Liverpool Care Pathway - to be replaced with what ?

(59 Posts)

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 Mon 15-Jul-13 15:05:49

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 Mon 15-Jul-13 15:10:20

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

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

Thanks for interesting link drivin smile

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?

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 Germany Mon 15-Jul-13 18:28:11

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 Mon 15-Jul-13 19:24:57

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 Germany Mon 15-Jul-13 21:29:28

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 Germany Mon 15-Jul-13 21:51:08

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 Mon 15-Jul-13 22:08:06

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 Germany Mon 15-Jul-13 22:18:34

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 Germany Mon 15-Jul-13 22:32:35

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 Germany Mon 15-Jul-13 22:35:59

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 Mon 15-Jul-13 22:46:05

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

Zhx3 Mon 15-Jul-13 23:11:42

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 Mon 15-Jul-13 23:17:37

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 Mon 15-Jul-13 23:19:33

I agree expat.

thismousebites Mon 15-Jul-13 23:26:17

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

timidviper Mon 15-Jul-13 23:31:57

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 Mon 15-Jul-13 23:33:34

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 Germany Mon 15-Jul-13 23:39:21

"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!

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 Germany Tue 16-Jul-13 09:24:00

'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 Germany Tue 16-Jul-13 09:28:32

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.

claig Germany Tue 16-Jul-13 09:50:07

This will have restored faith in the system to millions of people. We all tend to think sometimes that nothing can be done, that things will continue to get worse. But we must congratulate Norman Lamb MP, the LibDems and the Coalition for listening to the complaints raised over years and doing something about it.

In large part, we owe this to the pressure placed on the establishment by our free press who campaigned tirelessly against it in the face of much abuse and criticism.

We have seen that many government quangos and commissions and NHS Trust leaders on stellar salaries have not been able to protect the people from poor treatment. It has been courageous people like Julie Bailey and the people involved with 'Cure the NHS' who have highlighted what has been happening in our hospitals. Julie Bailey has faced abuse from vested interests and her mother's grave has been desecrated, but it has not stopped her campaigning.

Our free press gave oxygen to the campaigners and we must hope that they will never be gagged to make discussion of 'pathways' the third item or even not an item at all on their pages.

norkmonster Tue 16-Jul-13 10:23:38

My father was placed on the pathway when he was dying in hospital. It meant that he did not have to be turned, did not have to have his blood pressure taken, did not have to have regular blood tests (he was kept on antibiotics for pneumonia as although they were not clearing the infection, they were not hurting him and possibly were stopping it getting any worse - normally blood tests are needed every day if on antibiotics) - all of these procedures were causing him real and significant anguish. He was unable to swallow, and was in a coma for a week but they continued with subcutaneous fluids until a day or so before he died when his very swollen arms began to split and leak fluid because his kidneys had shut down. That's why they stop the fluids. The nurses continued with regular mouth care (swabbing with wet sponges etc) up until the very end.
I asked for him to be put on the pathway when it was clear that he would not ever recover. The issue is not with the pathway - as with everything else, it is with the standard of care provided. It is with hospitals or care givers using it as an excuse to stop caring when the exact opposite should be the case. And, frankly, it's to do with scaremongering by newspapers who put the fear of god into people at the mere mention of the words Liverpool care pathway. It is not a pathway to make sure people die, properly implemented it is a guidance for care givers to ensure that people are comfortable, not in pain and not subject to invasive treatments that may prolong life by a few hours or days, but at what cost.
My heart sank when I heard that it was to be replaced. If I was dying, I would want the care that was provided to my dad when he was on the pathway and not some tick box medicine geared to prevent the family from complaining or suing afterwards. If it was implemented wrongly or i appropriately, deal with that. Don't throw the whole thing out.

Thanks for your post nork - I agree with your assessment of things and glad to hear your father received such good care.

Maybe the LCP has developed a bit of a bad reputation though due to being badly implemented at times, and as the report says sometimes used as an excuse for poor care.

So, as politicians love to do anyway, they want to bring something else in and give it a new name Let's hope that whatever is brought in in it's place is well resourced, and backed up with good training, to really bring about positive change in end of life care in all settings.

