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?

[SantasHairyBollock]

and OP, it sounds like someone has misinterpreted the guidelines or is just plain wrong, what you described is not the intention at all > I'm sorry you are going through this.

[Piecesofmyheart]

Another useful source of info :

www.liv.ac.uk/mcpcil/liverpool-care-pathway/

[Piecesofmyheart]

Cheryl -I thought you were leaving the thread? I'm really not convinced that your posts are doing anything to help the OP ?
Perhaps read the links that have been posted and they might help you to form a coherent argument.

[Madratlady]

Cheryl, you appear to have been reading the Daily Mail.

First of all I am a nurse working with the elderly so I do know what I am talking about, and I can assure you there is no big conspiracy to kill off the old and frail!

The LCP does not deny food and drink. People can eat and drink whatever they want as long as they are able to. I have looked after plenty of people who have continued to eat and drink in their last days, although as people get closer to the end of life they often don't want to eat or drink or are unable to.

The main aim of the LCP is to stop unnecessary or ineffectual treatment and provide relief from common symptoms that happen at the end of life, like agitation, pain or nausea.

There has been a lot of hysteria following recent articles about the LCP but they seem to mostly be highlighting odd cases of bad care rather than the many peaceful and dignified deaths that occur every day.

I will now sit back and wait for a random insult based on my user name, since that seems to be the pattern here.

[Madratlady]

And to the OP, it certainly sounds like the GP is not following the LCP correctly, although we don't know any individual circumstances that might be affecting his decisions. Either way it sounds like your friend should ask for another doctor to see her or take her to hospital.

[CherylAmber]

madratlady, well I haven't but even if I had been reading the Daily Mail so what is it to with anyone else, I can legally read a paper can't I and even if I had a view on what they were saying in that paper I am still within my rights to have my view.

The thing is your lcp has caused a lot of unnecessary suffering and these people seem to follow it like it is fine, good and just what everyone wants. What I want to ask, is what if it isn't what then? Are you telling me no one has any rights any more when it comes to the lcp.

Being a nurse is good, but it doesnt matter, what I am saying here is that we all have rights and unless you intend or can take those rights off us, then we should be able to just say no! Whatever the treatment is or in the case of the LCP isnt.

[Susieshoe]

Just thought you all ought to know that Cheryl's dad is the admin on the page she is desperately trying to publicise. And if you think Cheryl is talking a load of tripe - you should read what her dad (goes by the name of James mee) has to say!!!

But fair dos - she's a good girl - does what her dad tells her........

[bluegnuboo]

Cheryl of course you have the right to say no to an LCP, a decision I hope you don't have to face for a very long time.

Having the right to say no to it for a member of family is a different thing.

While it's important to keep family as informed as possible drs have a responsibility first and foremost to their patients. Often patients have made their wished known long before the LCP is started even if they haven't, carrying on painful, disturbing procedures such as i/vs blood tests trying to administer oral meds may just not be in the patients best interests.

Death is a fact of life. It needs to be dealt with as such.

[Piecesofmyheart]

The incredible irony is that I have worked in palliative/end of life care for nearly 20 years. The philosophy and ethos of palliative care hasn't changed in that time. 20 years ago we didn't 'use' the LCP. But we cared for patients using the principles enshrined in it.
20 years ago, we used to despair that patients who DIDN'T have access to good palliative/end of life care, but who had a life limiting illness often died in pain, in distress, with unnecessary intervention, in noisy hospital wards, cared for my HCPs with the best intentions in the world, but lacking in the skills and knowledge needed to provide end of life care.
20 years later, the wonderful John Ellershaw et al have successfully rolled out the LCP to all clinical settings. With clear guidance for it's implementation and use.
And yes, there is still a lack of knowledge and understanding amongst some HCPs about the nature and use of the LCP.
But the MOST damaging development hass been the hi jacking of the LCP by the daily wail. The damage that has been done, and the distress caused to patients and families is untold. And when they get 'bored' of the LCP, they'll move on to their next campaign against the NHS/women/immigrants.
I look forward to the findings of the independent review to follow.
And I suspect that the wail will be forced to offer much more that a half hearted 'retraction'

[lustybusty]

But Cheryl, the I think you are believing the wrong things of the LCP because of a few people doing it badly, which makes the news. how many news reports have you seen saying that "this operation went well", or "this gentleman on the LCP died happy, comfortable and as Nourished and hydrated as he wanted to be"? None - because good news doesn't sell papers! I've just looked at the LCP website (googled liverpool care pathway and went to the liverpool uni site) and they quote "The LCP is an integrated care pathway that is used at the bedside to drive up sustained quality of the dying in the last hours and days of life."
That sounds like the intention is to do good by everyone... (op, the quote might help you too.... We seem to have gotten slightly diverted)

[justmyview]

My granny was on LCP for the last week or so of her life and it was all calm, dignified and respectful

If OP's friend feels her Mum is not ready for it,then I suggest she should seek a second opinion

[Piecesofmyheart]

When your opinion is ill informed, ill researched and likely to be harmful, then it WILL be challenged. It's a grown up fact of life. Have you read ANYTHING other than the daily wails articles ?

[SchroSawMargeryDaw]

How can you not see that you are pretty much bullying the OP, not anyone else. You are preaching and you wont give up, everyone has a right to an opinion but that is exactly what it is, just an opinion.

You are trying to force your views (actually probably your Father's actually) on everyone here, sparing no thought for the feelings of the OP who you are probably distressing.

[Sirzy]

Pieces post shows exactly why the LCP is needed.

Instead of accusing her of being patronising Cheryl read her post and consider what she is saying.

[bluegnuboo]

No one is trying to stamp over your rights Cheryl. Just trying to give you the information so that you can not sound ill informed, ignorant or scaremongering.
Of course that may be exactly the right your trying to exercise in which case...fill your boots.

[Madratlady]

I have to ask Cheryl, what do you think would be a better way of caring for people at the end of their lives?

Please don't start ranting about people being refused drinks as that is not the case with the LCP. I'm just interested to know what you would suggest instead?

[SchroSawMargeryDaw]

"J M Jumpin bananas almost forgot i got a daughter lol message passed onto site via cheryl..."

Why don't you tell you tell your Dad to come on here and fight his own battles, if he feels so strongly?

[CherylAmber]

I have opinions of my own or is that not allowed now gees so I have a dad, most ppl do but now i dont have a say you ppl are a laugh a minute

[Madratlady]

No Cheryl I wasn't saying you have to agree. But I do prefer reasoned opinions and actual discussion to random accusations and insults.

I was asking what you felt would be a better system as you clearly think the current one is wrong.

But you don't appear to be able to engage in a discussion.