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?

[claig]

Start asking questions, start demanding answers, stop your blind faith.


'in a letter to The Daily Telegraph, six doctors warn that hospitals may be using the controversial scheme to reduce strain on hospital resources.'

www.telegraph.co.uk/comment/letters/9385681/Deadly-one-way-street.html

[JugglingFromHereToThere]

That does sound worrying that financial incentives may be involved in some trusts.

The NHS is so broke I fear decisions can easily be influenced by money

• usually much more trivial but just thinking of the other thread where mothers on post-natal wards shared their experiences of interactions with the Bounty lady. Bounty pay the hospital for access to new mothers and the hospitals agree in spite of the presence of Bounty staff being of extremely questionable benefit to the new mothers on the wards. The trusts that have replied have all mentioned the funds they receive from Bounty being useful as a reason for the practice continuing - and I'm sure they receive very little per patient.
  

Just highlights how the NHS and post-natal wards in particular are run on a shoe-string.

[claig]

'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

[Sirzy]

OP, please encourage your friend to seek proper advice. Although it is written for the NHS this seems to give a pretty balanced overview of the LCP and some of its criticisms. much more balanced than the daily mail thats for sure

There is no denying that it is used wrongly in some cases, but then mistakes are often made in care no matter what the source. Being on the LCP isn't always the end as people do recover against the odds which is great and which is why any sort of palliative care needs to be constantly re-examined.


It is very important that families are involved in care, and that the ask questions about anything they aren't sure of. This is probably one of the best way they can help their loved one at a difficult time.

[stella1w]

Dear mumsnet towers. Op here. I asked for the thread to be deleted because my original questions had been answered and the thread was turning nasty and distressing. You have not done so. Why not?

[JugglingFromHereToThere]

Hmm, that sounds bad too claig

Decisions to follow the pathway should be evidence based and more rigorous for everyone's benefit, even if some professional judgement and looking at patients on an individual basis will always be involved too.

Having said that I feel if say I was quite elderly with terminal cancer I would rather be on the LCP as long as I was well cared for and those around me were supported well too - ideally in a hospice. Rather than dragging things on for the sake of it with lots of tests, treatments, drips etc. in hospital.

We are all going to die one day. I hope I will be supported to die well - as I have lived ! (well, in my opinion anyway !)
And when the time comes - hoping for many years yet and maybe some grand-children one day !

[claig]

Juggling, I think the review ordered by the ministers was probably down to the pressure from nespaper articles in the Daily Mail and Daily Telegraph which reported on medical opposition and on families' experiences etc. Without this pressure, there would probably not have been a review and teh extent of teh financial incentives etc. may not have been admitted. The Mail says it found out some figures based on FOI requests etc.

There comes a point when we all have to die, but we should expect as pain-free a death as possible. Dehydration is agony; giving somebody water is only basic humanity.

' the latest pathway audit showed that just 16 per cent of patients had fluids continued on the pathway '

That means 84% had fluids removed.

I think questions need to be asked. Some newspapers have dared to ask questions and a review has been instigated. We all owe it to patients that the best possible treatment should always be delivered.

Blind faith is not good enough; open, public debate is required to maintain the pressure that ensures a top quality service for the people of this nation.

[littlemefi]

Cheryl, do you have personal experience of the LCP that has informed your opinion?

[claig]

Read Cheryl's dad's post about his mother and Cheryl's grandmother at
01 Feb 00.54.29

[claig]

Even the BBC has reported on the concern of some families whose relatives have been on the pathway.

We are very lucky to live in a country where we have newspapers that dare to question the authoruities, that highlight the concerns of ordinary people and ordinary families about the treatment of their relatives.

Liverpool Care Pathway death prompts torture claim

Never stop questioning and don't blindly follow what you are told. Don't attack posters like Cheryl who dare to oppose officialdom.

[HelenMumsnet]

@stella1w

Dear mumsnet towers. Op here. I asked for the thread to be deleted because my original questions had been answered and the thread was turning nasty and distressing. You have not done so. Why not?

We're sorry you feel ignored, stella1w. That's not the case.

We can see from our logs that you mailed in your request close to midnight last night. As we hope you can imagine, our staffing is fairly limited in the wee hours.

We will reply to your mail as soon as we possibly can (yours in not the only one in our inbox, by a very very long way).

In the meantime, it's probably worth knowing that we don't generally delete threads unless they break our site rules.

Anyway, apols for the delay. We hope to ping into your inbox very shortly.

[daylily]

stella 1w has your friend had any contact with Admiral Nurses? They advise the carers of people with dementia. My mum has dementia and I have found them useful, though there is not many of them. Her is the main website but there should be a local one to you.
www.dementiauk.org/what-we-do/admiral-nurses/

[Piecesofmyheart]

'That means 84% had fluids removed.'