I'm finding you have a bit of a strong side agenda claig about the role of the media in bringing about this review of the LCP/ end of life care.

claig Germany Tue 16-Jul-13 11:01:15

'I'm finding you have a bit of a strong side agenda claig about the role of the media in bringing about this review of the LCP/ end of life care.'

You are right, because I think that without the Daily Mail's and the Daily Telegraph's campaigning, the Liverpool Care Pathway would still be in existence. I am glad it has been scrapped, and I think it is very important for us to understand what led to it being scrapped - and chief among that is our free press who refused to let it drop.

claig Germany Tue 16-Jul-13 11:06:14

I think the reason that BBC Newsnight didn't mention it at all last night is precisely because they never reported on the controversy over it much throughout its existence, unlike some of our newspapers. What is mentioned and what is omitted on news channels is significant.

I want full transparency and full discussion on all issues to do with treatment of sick and dying people in our hospitals and that is why I am so grateful that we still have a free press that is willing to challenge the establishment over what they and many people believe is wrong.

Fair enough claig, but I think you're probably more against the LCP than I am.

Like some other posters I feel the problem lies in the way it was implemented .... such things as poor training, under resourcing especially of personnel, lack of understanding of end of life care especially regarding issues around hydration of patients at end of life, lack of communication with families, and inflexibility and lack of awareness in respecting individual needs and wishes of patients.

claig Germany Tue 16-Jul-13 11:29:14

'Fair enough claig, but I think you're probably more against the LCP than I am.'

You are right. I worry about what lies behind it. I worry that there was a lack of communication with relatives - why? why keep it secret?
I am shocked about the dehydration, like you.

I was one of the millions who had almost given up hope that we would get change when our major TV news channels did not make a big issue of it. I know that the only reason we have been able to have it scrapped is because of some of our newspapers did not give up and were not silent.

The relatives wrote to newspapers. If they had just complained to MPs at MPs' surgeries and MPs had just mentioned it in the House, do you really think we would have got to the stage where it has now been scrapped?

Articles in our national newspapers, while our other media retained their silence, is what has led to it being scrapped.

I was against it, I am against it and I am grateful that it has now been scrapped.

norkmonster Tue 16-Jul-13 14:00:26

Do you know what the actual Liverpool care pathway is? Because it seems that most of the hysteria generated by the press (I refuse to describe it as "free" when it so
obviously is anything but) has little to do with what that pathway actually is rather than what some relatives / members of the press for their own ressons have interpreted it as being.

Yes, I think there's a lot of truth in that nork

I think there's a very understandable element of people not accepting death as the final chapter in the lives of their loved ones.

Perhaps we shouldn't all be quite so shocked and up in arms that people die in hospital too (as in current news regarding the 14 Trusts criticised in other recent report)

We will all die one day, but obviously how and when that happens should be as good as it can be, for us and our families.

edam Tue 16-Jul-13 18:18:04

The issue with death rates is that 11 trusts have far more people dying than comparable trusts. Their death rates are way out of line. So it's entirely possible patients were dying when they would have lived were they treated at different hospitals. (In fact this is clearly the case - babies like Joshua Titcombe, for instance, who died because although his mother had an infection, midwives refused point blank to investigate whether he had an infection too. He died from lack of antibiotics. This should never have happened.)

That's a separate issue from the Liverpool care pathway, although linked because one of the key factors in both is staffing. If you only have one nurse responsible for 24 vulnerable elderly patients, it is inevitable that the standard of care will suffer. That nurse only has one pair of hands.

The chief executives of NHS trusts must start to be responsible for the quality of care - not merely blame staff for lacking compassion. Doesn't matter how compassionate you are, one nurse can't care adequately for 24 inpatients.

Over the past 20 years, trust chief executives have been performance managed on how well they do whatever the health secretary tells them to do, and whether they balance the books. Not on quality of care. Failing to employ enough nurses so patient care suffers has actually been A Good Thing for the career trajectory of NHS suits.

