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BBC Newsnight discusses the Liverpool Care Pathway. And I cry.

27 November 2012

Tonight the BBC's Newsnight has a discussion on the Liverpool Care Pathway. The Liverpool Care Pathway is highly criticized by shitty news papers such as the Daily Mail who have no clue what they are talking about and yet still feel they have a right to send wrong and dangerous information in to the world that is untrue and misrepresents the fact. The Jobbing Doctor describes quite accurately how I feel about the Daily Rag and their 'journalism' in relation to the Liverpool Care Pathway: "The Daily Mail, in its own unique way, is a bilious hate-filled rag full of sensationalism and bias. Similar to the Sun, but for those with GCSEs, with slightly fewer pictures." But I digress.

The Liverpool Care pathway is a protocol that helps medical staff when patients are actively dying. It provides space for all active treatment to be revoked and focus ONLY of patient comfort and symptom control. This may (notice: MAY) include withdrawing artificial hydration. it does NOT say people should not be given drinks if they can still swallow. Nor does it say people should be dehydrated to death.

The main problem is not the Liverpool Care Pathway itself but the implementation of it. So communication is vital. But also, people are not supposed to be on the Liverpool Care pathway for weeks. So normally you will not be on it for weeks. But mostly just for days or even hours sometimes. It is for people who are ACTIVELY dying. Not just terminally ill. But when the body is physically shutting up shop. So if you don't give someone food and drink for days or weeks, it is not a good thing. But if they only have hours or a couple of days left, then it is not their main cause of death. It should be reviewed every few hours......

We could argue Jane was on it too long. She took about 12 days to die once in the hospice. By the time she went in to the hospice, she already was dehydrated for about 5 days due to no longer being able to swallow. So yes, Jane died of dehydration whilst on the Liverpool Care Pathway. In her case, the Liverpool Care Pathway hastened her death. And maybe she could have been given IV fluids. Maybe the Liverpool Care Pathway was not applied appropriately in her case. Because the fact that she took so long to die proves her body was not yet actively dying from the brain tumour. So the lack of fluids killed her. In a way, you could say she died because of the Liverpool Care Pathway. Which was wrong. I did not know this at the time and I had the impression Jane was pain-free.

But this may sound callous and harsh, she was going to die soon. I could have prolonged her life for weeks by giving her fluids and food through a tube. She would have slipped in to a coma eventually. But that might not have been for weeks. Or months. And she might have been able to communicate with me during that time. But most likely she would not have been able to make much sense of the world, hydrated or not. So we would have had a few more weeks but there is no way to measure what kind of quality of life that would have been for a young woman, fully incontinent, bed-bound, unable to understand the world around here or hold conversations of any kind.

I still think about it. Did I do the right thing? Probably not. I should probably have fought harder for getting her hydration sooner. The thing that is upsetting me more and more is the idea that I did not talk to Jane about it enough. I very quickly assumed the role of carer and probably very soon took over the decision making. I perhaps took away her right to decide too soon and did not put enough effort in trying to find out if she was still able to have thoughts about it.

But it was the way it was. She lasted longer than the doctors anticipated once she came to the hospice. And the problem with dehydration is that you can not, after a week of absolutely no fluids, suddenly decide to give loads of fluids again and say: oh, maybe this patient is not actually dying just yet, let's re-commence fluids. By then, someone may already be in organ failure so you are kind of on a path of no return.

No point in revisiting things. It wasn't as if she died unnecessarily from a curable disease. I think the best I can say is that she died earlier than she should have due to implementation of the Liverpool Care Pathway. However, the Pathway protocol itself ensured that her death was painless.

But then again, that is what thought then, and still think now, when I knew nothing about these things. The more I learn at university, the more angry I get. I did not know better. But doctors back then did, and did they do the right thing? Did I ask them enough questions?

