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]

"So its back to providing high quality care again that is appropriate for that patient at that time. But if we want consistent care nationally across the country you need guidelines to ensure that everyone is following the same thing. Or the preferred term of the moment "a care pathway""


I do not really believe there is a need for such, indeed it seems to have detracted from individual care and rather placed the emphasis onto some sort of general care practice, this seems to have led to individual needs being ignored, or worse neglected and to some cost. Not in all cases, but in an undisclosed number i.e maybe more than we assume or hopefully less.

Consistent care, may not in event be as good as individual based care in some circumstances and unfortunately may become a gravy train for the worst possible type of care. In the main seemingly, because of a lack of proper safeguards. Therefore becoming subject to the worst possible abuse.

There is though absolutely no need for anyone dying from pain, who has elected not to go onto the LCP, there should be no discrimination, save that maybe the insistence that fluids be allowed and or maintained.

Apologies for the quote, this thread moves quite fast and my eyes do not always keep up.

[claig]

Good post, shergar.

I think there have been some cases where patients were put on it unnecessarily for whatever reason and these are the ones highlighted in the press. But it seems like that is a minority of cases, and it is the right treatment in many cases. The cases where fluids were withdrawn, seemingly unnecesarily, sound like bad practice rather than the norm.

I look forward to the inquiry to see what it says about thoise issues and any potential role that financial incentives may or may not play.

I do think there needs to be a stronger patient charter or set of rights for patients and families where they can suspend going onto the pathway if they are strongly against it, and can opt to use the system that was in place before the LCP was created.

[Amazinglily]

shergar, Whilst paying due regard to the loss of your mum and I have no doubt about the quality of her care, neither am I aiming this question at the treatment of your mum at all but;

If the LCP were to be used incorrectly could it pose a risk to other people who could possibly recover?

[Veritate]

Yet again - "It seems, according to press stories ... " Claig, is there any chance of you accepting that press stories are not necessarily holy writ? Yes, some people may have been placed on the LCP when it wasn't necessary for them. Medics aren't infallible. No-one is infallible. Does that come as a shock to you?

Some people have been administered CPR when it was hopeless and could only cause them distress. Some people receive painful medical treatments which only prolong their suffering. What can be done to prevent this? What rights do patients and families have to prevent that happening? I know, how about issuing some national guidance and training, and reviewing that guidance as necessary?

[Piecesofmyheart]

My beautiful brave 52 year old mum suffered from a catastrophic brain injury. She was in a high dependecy unit. Hooked up to cardiac monitors. Wires, tubes, noise, chaos. CT of brain showed her brain injury was so severe she had NO chance of recovery. The consultant told us that with tears in his eyes. She was dying. And because of my job and what I do I expected her to have a 'good'death. I wanted peace and dignity. But the staff had no experience of caring for a dying patient. We had to hold her in the bed whilst she writhed in agony. We waited for over 40 minutes whilst she screamed in pain before she had analgedia. We watched a junior doctor attempt to recannulate her when she was peripherally shut down. The blood from his failed attemps was smeared on the bed as she died. The last 90 munutes of her life we spent watching the pattern on a cardiac monitor gradually become more and more erratic. She had stopped breathing but because they wouldn't switch the monitor off and there was still some cardiac activity my little brother refused to belueve that she was dying at that moment. His screams will haunt me til MY dying day.
The staff didn't know what to do. The LCP would have made a massive difference. She had no dignity. She had no peace.
A simple document may have made all the difference.

[claig]

I also think that the NHS does need to listen to the complaints of families, because reading the press and that includes the BBC, the complaints do appear to be quite similar in nature. I think the complaints should be catalogued and analysed and the framework should be open to modification that can prevent similar cases occurring again.

[meddie]

Claig there was no system in place before the LCP, it was down to individual dr's and nursing staff to provide end of life care so very much depended on the experience level of those staff involved and their training in palliative care.
I remember pre LCP days where patients who were dying were not given the doses of morphine they required to relieve their pain fully., because the DR was worried it would depress their breathing and hasten their death, so instead they still died but in pain and maybe a day later. That is not humane care, that's the reason for the LCP so the best possible care can be given with all symptoms fully taken into account and prescriptions already in place so any drugs can be given as soon as possible without having to chase busy Dr's half way round a hospital to get it prescribed.
I would not want to go back to that lottery of depending on how clued up the staff involved were.
The LCP provides a framework and prompts to remind staff to consider all areas of care, so even the most junior member has the information they require to provide good quality care.

[Veritate]

Amazinglily, what is amazing is that you don't see the need for or the benefits of consistent guidance across the country. Would you suggest that, for instance, guidance as to good practice in childbirth or in stroke care should not be disseminated across the country? Guidance is simply guidance: none of it in any way prevents doctors and nurses from using their judgment on a case by case basis and according to the individual needs of the individual patient - on the contrary, part of the guidance is that they should do precisely that.

[BoreOfWhabylon]

Piecesofmyheart I am so, so sorry for what your mother and your family went through.

[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.

[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]

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.

[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.

[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]

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?

[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.

[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.

[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.

[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.

[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.

[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 .

[frumpet]

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

[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 .

[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.

[Jollyb]

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