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?

'But some people are dying in agony unnecessarily because their relatives have refused to let them go on the LCP'

If that is the case, then that is wrong. Do you have evidence of that?

I would like to know what the difference is in policy of giving fluids and removing fluids between the LCP and the 2/3rds non LCP. Is there a difference in policy? Because fluid removal is what worries me most and according to newspaper stories some families have said that fluids were removed from their loved ones and that when they themselves gave their loved ones fluids, that they recovered.

That is the main aspect of the inquiry that concerns me.

Amazinglily, cite your evidence please - and not from Mail reports.

Oh, for goodness sake. claig and Amazinglilly, just go and read Shergar's post and stop misrepresenting what the LCP is about.

Oh dear. The LCP is not "used to determine whether a patient is going to die". It's a protocol for palliative care for a patient who is already dying"

You state that a patient is already dying when they are placed on the LCP, but in saying that, you have already made the diagnosis or determination that the patient is going to die. Chalk and cheese surely? Play with words?, even my eyes roll at that rather feeble attempt.

Mere distraction and my apologies could you refer me to the post which I haven't answered.

Well, my forehead is getting sore from being bashed against the brick wall so I'm off to bed before DD wakes up again. Claig and Lily, please read Shergar's post.

I will state as I have very clearly before in previous posts. She knew herself she had mets because;

They were evident on a bone scan (which she saw)
She had corresponding pain at the sites consistent with the bony mets - and let me tell you these caused the most pain she experienced
They found them during surgery, clearly visible but too extensive to remove which had developed over a period of 2 weeks.
Visible signs of jaundice (yellowing of the skin) but scan declined by patient
Atleast 2 ct scans also confirmed extensive mets - and she had a copy of atleast one of the result reports

We know she had a tumour because they removed it surgically and diagnosed the strain of cancer.

Of course you can't see metastases (unless youre superhuman with xray vision) but the tests were fairly conclusive. Certainly the open and shut surgery was.

These tests were done by 2 different trusts. She had been under different consultants for her different issues and ultimately ended up at a 3rd hospital (due to geography) who also agreed with the diagnosis.

Now if this thread is trying to tell me the nhs was trying to imply she had an extensive disease progression beyond curative treatment but actually could have saved her (and did a mighty fine job of pretending to treat her in the process) then I wonder to who's benefit would that be? She worked for the nhs - its cost more in sick pay, pension outlay and hospital stays, staffing, surgery, medications etc than a financial incentive would bring in.

I fail to understand why posters are implying we were misled - unless you read her medical records then I guess I can offer no more. I was there and with due respect not anyone on this thread - unless my dsis has namechanged and posted but I doubt it, she finds these threads too distressing.

Lily I think we just x-posted. I don't really understand your last point but I'll see if I understand it better in the morning. (Sorry, really tired - DD is a non-sleeper and we're trying some quasi- controlled crying with her. Which means no sleep for me either!)

You state that a patient is already dying when they are placed on the LCP, but in saying that, you have already made the diagnosis or determination that the patient is going to die.

Yes- the LCP is a 'tool' or means of providing end of life care for dying patients.

It is NOT, as has been claimed repeatedly on this thread, used as a means of killing off otherwise healthy people. But you believe that it is just that yes?

Fish Lilleys last post makes no sense to me either but I think I've got the gist...

Norman Lamb MP is a lovely, lovely man, but health isn't his area of specialty. He may have been the LibDem shadow health secretary back in 2006, but as that is pre LCP it is frankly irrelevant. He is not privy to any insider information that the rest of us are not on the LCP. If someone has blindsided him with the cases shown in the Daily Mail then of course, as a politician, his response will be to say "if this is accurate then a full investigation must be done". If one spoke to him about alleged occurrences of Cafcass writing reports that omitted claims of abuse then he would give the same answers. It wouldn't make him a leading authority in the inner workings of Cafcass any more than him saying "if the LCP has been used incorrectly, it should be reviewed" means he 100% believes that the LCP is a means to save income for the NHS by killing off the weak and alone. It simply means that if the accounts given to him are verified then the LCP should be reviewed as should the teaching methods used to instruct HCPs on it's use and the accountability of those 'delivering' it.

Shergar's post is very good and there is no abuse to those who take a different view or who question it.

But it is not only the Mail that carries reports abouyt teh LCP. The BBC does too.

I would like to know what teh difference is between LCP and non-LCP approach to fluids. No doctor has answered that.

What are the key differences between the LCP frameworek and non-LCP frameworks?

Are there any newspaper reprost of people dying in agony because they are not on the LCP?

Shergar, there are reports in the press where families say that fluids were withdrawn from patients, and that after teh family themselves gave fluids the patient recovered. What checks and balances and rights do patients and families have to ensure that fluids continue to be given, because without fluids it seems that death will become certain.

You state that a patient is already dying when they are placed on the LCP, but in saying that, you have already made the diagnosis or determination that the patient is going to die

And? There does come a time when it is obvious that people are going to die. Why do you find it so impossible to accept that that is the case? As Shergar has said, that doesn't mean that food and drink are withheld if they can tolerate them. Yes, there are occasions when in fact the person rallies, because nothing is 100% certain in medicine - which is why the situation is kept continuously under review and is why people can be and regularly are taken off the pathway.

colleysmill, for my part I have have no doubt at all as to how the NHS treats the victims of cancer and must admit, the treatment of cancer victims, I have known has been of the highest standard and like many, I know people who are at this moment dying of cancer.

