Liverpool Care Pathway – Through Rose-Tinted Glasses

This is BBC RadioNottingham with Mark Dennison taking calls and speaking to a senior palliative care nurse.

Mark brings you great Nottinghamshire guests and their amazing stories.  

Mark Dennison introduces the discussion by owning that the Liverpool care Pathway is ‘something new’ to him. However, as the discussion ensues, the presenter becomes more and more enamoured by his guest who speaks in support of LCP and his role changes from one of impartial presenter to one of interested advocate as he falls under the spell of her sweet dulcet tones.

The transcription which follows begins at 41 minutes and is wholly an account of caller, Ronnie's, brush with Mark .

Mark Dennison

Ronnie’s in Carlton. Morning Ronnie.

Ronnie

Morning

Mark Dennison

Go ahead

Ronnie

Ah, this really incenses me, this really does. I mean as far as I’m concerned it’s not a care pathway; it’s a death pathway

Mark Dennison

But they’re dying anyway

Ronnie

But there’s been an awful lot… No, I disagree with you. Theres’s been an awful lot of hoo ha in the press by eminent doctors saying that it’s not a definitive, em,  time… you cannot say when somebody is going to die. I mean sometimes they can, sometimes they can’t. There was one poor lady took 12 days to die. You know, how is that care? It’s not. It’s just not. It’s absolutely appalling

Mark Dennison

 Yes. Well, okay, let me stop you there and ask you what the alternative is?

Ronnie

Yeah, They could… well nobody has the right over life and death. We.. we did away with capital punishment in this country, but it seems to be… no, no…

Mark Dennison

Yeah. (Interrupts)  I’m sorry, no, I’m going to stop you again, no. Janis has been explaining about how this Liverpool Care pathway works. She’s been explaining how it works in practice…

Ronnie

In theory…

  

Mark Dennison

At the Nottinghamshire – no, in practice at the Nottinghamshire Hospice and elsewhere. So, if it’s not in place, what else is there?

  

Ronnie

Well, you let Nature take its course. You wouldn’t deny food and water to a dog, would you?

Mark Dennison

You let Nature take its course...?

  

Ronnie

Yes, you do. There’s a time to die and there’s a time to be born. And my father, eleven years ago, was in hospital. He was talking. He was all… He’d got an infection; he wasn’t well. And I was fetched in and they said to me it would be kinder to remove all food, water and medication, so that he sleeps peacefully away(!) Would you like to die of lack of water, lack of… sustenance? It’s not right. It’s all very well, when you’re in your 30’s, when you’re in your 40’s and you’re healthy; it’s all very well saying, “It’s not me.”  I mean, there’s a famous poem that they said, they came for the Jews and I didn’t do anything because I wasn’t a Jew. And then they came for the Trade Unionists and I didn’t do anything because I wasn’t a Trade Unionist. And then, eventually, they came for me and there was nobody left to speak up for me. And I think this is what this is doing. And there is also a very, very worrying trend against old people. And I read, Norman Lamb, the so-called Care Minister, I read in the local… I read in the press. Two or three papers have got it in. Where they said he’s got this toolkit in place where he’s asking doctors and doctors surgeries to put on a list people who they think will die in the next 12 months. Well what’s all that about, for goodness sake?  You know…                                 

Mark Dennison

Right, well, I’ve got to say I haven’t read anything along those lines at all. We’re talking about this pathway today.

Ronnie

(Attempts to speak)

Mark Dennison

Mna, mna, I’m sorry, let me just let Janis come back at what you’ve been saying there. Janis, go ahead.

Janis

Can I just say that the list that you’re talking about probably refers to something that’s known as the gold standard framework. Ehm, when people have got a life limiting illness and they are deemed to be in the last 12 months of life, it’s a flag for the GP to be able to provide extra support, extra information, extra care for that patient to allow them to access facilities that we provide in our day therapy unit, or that Hayward House would provide, or other Hospices will provide… ehm, to ensure that those patients are cared for to the best possible, ehm high standards in that last… I’m sorry…

Ronnie

Can you tell me then, why doctors and professors, professors of medicine, are saying that it’s a very subjective thing; that nobody can say that person will die in the next 12 months? They can presume, they might say, well, what he’s got, but, you know, Nature is wonderful and not everyone follows a pattern

Mark Dennison

Yeah. Wait. Haven’t we already…? We’ve had a, you know, one person’s experience of a woman, her own mother was told

Ronnie

Can I tell you about my…

Mark Dennison

She was, she was told that she didn’t have long to live, she was put on the Pathway, her daughter objected and she’s still alive today and this Pathway does allow for flexibility, doesn’t it?

Ronnie

I doubt it. Why is it then that poor lady that em, she was in the newspaper and she’s kicking up because it took her mother 12 days to die and they refused to take her off the Pathway, refused to give her any drink… You know, it’s, it’s a very, very worrying thing this is.

Janis

It is worrying and I have to say that if people have got concerns the have got every right to raise those with the medical professionals that are involved. There is no reason why, you know, you couldn’t ask for a second opinion. I have to say that I can only speak from personal experience. And you’re absolutely right. Eh, we cannot predict when someone will die, but people who have been working in the

Profession of caring for people who are dying, so, you know, oncologists, palliative teams, they can make a prediction going on the experiences of others. And that’s how we build our knowledge base. And we don’t get it right every time. And I’m really pleased that we don’t, a motto that we have at the Hospices that we can’t add days to your life but we can add life to your days, and by supporting people in those last 12 months, then they do seem to sustain their life a bit longer and many of them will outlive the prediction of the Hospital Consultant.

Ronnie

Can I just say that nearly 20 years ago, 20 years ago next March, (yes) my mother was in hospital, she was, all right, she was, she’d battled with cancer, but they were sending her home on the Saturday. On the Wednesday, I had a phone call, her blood pressure had dropped. And when I got there, she had died, and this young doctor, Chinese young woman doctor, took me in and there’s my mother lying there, and I’m distraught. And she said nobody had expected her to die. And she took hold of my hand and she said, bearing in mind what your mother had, we took the decision not to resuscitate. Did we do right?

Janis

I’m sorry, I really don’t feel I can comment on that. I think that’s a completely different, em, argument to what we’re talking about today, but I am sorry for the experiences you’ve had and I’m sorry that you didn’t appear to have the support that, you know, we would like to have offered had you been, you know, under our care here...