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?

Piecesofmyheart so far all I have witnessed from the Pro LCP side is exactly the same to be honest, save for the fact the other side have experienced the LCP, through the loss of their relatives, you talk about facts, but have produced very few of your own! save of some quote that 95% of people are happy? If we are to believe that, it still means that there are 5% who are unaccounted for.

Fact, people have claimed their relatives have died unnecessarily on the LCP counter, acknowledgement that mistakes have been made? The question is have those mistakes amounted to premature death and we all know what that implies.

Fact it has been claimed that the process of the LCP has involved, systemic abuse in the application of drugs, assault on patients, incorrect diagnosis being made all within hospital environment. Whereupon the care processes have failed, which has led to both patients and relatives feeling desolate.

Fact, that the relatives of some of the patients have not been advised of the use of the LCP,

Fact, that there are on going court cases, relating the use of the LCP and that families have sought documentation under the freedom of information act, to find out whether their relatives were placed on the LCP and whether they were treated accordingly.

What an utter mess, indeed and I am sorry but you cannot say the NHS has performed to the best of its ability under this at all. I also believe that soon a lot more information will shortly come into the public arena.

As for hysteria, the only hysteria which I can see, has come from the NHS, because people disagree with its practices.

So again, I come back to the question, what can the NHS do to regain public confidence in its services, relating to the LCP? Arguing with people about what went wrong or did not go wrong is not going to get anyone anywhere, all it is going to do, is make those who feel they have suffered an injustice fight harder. I do not believe that is in the best interests of anyone to be honest.

Veritate, according to the ethics article that you posted earlier, the Mail also did not mention that teh doctor who witnessed teh 10 babies etc. was not a UK doctor and was abroad.

So, yes, not everything the Mail says is always the full information, but then again not everything it says is wrong.

I know one of the people behind the LCP very well indeed and they are very definitely one of the most humane, decent human beings that you would find, also quite brilliant in the field of palliative care. The LCP is NOT euthanasia, torture, killing people off, it is intended to be hopsice-style care at its best, dignity in death. .

Amazinglily, do you ever take medication of any sort? Does it occur to you that it is only made available to you after exhaustive testing including drug trials operated by the doctors and nurses whose judgment you don't seem to trust at all, and it has been formulated based on peer reviewed research? Given the choice, would you really prefer to take pot luck based on whatever piece of woo the Mail's editor has decided to promote this month?

'The fact that claig has to keep going back over and over and over again to the Greenwood case shows the weakness of her arguments.'

The reason for that is because I have not got time to google every article and every case, so I use that as an example.

I have not said that the LCP is bad in every case, but what concerns me is if it is bad in any one case. That is what I want looked at. I want it improved so that mistakes do not happen and so that people's lives are not ended prematurely. That is why I quote teh case of the man who lived an extra 14 months after Professor Pullicino removed him from the LCP that a weekend cover doctor had placed him on without informing his family.

You seem to think that there are no problems with it at all, and you seem to discount the stories of families in the nespapers etc.

Even Norman Lamb MP was concerned about the stories in the papers and there will be a review into it.

so you can tell now a patient who is dying has metastates from just looking at them ? and i did not refer to her telling lies .. but to bring the fact that did she listen to what a doctor was telling the patient had , and how they derived at that information . my point is the patient not directing at anyone scanned while they are on the pathway or before ?

Theres going to be a review into it? I hadn't realised that, why didn't you mention it sooner Claig

god help us all if you who claim to be of some intelligence can pick out someones spelling mistakes .. is this a debate or a spelling test ..
i must consult my dictionary in the future shall i ???? get a grip we are on a forum of mums net ! now i have to be up early so we will continue our spelling test soon xxxxxxxxxxxx mwah

claig is absolutely right though do you not think? would you have rather had that person die? At least then you would not have been brought to account in the public arena to account for Mrs Greenwood, or should you rather not be saying we have not been implementing the LCP in a safe and correct manner, therefore we need to re-look at the LCP and its implementation

Or Is it that you would prefer people to die, so you do not have to face these issues surrounding the LCP? If that is the case, then there may yet be a greater tragedy in this which is yet to unfurl.

Am I wrong in questioning the safety as regards the usage of the LCP in light of the NHS protestations of its value, at this point I am actually unsure. The ideology seems to be in order, but the practice of the LCP, seems to leave much to be desired, in terms of end care.

The last question of course here must be, is there any justification for the relatives of patients to believe that their kin have been killed by use of the LCP? I must admit it is one of the worries I have and there is nothing here which reassures me at all as regards the safety of the use of LCP, certainly not from press reports, however also not from the NHS.

I would be very hard put to place elderly relatives on this pathway, I remain wholly and completely and totally unconvinced.

Horstep - I really can't make sense of the majority of your post as it makes no sense at all but in response to this bit :

'so you can tell now a patient who is dying has metastates from just looking at them ? '

I would say no -I tend to read the notes or listen to communication from my colleagues Things like mets tend be yunno documented ? As they tend to be quite important as a prognostic factor....... (Repeat to fade......)

'Theres going to be a review into it? I hadn't realised that, why didn't you mention it sooner Claig'

I agree, I should have said it more often.
What that signifies to me is that there are some possible worries about its implementation and that it needs to be looked at.

claig: I have not said that the LCP is bad in every case, but what concerns me is if it is bad in any one case. That is what I want looked at. I want it improved so that mistakes do not happen and so that people's lives are not ended prematurely. ...

