Liverpool Care Pathway - The Big Question

The Big Questions - Is the NHS cutting lives short? is covered in the final 20 minutes of the programme. Five days left to view.

This is The Big Questions -

The Big Questions

From Michaelston Community College in Cardiff, Nicky Campbell asks:
Is the NHS cutting lives short?

Baroness Finlay, a palliative care specialist; Dr Richard Hain, consultant in paediatric palliative medicine; gastroenterologist Dr Philip Howard; oncologist Dr Mark Glaser; Jackie Leotardi.



Transcription follows:

Nicky Campbell –

Most of us prefer not to think too much about dying; it’s not really something we can plan for but we all hope for a good death, pain-free, surrounded by our loved ones, at home and in peace. But more than half of us will die on a busy hospital ward and that’s why the Liverpool Care Pathway was developed to try and make each of those deaths as pain-free and peaceful as possible.

Some families and doctors now fear that putting a patient on the Liverpool care Pathway has itself become a death sentence ruling out the chance of recovery. Is the NHS cutting lives short?

Em, Dr. Philip Howard. Em, there’s been quite a media furore about this, something of a media hysteria about it. The Daily Mail has been talking about it a lot. Em, it’s not about not prolonging a life; it’s about not prolonging a life unnecessarily, isn’t it? I mean, do you approve in principle of the Liverpool Care Pathway?

Dr. Philip Howard –

I think one of the problems with the Liverpool Care Pathway is it’s predicated on a false premise, namely that you can accurately diagnose death; you can make an accurate prognosis as to when that person is going to die, within the next few hours or days. And there’s no scientific evidence that we can do that. And I know of no calibration tools that we can use to say just how accurately we can make that prognosis. That’s the danger. Now, if you then sedate the patient, stop observations, stop interventions, and stop food and fluids, the patient must die. Whether or not they would have died anyway, they must die if you adopt that regime in full.

Nicky Campbell –

Baroness Finlay, can we have full confidence that, em, given the perceived crisis in care - it’s been a very difficult week for the NHS – that this is being ethically and appropriately applied?

Baroness Finlay –

Can I pick up the point, first of all, about prognosis…

Nicky Campbell –

Please do.

Baroness Finlay -

The Royal College of GPs in evidence to the select committee I was on said, and I quote, it’s possible to make reasonably accurate prognoses of death within minutes, hours, or a few days. When this stretches to months, then the scope for error can extend into years. The thing is that there is no absolute way of predicting what’s going to happen anywhere. It’s on probabilities. Now, when somebody looks as if they’re dying and you have done all you can to exclude all reversible causes, then, whatever you do, you must go back and review and review and review. Good medicine is based on evidence, on going back and analysing what you see before you.

Nicky Campbell –

And what about a junior doctor, weekend staffing, a busy ward, you know; if it’s down to good people who are not under pressure, who are not stressed, fine, but is that always the case?

Baroness Finlay -

I certainly think that the evidence that’s been coming forward – let’s look at evidence – is that there seems to have been a problem in some cases and there is now an inquiry set up under Baroness Neuberger.  I think that she needs to be able to access all the evidence, she needs to be able to look at all the cases and she needs to be able to conduct her inquiry independently, impartially, and look at where the problems lie, where there are problems and, much more importantly, two, is what the solutions to those problems are.

Nicky Campbell –

This… You see, the people here and at home… If there’s a problem with the application, that’s… Jackie…

Jackie Leotardi - 

We, we would argue that, of course, there’s a case for high quality palliative care in hospitals and in the home but, when that’s rolled out indiscriminately in the NHS, it becomes very, very dangerous. My father was admitted to hospital on a Friday evening, parked on a ward all weekend. We begged them to do a CT scan. They kept saying, oh, we’ll have to see, we’ll have to see, we’ll have to see. We got the consultant brought down to his bed; she still refused to do a CT scan. On the Tuesday morning, they called us in. Oh, it’s too late now, he’s too poorly. We were given a definitive diagnosis of perforation. We said, how can you say that based on inconclusive x-rays? Oh, we’re sure it’s a perforation. He was put on the Liverpool Care Pathway and died. At the post mortem , it was found that he actually had a pulmonary embolism.

Nicky Campbell –

It was a misdiagnosis.

Jackie Leotardi - 

Yes. It was a total misdiagnosis. The reason we’re here is because elderly care in the NHS is appalling.

Applause.

Baroness Finlay -

May I say firstly, I’m not here to defend the whole NHS; I don’t know the ins and outs of the tragedy of your father’s case.

