Liverpool care pathway

[stella1w]

Posting here for traffic, not debate,
distraught friend just told her mum, demented, at home with 24 hour care has been put on liverpool care pathway. She spoke to the gp about palliative care thinking it would mean a nursing home and was not consulted about lcp. Gp is refused to let her mum have sedatives or water and my friend is v v v upset and feels this is like euthanasia. She doesn,t seem to know what to do or if she has any rights to stop it. It could take four weeks.
I said if she had doubts she should ask for lcp to be postponed until the children had been consulted and undertood and consented.
What can she do?

[frumpet]

Thank you for reading the link Claig , as a HCP i appreciate you taking the time to do that . It really doesn't matter how could a care plan /pathway /framework is and i really do believe that the LCP is good , what counts is the ability and compassion of those who are following it .

There have been a few instances where i thought the pathway was implemented a little too soon , it really is supposed to be for the final 72 hours of life , which is why there is a three day review written in to it . However as a pp stated above , you could put me on the LCP for ever really and it would not cause me to die .

There are instances where 'harm' could be caused by continuing IV fluids or giving oral fluids . The harm would be basically drowning people , which i am sure you would agree is not a nice thing to do to anyone. However in these cases it should be fully explained to the family so they understand the implications of giving oral fluids or continuing with the IV fluids .

[claig]

Jollyb, then we are in agreement.

I have not said that LCP should not be used, but I am worried about potential misuse and the rights of patients/family to change the course of events in particular with respect to fluids, which according to some families were removed when they felt it was not necessary, and which were then given by the families themselves and subsequently the patient recovered.

It is not only families who have questioned the LCP and complained about some aspects of it, there is also opposition from some medical professionals. That is why it needs reviewing and that is what is going to be done.

[claig]

frumpet, I agree that there are cases where it will be impossible to administer fluids and then it should not be attempted.

But there have been cases where fluids were stopped and families themselves delivered fluids and the patient recovered. I agree that the stopping of fluids in these cases may have been bad practice, but I think it is crucial that something is done to stop bad practice like that occurring, because without fluids the patient will certainly die.

[frumpet]

The problem with oral fluids is that as i have stated before you can actually do real harm if someone isnt able to swallow properly . This should be explained to relatives . We have all experienced the drink going down the wrong way scenario and the subsequent coughing fit . Thats because a small amount of liquid has gone into your lungs and your body is desperately trying to expell it .

[claig]

Agree with that frumpet. But what about the cases, such as Mrs Greenwood, where the family (who are not even trained medical staff) gave liquids in tiny amounts and the patient recovered, left hospital and was last reported planning a worldwide cruise?

Are you saying that you have no concerns about medical staff making incorrect decisions under the framework? What would happen to a patient who had no family in the same scenario?

[Amazinglily]

Has anyone conducted a proper independent MORI-poll of how the public perceive the LCP as a whole? At least then some idea could be formulated about how to address the anxieties which the public have?

Because on doing some research myself, there is no doubt that the media war has all but been lost in terms of the support for the LCP and it is no use using medical reasoning, the public respond by people's experiences. Of course on saying that there will be those here who will again begin to scream and shout about headlines. That is not the point. If these headlines continue, then the public will only become yet more distrustful, that is the point.

Surely The NHS must begin to address the issues raised as regards the LCP?

As for the social media sites, the lines are very drawn between these two factions. There are two or three groups and whilst the supporters of the LCP Facebook group are active and indeed have a good number of people, it loses a little emphasis as it appears to come from only a medical basis. The pro group, is smaller, but possibly nearer to the heart of the public, because of the value of their very sad shared experiences. The public in such cases will most certainly be emotionally supportive.

As for You Tube, all I can see there is what could turn out to be quite an effective advertising campaign, for the smaller anti group, it is supported by a surprisingly large channel. Whilst it may not have much impact, I suspect that the main message is to encourage people to say no to the LCP.

Question is, what is the real effect of all this going to be? You can swear and curse and call the media and individuals all you want, but that will change nothing.

[Veritate]

Claig, you seem to be going round in yet another circle, and also you seem to be once again attributing views to another poster which she hasn't expressed. It's getting very difficult to believe that that isn't entirely deliberate.

You can't possibly read into frumpet's messages any suggestion that she has no concerns about medical staff making incorrect decisions. But the point is that that is no reason to damn the entire LCP as a whole, in the same way that you wouldn't withdraw all cancer treatments just because some medical staff also make incorrect decisions about that.

[Veritate]

Amazinglily, I don't think it's true to say that the NHS has lost all public support for the LCP. You only have to look at the balance of comments on here, for example, to see that that is not the case. Where it has lost support, it is highly relevant to look at the scaremongering conduct of the papers which has brought that about, particularly in relation to those stories where they have clearly presented the facts in a highly misleading fashion.

But why do you suggest that the NHS isn't addressing the concerns that have been expressed, given that the LCP is under review?

And is there any danger of you answering the questions I and others have put to you before on this topic, rather than repeatedly sliding away from them? For instance, why do you say there should be no country-wide guidance, and do you think the same should apply to all aspects of medical care?

[Amazinglily]

Again I did not say it has lost all public support, what I did say was that it is losing the media war and again, which will inevatably lead to further distrust. I have to ask is that what you want Veritate? Going back and calling newspaper reports will change nothing and I have already mentioned that going back to reports is not the point.

The NHS should at least be holding an independent survey to find out what public opinions are, then moving ahead it could address any problems which are evident from that exercise!

Also, it would be interesting to find of those posting here, how many come come from a working medical background? In order to prove the public benefit of something, it should be taken from a much wider background, than just the opinion of medical staff, or any group in either support of or opposition surely?

The NHS is offering a service to the public, is it not therefore, proper that a full public consultation exercise be undertaken to find out how satisfactory that service is? Where could be the harm in that? Unless that is the NHS is afraid of the public reaction? But if it is, whatever else happens, you will not be able to bury this and maintaining the present stance is likely to see matters only becoming worse.

As for the review, it is only a panel of medical health workers and politicians, with some representation from outside groups. It is however, not the public at large and the public are not too enamored of politicians anyway and please do not tell me that politicians have the best reputation in the world of offering reassurance or being trusted? In such case, exactly how do you think a review is going to resolve the overall issues?

The main emphasis for this should be to find out on a wide scale what the public feel and think, then address the issues, a simple series of well worded questions will be able to answer as to what depth "any" public mistrust runs to.

If you are not however, offering a care service to the public I would be happy to reevaluate this posting.