Fine. A review is happening, as you know. So why are you still repeating the same points?

You seem to think that there are no problems with it at all, and you seem to discount the stories of families in the nespapers etc.

How dare you misrepresent what I have said? You know perfectly well that I, and indeed all or most of those supporting the LCP, have acknowledged that it is not infallible. Yes, we do discount the newspaper campaigns because the the Mail campaign in particular comes from a paper which has repeatedly misreported the facts about the LCP. We are perfectly happy that the LCP is being reviewed. We are expressing legitimate concern about the hysteria which is being whipped up and which is having the result that people are dying in agony all over the country because their relatives have been spooked into refusing to contemplate the LCP.

The question I would most like to ask, is there anything a person can do to refuse the LCP, I am worried about elderly relatives and remain very unconvinced this is right for them?

Have cheryl and her dad invited all their daily mail reading LCP hating friends over to MN?

I cannot even be arsed to justify some of the comments on here.

LCP does not stop people having food and fluids.

MNHQ sort it out?

Amazinglily, so there are court cases about the use of the LCP. There are court cases about the use of cars. Does that mean that you refuse to get into a car, or even to walk on a pavement in the vicinity of cars?

I can't believe at the number of posters that keep quoting the fucking Daily Mail as some sort of oracle .

Veritate, I apologise for misunderstanding your position.

'which is having the result that people are dying in agony all over the country because their relatives have been spooked into refusing to contemplate the LCP.'

Are the 2/3rds of people not on the LCP but in the same near-death condition dying in agony? If so, why is this being allowed?

Chesty Nut - I fink I luffs you

There are I think bound to be cases where death is thought to be imminent and unavoidable when the person then goes on to recover...because it is completely true in medicine that it is often hard to be 100% certain about anything, people being quite amazing things.
However: ever done CPR on someone in whom in whom the inevitability of death has not been recognised? felt their ribs crack? inserted large bore cannulae in their groin/neck (a piece of pointed plastic not much smaller than a pencil)? and more...without any hope whatsoever of regaining a cardiac output...it is an awful thing to do.
It may well be an imperfect science to try and predict when death is inevitable (perhaps sometimes easier than others) but I think we do have to try.
My own feeling is that the problems discussed don't arise from the LCP itself, but failings in care around its use - not talking to families, not actually carrying out good nursing care, not getting the underlying diagnosis/prognosis right. Similar problems with care can very sadly be found in all areas and I agree very much with someone above who said that's what we should be trying to end.
as an incidental, many dying people are oligoanuric - therefore fluid requirements are very low. a bit like dialysis patients who have to drink as little as possible to avoid fluid on the lungs.

lily, you say "what steps is the NHS going to take to reassure the public that they are going to be listened to properly if there are mistakes made whilst using the LCP to determine whether a patient is going to die."

Oh dear. The LCP is not "used to determine whether a patient is going to die". It's a protocol for palliative care for a patient who is already dying.

I'm still waiting for a response to my earlier post, incidentally.

'I'm still waiting for a response to my earlier post, incidentally'

I wouldn't be sitting up late specially Fish......

Claig, you don't know anything about the other 2/3, neither do I. I haven't seen evidence which even demonstrates that that is an accurate estimate. However, if it is, I hope most are not dying in agony because not every type of terminal condition has that effect, or because it is being tacitly accepted by all involved that painful interventions shouldn't be used even without the LCP being considered. Remember, it has been accepted literally for centuries that there are always circumstances when it is a doctor's responsibility not to treat a patient when treatment can only prolong suffering.

But some people are dying in agony unnecessarily because their relatives have refused to let them go on the LCP, or it hasn't been suggested to them, or whatever. And that is shameful.

That's a ten four pieces!

I'm a doctor who has used the LCP a lot. It is simply a checklist that allows us to ensure that patients who are dying do so in as much comfort as we can produce for them, and to tailor treatments to their individual needs. People DO NOT die because they are on the LCP, they die because they have an underlying terminal condition. I am perfectly happy to spend a month on the LCP to demonstrate this. Watch as nothing happens. I have never withdrawn food or oral fluids from any patient who still wants them, and has a safe swallow (indeed, I have encouraged relatives to bring in alcohol for LCP patients who request it). The LCP paperwork is freely available online; please do Google and read it if you have doubts about any of this. I think you'll be surprised.

Of course the LCP is not always implemented perfectly, and some patients who improve move off it again. Life isn't perfect, and medicine is highly complex. We will never get to a place where 100% of people are happy that correct decisions have been made for every patient, because there are so many grey areas and subjective opinions, and as a society we are uncomfortable with dealing with the fact that everyone will die. The issue of consent is also complex because in UK law, no adult can give consent for any medical procedure for another adult - medical staff will treat any adult who can't consent for themselves in their best interests. It is nice to have their relatives on board, but it is not a requirement in law. Of course, discussion with relatives should be held where it is possible.

Please don't believe papers like the Mail on such an emotive subject. They were responsible for much of the MMR hysteria too (a subject on which they are now oddly silent) and this undoubtedly cost children their lives. How sad that they are now likely to be responsible for patients dying in greater distress because patients and relatives refuse the LCP if they believe the nonsense pedalled as fact by the worst elements of the gutter press. The whole piece about children on 'death pathways' that was selectively edited out of a longer and more thoughtful piece in the BMJ didn't even discuss a UK example, but was about a case in the USA, which was conveniently ignored in the Mail. The LCP is used for adults.

Yes and some people are dying in agony when they have been placed on it too.