Jackie Leotardi - 

Exactly.

Baroness Finlay -

And I’m not; I can’t comment on that, but there certainly would appear to have been a misdiagnosis. The difficulty in this discussion is, did the Liverpool Care Pathway itself prevent people reviewing that diagnosis, or was the failure at a different point earlier, and a failure of care?

Daughter of Jackie Leotardi - 

The problem is it wasn't just a misdiagnosis; the fact is they didn't do any investigation into what he had. So, unfortunately, with a system like this, with the best intentions in the world, people will fall through the cracks like our granddad, and even if one person falls through the cracks, for me, that is wrong.

Applause.

Baroness Finlay -

I would certainly, I would certainly not condone anyone falling through the cracks. The whole… of the

Nicky Campbell –

So this goes back to my first question, doesn’t it? Given, you know, given the current problems, the current stresses, the future pressures, reorganisation, do we have… Do you have the utmost, as much as you can, confidence that this is being used appropriately and ethically and responsibly applied?

Baroness Finlay -

Of course I couldn’t say that I have a 100% confidence. We have an inquiry. I have been arguing for an inquiry. I’ve supported the setting up of an inquiry. And we need to have it. It needs to go and look in detail. Is the problem with the documentation itself; is the problem with the way it’s being rolled out; is the problem with what’s been happening actually at the bedside?

Jackie Leotardi - 

Financial incentives. Hospitals have been paid. We saw last week with the Francis inquiry about the problem; about a target-driven NHS. Financial incentives have been paid to hospitals, certain hospitals that are now being investigated for their mortality rates…

Nicky Campbell –

30 million…

Jackie Leotardi - 

Yes. One hospital was paid £308,000 for reaching targets for putting people on what is basically a euthanasia programme. Baroness, it is euthanasia.

Baroness Finlay -

It… No, euthanasia is about intent. The Liverpool Care Pathway doesn’t intend to kill people. It intends to improve the care when people are inevitably dying. That’s quite different.

Daughter of Jackie Leotardi - 

But it doesn’t work in practice…

Nicky Campbell intervenes and indicates –

Richard. Richard.

Dr. Richard Hain –

In… In your interview with The Gazette, you finish your interview accepting…

Nicky Campbell –

What Gazette is that…?

Dr. Richard Hain –

I can’t remember the name of it. Your local Gazette.

Nicky Campbell –

Okay…

Dr. Richard Hain –

You made the point that it’s not that the Liverpool Care Pathway is bad in itself, it’s that it can be badly used. I’m paraphrasing, but that was…

Jackie Leotardi - 

That’s right. It’s abused in the NHS. (pauses)

Dr. Richard Hain –

And I think that’s the distinction we …

.

Nicky Campbell intervenes -

So… Richard. So, the principle of it  is…

Dr. Richard Hain –

The principle of is that there is a point in the life of a patient when we know when… when they are going to die. We may not know it with absolute certainty. We’ve already talked about how human beings find certainty desirable but we can’t always have it. If we wait until we are certain, we miss the chance to care for them over that time.

Nicky Campbell –

So, it’s about not prolonging a life unnecessarily.

Dr. Richard Hain –

Not prolonging or hastening it.

Nicky Campbell intervenes and indicates –

Dr. Haboubi.

Dr.Nadim Haboubi -

Em, em, em. I’m a physician and I look after acutely ill people. And we do, occasionally, put patient – and this is not frequent, you must understand that – on the Care Pathway. We agonise on these decision. We consult with nurses junior, senior doctors...

Nicky Campbell –

Family.

Dr.Nadim Haboubi - 

Family, of course. You can’t put a patient on a care pathway unless you consult the family

(Intervening voices) - 

And yet very often does 

Jackie Leotardi - 

Very often, there is no consent given

Nicky Campbell –

Were you consulted?

We were told that it was inoperable and that was what they were going to do. Beforehand, we were fighting for investigations...

Nicky Campbell – (Talks over)

So you trusted… You trusted

Jackie Leotardi - 

To be taken.

 Nicky Campbell – 

You trusted their analysis, their diagnosis.

Jackie Leotardi - 

Well, we didn’t know, but what, what could we do, dial 999 and call the police? But I know a lot of people who weren’t consulted. Their consent wasn’t sought from the relatives; consent wasn’t sought from the patients.

Nicky Campbell – 

Julia.