I worry greatly though, not so much about their ongoing treatment, but what happens if there is no remission, with care practice so seemingly hit and miss, I worry about what treatment they will receive at the hands of the NHS in the future.

Nothing is 100% certain, not even the LCP, are getting somewhere here?

'I would like to know what teh difference is between LCP and non-LCP approach to fluids. No doctor has answered that.'

Not a doctor, but I drew attention to that very issue in the description I gave about 2 separate patients earlier in the thread. IIRC, it was ignored......

Claig is there a need for a national directive at all, indeed is there a need for a framework?

After all why would people have to die in pain, if there was no framework, would not each individual be assessed at point of need anyway? With or without a framework?

Lilley :

www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_086277

The LCP does not call for the removal of any life sustaining treatment, unless it is shown that continuing those treatments would be futile and only prolong suffering and drag out an inevitable death. The miraculous recoveries that have been repeatedly listed above were a result of the LCP being improperly implemented, not a fault with the LCP itself.

People are not 100% infallible, nor is the training they receive. If claig and his associates have such a problem with treatment received under the LCP they would be better served calling for a review of the teaching methods used to ensure all HCPs who have involvement in it understand how it works, than by claiming the the pathway itself is at fault and should be removed, leaving thousands of terminal patients ending their days subjected to unnecessary and invasive tests.

Pieces, I will look for it. Can you remember any words that you said in it so that I can search for those words using Ctrl-F?

Nice one Pieces, not something I already didn't know, I have read Government dossiers until they have come out of my ears.

So I will revert back. Whether or not a framework is in place, should not be relevant to pain management, that should be decided on individual merit and assessment. After all it does not take a framework for a doctor to be able to tell someone is in pain. So the need for people to die in pain without the use of the LCP, is a none starter is it not?

Now who is trying to scaremonger who I wonder?

The lcp for mum was actually only a tiny part of her overall care. In times of time span it was only 3 days. It didn't change the outcome, oi firmly believe she would have passed away regardless LCP or no LCP.

I am a firm believer in tests and obs when they are clinically indicated and when you are actually going to do something with that information. What's the point in checking blood pressure if you can't change it medically? Why does it matter what their temp is if you can't administer antibiotics? Why unnecessarily disturb a patient for bloods if you can't act on that information. For me as a relative this was the most important thing.

So its back to providing high quality care again that is appropriate for that patient at that time. But if we want consistent care nationally across the country you need guidelines to ensure that everyone is following the same thing. Or the preferred term of the moment "a care pathway"

Veritate, I'd like to think you are right but in my local hospital they start measuring coffins and planning future use of beds for those on the LCP. A recovery would fuck up their plans.

Claig, Google the LCP paperwork and read for yourself. Families (who are often recently bereaved and very distressed) and newspaper reports of what they say are not unbiased, and the understanding that relatives have - even after detailed explanations have been given to them several times, by different people - of what has gone on are not always accurate. The phenomenon of recall bias is well known in research too. People who are dying, who have kidney failure and/or heart failure, often can't tolerate any fluids, and attempting to give them will increase their discomfort as fluids pool in their lungs - a highly unpleasant sensation akin to drowning. People who've had strokes that affect their swallow may not be able to have fluids orally because it will go straight into their lungs, and they choke. Patients who still want to drink, and who can safely drink, will do so. Sometimes we have to withdraw fluids because if we didn't, it would cause suffering. You can't 'ensure' fluids continue to be given - they won't be if they can't be safely given to a patient. A unconscious dying patient generally won't be given fluids either.

The LCP is a CHECKLIST that we mostly tick boxes in to indicate whether a patient can swallow etc. Several different HCPs go through it and although I have never known disagreement, we would discuss it if we encountered one, and mistakes would be corrected if any were seen. At my hospital, a member of the specialist Palliative Care team will also come to review the patient, and go through the checklist too. It is NOT a policy of any kind that says x, y or z must happen. It suggests ideas and acts as a prompt for us to remember to think of all symptoms that can cause distress, and to check the patient regularly and systematically to make sure nothing is forgotten in ensuring comfort. Read it yourself.

I hope I am treated with the LCP if I need it one day - it is an excellent care pathway. Please do also consider how distressing and demoralising it is for doctors and nurses to be basically called murderers by hysterical, uninformed newspaper reports.

'The miraculous recoveries that have been repeatedly listed above were a result of the LCP being improperly implemented, not a fault with the LCP itself.'

OK, guidelines are guidelines, but it is how and when they are implemented that needs to be looked at. It seems, according to press stories, that some people have been placed on the LCP when it was not necessary for them.

What can be done to prevent this? What rights do patients and families have to prevent this happening and to question it or to appeal against it?

Incidentally, my mother died in 2009 after suffering a massive stroke on a background of pancreatic cancer. She was cared for on the LCP and I was proud of the NHS then for the peace of her passing. And her swallow was unsafe and she received no fluids in the three days before she died, after the stroke. It was the kindest possible thing to do, and she had excellent mouth care throughout from the fantastic nurses at UCH, and - awful though it was for us as her family - I believe that she had the least possible distress at the end of her life. So do know that I have seen this from both sides of the fence.