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?

[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.

[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?

[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.

[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.

[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?

[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]

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.

[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.

[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 .

[Jollyb]

Claig- your final paragraph is exactly what many of us have been trying to say over the past 500 posts!

[claig]

The following from the guidelines sounds good:

A full multidisciplinary team reassessment and review of the current plan of care should be triggered when 1 or more of the following apply:

1. Concerns expressed regarding management plan from either patient, relative or carer or team member.
   

That gives a patient and family the right to express concern and trigger a reassessment.

Reading stories in the papers, I wonder whether it happens in all cases, but it is part of the framework and that is good. If it is not followed in some cases, then that would be poor practice rather than the fault of the framework.

[frumpet]

The above link , which i hope works , gives an example of the document , please pay particular note of page 2 of the actual care plan itself .

[frumpet]

www.liv.ac.uk/media/livacuk/mcpcil/migrated-files/liverpool-care-pathway/updatedlcppdfs/LCP_V12_Core_Documentation_FINAL_%28Example%29.pdf

[frumpet]

claig et all , please have a look online and find the Liverpool Care pathway , read it and come back when you have done that .

OP , not sure if you are ever going to come back on here , but did you mention to your friend about contacting the district nursing team ? if the GP has decided to put her mother on the LCP , then there would be multi-disciplinary input . They would be a useful port of call , and they would also organise a mattress etc . Get her to speak to the district nurses today , not the health visitor , the district nurses and hopefully they will be able to help her .

[claig]

I agree that the guidelines are good and necessary.

I am worried about people who have been placed on it when it was unnecessary. I think the implementation of the guidelines needs to be formalised, and who was responsible for which decisions and why they were made needs to be recorded and made clear (if this is not already done).

I think there needs to be more training, more scrutiny of decisons that were made and if necessary punishment for not following guidelines.

I think that any decison to remove fluids should be carefully scrutinised in the light of reports of people having survived to live a healthy life when water was given by fsamilies themselves, and given that removing water is not part of the LCP guidelines. If it is found that the guidelines were not followed in this, then there should be punishment for whoever took that decision.

[colleysmill]

National guidance and Clinical Standards or care for treatment are fairly standard at the moment - NICE certainly do a good of getting them out.

The discussion of local care vs national guidance is a really valid one and if you think about the number of media stories around the "postcode lottery" of healthcare provision over the years its one the public have been concerned about. The argument of local services for local people also has some credibility though.

Some of the guidelines/standards are not quite as specific as others - the standards around care of people with cystic fibrosis for example are very clear and extremely specific and I understand the cf trust, on the basis of the evidence they collect, they believe this has driven standards of care up around the country.

On balance, at the moment, I err towards the side of national guidelines generally, particularly because the delivery of care is changing quite rapidly within the nhs with changes that have never been seen before - I'm thinking about the advent of local commissioning arrangements and Any Willing Provider. The public and the commissioners need outcome measures and clear standards to bring services to accountability to ensure care is being provided - ultimately the responsibility of implementing them with lie with the local commissioners and the contracts they award.

[DizzySometimes]

I wonder, too, about the use of the LCP versus not using the LCP. It's difficult to know why sometimes it's used and sometimes it is not. I wonder, though, if it is because sometimes people die very suddenly (someone with a cardiac arrest who didn't make it through CPR or someone who had a very severe stroke and died prior to getting to hospital), and therefore did not have the chance to be placed onto such a pathway. Or whether, similar to what happened to pieces' mum (I'm sorry to hear about that, pieces), staff were not properly educated/aware of such a pathway, so it was not used.

I disagree that having a general pathway can make it worse, not better, and am not sure where the logical of that comes from. I think that, when it comes to dying, anything that can give patients, family and medical staff help in making that difficult decision about how to care for a patient when they're dying can only be a good thing.

[DizzySometimes]

"OK, guidelines are guidelines, but it is how and when they are implemented that needs to be looked at. It seems, according to press stories, that some people have been placed on the LCP when it was not necessary for them.

What can be done to prevent this? What rights do patients and families have to prevent this happening and to question it or to appeal against it? "

claig - I think another poster (or several, probably) mentioned that people can be taken off the LCP if it is found that they are making a recovery. I think other posters also mentioned that it is not just one doctor who reviews a patient - indeed, they'll be seen by a number of doctors and nurses during their care on the LCP. Patients are monitored so that decisions can be modified if the LCP is no longer deemed appropriate. I've seen it happen myself, more than once - patient appeared to be failing, was put on the LCP, rallied and was taken off the LCP and then offered more active treatment. As others have said, if patients are not being given fluids (when their swallow is safe), or the conversion to active treatment is not considered when their condition improves, then (and I'm repeating what other posters have said, so forgive me) this highlights poor care, not the fact that the LCP is not a good tool. I think, if there are cases to answer, then this would suggest better training is required to ensure use of the LCP is consistent across the country, and does what it intends to do: to give those dying peace and dignity.