It means no such thing. Have you chosen to deliberately ignore the various explainations as to WHY continuing to pump dying patients with fluid, either orally or by SC or IV means can cause distress and can actually HASTEN death ? Have you ever seen a patient aspirate ?

I look forward to the wails journalists presenting their 'evidence' to the review and welcome the opportunity for the LCP to be scrutinised and for it's benefits for dying patients to be presented.

[claig]

'Have you chosen to deliberately ignore the various explainations as to WHY continuing to pump dying patients with fluid, either orally or by SC or IV means can cause distress and can actually HASTEN death ?'

What, you mean like Mrs Greeenwood who is now planning a world cruise?


?I asked Mum if she was thirsty and she nodded. I held a cup of water to her lips, but she was not strong enough to suck on the straw. So I put my thumb over the end of the straw and dipped it in the water so I could feed her a full straw of water.
?I fed her for more than an hour with the straw and she opened her eyes and could talk to us, the water seemed to stimulate her.
?The day after I did the same, but a nurse took my wife to one side and told her that I should not be feeding her this way because she might choke.
?I was livid. The nurses could see what we were doing and every time we gave her water she came round and could talk to us.?


'
Blackpool Teaching Hospitals NHS Trust is one of several hospitals that the Mail has discovered are being paid incentives to ensure a set percentage of patients who die on their wards have been put on the controversial regime.
Payments are made through a system called Commissioning for Quality and Innovation, which channels money to hospital trusts through NHS ?commissioners?.
Documents show that for the financial year that ended in March there was a target of 35 per cent of all deaths on the LCP.
Over the past two years, £680,000 in bonuses have been available to the Trust for achieving goals related to ?end-of-life care?.
Last night Mr Greenwood was appalled at the revelation the hospital was receiving money for meeting targets for putting patients on the pathway.
?I am absolutely disgusted,? he said.
?This puts this whole thing in a totally different light. They?re making money out of killing people.?
Nearly one in three of all patients who die in hospitals are on the Pathway, which often involves sedation with morphine and the removal of tubes providing nutrition or fluids to the patient.



Mr Greenwood is not the only one who is appalled and disgusted.

This is not going away because the Daily Mail has made it public.

[claig]

Now they are finally having a review of it.

You can keep talking about teh futility of pumping water to dying people, but no one is convinced by that talk. It's not pumping, it's spooning water or tickling water with care by the caring profession.

The inquiry is not completely independent and people are already bringing it ip. This will not go away, because good papers like the Daily Mail and the Daily Telegraph will not let it lie.



'Care Minister Norman Lamb said: ?We need to know how patients and families feel about the care they receive.
?We need to make sure that health professionals have the best tools to help them with this sensitive work.?

But MPs and doctors criticised the inquiry for not being independent. It will be run by a Heath Department organisation, the National End of Life Care Programme, and medical organisations which have been deeply involved in promoting and operating the Pathway.
Dr Philip Howard, a consultant physician based in London, called for a judge or senior barrister to be in charge.
?It was only two or three weeks ago that creditable organisations were saying the LCP was a framework for good practice that did not hasten death,? he said.
?The very same people are now saying they are conducting the inquiry. It?s like the fox guarding the henhouse.?
Julian Brazier, Tory MP for Canterbury, said: ?There should be an independent inquiry and not one run by the practitioners.?
Dr Tony Cole, chairman of the Medical Ethics Alliance, said: ?The inquiry will only command public confidence if it is independent.
?There are many people who contacted the Press with dreadful stories and this inquiry should be open and their voices heard.?

[LengLogs]

I'm only speaking of my experience of 11 years on an acute medical care of the elderly ward within our Trust, we don't use the LCP as such, we have our own version of a care pathway but the principles are the same.

We couldn't give a shit about bonus incentives of putting patients on the care pathway. We are frontline staff. No one tells us to hit targets with regards to dying patients. Bonuses mean nothing to us as we work for the NHS, we don't see a penny of it. To say that Doctors and Nurses use this tool as a means to earn the Trust money is bloody offensive and grossly innacurate.

Patients are monitored by numerous HCP's when in hospital. Management do not get involved with that side of things. Unless you work in a hospital environment, you would know this.

[claig]

LengLogs, if it is so well known then why do you think that they are spending money to review it and they will look at the financial incentives involved and why do you think that the following was said by a professor

'One of the leading critics, hospital consultant Professor Patrick Pullicino, said: 'Given the fact that the diagnosis of impending death is such a subjective one, putting a financial incentive into the mix is really not a good idea and it could sway the decision-making process.'


These decisions are taken above your head, you are frontline staff, but policy and these pathways are decided way above your level. The Daily Mail and the Daily Telegraph have reported on many dreadful stories by families.

[claig]

LengLogs, you work in the NHS and you are not concerned about these financial incentives. You think there is no conflict of interest.

