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Liverpool care pathway

534 replies

stella1w · 31/01/2013 19:05

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?

OP posts:
Piecesofmyheart · 01/02/2013 18:30

Claig - I don't believe that in the UK, in recent years, patients who are not dying, are systematically being starved to death because of financial targets, in the numbers that you and other readers of the daily wail, have been led to believe. I don't believe it and I am confident that the evidence presented to the Independent Review will prove that it does not happen.
Bad practice, and bad care DO happen, and part of me can't help but thinking that the public money which will be spent on the review would be better spent on training and education for front line health professionals.

And as for your assertion about blindly following something, I was a patient at Stafford hospital during the time investigated in the forthcoming report. I have no problems with calling out crap care and bad practice when I see it (and that includes issues witnessed in my own clinical setting)
I do however have a problem with you repeatedly ignoring a question about the administration of fluids to terminal patients with an eventual acknowledgement that you don't actually understand the issues.

And with regards DNRs, the last patient I witnessed undergoing a resus attempt ended up with multiple rib fractures, and died in horrific circumstances. the reality of resus is so very, very different to that which is portrayed in Casualty. And before you start accusing me of not performing CPR as a blanket policy, I have been involved in 2 successful resus attempts on otherwise fit and healthy individuals.

claig · 01/02/2013 18:31

This reply has been deleted

Message withdrawn at poster's request.

XBenedict · 01/02/2013 18:34

The GMC has published some very detailed guidelines for clinicians to follow that they have to answer to.

claig · 01/02/2013 18:39

Piecesofmyheart, I don't work in a hospital and haven't been trained in teh fluid case you keep trying to catch me out on. That is what you are paid for. I don't know the ins and outs of your fluid example.

But what I do know is that Mrs Greenwood was denied fluids under the LCP and her family were furios and gave her water themselves even after a nurse told them they should not, and she is now alive and planning a worldwide cruise.

You see no problems with the LCP. Mrs Greenwood, her family, I and many Daily Wail readers do.

claig · 01/02/2013 18:41

Even Norman Lamb MP is disturbed by some reports he has heard and is holding a review of the LCP.

LengLogs · 01/02/2013 18:52

The decision to put a DNR order on a patient is not made by one doctor though claig. Its made by the medical team, of usually 3 doctors plus the consultant with the nursing teams input.

Seriously, stop reading the daily mail.

WynkenBlynkenandNod · 01/02/2013 18:53

Whilst there's lots of HCP's on here could I ask a question ? If a patient with a life threatening disease but currently stable decides they wish to have no further treatment, do not wish to have any food or fluids, is the LCP likely to be used at some point over the next few days as assumably they start to lose consciousness at some point ?

Sirzy · 01/02/2013 19:00

She was denied fluid because of poor care NOT because of the LCP. Why is that idea hard to grasp?

claig · 01/02/2013 19:08

''Doctors at the hospital had removed all feeding tubes and drips and placed the 82-year-old grandmother on the Liverpool Care Pathway'

Sirzy, it was under the LCP. If it was poor care, what has happened to all these staff. Are they still practising? I don't think it was poor care, it seems it was under the LCP.

Norman Lamb is holding a review of teh LCP to see why these things are happening to the many people whose stories are related in the Daily Wail and even on the BBC, where the BBC headline was "Liverpool Care Pathway death prompts torture claim".

Aerobreaking · 01/02/2013 19:08

There is a fundamental fallacy that people here who are 'against' the LCP always fall into - and that is that there is some kind of choice in the situation when somebody reachest the end of their life. It is not the case that it is simply, go on the LCP and die, or not and live, because these patients are dying. They will die anyway, whether we care for them or not, whether we give them pain reief or not, whether we carry on medications that in many cases produce side effects that outweigh the benefits anyway. We cannot control death, in our society we are conditioned to belief that death is somehow unnatural, always intrinsically wrong and therefore other people can be held accountable, when that simply isn't the case. The LCP began life as an audit tool, a way in which the hospitals could see whether the patients that die (and there will always be patients that die) have been cared for in the way that minimises their suffering. And that is exactly what it is. When it is implemented properly (patients being allowed fluid/food if they want it), being given adequate pain relief etc, it is the kindest thing to do.

Yes, there will be some people who appear to get better once on the LCP, and detractors often site that as evidence it is being used incorrectly. However, people can be taken on and off the LCP, and secondly, often people improve because they have been placed on it, usually due to stopping many of their medications, as well as the psychological effects of not being poked and prodded.

And as for the accusations that there is a financial element to putting patients n the LCP - well, I find it hard to even dignify that with a response. Think about what you are saying - that the doctors and nurses who go to work everyday to look after the sick, who spent years training - are deliberately 'bumping off' patients for a financial gain that they will never see? And also, the above about targets for 35% of patients who die should be on the LCP is not necessarily a terrible thing, it is saying a certain percentage of patients who die anyway, not somehow increasing the number of deaths. The majority of patients who die do not die of a sudden, acute 'attack of death', it is a more drawn out process and ultimately the most loving thing to do, the most dignified thing is to treat that person as someone who is leaving their life, not having their final moments spent being poked getting cannulas in or being pumped with fluids.