I am afraid that learning more at university will make me re-visit and re-think the whole thing. And I am so scared that because of knowing more, I will have some belated trauma about Jane's death. I don't want that. I have accepted it and, mostly the way it went. If gaining knowledge about it means I am going to doubt every decision that was made back then, I prefer to remain ignorant.

PS: For those who are really interested in what the LCP *really* says, you can read the entire LCP document guidelines here. You will see that there is nothing wrong with the pathway itself and that the problems are its implementation.

40 comments:

Anonymous said...

I'm sure you did just the right thing for Jane . as a Pall Care dr we often do not give fluids on the LCP as it can make things worse.... the body has a way of not translating dehydration into thirst and adding fluids can often make a bad situation worse... as you quite rightly point out, the LCP , onits own is not a bad thing, it is when it is used badly that it harms. it is there to help drs and nurses look after pepole who are already dying from their disease... it does not cause death itself. thanks for the blog...and good luck with the training!

Anonymous said...

I had a very upsetting experience when visiting my supposedly very, very sick aunt at Derriford Hospital Plymouth.Her son's wife told me wasn't eating or drinking and would die soon. I can only assume they were told this by the Hospital Staff. I was very close to my Aunt so I thought I'd take her a raspberry mivi icecream.She grabbed it with both hands and ate it like someone demented, at which point a nurse came in and told me off saying you're not helping things, so obviously she was being starved to death when in fact she could eat perfectly well. I feel so guilty I didn't fight for her right to live,but I was misguidedly bowing to their better judgement,this was a waste of a life ,a life of woman who was a real fighter and I am absolutely sure she would have lived to fight again. This is not a pathway,this is cruel and unkind. Euthanasia is too good a word for it.

Dutchcloggie said...

I am sorry your experience was bad. Once again though, I must stress this is anissue with implementation of the LCP, not the LCP itself. The LCP very clearly states the oral food and drinks will continue to be supported as long as the patient can tolerate it. It even says that withdrawing artificial food & hydration is not a must and that it depends on the patient.

So education is the key, for staff, patiens and relatives. It makes me angry that people think the LCP is a way to kill people. It is not. It is a way t help those who are in the last days/hours of their lives to not be hassled with blood pressure, temperature, medication that won't help anymore etc.

We don't demand cars are banned because peole kill other people when using the car. No, we ask for people to be educated on how to use the car so that it is beneficial to everyone. The same applies to the LCP: if used correctly by those who are trained in end of life care, the LCP is a great tool that will make death much more peaceful.

Anonymous said...

My mum passed away 3 weeks ago from cancer. She was put on the LCP 2 days before she died, and we wouldnt have had it any other way.The standard of palliative care was excellent,and she was kept pain free, and died very peacefully. It would be something i would want to use in my end days.

Anonymous said...

A moving and honest Blog. The LCP has become such an emotive issue and the scaremongering in the press is shameful; I really wish unbiased, informed and considered views like yours could be represented in the mainstream media; views that portray the benefits but also acknowledge that, sometimes, there are failings - not with the process itself, but with its implementation. It sounds like Jane had a dignified and peaceful death, which is the best we can wish for our loved ones when their time comes.

Anonymous said...

to dutchcloggie you are talking a load of shit yourself it was not the daily mail speaking directly it was professors and doctors whistleblowing the truth of this murderous care with dignity my hat pathway, why do you think they are having meetings ministers and doctors i will tell you why because they realise it is mass murder nothing else everone knows unless they have a pea for a brain wake up cloggy and do a clogg dance.

Anonymous said...

dutchcloggie, talks a load of double dutch and speaks with a forked tongue.

Anonymous said...

to anonymouse, you are so right with what you say about this pathway when you are getting relatives taking them off this barbarick starvation and poisoned implementation, how could they have been dying when they are still living when taken of it, there is a lot to be said about how they get loads of cash to put patients on it this was found out with the freedom of information act, it should be abandon now and stop these wrongfull killings.

Dutchcloggie said...

