Liverpool Care Pathway - These Are The Anecdotal People

This is Earl Howe's response to Baroness Knight of Collingtree in the House...

Earl Howe (Parliamentary Under Secretary of State (Quality), Health; Conservative)

My Lords, there is no procedure, as there is no such inquiry. A number of organisations, led by the National End of Life Care Programme, Dying Matters and the Association for Palliative Medicine, are looking into complaints, patient experience and clinical opinion on the Liverpool Care Pathway. We do not make policy decisions based on anecdote. If the work in hand suggests cause for concern, we will respond on the basis of that evidence.

(They Work For You.com)

These are My Lord, Earl Howe, your anecdotal people...

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Liverpool Care Pathway - Should Doctors Play God?

This is BBC Radio Kent -

BBC Radio Kent

Julia George

05/03/2013               

First broadcast:

  

Tuesday 05 March 2013

   09:00

Tue 5 Mar 201309:00BBC Radio Kent

Transcription follows -

 Julia George -

Should doctors and nurses ever play god? We need to talk about this. Dispatches last night; our local news last night; our breakfast show on BBC Radio Kent this morning; all talking about people dying in hospital - Dying in hospital because somebody has decided that it would be kinder; it would be appropriate, for whatever reason, to hasten their death, by withdrawing fluids, for instance, by withdrawing food, by withdrawing some of the drugs that are keeping them alive. Should that ever happen? Is it kind, or is it cruel?

You heard in the news bulletin there with Rosemary the case of the 71 year old man from Kent who was in the Kent and Canterbury Hospital with pneumonia, weekend staff basically started to withdraw treatment without consulting the family, which enraged the family, and a consultant on the Monday morning came in and said, What are you doing? This shouldn’t be happening. The patient went on to live for another 14 months. Was it a one-off mistake? Or is it happening more often? Should doctors ever try and play god, can anyone ever really know that we’re dying, forecast our death, and try to bring it forward for our own benefit? Is it cruel, or kind to allow someone to pass away more swiftly?
Should doctors ever try and play god? Can anyone ever really know that we're dying, forecast our death and try and bring it forward for our own benefit? Is it cruel, or kind, to allow someone to pass away more swiftly? If you were in hospital and you were seriously ill, would you be reassured or terrified to know that they can hasten your death?

That question again: Should doctors and nurses ever play god? If you were in hospital would you be reassured or terrified?

Julia George -

Lots of emails coming in at the moment. Miles says, Julia, this Liverpool Don’t-care Pathway appears, in some cases, a way of getting shot of expensive patients by staff who have become so used to matters of life and death they have lost the humanity of their profession. Either that or they are desperate to fulfil a tick-box target. If there is no hope, and all parties are agreed, then maybe doctors can play god and allow a patient to slip away; but it should be a rare occurrence, not a pre-programmed pathway. As in any job, familiarity breeds contempt, but in some jobs that can be deadly. Miles, thankyou very much indeed.

This is from Justine. Julia, I work in an Extra Care Home. I care for people with illnesses that won’t improve. It’s heartbreaking watching people live with no quality of life. If these people are sent to hospital, very often they are left to die in the most horrible conditions. There is no care for these people in hospital. I agree with your caller who would rather jump off a bridge. The people I work with would rather be dead than live every day with the illness they have, but the way they are expected to die, understandably, terrifies them. This is where euthanasia really needs to be allowed. Not letting our loved ones suffer, doctors should not have the right to decide this; it should be down to the individual and their family. I would not want anyone playing god with my life. Justine, thankyou.

Do we have the expertise? Are we… Can we step back far enough from our own loved ones, from our own lives, perhaps, to make the right decision? Irene is from Medway. Irene, what happened to your husband?

Irene -

Good morning

Julia George -

Good morning, Irene.

Irene -

Em, he was put on this pathway unbeknowing to me. He suffered a… In March, he suf… In March, he suffered a stroke. Well, they got him better in this particular hospital he went into. And then, he… you know, they send them off to recuperate in another hospital, don’t they?

Julia George -

Yes, that’s right.

Irene -

He went downhill, very rapidly. In the end, he couldn’t walk. He… he was bedridden. And they sent all the equipment in, naturally. And er, our GP turned round and said at the time, if he lays in that bed, he’s going to get all the infections there are available. And this is what happened. So, on the 13th July, he was very… he caught a throat infection and a urine infection and he was rushed to hospital because his temperature was way up. And em. That was on the Sunday. And er, then, they got him better within 10 days. That was in the same hospital where he got his stroke. And then, from there on, er, he was coming home, he was laughing and joking, and then on the 23rd I walked into the hospital and this woman came up to me, she wasn’t dressed in any… she wasn’t a, didn’t have a uniform on or anything. And she turned to me and said, Your husband’s in great pain all over his body and we’re going to put a patch on him. And then… I, I said, oh, that will help, will it? So she said, Yes. So, then I went to visit him, and when I visited him, he was just laying there with his eyes closed and he couldn’t speak. I didn’t know until I got all the papers back from, you know, his medical papers, when he died… I didn’t know that they had already put him on this pathway. I was not told. My family was not invited to go and have any discussions or anything. And I’ve been fighting it for 3 years I have! And even trying to get… you know, answers. And the answers that I got were, You knew he was dying. I didn’t know my husband was dying. He was laughing and joking one minute, the next minute, I knew nothing.