Julia Manning - 

That is absolutely wrong. I was not behind the development of the Liverpool Care Pathway which was developed at Liverpool with Marie Curie cancer. It was very much about having the conversation around dying well, and just as an expectant mother has a birth plan, we should all expect to have a death plan, how we want to die, where we want to die, what kind of interventions, and to not have that conversation was absolutely wrong and, you know, you were betrayed in that I just want to come to come to another point about the financial incentives. I think it’s totally wrong that hospitals are paid to put people on this pathway. The money should go…

Applause.

Julia Manning - 

The money should go into training palliative care professionals and it should also, as we’ve heard with the Francis report and one of the first suggestions is that we need many more professionals who are trained in care for older people.

Nicky Campbell – 

Is this another example of the target driven culture, Baroness Finlay?

Nicky Campbell, indicates Dr. Richard Hain –

I see you’re nodding…

Baroness Finlay -

I… I think there’s areal danger in trying to put simplistic targets around healthcare which is incredibly complex

Nicky Campbell –

And nuanced…

Baroness Finlay -

The absolute critical thing is that, whenever you've got a patient in front of you, you must go back and review. You must rethink what you write. Is there something else going on? Is there something actually reversible?

Nicky Campbell – 

Yes. So, that’s it. Richard, how often - and I know this is an interest area of yours – how often, once somebody is on the Liverpool Care pathway, has somebody been taken off it because signs of recovery have been…

Dr. Richard Hain –

I need to be clear, I do paediatric palliative care and we don’t use the Liverpool Care Pathway in children. But the principal that you’re asking, how often do we go back and review? We review all the time. Eh. Every minute of every day, we… We would see a patient every day and I think this issue of… em, it’s not so much a question of consent to go on the Pathway, it’s the fact that the conversation needs to take place. It was designed to facilitate that kind of communication, not to replace it. And I think it goes back to an earlier comment, because it’s about individuality of the patient we’re dealing with rather than the NHS trying to shape itself through defining targets.

Baroness Finlay -

Can.. Can I just say, when you go back and review, about 3% of times, you find that, actually, you were wrong. The person isn’t dying. They’re actually… They’ve improved because you’ve stopped whatever treatments you were doing that were making them worse than they felt… because that’s the nature of medicine.

(A converse of voices)

Nicky Campbell – 

Is it the case… Is it under constant review when somebody’s on the Pathway?

Dr. Philip Howard –

One of the problems about the Liverpool Care Pathway is that a decision is made and then, very often, observations are stopped, nursing observations are stopped, simple blood tests are stopped and further interventions are usually stopped – with the exception of oxygen, interestingly enough; that’s continued in 45% of cases. But most other interventions are stopped and very rarely started. When… How can the patient be properly reviewed if you don’t have basic nurse observations, basic blood tests and so on? After three days, em… three quarters of the patients have died, but of those that are still alive, according to the audit that was done of 7,000 patients two years ago, only 20% were reassessed.

Pause.

Nicky Campbell – 

A lady… 

Nicky Campbell (indicates) - 

You put your hand up a few minutes ago. I don’t know if your point is still relevant but please make it. Go on.

Lady -

What’s particularly worrying is that the vulnerable are the ones who are in most danger. How about the people who don’t have families

Voices in agreement. Applause.

Lady -

Who may not be in the right mental capacity to understand what is happening around them. Yet again, we are seeing in this society that the most vulnerable are being put at risk, you know, from winter fuel payments wanting to be kept down, to bedroom tax… Yet again, we are targeting the vulnerable and I think that this Liverpool Care Pathway shouldn't be allowed if you can’t 100% guarantee that there aren't risks like this happening.

Nicky Campbell – 

Jackie

Jackie Leotardi - 

The people I know… The people I know who have come off the Pathway have had families who have been strong enough and confident enough to defy the doctors and nurses. An old gentleman we know, after three days, he said, that’s it, I'm feeding my dad; I'm giving him some porage, I'm giving him a drink; that old man, at 91 years of age, went home from hospital on Friday. But if his son hadn't had the guts to stand up to the doctors and nurses, he would be dead by now.

Nicky Campbell – 

So, Richard, is…

Jackie Leotardi - 

And that’s what’s happening today in the NHS.

Nicky Campbell – 

Is there a danger, then, that it becomes a matter of resources? 

Dr. Richard Hain –

There is a danger. But that’s a misapplication of a good Pathway, rather than because the pathway itself  is wrong.

Nicky Campbell – 

Extol the virtues of the Pathway if there’s anyone listening who’s thinking, 'oh my goodness'.