It is a shame you did not feel the need to tell us your name. I wonder if you have any personal experience with the LCP or if you have just read the papers with stories from people who were not informed by their doctors (something I am strongly against. Communication is key at the end of life). You might benefit from reading the actual LCP documentation. This will give you an insight to what the LCP ACTUALLY is supposed to be. WHen something is not applied correctly, we need to train those using the LCP, not abolish the LCP.

Further more, I don't think there is any reason to make personal insults to people who do not agree with you. I feel perfectly able to make up my own mind about how I feel about the LCP. My partner died on the LCP and although it was not followed the way it should have been, I still support what the LCP is trying to achieve. In my work, I treat people who are on the LCP every day.

I realise there is no point in trying to explain something to someone who is not willing to listen to the actual facts. You are entitled to your opinion, I am entitled to mine. Mine is based on my own experience with the LCP. I don't think there is a need for name calling over differences of opinion.

Anonymous said...

why is dutchcloggie your real name and i have had personal experience with seeing not one but two relatives sent out of this world before god said it was time to go, and the proof being with the qualified professors and doctors writing to the daily newspapers telling them it was the back door killing of patients, also you state if it is done correctly its okay do they let anyone implement this evil against the ten commandments, which is thou shalt not kill.

Dutchcloggie said...

I am not going in to a discussion about God as I don't think God exists. However, it seems strange to me that doing everything we can to keep someone alive, including artificial feeding, ventilator assistance, heavy drugs with terrible side effects and aggressive CPR is seen as "letting God decide" but letting nature run its course by not intervening, by not giving unhelpful drugs, by not feeding someone through a tube and by not inserting a breathing tube, that is seen as making decisions for God ... Seems to me that if your argument is supposed to make any sense, when God wants someone to die, doctors should not get involved at all and let nature (i.e. God) have its way.

Anonymous said...

yes we can see now are you doctor god if he does not exist if he does when you go on bupa and not put on the money making back door killer, its funny you should mention that it was said to me let nature take its course, i said you cant do that its against the law its euthanasia, if he does exist when you die you have problems yes save a life thats what you get paid for give them a transfusion thats not against my god but dont starve them to death because your saving £200.oo a day shame on you. john.

Anonymous said...

to dr or nurse dutchcloggie, if your a non christian the ten commandments will not bother you if you break them all, let nature take its course its less work for you, by the way you dont work for nothing or do you is it a case of you like an easy life finish them off quicker its a sad once great britain, i thought the hitler era was finished, i am a pensioner by the way with no name to be on the safe side, its dangerous going in hospital over 65yrs?.

Dutchcloggie said...

FYI: Factually incorrect comments are also removed. I am sick of lies about the LCP and I am not helping to spread them. Just so everyone knows.

Anonymous said...
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Anonymous said...
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Anonymous said...

So instead of refuting the factually incorrect information you just remove it. It must be nice up there on your high horse. I do not believe in any form of after life but sometimes I hope I am wrong as there would definitely be a special place in Hell for people like you.

Dutchcloggie said...

I like that you admit your ramblings are factually incorrect.

There is plenty of information out there on the LCP. Many times have I referred you to actually READING the LCP documentation. If you can not be bothered to actually do that, then why should I bother arguing with you? And argument means that both sides are open to what the other side has to say.

If you read that, you will see that the LCP is not at fault for any of the things you have issues with. If anyone is at fault, it is the individual doctors and nurses that use the LCP wrongly. I agree that many people do not fully understand the LCP. It was designed to be used first and foremost in a hospice, not a hospital. Even so, the pathway is not at fault. Doctors and nurses need training in using it. And relatives and patients need to WANT to understand what the LCP does and does not do. If you are not prepared to inform yourself about the documentation, why should I bother defending it? I am not defending those who apply the pathway wrongly. I am not defending those who do not talk to relatives or patients.

However, I AM defending the pathway itself. Without it, people would be forced to have treatment until the moment they die. And that is just torture.

If you bother to read the document and separate the document from those who apply it, then come back and we will have an honest discussion about it.