Well, Mr Greenwood is appalled and disgusted. His family were livid when told not to give water to Mrs Greenwood.

'Dr Tony Cole, chairman of the Medical Ethics Alliance, said: ?The inquiry will only command public confidence if it is independent.'


This is now public, even the BBC ran an article where a family member said it seemed to him like torture.

Public confidence needs to be reassured and the public will not be satisfied with frontline staff saying trust is we know what we are doing and there is no problem.


'
Hospitals will no longer be able to profit simply by putting dying patients on the Liverpool Care Pathway.
NHS trusts have been receiving six-figure sums for using the controversial end-of-life regime.

But care minister Norman Lamb said these ?bribes? would have to stop unless it was shown suffering had been reduced.

It is feared the incentives pressure doctors to use the pathway even when a patient?s life may not be nearing its end.'


www.dailymail.co.uk/news/article-2262503/Hospitals-stripped-cash-bribes-death-pathway-shake-controversial-end-life-regime.html

[claig]

Get real. This is why they are holding a review into it.



The Lib Dem minister said there would be a specific session of the review which would question families about their experiences. Medical experts ? both those for and against ? would also appear.
He said: ?I have been deeply troubled by some of the stories that have been reported to me about the experiences in some hospitals. It is impossible to know the scale.

?I am deeply concerned about the apparent misapplication of Liverpool Care Pathway guidelines in some hospitals.

?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.

?I will act on any rational conclusions that come from the review. We have the chance to get to a great conclusion, where we can genuinely improve the quality of care at the end of life.

?It is critical that food and drink is not withdrawn, unless to give food and drink would cause unnecessary suffering. I have heard stories of people who are compos mentis being denied liquids ? and this is deeply disturbing.?

[claig]

Just think of the poor old people who have no family at all; those who are all on their own, with no one to badger and pressure and ensure that water is given with a teaspoon. What chance do they stand?

We had a report recently where we were told we should start washing our relatives in hospital because the NHS staff are too busy. What about the poor people who have no relatives. This type of care is unacceptable and I welcome inquiries that change things for teh better.

[JakeBullet]

"Good papers like the Daily Mail" ....that was a joke wasn't it?

The LCP is fantastic when used properly (and that means taking away financial incentives etc). My much loved auntie went onto the LCP at the end of her life ...she was dying from terminal cancer. The district nurses were fabulous with her....the LCP wasn't discussed with her when they commenced her on it as she was largely unconscious by that point. It was discussed with us as her family though. They did not withhold food or fluids but neither did they force it into her....my auntie by that point wanted nothing more than a Callipo lolly ...half in the morning and half later. They did not withhold her medication either...pain relief was given as needed and prescribed.

My auntie died peacefully with us holding her hands...it was as peaceful and as good a death as it could be.

I have been a nurse on elderly care wards and have seen terrible things in my time....notably invasive treatment on people dying ...it added nothing to their quality of life or to the length of that life. How much kinder the LCP would have been....eat and drink what you want and when you want.....pain relief when needed and good nursing care. But it should not be used unless a patient is already dying and then only to ensure the patient is kept comfortable....that's what happened for my aunt....and my Uncle when he was dying.

[elastamum]

I read the OP's response and the issue of funding her care struck me. This is exactly what happened to my aunt. She was state funded in a care home. She had been the subject of a long running dispute between us and the trust regarding funding. She had no money of her own as all her wealth had been spent on care and was gone, and no children of her own. So they were trying to get her extended family to pay for her. At one time they even tried to discharge her into my care as a privately funded patient.

As soon as she got an infection, we were told she was dying and asked permission to withdraw food and fluids. This was'nt the case and when I made it clear I didnt consent and was prepared to challenge their judgement they backed down and she recovered and lived on.

The issue was'nt with the LCP as such, but that as an old lady with incurable demntia she was seen by the trust and social services, to be using up resources that someone thought would be better spent elsewhere, so they wanted her gone.

[Piecesofmyheart]

Claig - what happens when you 'trickle' fluids into the mouth of a patient who is unable to swallow because they are in the terminal stages of their illness? Where does that fluid go? What happens when you 'pump' IV fluids into a patient who is unable to swallow but is suffering from CCF ? Where does THAT fluid go?

'The hospital concerned has been paid more than £600,000 in the last two years to hit targets for the number of patients who die on the Pathway, according to documents uncovered by the Mail. '

I cannot WAIT to see these documents. Really and truly cannot WAIT!

[JakeBullet]

...but we have chronic understaffing in hospitals and claig has a good point about it being monitored. I would feel awful as a nurse if a patient suffered more than they needed to.

[claig]

'what happens when you 'trickle' fluids into the mouth of a patient who is unable to swallow because they are in the terminal stages of their illness? '

But Mrs Greenwood was denied water and she wasn't in that state.

What happens when you deny water to people who are compos mentis and not in that state? They die.