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?

amazinigllily in answer to your question maybe it was the nursing care that did make a difference. i can't say - my experience is only one in many of the LCP.

I and perhaps more importantly my family and my ddad, believe that my mother died a peaceful, dignified death after a truly undignified illness. I had to shout and fight for a side room initially though because there were none available - I'm not particularly proud of that but I did it because I knew my mum would have moved heaven and earth for me.

The LCP brings formality to something that I believe everyone who wants/wishes for should be entitled to - a national guideline stating clearly what can be followed, if its appropriate, if its consented/agreed to and if it is clinically indicated if you are at the end. Good quality care should not be a lottery, it shouldn't matter who you are or what you're circumstances happen to be.

I don't think I have anything else to add other than what I have posted since about page 10. As we do on Mn I have shared my experience and I can only talk from that. I lived it. at times it was my worst nightmare come true. I genuinely hope noone else will have to go through what my family did but cancer is a bugger and I know that is unrealistic.

anyway I must now step away - as my mum said "live in the now Colleys, now in the could have beens

Yes I read that report, Fiona Bruce removed her father off the Liverpool Care Pathway did she not? Or is she perchance lying about that? I believe in the same article it mentioned about her mother enduring as she put it an "agonising death on the system", we need to be careful when an individual makes a statement like that, in case we undermine the facts of what she saw. This obviously led on to removing her father from the system, it would be interesting to write to her and see if she will reply to your comments.

You also state that mistakes happen for all sorts of reasons, does that justify these alleged mistakes, or are you simply passing these mistakes off? If so does it not show a distinct lack of concern?

Also if there was a case of libel to be answered, would the NHS not take up that case? after all it is surely easy to say that something is untrue, without having the need to challenge its merits of the statement? We can all do that.

As for the blog, I think that argues more against the Liverpool Care Pathway, then it does for it.

Quote

"Won?t be too long I?m sure before the MCPCIL hires a ?media consultant? to post positive stories into Daily Mail comments boxes?I?d rather there was a Public Inquiry, but those responsible for the roll out of this flawed scheme I guess lack the professional integrity to insist on one themselves?and are quite relieved they?ve been given time by Hunt to back ? clerk all their errors. The number of documents on their site which have already been hurriedly edited is a testament to their ineptitude. Presumably, everything will be ship shape before Hunt?s ?independent review??otherwise the DOH and NHS face a whopping great legal bill for Corporate Manslaughter, for bringing a healthcare scheme online with no quality control, or indeed ethnic monitoring (which is illegal in the UK)."

Unquote

"Shock", but of course, as you say one must not believe all that we read. I think in lieu of this, I must thank you for the link, there is some interesting research to made there. But it is hardly a great advert for the LCP is it now? I think the Daily Mail on the whole has probably been kinder.

But do you regard that link you gave me as being accurate it its statements, if you do then this statement could be compounded as researched evidence.
Perhaps we should send the whole link to the Daily Mail?

BoreOfWhabylon, no could you please advise?

whether you agree with it or not:
in this country the duty of care lies between the doctor and the (adult) patient.
Doctors don't ask the relative's consent to any form of treatment - or decision to withold treatment - it's between the doctor and the person concerned. If that person lacks capacity to be involved in consenting to treatment, the doctor has to make the decision for them. That's the way the law is.
However:
It is good practice to inform families. It is good practice to try and establish from the family what someone might have wanted. It is good practice to explain what you are doing, and why, and to seek consensus. If there is real disagreement it is good practice to involve a 2nd opinion. I doubt good practice is always followed, sadly.
I have met many many many families who wanted only to ensure the best for their loved one. I have also met a few relatives who will say "you can't let them die, I can't manage without them" and whose motivations are entirely selfish. And some who have been abusing the patient and whose motivations revolve around guilt. And some whose motivations are financial. Giving the decision-making power to families isn't always straight-forward, nor is it always welcomed.
I find it mind-bogglingly offensive that there are posters suggesting that doctors are deliberately hastening peoples' deaths to save their NHS trust money. Why on earth would any individual medical practitioner want to do this? what on earth would they gain from doing it?
you are talking about people dying here, something which is deeply important and one of the most crucial parts of medical care. I teach my juniors that uncontrolled pain in a dying patient is a medical emergency.

'I find it mind-bogglingly offensive that there are posters suggesting that doctors are deliberately hastening peoples' deaths to save their NHS trust money. Why on earth would any individual medical practitioner want to do this? what on earth would they gain from doing it?'

I find it mind-boggling that so many healthcare professionals think that there are no problems with the LCP. However, there will be now a review into it.

'NHS doctors are prematurely ending the lives of thousands of elderly hospital patients because they are difficult to manage or to free up beds, a senior consultant claimed yesterday.'

