Liverpool Care Pathway – Marching On

This is BBC Radio Nottingham with Francis Finn sitting in for Andy Whittaker -

Frances Finn sits in. Your latest news, sport, weather and travel. 

Frances Finn is speaking to a doctor today. Scroll forward to 2 hours 8 minutes for the interview -

A transcription follows -

2 hours 8 mins

Frances Finn

Yesterday, on this programme, the daughter of a Nottinghamshire man said she has been left horrified after her father was placed on an end of life programme without anyone in their family giving permission. His family says that 82 year old Phillip Charlesworth from Fiskerton near Southwell was put on the Liverpool Care Pathway at Kings Mill Hospital despite the fact that he was getting better. And his daughter, Denise, says the situation has left her feeling very upset. At the time, you thought you were doing the best. But how do you feel now?

Denise

I feel like I murdered him. (pause) It’s… That’s how I feel. I feel so… I’m so… I’m going to get upset, now. I actually feel that there should have been more that we could have done… (sobs) it’s awful to think that my dad won’t be here anymore and I struggle with it every day to try and think, you know, what could I have done. But at the time, you think, you know, you’re putting your trust in a doctor who knows best. And so, therefore, you don’t criticise what they’re doing; you think they’re doing the best for people who are in hospitals.

Frances Finn

Well, bosses at the Sherwood Forest Hospitals Trust that runs Kings Mill says the family hadn’t raised their concerns directly but will be happy to meet with Denise and her family. Well, lots of you got in touch with us about this story and your experiences of the Liverpool Care Pathway, but what exactly is this Pathway that’s caused so much debate and upset? We thought we’d explain it a bit more by talking to Dr. Theresa Tate who is a Consultant in palliative medice at Bart’s Hospital and works with the National End of Life Care Program. Good morning.

Dr. Theresa Tate

Good Morning.

Frances Finn

What is it? Can you put it in a Nutshell? What is the Liverpool Care Pathway?

Dr. Theresa Tate

the Liverpool Care Pathway a document which has been designed over a period of time to assist the clinician or the nurses and doctors who are looking after somebody who is in the final hours or the days of their life. It’s to help them think about all the important aspects of care that ought to be remembered

Frances Finn

When it comes to the practice, though, what… what does putting a patient on the Liverpool Care Pathway mean for that patient?

Dr. Theresa Tate

(Pensive sigh) It means, primarily, that the doctors and nurses have realised that the person really is right at the end of their life and they are most likely to die within a day or so. If that’s the case, the most important things are that the doctors and nurses talk to the patient if possible and, certainly, to the family and explain the situation which shouldn’t really be too much of a surprise to the family and the patient because the doctors and the nurses will have been talking to them over the preceding days and explaining what’s been happening to them, how the treatment that they have been receiving, perhaps, is no longer able to keep them in the same state of health and their health is deteriorating.

Frances Finn

Em. Just to be clear, then, what happens is, my understanding is that the patient is no longer given food or water and painkillers… the dose may be increased. – let’s say morphine which can inhibit breathing, can’t it, so you may give a little more morphine, not… not give the patient food and water, and in the instance of somebody…

Dr. Theresa Tate

No… Can I just stop you there? Because that is absolutely not the case. The Liverpool Care Pathway doesn’t say in any way that the patient should not be given food and water. And if the person is able to eat and drink they should be encouraged to do so, just as they would have been should the document not be being used to provide their care.

Frances Finn

Well that is interesting because that doesn’t seem to be what’s happening. The cases that we have come across the families are describing scenarios like Denise, yesterday, where they were instructed not to give the patient water, don’t give them a cup of tea, just swab the inside of their mouth and yet, in Denise’s case, their father was asking for water. He was trying to get out of bed, and yet this was happening. Does this surprise you?

Dr. Theresa Tate

Obviously, it’s not possible to comment on an individual case, but it is really important that the doctors and nurses who use this pathway to assist them in caring for people understand exactly what is described in the pathway, so it describes that we should think about all the possible symptoms that a patient might develop, pain certainly being one of them, and the drugs should be prescribed so that they are available but, certainly, no medication should be given unless it’s necessary. So, many patients will never receive a single dose of morphine, will never need to receive it. If they don’t have any pain, they don’t need painkillers.

Frances Finn

Yes. Fair enough. I think I’m still trying to understand what the Pathway is in terms of treatment. What changes? What do the nurses do differently once a patient is on the pathway?

Dr. Theresa Tate

(Pause) The Pathway is to ensure that the nurses continue to look very carefully at the patient, so it requires that, every 4 hours at the maximum, and probably in less, at shorter time intervals than that, the nurses go back, have a look at the patient and ensure that they are comfortable, that they have had a drink if they want one, that they can have something to eat if they want one, and all of that is documented on the pathway document

Frances Finn

How is that different to how they would be treated before going on the pathway?

Dr. Theresa Tate

 It may be that (interruption) before that, they were still receiving some form of treatments which were no longer being effective. Em, perhaps for example… a dose of chemotherapy which was no longer able to control their cancer.