A final note about DNARs, like a PP post, only 1% of CPR attempts are successful. The simple fact for this is that the patient is dead. You cannot and will not successfully bring someone back to life when the patient has died, especially when they have underlying pathology (which can include advanced dementia without necessarily requiring other pathology). Have you ever seen CPR being done? It is brutal Very occasionally you may get some electrical activity in the heart, but that person is not alive, and goes on to officially 'die' 12, 24, 48 hours later. That is not patient centred care. Who wants that. The best treatment is not always life-sustaining. We have to put our misconceptions about death aside and talk about dying. It will happen. The LCP is simply a way of trying to make sure it happens in the most peaceful way possible.

Aerobreaking · 01/02/2013 19:13

claig, if they refused the patient fluid, they were not acting under the LCP. Full stop. The LCP is clear that if a patient requests hydration or nutrition, they are to be given it. The case you highlight is of bad care, not evidence that the LCP is somehow flawed. That is like saying - if somebody has a recipe to follow but they chose to ignore it and then the food doesn't taste good, then the recipe is to blame. It makes no sense. (And no, I'm not comparing a patient dying to cooking food, just trying to explain why you cannot use an individual's bad practice as a reason to write off the entire protocol)

Sirzy · 01/02/2013 19:15

Good post aerobreaking

Claig - yet again although you seem to deliberatly miss this the LCP DOES NOT tell people to withold fluids, it instructs them to only give fluid or food if that is what the patient wants which is very different. If someone witholds fluids from a patient who wants them then that is not a fault with the LCP it is a fault with the care giver.

claig · 01/02/2013 19:18

' It is not the case that it is simply, go on the LCP and die, or not and live, because these patients are dying.'

Please read Mrs Greenwood's story. The doctors put her on the LCP, her family gave her water against their advice and she lived.

Lots of families have made disturbing claims about the pathway and some of these will form part of the review.

It is not the case that there is no alternative to the LCP. Twenty years agothere was no LCP. There are alternatives. Water in Mrs Greenwood's case was an alternative that saved her life.

claig · 01/02/2013 19:21

Aerobreaking,

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

colleysmill · 01/02/2013 19:21

Trouble is in specific cases you don't get enough detail or the clinical reasoning behind why decisions are made.

Maybe in that case claig it was removed because the lady wasn't tolerating them, maybe they couldn't find access to put ivs in, maybe she was pulling tubes out. And yes maybe it was poor care and misunderstanding of the LCP.

It's just a pathway. A way of saying in certain cases no more unnecessary treatment - just care and being comfortable. It's down to the clinicians involved to ensure its delivered correctly.

I do agree families should be involved in the decision process and should have understanding why things are not or are happening as we were every step of the way at the end.

LengLogs · 01/02/2013 19:23

Oh FFS claig, stop quoting this persons story in the Daily Mail. I think we are all in agreement that if something went wrong with the implementation of the LCP, it should be investigated and the staff involved should be held accountable and either sacked or appropriately trained.

claig · 01/02/2013 19:25

And as for the accusations that there is a financial element to putting patients n the LCP - well, I find it hard to even dignify that with a response.

'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.'

5SpeckledFrogs · 01/02/2013 19:26

Another HCP here, I provide education in palliative and end of life care.

Wynken - in a word yes. If that person has refused further treatment and is refusing food and fluids they would become end stage very quickly and therefore the use of the LCP would then be appropriate. As that person had clearly stated their wishes a plan of care including the implementation of the LCP at the appropriate time should be discussed with them while they still have the capacity to understand and give consent.

The LCP is a tool to support the provision of high quality end of life care and when used correctly it is very effective in helping HCP's to support their patients in achieving a 'good death' i.e. one with symptoms controlled, in the persons preferred place and with spiritual and emotional needs met.

Unfortunately bad care does happen and HCPs can misuse the
LCP or use it inappropriately. I do not believe that the answer is to bin the tool. I believe it is to provide education and training to the staff providing the care.

After all, as several posters have pointed out already, the roll out of the LCP didnt necessarily change the care given to people in the dying phase of life. It is simply a method of recording the care given and prompting staff to consider every aspect of care at each interaction with the dying person and their family.

The guidance on implementing the LCP clearly states that the person should be supported to eat and drink for as long as they are capable of doing so. If that is not done the LCP is not being used correctly! Once the person is not capable of swallowing sips of fluids then MOUTHCARE MOUTHCARE MOUTHCARE!! Mouthcare is one of the most important things we can do to maintain th comfort of a dying person.