What you are trying to do is to get all cars banned just because some people are rubbish at driving. A tool is only as good as those who use it. We should train people to use the tools correctly. Not throw away a perfectly good tool

Anonymous said...

The LCP is being used by NHS trusts without being able to prove that the patient is in the final hours of life and is effectively starving patients to death. They aren't consulting with relatives or reviewing their decision. The LCP may well work for terminally ill cancer patients but it is being abused by certain doctors in the NHS to deal with elderly people. This maybe linked to financial incentives but if is the case poses an ethical conflict ehich should result in those doctors being struck off. I have examples.

Dutchcloggie said...

you can only prove in one way that a patient is in their final hours: they die. So you can not prove conclusively BEFORE death that a patient was in their final hour. You can however use your experience and clinical knowledge to make a judgement on it. People expect doctors and nurses to have the answers to everything. How ridiculous is that.

The financial incentives have been utterly misinterpreted. Since the government agrees that applying the LCP correctly is Best Practice (because it is the best guarantee of good care before death!), they want to encourage more hospitals to use the LCP. This is to ensure that more people can have a good death. It is not an incentive to kill people off quicker and the suggestion that this is the case is ridiculous.

When used in a hospice, the LCP is a great tool that helps people have a death that is free from invasive procedures, investigations and medications. Hospitals are not geared up for this and so perhaps the LCP needs to be reviewed and adjusted for use in hospitals. Perhaps only those doctors who specialise in end of Life should be allowed to commence a patient on the LCP.

But discarding the LCP as a guide to End of Life care will lead to a return of doing whatever the individual doctor thinks might be the best thing for the patient. Is that what you want?

Anonymous said...

hello dutchcloggie, you say your friend and you accepted the lcp but before going on this wicked lcp she was helped for weeks but my wife only the second time in hospital in her life, was not helped put straight on the lcp even though she was eating and drinking herself,she was dead in two days from starvation and morphine driven killer drugs, in the independent enquiry thats taking place lets hope it gets abolished, and then they will treated not executed.lets have some commonsense.

BunnyFactor10 said...

You don't die of starvation in 2 days if you were previously eating & drinking normally. Humans can do without food for up to 40 days and without water for up to 2 weeks in some cases. Furthermore, it is completely possible for someone to stop eating and drinking from one day to the next.

Anonymous said...

to bunny factor, you are not only starved but poisoned to the hilt with coma induced drugs coupled together it will kill a pig, but i would not be so cruel to poison and dehydrate a pig. dr shipman started it all off he made sure they died with the morphine its immoral and disgusting. it will be abolished.

BunnyFactor10 said...

*sigh* This is the downside of the internet. People with absolutely no understanding of science and medicine, and without the will to actually look things up, can just spout abject nonsense. Oh well. Never mind. I feel sorry for you that you have such bitter memories about the death of your other half. I am perfectly at peace with the death of mine. I wish you peace and wisdom.

Anonymous said...

sign? this internet is the best thing since sliced bread, this liverpool slaughter pathway would be top secret this internet is a way of telling the british citizens how wrong this T4 hitler likeness it is, and by the way bugs bunny i dont feel sorry for you the bitter memories must be on you for alowing your cruel science and poison not medicine you dont give that on the lcp,i dont wish you peace and wisdom when you die i hope you rot in hellfire.

BunnyFactor10 said...

LOL.

Anonymous said...

to bunnyFactor, please get your facts right would you say lord carlisle a noble peer and barrister has no understanding of science, also professor pullicino professor of neuroscience, dr rita paul specialist nurse,dr p howard chairman ethical committee,dr hardie medical association,dr a cole medical ethics, dr m knowles first do no harm,miss t lynch opposed to euthanasia,dr r baltifour president of respect to human life, i could fill a bible, who say it should be abolished that is fact not fiction. so wake up bunny.

White Wolf said...

Bunny factor10, when you are looking at a weakened elderly person, who may be malnourished and potentially already dehydrated, with other potential complications then two to three days without food or water could kill them, so please do not tell me you do this as a matter of course.

