Liverpool Care Pathway - to be replaced with what ?

[JugglingFromHereToThere]

I've heard recent reports that the Liverpool Care Pathway may be replaced - as some relatives not happy with the end of life care their relatives have received under the LCP.
But am not sure it will be replaced with anything better.

Basically my feeling is that death is a natural part of our life journey, and I feel there is a lot of potential for better end of life care and care of relatives, as shown by the excellent practices in hospices. Unfortunately such good care is not always available to everyone in all settings (eg hospitals not always so good at managing good deaths for all)

Whilst some relatives would like to see more medication used to hasten death (and thereby lessen suffering) in other recent cases the use of morphine - and placement on LCP - has been criticised (eg Mother of 6 who died in hospice recently)

Personally I feel quality of life is a very important factor and medical care should not only focus on prolonging life but on helping provide good end of life care too.

If the Liverpool Care Pathway is abandoned will end of life care actually be improved in our country ?

[drivinmecrazy]

But they are not talking of completely scrapping the LCP. There has been a review published today being supported by Marie Curie Cancer Care.

Don't know full recommendations announced cos am on the school run but may well be worth looking into.

the idea that hospice models should be replicated in hospitals still stands. Its only further training that will enhance implementation of the overall ideals

[drivinmecrazy]

This is the marie curie response to the review www.mariecurie.org.uk/lcp_response

[JugglingFromHereToThere]

Apparently the LCP is being axed - or "phased out over the next year"
Report said that the LCP was "being used as an excuse for poor quality care"

Excellent input from Sue Ryder spokesman on BBC news just now talking about all the issues, and saying that end of life care will only improve with better training for HCP's and more focus on this area of healthcare, including individual approaches taking account of person's own wishes, and better communication with families.

I think the question of what is to replace the LCP remains

[JugglingFromHereToThere]

Thanks for interesting link drivin

[secretscwirrels]

Hmm. I didn't realise it at the time but my DF was probably on the LCP when he died in the hospice. The care he got there was outstanding but there was just one thing that I was uncomfortable with. Near the end he could no longer swallow but he could indicate that he was thirsty. He did that over and over. I asked the staff for help and they set up a subcutaneous drip which did not seem to help.
It seems to me looking back that the LCP prevented them from hydrating him properly which caused him discomfort.
Perhaps it's too prescriptive?

[JugglingFromHereToThere]

Am glad you were generally happy with the care your DF received wirrels

I think the hydration issue is one of the key things that any review of end of life care is going to be looking at. Does seem that care under the LCP may not always have got this right, and also that care does perhaps need to be more individualised, and responsive to the requests of the patient as well as their families.

Perhaps introducing the LCP was a step in the right direction - starting as it does by recognising that someone may be dying and looking to manage this well. But perhaps we're just ready now as a society to move forwards again with improving end of life care further for all, and in all settings.

If so, all to the good.

[claig]

I am very pleased they are scrapping it, and am grateful to the government for listening to the concerns of many people relatives and other people about it and for taking action.

[NameThatTuna]

What would you replace it with claig?

The problem isn't the LCP, it the lack of knowledge, communication and training. When used properly, its an effective tool to provide end of life care. Patients on an LCP can be taken off it if their condition improves. It's the lack of training of the staff using it that's the problem. Or in some cases, the families cannot accept that death is inevitable.

Communication and training is what's need. Not getting rid of it completely.

I've had plenty of experience with the LCP, as a HCP and as a relative.

[claig]

I would replace it with a caring system where no one is dehydrated and where relatives are informed at every step and this should be backed up by legal sanctions at every step.

I would put cameras on every ward and care should be monitored and all patient consultations should be documented. I would prosecute and jail anyone found not to have given proper care to patients. I would put patients on management boards and make it a legal requirement to respond to complaints and criticisms of patients and patient groups.

I would make it a legal obligation to whistleblow if poor care is being administered and would prosecute anyone who did not raise that issue if they were aware of it.

I would make management liable for systematic mistreatment on their wards, and I would give the stiffest jail sentences to those higher up the chain.

I would sack anybody guilty of complacency about patient care and would sack any apologists for poor treatment. I would replace certain senior managers by people who have been proven to have patient care as their priority. I would scrap the tick box culture and target system and hold accountable people who had prsedided over such systems while thousands of patients died early and needlessly due to poor care.

I would fund our free press to look into cases of poor treatment and poor patient care and I would use them as part of the solution of shining a light on mismanagement by managers or politicians or policy planners.