Frances Finn

So, it’s like everybody comes to an agreement that this patient is going to die, how can we make them as comfortable as possible?

Dr. Theresa Tate

Absolutely right.

Frances Finn

So, where does the withdrawing fluids come in then? Now, let me just read you this text. Again, I’m not asking you to comment on this particular case but there’s Vicki in Newark who’s just sent a text to say, My brother was killed off this way last year. It took 14 days for him to die. No fluids or nourishment for 14 days. You wouldn’t treat an animal like that. He was just a skeleton at the end and they call that a dignified way to end a life. Do you think there’s a misunderstanding by medics about what should be done in the last few days of somebody’s life?

Dr. Theresa Tate

The Liverpool Care Pathway quite clearly says that the decisions about giving extra fluid or extra food should be made on an individual basis. It also says quite clearly that if after any period of time the patient’s condition appears to have altered, indeed, improved in some way then the use of the pathway must be reconsidered and it may be that, because we’re not absolutely accurate about whether or not somebody is dying, it’s not always possible to tell that, and people may suddenly improve, and in that case, their care must  be reconsidered and it would be possible for the use of the Pathway to be stopped and other treatment to be reinstituted if somebody really appeared to be recovering again. Nothing that the Pathway does is designed to hasten the death of a patient.

Frances Finn

We have run out of time on this but I know it is a topic that we will come back to and there has been a development. Denise, the daughter of that gentleman we spoke about yesterday has been back in touch.

2 hours 42 mins 

Frances Finn

The Liverpool Care Pathway – that’s a phrase that has been a new one to me, actually, and I’ve learn more about it this week and it’s certainly something that is very close to home with many listening to BBC Radio Nottingham this week. When you heard yesterday Denise’s story of watching her father die having been denied fluids and food she had no idea that he was on this so-called Pathway at the time and now feels terrible about it. You’ve been getting in touch saying similar things have happened to your families. Mark Dennison wants to hear all about it after nine o’clock. A chance to ring in with your experiences. But Denise spoke vey movingly yesterday about what happened and she’s back on the phone now to give you an update. Good morning, Denise.

Denise

Good morning Frances. Thankyou very much for taking my call this morning.

Frances Finn

No, that… You’re very welcome, And you were listening to what our palliative care expert was saying about what the Pathway is. I don’t think it’s a very straight forward, cut and dried thing is it by the sounds of it?

Denise

Do you… Do you know what she sounded like? She sounded like she was a teacher reading from a text book. As did the person from Derby. I don’t think they actually live in the real world to be quite honest, because I have to say a 183 people on a Facebook page are not a bunch of liars and they’re not making up stories about what goes on in hospitals. And this morning, I was told of a story where a nurse, actually, put somebody onto the Liverpool care Pathway. I was absolutely incensed by this and it’s galvanised me now to say, I’m sorry, enough, enough, we have to march on London to make somebody aware of what is going on. This is absolutely ridiculous. We cannot let any more relatives die on something that is tantamount to legalised euthanasia.

Frances Finn

I read a text from somebody that said it took 14 days for their brother to die after fluids and nourishment were withdrawn. And that comment isn’t alone. There’s another one here to say a local hospital did this to my dad after a stroke. Two weeks without food and drink. These are, at the moment, allegations, aren’t they? The thing is, proof is often needed for these episodes to be taken seriously, but you want MPs to be aware of it at the very least, and so what do you want to do, gather more families like, like you together to go down to London

Denise

Yes, I definitely do. I mean, we’ve beem contacted this morning by a guy in Manchester who said to me, did you see the news, the BBC news which is national? Em… And I said to him, yes, I did and he said I think this is as a result of what you ‘ve been doing, Denise. You’ve actually brought this to the forefront  of, you know, people’s living rooms, which is what I wanted to do. And I said to him, now what do we do, do we really march? He said, yes! So, we’re putting it on the facebook page; as of today, we are definitely going to march. We just want a date that we’re going to pick. I suggested, laughingly enough, that we should do it on Remembrance Sunday because it’s to remember our families who died as well. Now, I’m sure it would cause an absolute stir if we were to hit London on that day, you know, with our banners, saying Anti-Liverpool Care Pathway because I don’t think that those people who are sitting there reading and writing the text books are actually realising what goes on in reality. If a nurse can actually put somebody on the Liverpool Care Pathway, what hope does anyone have? I mean, it’s supposed to be a doctor, there’s supposed to be people checking on you every 4 hours. That did not happen in my father’s instance. And I have to say, it was quite interesting yesterday, your comment about the hospital not being in contact with me because the same person that I had been in contact with contacted me yesterday, so what a cover-up.

Frances Finn

Denise, what’s your Facebook page called?

Denise

Anti-Liverpool Care Pathway

  

Frances Finn

Thankyou. We will keep in touch. And, as I said, Mark Dennison wants your calls. He’ll ask you in particular what he wants from you