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?

She was taken off it after she recovered due to her family dripping water to her against the nurse's advice. If she had been kept on it then she would never have survived because they removed her fluids and that will lead to death.

She is not the only case, and they are not the only family who have compalined, which is why I suspect that there is now no altrnative but an inquiry into it.

The Mail and Telegraph have made it public and it can't be hidden away now. The secret that half of people on the LCP were not told is now out in the open.

Now we will discover why and if there was anything to hide and what if any financial incentives were involved.

Claig, are you purposefully ignoring what everyone is saying? If the LCP had been implemented correctly she would have been given water and therefore after showing signs of improvement would have been taken off it.

'The secret that half of people on the LCP were not told is now out in the open.'

Claig, how many people do you think get put on the LCP after they are already unable to communicate, already in the throes of dying. Often the patients are not able to know, it is not some wilful secret being kept.

So, I'm just thinking about this experience and how it relates to patients being put on the LCP.
Do patients have to request a drink ?
Some may be glad and able to accept something but not well enough to request it ?
And I'm guessing people vary in their ability to accept fluids even at the very end of their lives ?

Juggling, it's a difficult one. I think it all comes down to the process of dying. There are subtle behavioural changes that take place when someone is beginning to die, normally a general withdrawal from the world which often includes not actively eating/drinking. Often people know when a loved one is beginning to pass over, even if they can't put their finger on why. Ultimately there is no way of knowing definitely if someone is dying - no blood test or definitive sign we can look for - so it may have been that your friend was not requesting water because his mind was already beginning to make the transition, more of a subconcious change than an active decision. I'm not an expert but I think this is something to do with it.

As you keep pointing out claig, she WAS taken off the LCP when she improved. That is what everyone is trying to tell you, it is not used for killing people off.

The issue with the nurses telling the family not to give fluids is a poor understanding and poor training of the LCP. Its a different issue.

Why can't you grasp that?

This is from Norman Lamb MP. It shows that it is not a one-off.

?Why it is that in many hospitals, patients are being denied food or drink, even though the guidelines say this should not happen? It is deeply disturbing and needs to be properly understood and investigated.'

'Claig, how many people do you think get put on the LCP after they are already unable to communicate, already in the throes of dying. Often the patients are not able to know, it is not some wilful secret being kept.'

That's why I expect teh medical staff to ask for the family's consent and reports say that many families are not asked for their consent.

Coming back to the DNR case. The article said that the notes of the woman who died said DNR and that she agreed and that 3 of her 4 daughters also agreed. The daughter denied it. What type of informal casual system is it that does not get approval in writing with a signature of patient and family before making critical decisions such as DNR. Are we expected to just take teh word of whoever wrote teh note that consent was given? It is incredible how lightly this seems to be managed.

This is people's lives we are talking about and there must be tight and open procedures.

'she WAS taken off the LCP when she improved. '

They withdrew her fluids. She would never have improved and been taken off and subsequently lived if her family had not taken things into their own hands and dripfed her water.

Do you think that that is acceptable care? I don't and I am glad that a review of teh LCP is now being undertaken. probably after pressure from the Mail and Telegraph and the brave families who have shared their stories.

In my experience the dnr form was needed to be signed by the medics and consenting next of kin.

LCP - was there a form? Not sure, if there was my father would have signed it.

'I don't know the ins and outs of your fluid example.'

Yet you are banging on and on and on and on and on about fluids being witheld. When you don't have any understanding (or willingness to find out) about WHY fluids are not SAFE to administer for the very significant majority of patients in the terminal stages of their illness.

When you are arguing that something is fundamentally flawed, you need to at least understand the mechanics of it at a basic level.

'WHY fluids are not SAFE to administer'

They were safe to administer for Mrs Greenwood, but the medical experts didn't want to. I don't believe that all of the people who have fluids removed on the LCP have to have them removed, just as Mrs Greenwood didn't need hers removed. Fortunately her family (not medical experts) took over and saved her life.

FFS will you shut up about Mrs Greewood.

Nobody has denied that from what you have said she was treated shockingly but that is POOR CARE NOT THE LCP.

Claig is a poster that lives on conspiracy theories.
What we decide for our beloved relatives at the end of their lives, when they can no longer make that decision themselves, will be the hardest decision we'll ever make.
Claig, unless you've been through this, please give it a rest.