I would make it clear that patient care is the number one priority - not targets - and I would ban financial incentives to hospitals to place people on "care pathways".

thankfully, after a long period of media pressure by some of our newspapers who have listened and responded to the complaints of patients' relatives, the government is doing many of these things.

But I would not let up on it, I would make it clear to all staff and management that there will be no excuses for poor care and that there will be jail sentences for those found to have administered it.

[claig]

Melanie Phillips has campaigned tirelessly over the Liverpool Care Pathway and has taken abuse from many interested parties because of it.

Melanie and the Daily Mail will not give up highlighting what has been happening and we can only hope that their reporting and pressure will mean that there can be no more slipping back. But Melanie raises a note of caution and emphasises that the people still need to be vigilant about what is occurring.


"Indeed, as soon as the reports first surfaced over the weekend that the Government was intending to end the LCP ? even before I had seen these stories ? I was already receiving tweets accusing me of having brought about an end to the humane care of the dying.
Such ill-judged anger among health professionals and others about criticism of the LCP surely derives from precisely the fundamental confusion or callousness that led to the abuses.

Care and Support Minister, Norman Lamb, says that end-of-life care will now be tailored for individual patients. But this fails to identify the very confusion at the core of this problem
And it is far from clear, despite the advance reports of the LCP?s demise, that the Government will do more than usher in a merely cosmetic change, rather than tackle the attitudes which lie at the very heart of this problem.

Mr Lamb struck an ominous note, for example, when he said the LCP?s replacement would not be called a ?pathway? ? which suggested that these practices might continue under a different name.

He says that end-of-life care will now be tailored for individual patients. But this fails to identify the very confusion at the core of this problem. This arises over the issue of medical staff being able to identify correctly when someone?s life is about to end. For the advice at the core of the LCP is, in fact, nothing other than basic good medical practice in care for the dying.

When someone really is dying, it may indeed be inappropriate, intrusive or even cruel to continue with treatment, feed them through tubes or inflict upon them similar pointless procedures.
They should instead be kept comfortable and free of pain, offered nourishment if they show they want it, or merely have their mouths moistened.

The inevitable process should be allowed to take its course ? but only if it is indeed the irreversible closing down of all bodily functions which dying entails.

The Liverpool Care Pathway abuses occurred, however, largely because it was applied to patients who were not at the end of their lives, but who were starved or dehydrated to death."


www.dailymail.co.uk/debate/article-2363772/MELANIE-PHILLIPS-Hope-pathway-death--NHS-hole-heart-be.html?ico=home^editors_choice

[stella1w]

My friends mother was put on this a few months ago by her gp against the wishes of her family. Her carers ignored him and continued to feed her complan and guess what.. She is still here! As for the pp who said people can be taken off the pathway if they recovr, that is crazy. They were onlu ever meant to be on it if they were dying. But denying water to an elderly, weak person will mean they will die when they might otherwise survive. Sure, stop meds if someone is close to the end but not fluid. That is plain evil. And i say that as a non-religious person.
At the same time as my friend's mum had been put on the pathway but her gp, her health visitor was refusing an air mattress to protect against sores because the woman was too mobile. Yes, this was a demented octogenarian, living at home with the help of visiting carers, walking and drinking unaided and put on the pathway by her gp with no consultation or right of appeal.

[claig]

Well said stella1w.

Some people have been taken off the Pathway when it became evident that they were getting better desoite having been placed on it. The Daily Mail has many stories of such incidents.

What has been happening in many cases is a national disgrace and the end of it is not moment too soon in my opinion. People have been scared to speak up and oppose what was happening and newspapers who brought it uo on behalf of distraught relatives were often dismissed by the high and mighty. But it got to the stage that the elephant in the room could no longer be ignored and teh government had to respond.

They have decided to scrap the word "pathway", possibly because it has now become discredited in the eyes of much of the public, but cosmetics and branding and name changes are nowhere near; many more changes to some of the underlying philosophy need to take place and it seems that some will take place. We will need to remain vigilant to ensure it really happens.

The scrapping of the Liverpool Care pathway was only number three item on Channel 4 News tonight, which in my opinion is disgraceful considering the importance to the nation and to relatives of people who died early while placed on it, often without consulting the relatives.

The people think it is an importat issue and so do some of our media and some of our politicians.

[claig]

BBC local news now discussing the Liverpool Care Pathway and interviewing campaigners against it. Very rarely saw this type of BBC reporting before it was finally scrapped and while other newspapers kept the pressure up for years.

