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?

"Unfortunately there are going to be cases where the LCP is used inappropriately. Just as there are going to be cases where diagnoses are missed and delayed and operations that go wrong. It doesn't mean that the whole pathway should be scrapped."

So Jollyb, what is the answer for the cases where the LCP has been used inappropriately? Are they just to be put down to mistakes, I find this is an area which is particular interesting for me, because firstly there cannot be any acknowledgement of course, whilst the complexities from a legal viewpoint cannot be ignored.

If a mistake has been made, it could lead to long and complex legal proceedings, over the issues of medical negligence, breach of duty of care, with the potential for more serious allegations to be taken into consideration.

You are right Claig, whatever the medical establishment care to think, or who they name, on either side of this argument, is irrelevant. If there is anything to come out, it needs to come out, if there is nothing then that would bode well for the NHS and the LCP. But whatever which way, this goes public confidence in the NHS needs to be restored and whether it is media reports, or actual experiences which are pushing people into wanting questions answered, the imperative is not to try and bury the people, but to begin answering those questions.

It would not be untrue to say, that at the moment public distrust, rightfully or wrongfully in the NHS is at an all time low. Surely it is in the interests of the NHS and government alike to address this. Silencing people will never work, it never has done.

AmazingLily, everything will come out in the end.

Next week we will hear about what happened in the Mid-Staffordshire Trust. It happened years ago and is finally now going to be revealed. The shockwaves may be huge.

The medical establishment contemtuously dismissing public concerns will no longer wash. The papers are reporting on people and families who have written in to them, and they are doing a service to all of the public by keeping it frontpage news, so that those in authority cannot claim that they were unaware.

The public has seen coverup after coverup and some have taken years to reveal. The only way to stem public distrust is to discuss it openly rather than contemptuously dismiss it.

I've been thinking about this thread all day.

I'm all in favour of a review of the LCP but I think it would be a wasted opportunity not to look at the wider context. There are many organisations outside of the nhs which provide support and end of life care which are pretty well regarded. Why not look at hospices and charities like Marie curie which have long experience in providing care? What are their principles and how do they implement them in similar circumstances? What do they do differently and can that translate across to the nhs.

Let's have a review with good purposeful outcomes

But colleysmill, that's exactly what the LCP is.

"The LCP was developed during the late 1990s at the Royal Liverpool University Hospital, in conjunction with the Marie Curie Palliative Care Institute. It was intended to provide the best quality of care possible for dying patients in the last hours and days of life, whether they were in hospital, at home, in a care home or in a hospice. It was widely seen as a way of transferring the model of ?excellence? in the care provided in hospices to other healthcare settings such as hospitals and care homes.
The goal of the LCP is to ensure a death is as dignified and as peaceful as possible."

www.nhs.uk/news/2012/11November/Pages/What-is-the-Liverpool-Care-Pathway.aspx

colleysmill one of the main reasons for introducing the LCP was to improve the standard of end of life care across the system. So that patients dying in an acute orthopaedic ward have a quality of death comparable to those in a hospice. The steps recommended in the care pathway ie medication review to ensure unnecessary medications are stopped, are exactly what would be done upon admission to a hospice for terminal care. The LCP is often used within the hospice setting too.

I think a review of the LCP is going to be necessary, however in a way I am surprised that it has come to this - as in my experience the pathway works well. (though this could be because I am a blinkered and arrogant HCP).

I think there are areas of health care with far more worrying deficiencies - such a delays to cancer diagnosis.

Amazing lily -as for what can be done when a patient has been inappropriately placed on the LCP. It's a very tricky situation. It's always going to be difficult to prove, but if there are real concerns about this and the standard of care given, then of course it needs to be fully investigated.

'I'm all in favour of a review of the LCP but I think it would be a wasted opportunity not to look at the wider context. There are many organisations outside of the nhs which provide support and end of life care which are pretty well regarded. Why not look at hospices and charities like Marie curie which have long experience in providing care? What are their principles and how do they implement them in similar circumstances? What do they do differently and can that translate across to the nhs.'

to answer your question, can I again point you in the direction of the Concensus statement published in Sep 2012 - if you scroll to the end you can see how many of the organisations you refer to (including Marie Curie, Macmillan Cancer Care, Help the Aged etc) have signed this statement.

www.endoflifecare.nhs.uk/media/1879275/LCP_consensus_statement_24_09_12.pdf

there are too many cases of very bad care while on the lcp in acute hospitals ... what about the cases of cancer patients that have and are being mis-diagnosed .if this framework has been implemented then a doctor is not going to look at the overall picture or other causes to a patients illness

a hospice is a whole diff ball game people who go to a hospice are alert and can have a say on their own end of life . a hospital does not have the empathy or the staff to give anything other that a quick death ... regardless of the illness or if indeed they are in their last hours ,,it is just not good enough that hospitals do not have the staff to patients ratio to care for the medical needs of patients let alone to care for someone who may be close to death .....