'
Professor Pullicino claimed that far too often elderly patients who could live longer are placed on the LCP and it had now become an ?assisted death pathway rather than a care pathway?.

He cited ?pressure on beds and difficulty with nursing confused or difficult-to-manage elderly patients? as factors.

Professor Pullicino revealed he had personally intervened to take a patient off the LCP who went on to be successfully treated.
He said this showed that claims they had hours or days left are ?palpably false?.
In the example he revealed a 71-year-old who was admitted to hospital suffering from pneumonia and epilepsy was put on the LCP by a covering doctor on a weekend shift.

Professor Pullicino said he had returned to work after a weekend to find the patient unresponsive and his family upset because they had not agreed to place him on the LCP.
?I removed the patient from the LCP despite significant resistance,? he said.
?His seizures came under control and four weeks later he was discharged home to his family,? he said.'

'He said: ?The lack of evidence for initiating the Liverpool Care Pathway makes it an assisted death pathway rather than a care pathway.

?Very likely many elderly patients who could live substantially longer are being killed by the LCP.

?Patients are frequently put on the pathway without a proper analysis of their condition.

?Predicting death in a time frame of three to four days, or even at any other specific time, is not possible scientifically.

'
Experts including Peter Millard, emeritus professor of geriatrics at the University of London, and Dr Peter Hargreaves, palliative care consultant at St Luke?s cancer centre in Guildford, Surrey, warned of ?backdoor euthanasia? and the risk that economic factors were being brought into the treatment of vulnerable patients.

In the example of the 71-year-old, Professor Pullicino revealed he had given the patient another 14 months of life by demanding the man be removed from the LCP.'

www.dailymail.co.uk/news/article-2161869/Top-doctors-chilling-claim-The-NHS-kills-130-000-elderly-patients-year.html#axzz2Jnn4GfCs

'Ministers have made a series of concessions to critics over the past month, including the establishment of an inquiry led by the same palliative care doctors who have been instrumental in promoting the use of the Liverpool Care Pathway.

They have also changed NHS rules to put a legal obligation on hospitals to tell families when a relative is put on the pathway.'

Now they will make it a legal obligation to inform families, but for years no one thought that that should be done. Why? And why were there so few complaints about the lack of a legal obligation from within the medical profession?

www.dailymail.co.uk/news/article-2238916/Ministers-order-inquiry-care-pathway-payments-saw-hospitals-receive-millions-implement-controversial-system.html#axzz2JnvrsYu5

'Until now, the medical Establishment has contemptuously dismissed public disquiet over the Liverpool Care Pathway, the official guidelines under which patients judged to be dying are left without treatment, food or fluids.
In a hugely welcome change of approach, however, the Association of Palliative Medicine has ordered a review of the concerns expressed by countless bereaved relatives, with a promise to explore ways of improving practice.
Among those anxieties, one of the most oft repeated ? highlighted in heartbreaking accounts to the Mail ? is that loved ones have been put on the LCP without the consent or knowledge of their families.

Another is the widespread belief that it is cruel to deny fluids to sentient beings.
But perhaps the most disturbing objection is that medical science cannot predict with any certainty how long a patient may live with proper care.
So when doctors withdraw all treatment and nourishment, believing their patients have only days left, the prediction becomes self-fulfilling.
When well over 100,000 are dying on the LCP each year, the suspicion inevitably arises that the pathway is being used to hasten death and free up beds.

These are the fears the profession must address and allay if this modern way of death is to remain official practice.

As the APM is at last starting to admit, it is simply not enough just to say doctors know best.'

Agree entirely with the Mail. Trust us we know what we're doing is no longer good enough. This is about patient rights and now at last there will be a legal obligation to actually inform family that someone has been placed on it.

Maybe more changes will be made too, now that this is being discussed widely in our public media.

Above comes from this article

www.dailymail.co.uk/debate/article-2222710/Liverpool-Care-Pathway-A-welcome-review-pathway-death.html#axzz2Jnvro0eF

hotstepper in answer to your question further back....

I believe our hospitals are grossly understaffed and I think a review is needed into how the LCP can be effective in such an environment.

My experience of the LCP is from the death of my auntie who wanted to die at home. By the time the LCP was started she was mostly unconscious ....not from medication but from her illness which left her that way. Yes she had morphine but had been having it for months ...the dose had not increased.

The LCP was started after discussion with us as her family, what they did was tell us to give food and drink as my auntie wanted and requested. I said further up the thread that all my auntie wanted by this time was an ice lolly which she had half of in the day and half of later. Her medication was given as needed....they didn't add any other drugs apart from what she was already having. We stopped trying to get non injectable medication in to her which had been distressing her. My auntie was simply nursed and loved over the next few days until she died peacefully with us holding her hands. It was about as good a death as it could be.

