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?

There is also a Facebook Group called 'I Support the Liverpool Care Pathway' which has lots of interesting links (including one to the wails retraction of their accusations that the LCP meant patients were being deliberately denied fluids) Thee are about 4,500 people reading that page.

Can't link as on my phone at the minute if anyone else would be so kind.

The Mail reported the following recently. I find it disturbing.
Some people will tell me that the Mail is lying, that it is a tabloid and therefore not reputable, and that its journalists are ill-informed. But I find that hard to believe.

'Bernadette Lloyd, a hospice paediatric nurse, has written to the Cabinet Office and the Department of Health to criticise the use of death pathways for children.

She said: ?The parents feel coerced, at a very traumatic time, into agreeing that this is correct for their child whom they are told by doctors has only has a few days to live. It is very difficult to predict death. I have seen a ?reasonable? number of children recover after being taken off the pathway.

?I have also seen children die in terrible thirst because fluids are withdrawn from them until they die.

?I witnessed a 14 year-old boy with cancer die with his tongue stuck to the roof of his mouth when doctors refused to give him liquids by tube. His death was agonising for him, and for us nurses to watch. This is euthanasia by the backdoor.?

Read more: www.dailymail.co.uk/news/article-2240075/Now-sick-babies-death-pathway-Doctors-haunting-testimony-reveals-children-end-life-plan.html#ixzz2Js1lTclk
Follow us: @MailOnline on Twitter | DailyMail on Facebook

www.dailymail.co.uk/news/article-2240075/Now-sick-babies-death-pathway-Doctors-haunting-testimony-reveals-children-end-life-plan.html#axzz2Jnvro0eF

Interesting Claig. The only nurse of that name on the current NMC register is a mental health nurse. And has no paediatric qualifications.
It's from the wail you say ?

Just imagine if the BBC recorded a programme on this. If they interviewed people like Bernadette and the families who are featured in the newspaper stories and the families who have set up facebook groups to try to get their voices heard, and if they also interviewed ministers and heads of palliative care etc.

I think that this would then shoot up the agenda in terms of importance.

If it was then found publicly to be the best way, then that would be great and would stop the fears of many members of the public.

Claig have you ever actually watched someone die?. I have been a nurse for 25 years and in that time I have seen many, many people die.

The vast majority are incapable of eating or drinking in the last days of life regardless of whether it is a basic human right or not.

Are you suggesting I should pass a nasogastric tube so they are not denied "food" that they can neither taste or enjoy or even digest properly. Or may be you would like me to tip water into their mouth so it can by pass their stomach and end up in their lungs effectively drowning them.

Or perhaps I should dig around in their swollen oedematous arm for a vein that may last a couple of hours so I can give them some IV fluid.

Or maybe, just maybe, I should give regular oral care, moistening the mouth every hour with a wet swab, gently putting cream on their lips, making sure that they have a functioning syringe driver which is keeping their pain at bay. Sedation so that their terminal agitation is managed so they and their family don't suffer. Administer something to dry up the secretions so their family don't have to listen to the death rattle. Maybe I should call the chaplain so if the person has religious belief they may derive some comfort from that.

Dying is a natural process which will happen to us all, should we prolong this process artificially?

I suspect 'Bernadette' should be more concerned about her professional accountability having allegedly stood back and watched a child dying in the manner that she describes. Perhaps (hopefully) she's been struck off already - hence her name not being on the NMC register ?

'Are you suggesting I should pass a nasogastric tube so they are not denied "food" that they can neither taste or enjoy or even digest properly. Or may be you would like me to tip water into their mouth so it can by pass their stomach and end up in their lungs effectively drowning them.'

Therug - Claig/Amber/MrMee don't like you to actually 'mention' the actual process of dying. It really does get in the way of a good bit of hysterical postulating about murdering nurses and doctors stalking the wards killing people.

Pieces I seldom get irate about shit on the net, but I got home this morning from a 12 and a half hour shift spent doing my bloody best for the NHS and read this. If I had posted this morning I would have been at best deleted at worst banned.

The Telegraph is still a newspaper. It is not a reputable journal. To present a balanced argument you need peer reviewed research. At best, a newspaper article is anecdotal, at worst, it can be random comments taken out of context.

therugratref, can you explain what the difference is between the 2/3rds of patients near death who are not on the LCP and teh 1/3 who are in terms of fluids and water in the stages near death?

How does the LCP differ from the system under which the other 2/3rds of patients are on?

You show me the evidence base from where you got stats from Claig and I will provide you with a reasoned answer. By the way I consider myself a scientist and thus don't accept the mail (which I would not even use to line the bottom of a litter tray) and the telegraph as evidence. I like my evidence peer reviewed and published in reputable journals.

TheRug -I think this thread is incredibly helpful. The anti LCP 'voice' have not produced one credible source of stats or information, have demonstrated time and time again their woeful ignorance about medical issues and the actual process of dying, have systematically failed to answer questions, have had to appeal to followers on a FB page to provide 'back up' and have bandied around the notion of murder and torture without thought or sensitivity, including to a poster who shared details of her own mums peaceful death. And in the face of great provocation, their 'arguments' have systematically been torn apart and deflected back.
Earlier, this thread was number 4 on google search for 'Concensus statement re Liverpool Care Pathway'
And I know which side of the fence has produced the logical, reasoned information.
And which side looks more than a little sensationalist and hysterical

And peer reviewed reports cannot also be biased I am to assume? One side prints anecdotal information based on the information it is provided, whilst the other side provides written information, carefully edited and most likely biased, as it based on the information it wants people to believe!