'how did they know she had metatases everywere ?'

Have you ever heard of medical imaging Hotsteps ? CT/MRI/bone scans? Know what a CA125 is ? or a PSA ? What will they tell you about a patients disease progression ? Tell me about EPs and renal function ? Corrected Ca levels etc ?

Ah that's right - you know NOTHING about any of this stuff and choose to believe that a hospital manager wanders round a ward with a calculator and labels the random patients who are to be starved to death and whose relatives have a hotline to the wail.

a hospice is a whole diff ball game people who go to a hospice are alert and can have a say on their own end of life .

How long have you worked in a hospice for Hotsteps?

"it is just not good enough that hospitals do not have the staff to patients ratio to care for the medical needs of patients let alone to care for someone who may be close to death ....."

Absolutely it's not good enough, you can't give gold standard care when the wards are so appallingly understaffed but we can't blame the nurses and the doctors that work there for this. Something needs to change.

I just typed out a great long answer and then deleted it. I just cant be arsed engaging with ill-informed morons like lily, hotstepper and claig who parrot shit they read in the daily mail as scientific fact rather than equally ill-informed journalistic opinion.

I remember palliative care before LCP and it was hit and miss at best. The LCP is an evidence based tool which has ensured a much greater consistency in the end of life care in this country. So occasionally Dr's get it wrong- hold the front page they are fallible human beings just like you, not granny murdering psychopaths who are killing for cash.

As a HCP I am beyond insulted that you think we bump people off to free up beds. In ICU our decision to treat in the first place is based on the reversibility of the disease process which has brought them to the point of needing ICU care so if that means your 87 year old cancer patient who has a hospital acquired pneumonia will often be admitted and treated for their pneumonia with care that costs 2000 pounds per day regardless of the fact they have a cancer which will kill them in the next 6 months (oncologists are rather optimistic people).

I too welcome a review of the LCP because it will show it for what it is, a useful tool which allows people a peaceful and dignified death.

My point about looking at external agencies really was to highlight the similarities between their ethos and the LCP. By reviewing it as a whole perhaps that would be clearer.

I still think a national pathway is better than inconsistency and inequality around the country.

Anyway I think I'm hiding this thread now - I've shared my positive experience of the LCP and been questioned about the extent of my mothers illness and tbh I resent the implication that we and the medical team involved overestimated the extent of that illness and we just sat back and let her die.

Actually that last line is very ironic cause technically we did sit with her as she slipped away!

It's hard to articulate - she had treatment and it just didn't work. That's noones fault other than the disease process. Mum was going and the only things she could do for herself were sleep and breathe. Her care at the end is what you would hope everyone would get.

The only certainty in life is that we die (not a fan of being frozen myself!)

Yy therugratref.
I totally agree, and I'm not an HCP.

' I just cant be arsed engaging with ill-informed morons like lily, hotstepper and claig who parrot shit they read in the daily mail as scientific fact rather than equally ill-informed journalistic opinion.'

You can insult and call me a moron, but please do not accuse Mail journalists of the same.

The following comes from today's Mail about the Mid-Staffordshire Trust case rather than LCP

'Three managers from Mid Staffordshire NHS Trust are to face public disciplinary hearings over their failings during the worst-ever NHS hospital scandal.
It is understood they will be the first to face the prospect of formal action over appalling standards of care at the trust between 2005 and 2009.
Staff there have been blamed for the ?unnecessary? deaths of up to 1,200 people because they put targets and cost-cutting ahead of patients? needs.'

www.dailymail.co.uk/news/article-2272508/Only-THREE-managers-dock-NHS-scandal-1-200-unnecessary-deaths.html?ITO=1490&ns_mchannel=rss&ns_campaign=1490#axzz2Jnvro0eF

'I remember palliative care before LCP and it was hit and miss at best.'

At the moment approx 130,000 people a year are on the LCP and twice as many who are very close to death are not placed on the LCP. Does that mean that their treatment is hit and miss and that their deaths are undignified and painful? I doubt it.

As an HCP, do you think that eventually everyone who is very close to death will be placed on the LCP?

claig, lily, hotstepper - can you provide a link to any authoritative review or comment piece which supports your arguments? By "authoritative", I mean not the Daily Mail or any other tabloid newspaper, and not someone's Facebook page.

Having been involved in some events which were then reported in the newspapers I am very sceptical about them getting anything right. In the events I was involved in they got absolutely nothing right.

There may be a few journalist who check their facts but my experience is that most don't let the truth get in the way of a good story.

What you need is peer reviewed articles published by well qualified people and published in a reputable journal not a tabloid newspaper.