Julia George -

So, the first you heard…

Irene -

It was the pathway…

Julia George -

So, the first you heard he was put on the pathway to death was after he had died.

Irene -

Yes. No, before that. Yes, after he had died, sorry, yes. Because they held a, they arranged a meeting for me and em, but nothing came from that meeting. You couldn’t, you know, I turned round and said I couldn’t understand why it was he was put on that, cause he was laughing and joking, he was coming home, he’d told his granddaughter; he had everything to live for.

Julia George -

Do you think he could have been like Sammy Di Francisci? Er, do you think he could have come home and lived a lot longer?

Irene -

Well, he could have… I’m not going to say he could have lived a great deal longer, but he could have at least had, I would say, 2 years.

Julia George -

But that’s a long time, that’s… precious to him.

Irene -

…to him. [Irene speaks inaudibly]

Julia George -

And you?

Irene -

And me? Well I just can’t get it out of my system…

Julia George -

No, I don’t..

Irene -

…to be quite honest.

Julia George -

No, of course you can’t.

Irene -

Abs… absolutely horrible. To watch somebody die. I couldn’t even hold his hand. It was absolutely terrible. And when I asked what doctor he was under, nobody could tell me.

Julia George -

Irene, if they had said to you, we think your husband… what’s your husband’s name, darling?

Irene -

George

Julia George -

If they had said to you George is dying and we think he’s in a great deal of pain, we would like to make him comfortable and allow him to die here in the hospital. Em, with the best care and you can be with him, and if they had asked you and talked to you about that, what would you have said to them?

Irene -

Well, yes, if he was in great pain, yes I probably may have turned round and said, as long as he doesn’t get any pain any more. It’s a hard thing for anyone to say.

Julia George -

Of course.

Irene -

But I don’t believe that … I mean to not come to the family was absolutely terrible.

Julia George -

Do you know, I don’t think they always do? I mean, we have asked all the hospital trusts, all the organisations that run hospitals here in Kent to tell us how many patients each year are put on this pathway

Irene -

Hmm-hmm…

Julia George -

And we’ve got those figures, but in addition to asking that, we also said to them and in how many cases did you consult the family, and they can’t give us that information, they can’t, or because they don’t have that information. Do you think it should be compulsory that if a patient is going on the pathway that the family… Now tell me, let’s be really clear, Irene, should the family be asked their permission or just told it is happening?

Irene -

No, they should be asked their permission. Not just put them on. I mean… as I say, I mean… I know he might have lived two years… He’d just had a granddaughter and he was over the moon; it was his first grandchild, you know. To me, it was everything, you know, he, I mean even she was up there. She was only four and a half at the time but, I mean, we saw how he, really, lovely, you know, lovely to see…

Julia George -

He had… He had a lot to live for…

Irene -

He had a lot to live for.

Julia George -

Yes.

Irene -

For those 2 years, he probably would… He had had cancer, but the surgeon there said he’s clear. He’s absolutely clear. You know, so he was out of the woods there. But I just can’t understand why, I mean, my son couldn’t even ask questions; they didn’t want him to ask questions; he wasn’t allowed to go to the meeting

Julia George -

I mean, how often do you think about this?

Irene -

Nearly every day. Every day, I say, ‘Why?’ Why, why is it people can do this without consulting the family? It just doesn’t make sense.

Julia George -

Thankyou for sharing… It’s an incredibly painful story and em…

Irene -

It is a very long story this one, you know, and…

Julia George -

Is it over… Is it over or are you still fighting?

Irene -

Well, no, it’s… I’ve taken 3 years, because you have a time lag, don’t you? There’s only 3 years you can deal with it according to the, I don’t know, but I mean I don’t know anything about that, but I’ll be quite honest, I’m still, still… I would like justice. I just want to know why they did it. Why did they say, because when I look in the files, in all the correspondence that’s come in, there’s crossings out, the forms are actually in a state.

Julia George -

These are, these are his medical records that you have been sent?

Irene -

Medical records, yes. And on that day, he didn’t have any pain. The only time he had pain during that week was when they turned him. Well, naturally, if you’re laying on your back and they turn you, and you’ve been laying there so many hours, you’re going to get a bit of pain, surely. And they turned him, and that’s the pain that was put down, but the very day they put him on it was the Thursday

Julia George -

Thankyou for sharing it with us. I’m sure it was difficult, but I’m really grateful to you, Irene. Thankyou very much. Irene in Medway.

To be continued…