Unfortunately at the end of the it inevitably boils down to what people want to believe. People will have a tendency to believe in what they see and experience, which is where of course the papers gain their readership from. A false flag story, could lead a papers sale to drop, so their stories have to have merit.

Although it could be equally said that a propaganda war is now being fought on both sides with the patient and their relatives stuck in the middle. Whilst the NHS does itself no favours, by seemingly trying to just shut people up!

Oddly enough though, looking back a little into history, I do remember similar squeals of outrage over the MSBP affair, the Cleveland Child Abuse Scandal and of course not to forget the MRSA outrage. In all those cases, after the papers reported them, there was initially a cover up by the NHS followed by open admissions that things had gone drastically wrong. This is where the real problem lies. Is the same thing going to happen with the LCP, the answer is probably and unfortunately yes and pretty soon, The reason being that this bad press makes the Government look bad and unfortunately the Government is at the end of the day, is elected by the people.

Which brings us back to right where we started from, 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.

I got my information from newspapers, I don't read medical journals. But if you only give reasoned answers to data from medical journals, then your unreasoned answer will do.

The family of Mrs Greenwood in the Mail reported that fluids were removed from her and they were livid and began to give her water themselves. They say a nurse told them not to do it. Mrs Greenwood began to recover and she was taken off the pathway and released from hospital.

The Telegraph reported the following

'the group opposing the pathway, led by Prof Patrick Pullicino, a neurologist from East Kent Hospitals, argued that it was fatally flawed.

There was no scientific basis underpinning the prognoses that patients were dying, they said. ?It is self-evident that stopping fluids whilst giving narcotics and sedatives hastens death,? the group said in a statement.

The group also pointed out that the latest pathway audit showed that just 16 per cent of patients had fluids continued on the pathway and none had fluids started. ?The median time to death on the Liverpool Care Pathway is now 29 hours,? the group said. ?Statistics show that even patients with terminal cancer and a poor prognosis may survive months or more if not put on the LCP.?

They added: ?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.'

www.telegraph.co.uk/health/healthnews/9626610/Patient-death-pathway-based-on-guesswork.html

I got my information from newspapers,

That explains a lot.

Of course you wouldn't find information from a reliable source, or even listen to the first hand experiences posted on this thread. Makes much more sense to get information from a source which is hardly hiding its agenda!

I am wondering if Prof Patrick Pullicino's opinion is based in science or catholocism.

The whole point of good research is that it is not biased. There are certain criteria which you check before believing a piece of evidence, who wrote it, what are their qualifications, have they published before, why did they do the research, who funded it? What sort of research is it, blind trials, double blind, retrospective?
There is no way you can compare what is written in a newspaper whose sole purpose is to sell copies with evidence reviewed, tested and published in a journal. It's just not how science works. You would be laughed out of court if you quoted from a newspaper in a scientific essay. It just cannot be relied upon.

Pardon my crap spelling- Catholicism is what I meant

The article which claig has referenced about babies is a classic example of the dishonesty of the Mail's campaign. It comes directly from this article in the BMJ - www.bmj.com/content/345/bmj.e7319 - but claims it is about a baby being put on the LCP. However, if you look at the article, the LCP has nothing whatsoever to do with it, and the action taken was at the specific initiative of the parents.

And why the continued reliance on the Mail? As has already been pointed out, they've had to print a wholesale retraction of the central tenet of their campaign. Perhaps I should repeat it:

A former version of the article described the Liverpool Care Pathway as ?a withdrawal of food and fluids?. We are happy to make clear that the LCP is intended to ease the final hours of patients who are close to death and to spare them the suffering associated with invasive treatment and the needless prolonging of life. Once a patient is no longer able to eat or drink, consideration is given as to whether fluids and nutrients should continue to be provided.

That tells you everything about the reliability of the original story, and it does them no credit that they've printed this retraction because they've buried it right at the end of an old story where they hope few people will see it. Sorry, I'll take peer reviewed research over Mail lies every time.

hotstepper, I'm afraid your post is unreadable and you're just not getting whatever point it is that you want to make across. Try using normal punctuation.

Sirzy, I have repeatedly said that I am not against the LCP and that it may do good in some cases. What I am worried about is the testimony of families and patients who say that it was not right for their loved ones, and I worry about dehydration and the reported stopping of fluids in some cases.

That is why I want a full independent inquiry into it, to ensure that no mistakes are made with putting people on it and that financial incentives play no part in the decision making.

There will be an inquiry into it and it seems that it has partly come about due to media pressure, which I think is a good thing.

Hotstepper - you very rudely, and very insensitively demanded to know how a poster could possibly know that her mum had metastatic disease. A patient can be diagnosed with metastatic disease at any point of the disease trajectory. I'm not sure what your point is ? I assume that you are aware that the presence and extent of secondary disease is a strong prognostic factor?

And it's midazolam

And Haloperidol

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. She takes this one case as conclusive evidence for damning the LCP whilst brushing aside the evidence on this thread alone of many more people who have personal experience of the LCP (not just what they've read in newspapers) and who consider that, properly used, it is valuable. And I'm afraid that is very symptomatic of the approach to evidence of so many who support the Mail's hysterical campaign.