that, as a result of today’s debate, more people will come forward to put their experiences, especially of bad practice, in front of the Minister and the review.

We must not forget that it is necessary not to allow the shortcomings of some end-of-life care providers to undermine the outstanding work that the majority of doctors and nurses perform. It is easy to forget that, for those caring for people in the last days and hours of their life, alarmist stories cause real problems, misleading vulnerable people and their relatives into thinking that the unhappy experiences reported so prominently are typical of end-of-life care as a whole, making them reluctant to accept care that is genuinely beneficial, and generating fear of going into any sort of care setting. My sense is that the high profile given to these serious allegations, unaccompanied by supporting evidence, is analogous to shouting “Fire!” in a crowded theatre. We need to know that the Minister will consider all the allegations that are made, including those that have been reported, look at the evidence, and institute whatever changes are needed to ensure safety and thereby confidence in the integrity of the Liverpool care pathway.

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I end with a general observation. I was appalled, as I am sure everyone in the Chamber was, by the recent revelations of poor care in a Worcestershire hospital, in Winterbourne View and in Stafford hospital. I was moved, as many of us will have been, by the observations made in the main Chamber before the Christmas recess by the right hon. Member for Cynon Valley (Ann Clwyd) regarding the inadequate and cruel care given to her late husband. We are reading about too many such cases. Considerable advances have been made in medical science, but we must ensure that, at the same time, we do not lose commitment in the NHS to basic care. I cannot help wondering whether the examples of poor end-of-life care that some relatives believe was given to their loved ones stem from the wider malaise of forgetting how to care for the sick, rather than from any specific clinical protocols such as the Liverpool care pathway.

Several hon. Members rose —

Mr Mike Weir (in the Chair): Order. Several Members wish to speak. I want to call the first of the Front Benchers no later than 3.40 pm. A quick calculation suggests that, if Members keep their speeches to about seven minutes—and interventions are brief—I will be able to call everyone.

2.49 pm

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 

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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.