Dr. Richard Hain –

Because I think it’s more difficult for doctors to do nothing than it is for them to do something and there are times when to do nothing interventionist is the right thing to do for people. And they need some help in doing that nothing and doing it well. And the Liverpool Care Pathway provides the support for them to make those good decisions. Em. That doesn’t mean that it’s always implemented properly and I think what we’ve heard are a number of examples where it has been implemented poorly.

Jackie Leotardi - 

The paperwork is sloppy. It just has to be signed by one doctor and a nurse. My father’s paperwork was sloppy. The space for diagnosis is tiny.

Nicky Campbell (indicates) - 

The lady there. Good Morning

Lady - 

Can I just speak up for doctors and nurses because any doctor and nurse I’ve ever met in the NHS;

Applause.

Lady - 

they’re not angels of death that I feel people are painting them out to be here. They care very much and they do have the patient’s best interests at heart, from my experience is.

Applause.

Nicky Campbell (indicates) - 

Yes.

Christina Biggs -

 I . I think with death, we… It’s just that people don’t want to acknowledge it might be happening now, and they might actually be on the way out. So, I think there is an aspect where we, maybe, sort of… We’re so afraid of death; we should be fighting franticly. And there’s the other side of it where we just see this patient lying there as someone we want to get out of there, you know. So, em, I certainly had; my father’s cousin, he’s got Alzheimer’s very, very badly and… I meant to go and see her for years and years and years and, about two weeks ago, I went to see her and she was in a, you know, very comatose state, in the bed, all scrunched up and she was my father’s cousin. And I was so glad to see her and she had Alzheimer’s, but she recognised, well, not my name or her husband’s name, but she did know her sister’s name and her cousin’s name, and we did have this conversation. Thankyou for everything you've done in the past. And I think, maybe people… Doctors have just got to remember that these people are grandparents, aunts, uncles, and it’s this huge human thing about seeing people and not just either cutting it short or dragging it out as you say, but it’s a human institution, it’s – not institution -  it’s a really important..

Nicky Campbell – 

And that, in the vast majority of cases, is what happens isn’t it?

Dr. Philip Howard –

Yes, it is. And I think it’s a pity. We've had palliative care in this country for 35 to 40 years. We pioneered good care for the dying in this country through the Hospice movement. That was a quiet revolution in medicine and we’re very proud of it and it’s still applied widely. I think the tragedy is that we’ve got a problem. We never had this sort of controversy that we’re seeing with the Liverpool Care Pathway over the Hospice movement. Walk down any High Street and you will see charity shops for Hospices. There’s a tremendous amount of support and rightly, in this country, for the Hospice movement, for hospices, for good care. And I entirely agree with Baroness Finlay that we must have a proper review of this. Em, it is quite clear that there is a genuine concern about the way palliative care is happening in this country. And it is going to have to be a proper and thorough-going investigation as to what’s going on. And the sense that I get from relatives – and Jackie has just illustrated this very nicely – is that relatives and the public at large want good palliative care. Everybody is pushing from the same side. They want doctors and nurses and the system to work well for those that are dying. And that must happen.

Applause.

Nicky Campbell (addresses Baroness Finlay) - 

Can I just.. You've only got a few seconds. This has been in place for quite some time, hasn't it?

Baroness Finlay -

Right. If I may pick up on the comment that was made. Doctors and nurses, by and large, desperately want to do what’s right by their patient. They don’t get it right all the time. We've been trying to drive up standards of care. We just have to be careful we don’t throw the baby out with the bath water.

Programme Credits....

The unanswered question:

Dr. Philip Howard –

One of the problems about the Liverpool Care Pathway is that a decision is made and then, very often, observations are stopped, nursing observations are stopped, simple blood tests are stopped and further interventions are usually stopped – with the exception of oxygen, interestingly enough; that’s continued in 45% of cases. But most other interventions are stopped and very rarely started. When… How can the patient be properly reviewed if you don’t have basic nurse observations, basic blood tests and so on? After three days, em… three quarters of the patients have died, but of those that are still alive, according to the audit that was done of 7,000 patients two years ago, only 20% were reassessed.

Comment of concern:

Dr. Richard Hain –

… em, it’s not so much a question of consent to go on the Pathway, it’s the fact that the conversation needs to take place. It was designed to facilitate that kind of communication, not to replace it.

Where the patient lacks capacity, the Mental Capacity Act enables the medical team to act in the patient's "best interests". Consent  is not required. In such cases, the Data Protection Act, also, might exclude relatives/next of kin being party to such a decision being taken. Recent observations by political personalities that this should be otherwise are at variance with this legislation.

This is a legal quagmire.