Regarding the situation described in the OP. without knowing the full circumstances it is difficult to comment but I would say that if a prognosis of weeks has been given it is difficult to see how the LCP is appropriate and I would suggest involving the local palliative care team for advice.

5SpeckledFrogs · 01/02/2013 19:26

Another HCP here, I provide education in palliative and end of life care.

Wynken - in a word yes. If that person has refused further treatment and is refusing food and fluids they would become end stage very quickly and therefore the use of the LCP would then be appropriate. As that person had clearly stated their wishes a plan of care including the implementation of the LCP at the appropriate time should be discussed with them while they still have the capacity to understand and give consent.

The LCP is a tool to support the provision of high quality end of life care and when used correctly it is very effective in helping HCP's to support their patients in achieving a 'good death' i.e. one with symptoms controlled, in the persons preferred place and with spiritual and emotional needs met.

Unfortunately bad care does happen and HCPs can misuse the
LCP or use it inappropriately. I do not believe that the answer is to bin the tool. I believe it is to provide education and training to the staff providing the care.

After all, as several posters have pointed out already, the roll out of the LCP didnt necessarily change the care given to people in the dying phase of life. It is simply a method of recording the care given and prompting staff to consider every aspect of care at each interaction with the dying person and their family.

The guidance on implementing the LCP clearly states that the person should be supported to eat and drink for as long as they are capable of doing so. If that is not done the LCP is not being used correctly! Once the person is not capable of swallowing sips of fluids then MOUTHCARE MOUTHCARE MOUTHCARE!! Mouthcare is one of the most important things we can do to maintain th comfort of a dying person.

Regarding the situation described in the OP. without knowing the full circumstances it is difficult to comment but I would say that if a prognosis of weeks has been given it is difficult to see how the LCP is appropriate and I would suggest involving the local palliative care team for advice.

Sirzy · 01/02/2013 19:26

Which is because only 16% WANTED it. That is how it works. That figure certainly doesn't provide any sort of argument against it.

If someone is dying then they could easily not tolerate even the slightest sip of water. I know somebody who died of cancer and they couldn't tolerate ANYTHING orally, he had a line fitted for painkillers and that was all the treatment he could tolerate and wanted. Yes they could have forced fluid and treatment, and yes he may have lived a few days longer but why? What would have been gained?

JugglingFromHereToThere · 01/02/2013 19:27

Good post Aero.

In my posts I've merely queried whether the Trusts should be involved with financial incentives. Having worked as a nurse myself I wasn't questioning the integrity of HCP's (though of course we're not always perfect !)

Something I'd like to ask those of you who know more about end of life care ...
A few years ago I had the privilege to be the last person amongst friends and family to visit an elderly friend of mine (one afternoon, he died later that evening) He wasn't on the LCP by the way but we all knew he was very unwell.
He had a glass of water beside his bed and the nurse said I could offer him some.
We talked about lots of things that afternoon, especially poetry which he and I both enjoy. At one point, though he didn't request it, I offered him a few sips of water which he took. Hopefully at least it helped his mouth feel less dry.
But I'm thinking he didn't ask for a drink. But did seem glad of the opportunity to take a few sips which he could manage.

So, I'm just thinking about this experience and how it relates to patients being put on the LCP.
Do patients have to request a drink ?
Some may be glad and able to accept something but not well enough to request it ?
And I'm guessing people vary in their ability to accept fluids even at the very end of their lives ?

claig · 01/02/2013 19:30

'LCP DOES NOT tell people to withold fluids, it instructs them to only give fluid or food if that is what the patient wants which is very different'

www.telegraph.co.uk/health/healthnews/9716418/Half-of-those-on-Liverpool-Care-Pathway-never-told.html

Aerobreaking · 01/02/2013 19:31

'Twenty years ago there was no LCP'

And people still died. Often after days, weeks, even months of pointless painful agonising treatment that was doing absolutely nothing to help them. Sometimes the best thing is nothing at all.

And Mrs Greenwood should have been given water and if she went on to improve she would have been taken off the LCP. People do get taken on and off it, it gets reviewed, it is not just people are put on it and then are left to die. Obviously not knowing details of the case, I would hazard a guess that the medics felt that there was little more they could do at that point, and believed she was dying. I suppose it fundamentally comes down to whether you believe they would say that if they thought she wasn't dying. But the fact remains that people can always be taken off it, and if the LCP had been implemented correctly at the hospital (which it sounds like it wasn't) than she wouldn't have died, she would have been taken off it anyway. Medics and nurses are not in the business of killing people.

claig · 01/02/2013 19:35

Why weren't they told? Was there something to hide about this fabulous pathway? Why aren't many people told about their DNRs? Is there something to hide from the people?

JugglingFromHereToThere · 01/02/2013 19:39

Communication with patients and families should often be better Claig - I don't think many HCP's (which I'm not ATM by the way) would disagree.
But I don't think that always means anyone thinks there's something to hide.
IMHO It's more complex than that.