Don't you understand that these things are happening under the guise of LCP. That is what the Mail reports about and what many families have said. They are complaining about LCP, they don't believe it is the panacea that you pretend. Now there will be a review into it to find out what exactly is going on.

Stop burying your head in the sand, join the people, ask questions and demand answers.

I have had relatives die in hospital and their treatment was not good.

I believe Savile and his hospital charity was a conspiracy. I agree with the Mail and Telegraph, and when it eventually all comes out, you will follow their lead too.

They call it a pathway. Ask yourself where it leads?

It leads to death, claig. I don't think anyone, particularly those of us who work in this area, ever forget that. I'm not sure what your point is?

FWIW, my mother is in a care home suffering from Alzheimer's Disease. She is currently well-ish, so unlikely to need end-of-life care just yet. But I have told the staff that I wish for her to be placed on the LCP when the time comes, and that she is also DNAR. This is what she and I discussed many, many times over the years, before she became ill. It's her wish, and mine, and I feel reassured that I am carrying out her wishes.

claig, please do give it a rest about Mrs flipping Greenwood.

Claig The most important thing about the LCP is that care has to be carried out and documented every 4 hours hours or more. No one is trying to deny that there are instances where the care of a patient has fallen well below what should be expect but the LCP actually helps to stop this.
Like Sirzy says its poor care and poor implementation that's the problem, not the LCP itself.
Please don't try to make parallels with Jimmy Saville, that's quite disgusting.

'It leads to death, claig. I don't think anyone, particularly those of us who work in this area, ever forget that. I'm not sure what your point is?'

Sorry, Fishandjam, I have to mention Mrs Greenwood again.

My point is that it leads to death in the majority of cases and that once you are placed on it (half of people without being told that they are on it) then you are on a one-way path in the majority of cases. That was teh path that they placed Mrs Greenwood on, but her family dragged her out of the path and back to life.

'?The fact is that there is no scientific evidence to support the diagnosis of impending death and there are no published criteria that allow this diagnosis to be made in an evidence-based manner.'

but too bad for you if they decide to put you on it without your or your family's consent, or if they write DNR without telling you.

'Last night Mrs Greenwood said she is angry that doctors gave up on her and has welcomed the announcement of a review into the ?end of life? treatment regime.'

One day when it is all revealed you will thank people like Mrs Greenwood and Cheryl for standing up and informing us of what is happening in the care system.

Op here. Since MNHQ have ignored my request to delete my own thread despite the hijacking and since they haven,t pmd me as promised, I,ll update.
My friend today asked the HV for an air mattress for her mum and was told she did not qualify because she was not dying and was mobile. Yet the dr has told the carers to stop giving her food because she is dying. It is shocking.

I mentioned Savile only because LBE said I believe in conspiracies.

They are going to review LPC. That is not because they think there is no problem with it. They are probably reacting to the pressure and criticism of it from newspaper columnists and families who have shared their experiences.

OP, it does sound shocking - at the very least there's a major and unexplained difference in the opinions of the HV and GP. I second the posters who've said your friend should get a second opinion.

CBA to read the whole thread. I know that last week my mum was offered the LCP. She was in renal/cardiac and lung failure. There were many options - none of which would have made any difference. She chose to refuse all further treatment. LCP was an option and as explained by Doctor, a way of making her more comfortable without giving her life prolonging drugs. We never got to that point as she died last Tuesday. LCP would not have prolonged her life, it would have made a not so old lady a bit more comfortable. We were happy with it - do not read the Daily Fail...... Hope that helps.

OP's friend was not consulted about LCP for her mother. She was told. Doctor has refused water and food it now seems.
Her mother is still mobile.

She wonders if she has any rights.

What do you think she should do - just accept it?

Of course it is shocking and there must be a way of patients and families having rights, but I don't know what it is or if it is possible.

Does anyone know about rights?

You and Cheryl are doing a great job of articulating your arguments Claig

'They were safe to administer for Mrs Greenwood, but the medical experts didn't want to. I don't believe that all of the people who have fluids removed on the LCP have to have them removed, just as Mrs Greenwood didn't need hers removed. Fortunately her family (not medical experts) took over and saved her life.'

And again - WHY do people have fluids removed ??? Give you a clue - the answers can be found further up this thread....