As for what can be done to prevent it - patients have the right to state what they would like to happen to them. Please remember, though, that when a patient is terminally ill they sometimes are not conscious to make that decision. Family can talk to the medical team though and raise concerns at any time. Whilst predicting death is in no way an exact science, there are times that experience can mean that the medical team are aware that the patient is not going to get better, and will advise the family of such. Believe me - having to communicate that to a family is not easy and I've seen doctors do this with a great deal of compassion and care. So, to then hear people state that doctors are stalking the wards deciding who to kill next - it makes me realise what a thankless task working in the NHS is. People are, of course, entitled to their viewpoint and there are cases, unfortunately too many, of poor care, but I would suggest not tarring all the NHS and its employees with the same brush.

[Amazinglily]

Cartimandua, we are not that fortunate that all of us end up being masters of our own fate, the unforeseen can strike at random and many no doubt will rethink their own fates, before their time comes!

But I like your last sentence, it is excellent, each to his or her own demise, be that what it may and all should indeed keep their noses out! - One thing we both can agree on.

[Amazinglily]

susieshoe, is this the sole amount of reason of your arguments in stance of the LCP, some childish tittle tattle of who did what to whom? Is there nothing more to you than this? There are millions of people on Facebook and if you put your name up, sometimes the flak will come back no doubt, inevitably if you have an opinion about something, others think you are not supposed to have an opinion about.

Now could you enlighten me as to what the historical aspect is of this extermination policy you mention?

[cartimandua]

When my time comes I want to go quickly, quietly and painlessly. I have tried to discuss with my son but he doesn't want to have to contemplate such issues just yet, so I'm going to write it down. (Not that I'm intending to die just yet, but am probably a lot nearer to it than most of the posters on this thread, and it's as well to be prepared.) Like lots of people, I'm not particularly afraid of death, but oh boy am I afraid of the process of dying. Which is a shocking thing to have to feel in the UK in the 21st century. One should be able to have total confidence that good end of life care is the norm, and the LCP is a means to that end.

I don't care how the "all life is soooo precious we must force people to hang on to it as long as possible whether they are suffering or not" brigade feel. They can feel what the hell they like about their own demise, but they can keep their beaks out of mine, if they don't mind.

[Amazinglily]

Pieces, Now I understand and accept, I am truly sorry, and I know it will be of no help to say, that those doctors and nurses who attended your mum, probably did so with the best intentions and did what they thought were right for them to do, acting as they saw in her best interests, in trying to save her.

Worse than this though and for you particularly, I am not sure that even now, under the same circumstances the LCP would be applied, especially if it was a brain injury. Even though perhaps something similar would have been justified. You also speak truthfully, that haunting memory of your young brother will carry with you for the rest of your life, the pain of losing a loved one is bad enough, let alone in such circumstances.

Maybe there is some argument here for a living will? Which protects someone from treatment if such a tragedy occurs. Certainly though a lesson in learning for all of us, none of us know the manner of our own passing, whether it be by LCP or not.

I do think you should have been allowed to switch the machine off, although that is where life saving does occur, it is also where there is a life releasing denial. Those machines do support life artificially. A question I have often asked myself and would love to know the answer to, is that do the benefits of those machines outweigh their drawbacks? After all when it comes to the life and death of our relatives, what would we do, or not do, if we all had a second chance?

Pnce again Pieces, truly and deeply sorry to hear of the manner of your mum's death.

[claig]

meddie, good post,
The guidelines are good.

It does seem that in some cases the guidelines are not being followed in teh best possible manner e.g. to do with fluid removal as reported by families.

Maybe a mechanism of tightening up how the guidelines are implemented needs to be established, ideally something that is agreed by patient/family and doctors. I think patient/family need to have or feel that they have more input in to the treatment. Before now people were placed on it without even being informed. I think that is wrong.

[Susieshoe]

'Susieshoe, I do not think your comment is very helpful, naming those who oppose the LCP, is only going to detract people away from your message and make others seek out why they are opposed to the LCP. I also do not think your comment towards the daily heil as you put it are not helpful, After all if this were the days of the daily heil, you would find a lot more followers of Hitler than there are on your Facebook page and no one could say that Hitler was right, so Could we keep to topic please?'


Amazinglily - hmmmmm James Mee (whoops - named him again) doesn't seem to have any scruples re: naming LCP supporters on his Facebook page - he will happily repost their comments on his page and spin his pathetic propaganda around them without allowing the OP any rejoiner because they can't post! He has even linked to people's personal facebook page. So please don't lecture to me about James Mee because as far as I'm concerned, he is getting what he deserves.....

And as for referring to the mail as the daily Heil - that's a long time accepted description for the paper amongst people who credit the paper with the disdain deserved by something that should only line a cat litter tray.....it's YOUR lot which have bought up the subject of hitler, nazis, death camps eto ad finitum.........it's your lot who liken healthcare workers to nazis, it's YOUR lot who liken the pathway to hitlers extermination programs...

[claig]

Pieces, I am very sorry to hear that. That is awful.
There should be guidelines and pain relief and drugs are vital.

What worries me about the accounts of families is removal of fluids. Hopefully, the inquiry will be able to clear up what the situation with fluids is and why so many of teh complaints seem to be that fluids were withdrawn. I think that that is one of the main issues that needs to be addressed. The complaints of families need to be investiagted and we need to discover why things in thos cases happened as tehy did, and we need to learn lessons from them.