Perihelion Tue 16-Jul-13 19:41:19

LCP is best practice if followed correctly. It's the best we have for end of life care, since post Harold Shipman, the regulation and form filling for diamorphine almost rules out helping someone dying that way. Good to stop the likes of Shipman, but means that death is a drawn out affair. Are people who are so horrified of the though of dehydration, even when fluid can be detrimental, calling for assisted suicide ( also, obviously open to abuse ) or what exactly? Do you want fluids administered, so that relatives feel that everything was done? So they didn't give up the fight?
IMO, what's needed, but won't happen is much greater funding for palliative and end of life care. More hospice places where patients are properly cared for and where relatives can stay at the beside of the dying person 24/7.

frumpet Tue 16-Jul-13 20:56:41

I think one of the main problems with the LCP is that although it follows the practice in hospices and by pallative care nurses , it is used in situations where a person may have suffered an acute medical event . In other words families are not in a posistion to come to terms with their relatives end of life prognosis .
I personally have nursed before and after the introduction of the LCP , i believe end of life care has improved as a result of the LCP .
Does it need review ? yes of course ,everything we do in the NHS needs reviewing periodically , we need to look at what works and what can be improved and how .
However i would be devastated if it is simply removed and nothing is put in its place to fill the void , i still shudder when i think of some of the poor bastards who had the misfortune to die pre LCP and the suffering they experienced sad

frumpet Tue 16-Jul-13 21:10:28

End of life care should always be individualised , the LCP is a tool that is supposed to prompt health care professionals to give high quality care when someone is at the end of their lives .

busyboysmum Tue 16-Jul-13 21:24:28

My dad has just died in this manner, he got to the point where he could no longer swallow so they put him on this pathway. His death was peaceful and serene, he was not in any pain, it took away my fear of dying seeing his death so calm. I think giving him fluids would just have dragged things out for no reason.

Some time ago I spent an afternoon in hospital with an elderly friend, we talked quite a bit about our favourite poems, and I offered him some sips of water, but he only took a little. He passed away later that evening.
I hope it will be similar for me when my time comes.

I'm a little concerned to hear that post Harold Shipman it has become harder to administer morphine to the dying. I think I might rather like plenty if I'm in any pain ! I'd be interested to read other views on the current situation/approach.

BusyBoys - Am glad to read that your Father's passing was peaceful, though also sorry for your loss thanks

My father died this way. It was awful. It took literally weeks and the dehydration was terrible. I didn't understand what was happening at the time but I do now. It is so wrong and cruel.

busyboysmum Tue 16-Jul-13 21:59:09

I think maybe they administered something to speed things up, I was expecting it to take a long traumatic time but it was a matter of days although he hadn't been eating for months so was very weak. I would like a similar death personally having experienced this.

frumpet Tue 16-Jul-13 22:11:14

Nobody should be on the pathway for weeks , its is supposed to be for the final 48-72 hours , in other words end of life .

Dehydration is a difficult issue for so many reasons . If someone has hours/days to live do you really want to try getting IV access ? do you want to give a drink to someone who's swallow is so compromised that all you are doing is effectively drowning them slowly by giving them that drink ? On the other hand if that person is lucid enough to ask for a drink at end of life , what right do you have to deny them ?

As stated above the pathway is supposed to be for end of life , past the 72hr point there should be a full consultant review ( this is stated on the pathway ) .

frumpet Tue 16-Jul-13 22:15:46

I would ask anyone on here who feels the pathway itself is bad to have a look at it , it isn't a secret document , it is easily available to see on the internet.

Perihelion Tue 16-Jul-13 22:16:21

Post Shipman, you still get diamorphine/ketamine/ anasthetic etc, but there is more care I believe that the amount given is for pain, rather than to speed death. Watched my gran die in 1991. Near the end her pain meds were increased massively on the unspoken understanding that it would kill her. Last year when caring for a friend with cancer, I was amazed at the form filling and paper work involved for district nurses and hospice staff for the administration of these drugs.
If I had a choice I'd prefer a speedy death with assisted suicide, rather than LCP. Having seen people with terminal agitation I'd not want to put realatives through that. Although maybe witnessing this is partly what gives some relatives hope for a different outcome.