When someone is very seriously ill with something like terminal cancer there can be clear signs that they are dying....they become more sleepy, they start to withdraw from life, they stop wanting to eat and drink....there are real end stage signs. It is then that the LCP is appropriate .....not aggressive treatment which might further distress them. I believe I would have fought anyone who tried to provide any further invasive treatment to my dying auntie who I loved so much.

The LCP absolutely MUST be used appropriately though and a review is needed because here are cases where it clearly has not. Is this due to understaffed and pressured hospitals? Is it down to financial issues? My belief is that finance must NEVER play a part in the decision making process.

NB I am not a nurse.....I used to be years ago pre the LCP and I saw invasive treatment given to people who were clearly dying. The treatment did nothing to prolong their life and caused more suffering when it would have been kinder to do nothing and let nature take its course. This is why I welcome a pathway which recognises the end of life as worthy of respect and care. I am not certain this is possible in many hospital settings though where staffing levels have decreased even further since I was a nurse twenty years ago.

hotstepper I beg to differ with respect to your comment about doctors being able to predict death. When you have a patient with advanced cancer with liver and renal failure, who is unresponsive (and not due to sedatives) despite several days of aggressive treatment with intravenous fluids and antibiotics - you know that they are not going to survive. You may not be able to predict the exact time of death but you know that the end is imminent.

The majority of patients that go on the LCP are semi conscious or unconscious when the pathway is started. Attempts will have been made to treat any reversible cause of their deterioration ie infection. They are not patients sitting up in their chair asking for cups of tea or a sandwich.

Death is a natural process. Holding people down trying to insert plastic tubes into various parts of their body is not. Some hospitals are moving away from the use of DNR and using AND 'allow natural death' instead.

I agree that communication with family is important. We always try to speak to relatives when a patient is started on the LCP. We explain what is happening and why we believe that the patient is dying. I've never had any opposition to the LCP.

Amazinglilly, the issue of a libel claim is a complete red herring - the NHS as an entity cannot bring libel claims. Of course no-one condones errors, but you seem to be saying that the LCP should never be used because some errors happen. If that rule were followed in medicine, we would, for example, not have anaesthetics for operations, and we would never use pain relieving medication at all. I note that you have not answered my query about the dehydration statistics you quote.

Please think about it. If you were dying and had reached a point when no medical intervention would save you, would you rather spend your last few hours in peace and without pain, or would you prefer to have people constantly sticking needles in you to administer fluids and pointless medication, taking your blood pressure and pulse, and finally jumping on your chest and breaking your ribs in a pointless attempt at resuscitation?

'Death is a natural process. Holding people down trying to insert plastic tubes into various parts of their body is not. Some hospitals are moving away from the use of DNR and using AND 'allow natural death' instead.'

Hospitals are there to save people and prevent death if possible. That is why we rush people to A&E and intervene with treatment and tubes and medicine to save them from a natural death that might ensue without treatment.

'hospitals are moving away from the use of DNR and using AND 'allow natural death' instead.'

The public has expressed concerns about the DNR system and there is a risk of euphemisms being used to hide what is happening. Euphemisms risk discrediting a system further, since they are often an attempt to conceal.

On the Andrew marr show they said today that the report on the trust in Mid-Staffordshire will come out in the next few weeks and the public will learn what was going on. They also mentioned surveys of some NHS trusts where staff said something like they would not recommend their own families to be treated there.

The concerns of the public must be addressed in an open manner and euphemisms will not help re-establish trust in some of these Trusts.

should have been - where something like 30% of staff said they would not recommend their families to be treated there

But there are a lot of euphemisms around death and dying as well meaning that it is often not accepted as it should be by our society ?

That is because we value life and do our best to preserve it. We expect the NHS that we all pay for to do their best to save us in our hour of need. We don't expect a weekend cover doctor to assign us to a pathway without informing our families, and then find that we live a further 14 months when a great doctor, against resistance, removes us from this pathway.

Eventually the law will need to be involved and possibly changed. Already they have made it a legal obligation to inform family. I expect that more legal changes will be made in the future ads more is revealed by families and newspapers.

"Hospitals are there to save people and prevent death if possible". Of course. But the important term there is "if possible". If it is not possible, they have a duty, which is just as important, to do their best to ensure that people have a dignified, peaceful, pain-free death.

But the weekend cover doctor thought it was not possible to save teh man who lived a further 14 months when another doctor removed him from the pathway on which he was placed.

The OP tells us that the GP has told carers not to feed or give water to the elderly mobile woman who has dementia.

