Liverpool Care Pathway

John Pugh Excerpts

Tuesday 8th January 2013 Westminster Hall

[John Pugh (Southport) (LD)]

I also congratulate the hon. Member for Montgomeryshire (Glyn Davies) on introducing this important debate in such a measured and sympathetic way. It was effective indeed.

I do not like the term “Liverpool care pathway”; I prefer talking about guidelines for palliative care. That is probably a less contentious way of discussing it. The Liverpool care pathway was developed in Broadgreen, and I was born in Broadgreen. More importantly, my grandmother died there, having been readmitted several times. The last time she was admitted she had declined somewhat at home and I can remember the expression of horror on her face indicating that that was not the right way to treat her. She knew that she was going to die and she wanted to die at home, and she was being admitted unnecessarily to hospital. I regret that we arranged for that to happen. It is very important to get the last years, months and weeks of people’s lives correct and we certainly did not; hence there is a need for things such as the Liverpool care pathway and a more understanding, measured and sensible approach to affairs.

There is a need for the hospice movement, but the reality is that most people do not die in hospices; they die in the NHS and there is a need for the NHS to have some clinical guidelines to follow. That is particularly the case for those in their last hours, day, weeks and months, whose death is imminent and who cannot have that death prevented or, realistically, postponed. That is quite a high threshold to be met, and finance should in no way come into meeting that threshold. When finance does come into it, it can only corrupt the process. The Liverpool care pathway guidelines imply constant review and no one wants that coloured by financial incentives. After all, there is always the remote possibility of people getting the diagnosis wrong.

That is not a case against having guidelines at all or against thinking that we sometimes need to opt for a palliative choice rather than a remedial one, if there is no realistic remedial choice available. If that choice has to be made, there is no in-principle case for involving relatives and the patient in it, with the important caveat that what is done should be in the patient’s interest. I am not always sure there is an obligation to clarify the situation for the patient or their relatives, if they prefer to die in hope or expectation of recovery and find the thought of their inevitable demise insupportable, particularly if it will not change clinical behaviour and the only option is palliative care for that person. That is a difficult issue, which every clinician needs to face and be guided on in facing it.

There is certainly a need to inform the patient and/or relatives if expectations about care are starting to differ, or if the nature of the palliative care offered is unclear. That might be the case if a patient is wrongly categorised, or if there is a debate about the palliative care itself, and it is seen as substandard. Some of the episodes of dehydration that have been described in the national newspapers have seemed to me to be substandard palliative care. The bottom line is that palliative care should not worsen the condition or augment the suffering of somebody who inevitably will die, unless the patient chooses it. In certain circumstances, I can imagine somebody trading pain for more life.

Care can be worsened in two quite different ways: it can be worsened by disruptive, painful, pointless, futile interventions, and it can equally be worsened by neglect, and indifference to people’s symptoms and the manner of their decline. My aunt recently died in the Royal Liverpool, which has taken over Broadgreen. I remember going to her bedside and seeing the signs that said, “Nil by mouth”, and wondering whether we should offer her a drink while we sat there and talked. We never managed to get round to having a sensible conversation about that with the medical staff. I was never sure what I was confronted with. It might have been wise care; there may have been a genuine risk of choking, which I believe is one of the reasons why people are not given liquids at that stage. It might just have been neglect or absence of thought. What did not happen—and should have—was a discussion about treatment: a sort of negotiation.

If palliative care is the path chosen—it should only be chosen when it is, in a sense, the only path—there needs to be a negotiation. It is the trick of getting that negotiation right that is the difficult thing. We need to respect the rights of all people concerned, and the patient’s rights sometimes differ slightly from the family’s rights. The family fearing bereavement can only wish the patient to live at all costs. That may not always be the patient’s aspiration in that circumstance. The hon. Member for Montgomeryshire has started us along the path of having a measured discussion and review of these matters and I hope it continues.

[Mr David Burrowes (Enfield, Southgate) (Con)]

I respect what my hon. Friend says on communication with the patient, but I would like to clarify something. A survey by the Marie Curie Palliative Care Institute Liverpool and the Royal College of Physicians said that half of those on the LCP are never told that they are on such a pathway. Also, the LCP is not just a framework of good practice but a pathway, taking the patient towards the presumed outcome of death. Surely, therefore, it is important to make it clear that there should be communication with the patient; it should not be only the best half who know.

[John Pugh]

That in part is the dilemma. I know that the saying is “No treatment about me, without me”, but there are certain circumstances that we will all be aware of where the patient is dying and the clinician is in an acute moral dilemma over whether to inform them that that is the case—that there is no hope and that they will be given purely palliative treatment. I am fairly confident that a good number of people will die in our hospitals for years to come, despite the Liverpool care pathway or any other guidelines that we put in place, who will, until the moment of their decease, expect recovery.

[Mr Mike Weir (in the Chair)]

We have just under 12 minutes left and two speakers to go. I ask that they bear that in mind.