norkmonster Tue 16-Jul-13 22:27:01

My dad was very agitated. It was unspeakably hard as I didn't know if he was in pain or if he was trying to communicate with us, so so hard to work out whether he needed the extra drugs or if we were preventing him from trying to talk to us, even though I knew that he could not talk. It felt almost as if we were shutting him up with extra drugs to stop our suffering. But do you know what, no matter how awful those last days were, I know for an absolute certainty they would have been so much worse had he been subjected to non-lcp care. Every time he was touched he howled like a wounded animal. The only thing I wished was for him to die quicker. And that's a horrible thing to hope for your parent, or for anyone. I am so totally against the prolonging of life for the benefit of the relatives which, frankly, a lot of the anti-lcp furore feels like it is.

frumpet Tue 16-Jul-13 22:29:29

Can i just reiterate yet again that the LCP should mirror the care given in Hospices and by pallative care nurse's in the community .

frumpet Tue 16-Jul-13 22:31:09

Oh and please please look the document up on the internet , it is there for all to see .

I think a lot of the problem with reaction to the LCP is that we (the public in general) don't know what dying is. We see Gone with the Wind or pretty much any film actually where people are coherent and pain free and still and that is our expectation of death. In fact the dying body can be pretty dreadful and confusion and pain are commonplace. Everybody deserves a good death and the LCP has delivered that for many, many people. I've never yet come across anybody with an experienced understanding of palliative care who doesn't appreciate it. I fear dying people will suffer more not less because of this review but I am certain that my loved ones will not. I know what to ask for and when the time comes I will let them go.

norkmonster Tue 16-Jul-13 22:52:52

Agree completely. We how that dying is all clean white sheets and a last few fluttering breaths when the reality can be anything but. People get angry and frightened when their lived ones die, and sometimes that anger is turned against the care givers, occasionally with justification but I would imagine many times without. All this media hype has done is potentially remove the ability of nurses and doctors to use the lcp appropriately and to prolong death for the dying and the living.

"I am so totally against the prolonging of life for the benefit of the relatives which, quite frankly, a lot of the anti-lcp furore feels like it is."

Yes, I think there's some of that going on certainly nork

mybabywakesupsinging Thu 18-Jul-13 01:08:54

The Marie Curie review of the LCP made it clear that the LCP was only as good as the people using it. It also pointed out that the LCP has never precluded the use of artificial hydration, and that any kind of blanket policy on hydration would be ethically indefensible.
The main problems (I think) seem to have been around the diagnosis of dying (which can be hard), leading to people who were not actively dying being placed on the LCP inappropriately.
If done properly there were a lot of very worthwhile "checks" in the LCP which were meant to prompt symptom-relieving actions and other aspects of holistic care such as enquiring about spiritual needs etc.
It clearly has not always been done properly. I'm not sure that's always a problem with the pathway itself - if misapplied and mis-used the outcome won't be good.
A lot of it comes down to caring - if you don't care about the dying then their experience will be bad, pathway or no pathway.

jammiedodger79 Thu 18-Jul-13 08:38:54

I am a nurse and have used the LCP appropriatly many times and in my experience it has been a useful guide in ensuring a comfortable dignified death. The thing people don't understand is that at the very end, people's bodies shut down to the point where they are unable to absorb any fluids and the fluids forced on them just overloads the body which is crueler than not giving it at all. If a patient asked for fluids i would never deny them but by the time we have started using the LCP they are usually unconscious and naturally very close to dying in which case extra fluids would make no difference to prolonging life. I believe the complaints are a mixture of the pathway being wrongly used, in which case more training is needed and misunderstood by patients and relatives. The pathway is supposed to be used as a guide, patients can come off it if their condition changes and individual needs should be met.

ipadquietly Thu 18-Jul-13 23:26:06

My dad died a couple of weeks ago, and had been on the pathway for a number of months. He and my mum were kept fully informed of procedures throughout, and my mum had a dosage of controlled morphine in the cupboard for administration by a nurse. when pain became unbearable.