Fishandjam what arguments are talking about, so far I have only asked questions, but since you ask does experience count at all?

fishandjam since you talk of authoritative? is a report not in itself not authoritative? These reports you unfortunately have a habit of disregarding, or denigrating, are what make the public aware of such matters, rather than trying convince a few on here are you not better trying to allay the voices raised against you by investigating exactly why they think the way they do.

Ranting at people and referring to Facebook is not going to change anything, they are going to continue to say and do what they think is necessary, which seems to be, on looking at their site, to get a message across to the public that the LCP is on the whole is unjustifiable and unsafe, if that is the case, you are losing the counter argument by using hostility and insults.

They do not have to provide any journal and there are photographs on that site which seem to display a very different perception to the one you are trying to put across?

I am becoming alarmed at the inability to appropriate some mechanism on this, which comes down to more than just a pile of some report or other, especially when it appears to be the case that human lives are involved here.

'What you need is peer reviewed articles published by well qualified people and published in a reputable journal not a tabloid newspaper.'

The Telegraph is a reputable newspaper and not a tabloid and carries many stories on the LCP.

Here is the website of the Medical Ethics Alliance
www.medethics-alliance.org/

I am not an HCP, just a member of the public, and have sometimes been derided as illinformed moron. What worries me most is dying of thirst and dehydration. It seems to me that it could be an agonising death and I can understand why major medical intervention is not undertaken on the LCP but find it difficult to understand why in some cases, as stated in newspapers, that water is not provided to dying patients.

Even pictures and poems of soldiers dying on the battlefield often involve their colleagues giving them water as they die.

'Since the pioneering work of Dame Cecily Saunders there is no need to fear unrelieved pain, but what I do fear is thirst. In a letter to the Chief Executive of NICE ( National Institute of Clinical Excellence ) I asked;

?How long should a person be without fluids??

No answer was forthcoming from him nor subsequently from the Association of Palliative Care Medicine.

Maybe, I am one of the few people here who has seen death from thirst. It was in a newborn baby and is not something that is easily forgotten. I am reminded what Dame Cecily Saunders said ;

      ?How people die remains in the memory of those who live on?.

In fact no one can survive without hydration and nourishment. They are basic human needs. The human body has a built in control system to ensure that fluid intake continues. Thirst is a primitive sensation which eventually comes to dominate all others and the thirst centre lies in the hypothalamus one of the deepest levels of the brain. There can be no certainty that drugs working on the higher centres will abolish thirst.

Baroness Knight took part in a recent Newsnight discussion in which the President of the Association for Palliative Care Medicine stated that the dying do not experience thirst or that it can be relieved by moistening the mouth.

In fact Dr Peter McCullough a senior researcher at the John Curtain School of Medicine of the Australian National University in a review of the literature in 1996 quotes Fitzsimons and Barnard ;

      ??moistening the mouth failed to relieve thirst in dogs and horses  with oesophageal fistula ?and it is evident that, whereas dryness of the mouth can aggravate a sensation of thirst resulting from body water depletion, its alleviation will not remedy thirst in the absence of correction of water depletion.?

As a recently as 2009 the distinguished professor Sam Ahmedzai with long experience in Hospices writing in The Times said;

      ?Hospices have always maintained that dying people  do not feel thirst and to die in a state of dehydration is ?natural?,     and even desirable. I am struck by the stability of this view over several decades but in healthcare, such a focus would be seen as narrow minded inflexibility. Several studies have shown that dehydration can cause intense suffering and people recovering from severe life threatening illness in intensive care units recall thirst as one of the most distressing sensations. Dying people often cannot tell us how they feel, yet they will    probably experience the same feelings we all do when we are dehydrated.'

lily, where have I insulted anyone? Or ranted? I await your response with interest.

Ok, I think I used the word "flipping". Fairly mild by MN standards, I think!

therugatref, since when have I paraphrased any newspaper, then again you paraphrase and cut and paste too as suits, and if you cannot be bothered, why are you in this debate, I am seeing a very different side of the NHS on this forum and one that is not particularly wholesome.

Jollyb thank you for your courteous response,

"Amazing lily -as for what can be done when a patient has been inappropriately placed on the LCP. It's a very tricky situation. It's always going to be difficult to prove, but if there are real concerns about this and the standard of care given, then of course it needs to be fully investigated."

The next question would be, is what type of investigation should take place, are the complaints procedures, which the NHS work by sufficient enough for to protect the public interests, or as regards the LCP, is there a need for a more robust and expert framework to be set up, in which case should the NHS insure itself against any mistakes which happen under the LCP? Since making a mistake whilst using the LCP will invariably lead to a loss of life.

Also should relatives have the right to remove a patient from under the care of the LCP if they think he or she is not receiving proper care?