Flash Says…

Liverpool Care Pathway? It’s about convenience, not care

Posted on: 2012-11-04

The Liverpool Care Pathway has been in the news lately. It’s a care path for people who are dying, whereby invasive treatment is withdrawn and they are left to die peacefully. At least, that’s the principle. It isn’t what my experience found.

A few years ago, a relative of mine was put on the Liverpool Care Pathway. It was explained to my family that he was expected to die, so invasive treatment would be withdrawn, medicine would be stopped (as it wasn’t working, so it was redundant) and that we would be left in peace to spend time with our relative before the inevitable happened. It was presented as the best, and normal, thing to do, and we numbly went along with it.

Some advantages were clear right away; curtains were pulled around our relative’s bed and a “Do not disturb” sign placed outside, so that we were not interrupted by staff asking whether the patient would be having any dinner. We were given permission to come and go as we wished, beyond regular visiting time – and my family began a vigil so there was always one of us present at the bedside.

The heart monitor, which I’d been watching in a daze, was removed – this was a good thing as I stopped focusing on that, instead focusing on my relative. Medicines were stopped. This was all as expected so far. But then my relative’s feeding drip was removed. We weren’t expecting that! I didn’t consider the drip to be invasive – fair enough if it had fallen out, then I could understand the need to discuss whether it was replaced. But it had at no point been made clear to us that liquids and nourishment would be removed – in contravention of the relative and carer leaflet about the LCP, which refers to maintaining the patient’s comfort, and says decisions about food and drink will be explained and reviewed regularly.

This aspect of the LCP has been in the news recently, with one report saying that a patient even rang the police so he could have a drink of water. Should patients be parched and famished as they die? It seems inhumane, something you wouldn’t even do to a dog! If I’d known that my relative’s nourishment would be removed, I would have challenged putting him on the LCP. If a drip is in place why not leave it? No one wants to die thirsty.

After a few days of our 24 hour vigil, to everyone’s surprise, my relative woke up from his coma. Suddenly treatment was reinstated with all haste. And do you know what? He was hungry.

The Liverpool Care Pathway is about convenience, not about care. In my view it’s about making the time before death easier for the living, and for the medical staff who can then spend their efforts on other patients. That’s not good enough in my view, and I’d never support it again.

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6 Responses to "Liverpool Care Pathway? It’s about convenience, not care"

The person who rang the police to get a drink of water (which didn’t materialise, and nor did it when he called his mother) was Kane Gorny, who was not on the LCP, which is normally used for the terminally ill — he was a young man who had a condition that meant he needed to drink water constantly; the nurses at St George’s Hospital in south London did not realise it, considered his requests a nuisance, and then as aggression when his distress escalated. He was not terminally ill; his condition needed management, but he was killed by the staff’s negligence.

Thanks for clarifying that. Some of my medications give me a dry mouth and I usually have a drink to hand, so I can’t imagine how he must have felt, poor man.

I can tell that my relative’s experience was perhaps unusual in that he recovered rather than died, but it just goes to show how misguided we were to give in to the removal of treatment. And nobody ever explained that “treatment” included “food and liquid”. I just would never have thought it; I thought of treatment as meaning medicine and tests, monitoring etc. I feel I was misled. But I digress. Even though Kane’s situation has been misdescribed by the media, at least the profile of the LCP has been raised, so other patient’s relatives may know what to expect if it is suggested to them.

Reading your story it looks to me like your relative was sadly on the receiving end of some poor care that may not have been to do with the LCP.
It really concerns me that he wasn’t disturbed to ask if he wanted any dinner. Patients on the LCP should be helped to eat and drink according to appetite if its safe for them to do so.
Having spoken to specialist palliative care nurses its debatable whether invasive fluids make you feel less thirsty or not (seems counterintuitive I know). If someone isn’t able or doesn’t want to drink then the LCP pretty clearly states they should have regular mouth care, to keep their mouth moist and this is an important part of keeping someone comfortable.
It sounds good that he spontaneously recovered, and I can see from your story why you feel as you do. However it looks to me like the pathway was poorly communicated and maybe poorly implemented. The LCP is just a tool, it can only be as good as the people who use it.

Hi Carly, thanks for sharing your knowledge. I don’t wish to get too much into personal info in issues about my relative, but in terms of not wanting dinner etc. I thought I had stated that he was in a coma (so wouldn’t be eating!) Regarding mouth care, we (the relatives) used the kits to do this. I don’t recall if any nurses also did that – you’ll understand that it was a very stressful time – but my memory is that we were mostly left alone and that this was part of the part of the LCP, that we wouldn’t be bothered at his bedside. I remember that as being one of the benefits we were told about.

One exception was a member of ward staff (not a nurse – an orderly?) who made tea for us and was lovely.

Yes, after a couple of people talking to me about this blog on Twitter I think the issues that have arisen from it are firstly, that it was badly communicated – we weren’t told nutrition would be withdrawn. And secondly that – as is in the press today – people are put on the LCP when they are not necessarily and definitely dying.

Thanks very much for commenting.

Hi..

I read your article and felt I could relate to what you have been through

I’ve been through something very similar with my loved one. Doctor’s had stopped medications, said they would never wake up/be able to communicate if they did.. They were hastily wanting to switch off machines, and water was the first thing to be stopped etc. I was beginning to feel like there was never any other option. We fought for the ventilation to stay on for a few more days.. My loved one suddenly woke up. If we had listened to the doctors, my loved one would not be alive today.

Although the docs didn’t state that my loved one was on the LCP, they were definitely following the steps of the pathway, which were definitely not discussed with the family.

I know people have their own views on the pathway and for some it does work. But you have to know the ins and out of what is involved. I personally feel that families should not be forced to put their loved ones on the pathway – especially if they love life and have so many aspirations…especially if they are young.

I personally found it was a tool used for convenience.

I’m so sorry you’ve been through the same thing as me. I thought it was inhumane to stop the fluids if the drip/cannula was still good. My own relative lived for more than 2 more years and they were valuable.

I don’t know what else to say, except to offer sympathy.

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