After he was literally written off by the hospital ('there's no point in us seeing you any more'), my dad's care was managed by the local hospice, district nurses, dieticians and respiratory nurses. The people involved pulled my parents out of the depths of despondency. All agencies communicated about my dad's needs, to give a personalised and caring service. In his last days, dad had a searing pain and requested morphine (he was always allowed to be in control). On the morphine, he was calm, and never regained consciousness. His mouth was moistened by the nurses, and he was made comfortable. A Marie Curie nurse attended on his final night, which provided professional support and reassurance for my mum.

I have utmost respect for what this army of people did for my dad. However, I do wonder whether such care would have been possible in hospital. (At home, my mum was participating in the care, which she wouldn't have been doing in hospital, therefore carrying some of the burden).

I also wonder how much the total bill for care would have been, as so much was done. Could the demise of the LCP be a cost cutting exercise?

I'm sorry for your loss ipad

Thanks for sharing your experiences - it's interesting and good to see that some people and families experienced excellent care within the LCP - perhaps most often in hospices though.

NameThatTuna Fri 19-Jul-13 15:48:48

I have utmost respect for what this army of people did for my dad. However, I do wonder whether such care would have been possible in hospital. (At home, my mum was participating in the care, which she wouldn't have been doing in hospital, therefore carrying some of the burden).

Interesting point ipad.

There are a number of reasons why it can go wrong in a hospital. Every member of staff on my ward has had end of life training, even the HCA's (we are a medical care of the elderly ward). Palliative care are involved, consultants and junior doctors, etc.

I can give some examples.

We have 3 areas on our ward; male, female and acute. We have 6 side rooms for the more acutely unwell patients or infectious patients. Whenever possible, we would move an acutely ill patient to one of these rooms to be able to provide round the clock care. The staff to patient ratio within that area is greater, although it is still only one staff nurse/one HCA to 6 patients. In the other areas there is one staff nurse/one HCA to 12 patients.

As you can imagine, this being a care of the elderly ward, we have to wash, dress, toilet, feed and comfort 30 patients between 6 of us. Thats without administering any medication (some drugs, like morphine, will require 2 staff nurses to administer) write up notes, attend various meetings (can be one or two a day) chase up referrals, xrays etc.. The list is endless.

We have the highest number of dementia patients on our ward as they are defined as care of the elderly, although none of us are trained in mental health. We have a dementia study day once every 2 years. Most of our patients are very high risk of falls, confused, wander, shout and/or physically aggressive.

These 6 side rooms are usually taken up by our dementia patients that are a danger to themselves or other patients (we've had patients hitting other patients for example) or by a patient who has an infection.
Sadly, we can't always move the unwell patient to a side room, because of safety reasons or infection control reasons. The unwell patient has to remain on an open ward, with a staff nurse/HCA already pushed for time. With all the best intentions in the world, we cannot provide the kind of care that is needed.
Even in the acute area, if we have the rooms occupied by aggressive, wandering patients, we cannot provide the care the ill patient needs.nity

We do encourage relatives to come as much as possible, we have a dedicated family room so relatives can stay overnight to get some space/sleep. However, if the patient has to remain on an open ward, we are not allowed to let them stay unless that patient is likely to pass within 24 hours. This is for the dignity and privacy of the other patients.

As for the other issues pointed out by other posters i.e stopping fluids, there are medical reason why fluids are stopped. This should always be explained to relatives though. Mouth care is a massive part of end of life care.

Sorry this has become so long winded blush

Perihelion Fri 19-Jul-13 21:00:44

What I found in the hospice was that the staff not only cared for my friend, but they also cared for visitors and relatives. They made a bed up for me, so I could sleep next to my friend, brought me tea and toast. Caught me on the way back from the toilet, to invite me into the nurses office to have some cake and check I was okay. The staffing levels were such that during the night when they thought my friend might die, a nurse/HCA ( not sure which ) sat outside the doorway of the room, to be there if needed.......
What a different experience to being on an elderly ward like Tuna's.
Tuna I'm so sorry that you don't have the staff and facilities to provide the needed care.....and that nurses are often made the scapegoats.
So LCP scrapped in England.....political move that doesn't seem to help anyone seriously or terminally ill. And no alternative given by those so againt it.

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