[claig]

BBC Newsnight now discuusing excess mortality at NHS Trusts, but I am not sure they will mention the scrapping of the Liverpool Care Pathway, which is major news. Sadly, it does not surprise me.

[expatinscotland]

I think assisted suicide should be made legal, for starters.

[Zhx3]

This story has been haunting me. I think that my Nan was put on the LCP without it ever being explained to us. She had suffered a series of minor strokes and deteriorated physically and mentally in hospital over a period of 8 months. She went into a coma about 2 weeks before she died.

A tube had been inserted in her nose before she became unconscious and one day when we went into hospital, the nurses told us that it had fallen out and couldn't be re-inserted. I remember my mum, distraught, asking the staff to rehydrate her and them saying it would cause more distress to put the subcutaneous line in for water, than be of use. She died a couple of days after they stopped hydrating her. For sure, she was at the end of her life, but I can't even think of that horrendous time without feeling as if we should have fought to have things done differently. We were not even there when she died, as we did not make it in time. It is possibly the biggest regret I have.

I know this haunts my Mum even 16 years later. We are Chinese and the thought that she let my Nan die with nothing in her stomach and no water for 2 days is something that I think will always trouble her.

My Uncle experienced wonderful end of life care at a Marie Curie hospice. The difference was marked.

[RoseFlowerFairy]

Government guidelines, best practice etc, in most professions are not followed all the time, and there is always going to be gaps in people's training, basic human error etc.

I would not trust anyone with a relative of mine on that LCP or it's replacement.

[Perihelion]

I agree expat.

[thismousebites]

So glad this is being scrapped.
You would be prosecuted if you treated a dog this way.

[timidviper]

I agree that it is not the pathway that is wrong but the implementation of it and communicating properly with relatives.

Claig I am amused that you think we have a free press.

[edam]

The dehydration thing worries me. I understand that the idea behind the Liverpool Care Pathway was to provide better, more compassionate care to the dying - avoiding procedures that would be futile and cause pain. But withdrawing fluids... how on earth can that be compassionate? OK, I get that people at the end of life may not want to eat, and that trying to give them nutrition may not actually be helpful. But withdrawing fluids - I wish some of the doctors who drew it up would provide some evidence, if they have any, about what that feels like.

I imagine the answer might be 'we don't know, because when fluids are withdrawn the person dies'. But how can you risk doing something which might cause real torment just because you assume it's OK?

Surely before doing that, you need to watch someone who is dying, and look at their responses for signs of discomfort and pain. You can compare their responses to people who are experiencing discomfort and pain for other reasons. (There's an analogy here with the way pain is sometimes not noticed or dismissed in people with learning disabilities - behaviours that in anyone else would indicate pain are assumed to be to do with the disability, e.g. rocking back and forth. Which may well be for another cause, but you would suppose pain should be considered and investigated as a possible reason.)

[claig]

"Claig I am amused that you think we have a free press."

There are some attempts by some on the left to gag our free press, but papers like the Daily Mail will not go down without a fight. It's not over until the fat cat socialist sings for supper and their plans the Daily Mail may yet scupper! The 'pathway' has been scrapped, the progressives have been rapped and the people refuse to be trapped!

[JugglingFromHereToThere]

I was rather disappointed too claig that Newsnight did not feel able to pick up on this issue too, alongside their general discussion on care in the NHS (in light of current criticism of some NHS Trusts)

I would have thought the axing of the LCP yesterday could easily have been incorporated into that discussion, but from what I saw and heard that wasn't really attempted.
To me, end of life care is a massive issue for the NHS, and generally for our care and well-being in this country.

[claig]

'I was rather disappointed too claig that Newsnight did not feel able to pick up on this issue too, alongside their general discussion on care in the NHS (in light of current criticism of some NHS Trusts)'

Sadly, I was not surprised at all. The establishment, of which the BBC is a part, were in the main in favour of the pathway. That is why we never saw many reports about it or interviews with campaigners against it over the years when newspapers such as the Daily Mail and the Daily Telegraph were criticising it.

Channel 4 News made it the third item, and BBC Newsnight did not even discuss it last night. I think that shows what the establishment thinks about the issue.

The people care about it, and it won't go away, whatever the establishment think.

As Melanie Phillips warned us, the pressure still needs to exist to ensure that it doesn't just come back under another name, now that they have decided to scrap the word "pathway".

[claig]

The question that you posed in your OP is of vital importance

"Liverpool Care Pathway - to be replaced with what ?"

People will not accept the same or similar thing returning under another name, now that "pathway" will no longer be used.

Our free press will not be gagged and the pressure for good patient care will continue.