Liverpool Care Pathway

Liz Kendall Excerpts

Tuesday 8th January 2013 Westminster Hall

[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.

[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.