Denying water to people is not a dignified, peaceful, pain-free death.

How long has the LCP existed? I read somewhere it is about 4 years? Do you really think that people were denied pain-free deaths before it was written up?

Again Claig you are confusing poor care with the LCP being to blame. Try fighting against poor care rather than something that in most cases does a lot of good.

I don't know why you are constantly ignoring the FACT that the LCP DOES NOT withold fluids from people. Poor carers might but thats a different argument.

Pathways, natural death, pain-free, dignified death
All the words sound good, but some families have been writing to newspapers in an attempt to have their voices heard and they tell a different story.

So, now there will be a legal obligation to inform families, but for years there was no legal obligation. Now there will be a review, for years there was no review.

Sirzy, as I understand the LCP is a framework. If a weekend cover doctor places you on the framework then it seems that you have few rights to be removed from it. As I understand it, a trust went to court when challenged by a family and the trust won.

This is an edited quotation from the guidelines, posted by someone earlier, which is on an ethics website which criticises the Mail's coverage of this issue.

'Diminished need for food and drink

Initially, as weakness develops, the effort of eating and drinking may simply have become too much and at this time help with feeding might be appreciated.

Your relative/friend will be supported to take food and fluids by mouth for as long as possible.

When someone stops eating and drinking it can be hard to accept, even when we know they are dying. It may be a physical sign that they are not going to get better. Your relative/friend may neither want or need food and/or drink and decisions about the use of artificial fluids (a drip) will be made in the best interests of your relative/friends for this moment in time. This decision will be explained to you and reviewed regularly.'

blog.practicalethics.ox.ac.uk/2012/11/the-liverpool-care-pathway-in-the-news-even-by-the-mails-standards-this-is-low/

The decisions are made by the doctors and in some cases patients will have been sedated and will not be in a state where they can communicate.

This quote does not say that the patient will be incapable of taking water, but that they may not want or need water. If they are not able to communicate, then it seems that the doctor will make the interpretation about whether they want or need water.

'Try fighting against poor care rather than something that in most cases does a lot of good.'

I am against poor care and believe that people should be held liable for poor care and prosecuted for it. I believe that would concentrate the mind and reduce it substantially.

I am not saying that the LCP does not do good in some cases, but I support the families who believe that in some cases it did not do good. I am for a full, independent review into it in order to make sure that no bad is done on it.

i answer to the question above .... tell me what is natural about the lcp ??????? there are patients being placed on this who have not got cancer .. even babies with a disability are put on this what is so natural about that even having a major disability should they not have a chance of life ... this is the dangers off having this framework in the nhs ... staff shortages nurses have confimed there is dangers in hospitals with regards to nurse patient ratio .. and tell me who are the ones going to suffer .. it is a tool to murder ... and as for only a few cases as you put it let me tell you people have not been aware of the dangers as they believe everything a doctor tells them is for there best interest .. i hold highly anyone who challenges this lcp in the media or elswhere people will know the dangers and families will realise and i tell you there will be thousands of claims of murder ... watch this space

Just coming back into this thread after having to work two long days, so haven't had much chance to read it. I see that James Mee is calling for reinforcements here, on his Facebook page. Interestingly, the much, much larger 'I support the Liverpool Care Pathway' page hasn't felt it necessary to cheapen their cause by calling on their supporters to descend on this thread. James Mee will doubtless claim that his Facebook page is gaining support and cite the growing numbers of supporters he is gleaning. However, I note that most of the new supporters have been actually ADDED by the existing members - so therefore a PASSIVE 'like' as opposed to an ACTIVE 'like'. The pro LCP page has 9,500 + active likers...........sorry if I'm sounding a bit pedantic here but I feel it's important to demonstrate how the 'anti LCP' propaganda machine is constructed...............oh, and James Mee is also reposting old daily Heil articles about the LCP in order to 'educate' all his new acolytes.

It seems to me that this thread has many, many sensible comments. It's good to see that most people aren't blindly led by the crap that the daily Heil and the telegraph publish. It does sadden me that there are some people who would prefer to believe the rantings of an uneducated hack journalist, rather than the considered experiences of healthcare workers who actually witness illness, death and dying every day. People who have worked their asses off in university, people who believe that healthcare is best served by constantly upgrading their skills and continual training ( because it doesn't stop once you've been handed that degree you know).

I have to go to work again shortly, I dare say that this thread will fill up even more with ridiculous accusations from people who can't see past the media hype. But I will say this......95% of families are happy that their loved ones passed peacefully on the pathway (in its many forms). Obviously, I and every other healthcare professional would rather it was 100% but its never going to happen because we will NEVER please all the people, all the time.....even if we do things well, there will always be families who complain and the reasons for this are many and various.