As for science and medicine, there is nothing remotely scientific or medicinal about the LCP it is based purely on subjective hypothesis, the finger points, all nod in agreement, the person dies!

Sometimes not over a period of a few hours, but over a period of days, or some cases even weeks and not just terminally ill patients either!

BunnyFactor10 said...

LOL

White Wolf said...

There is be no doubt or question that the LCP has been used to kill people prematurely, either it amounts to euthanasia, or to murder, but it is and has happened.

What I would really like to know is exactly what the full extent of what the abuse which has taken place is, in whatever manner that abuse has taken place, the use of the LCP has led to premature loss of life.

That is a fact and that is the truth.

BunnyFactor10 said...

White Wolf, I think your point is fair to a certain extend, apart from the phrasing. I refuse to believe the LCP has been deliberately used to kill people off. I do accept that it has probably been used by people who are not sufficiently informed or trained to make the decisions. And yes, this means at times that lives have ended prematurely. And this needs to be addressed.

People however demand exact science about death. They demand that doctors and nurses know exactly when someone is going to die. You can not know this and people should not expect this. Sometimes people hang on to someone out of emotional distress when it might be better for that person to pass away in relative peace, instead of being put through CPR or excruciating drugs regimes.

I do not think the debate is helped in any way shape of form by people such as Anonymous who are not hindered by knowledge and a sense of reality. I hope the review will shine light on the things the LCP does well and on the things that need to be improved. Surely you do not want to go back to the days when we just kept treating people and treating people and treating people just because the doctors were not willing to say: There is nothing left I can do. That, in my mind, is also abuse.

Anonymous said...
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Anonymous said...

its obvious bunny factorio you are running the show and you obliterate messages that you know are the truth and for you to follow up with just the word[ LOL ]you are showing you are iliterate bunny factorio, lets see you print this wise guy.

Anonymous said...

Hello, I don't want to argue or any abuse.
My grandma was put on the LCP Friday (3 days ago) she hasn't had any food or drink since then its now Monday. She is 96 and has dementia and has had a water infection that wont clear up for the last 2 plus weeks. I hate to think she is dying through thirst and is aware of this... how long will it take her to die?

Anonymous said...

hi my friend sorry to hear about your nan, although she is 96yrs she can still be helped you must get involved insist that she gets antibioticsand plenty drink not the liverpool pathway there is only one outcome when they put them on that and thats death. be firm and speak for her she cannot good luck and god bless her.

BunnyFactor10 said...

You are right Anonymous Number 2, the LCP has only one outcome: Death. That is the whole point of the pathway. People go on the LCP when they are on their way to death and the LCP helps to achieve this in a peaceful way, rather than giving people invasive treatments that will not save their lives anyway. Think of a diabetic with cancer who has only days to live. Do they really need to be injected with insulin 3 times a day when they have only got days to live?

Anyway, Anonymous Number 1, I am sorry your nan is ill. I can of course not say anything about her condition or tell you that she should be 'saved'. It is important to know the LCP does NOT stop people from eating and drinking if they can tolerate it. However, people with dementia often have trouble swallowing and forcing drinks in to someone who can not swallow can lead to pneumonia or even fluid in the lungs and choking. This can be hard to accept but one has to consider what is worse. And obviously I can not tell you this.

t is over a week ago now since you posted your comment and I don't know what your situation is but rest assured: The LCP's main aim is for a peaceful death without pain and distress. Your nan will not be aware of her lack of fluid and food intake. She is not being starved to death by withholding food or fluids. It just means that they will not force fluids and food in to her (through feeding tubes etc) if her body is not able to naturally take them.

I wish you strength.

Anonymous said...

My mother died april 2013 she had a stroke on monday night had a scan on tuesday had no intervention and she died on the sunday night i see that putting in tubes etc could cause distress and the outcome will still be the same but the impact on the family is awful. I have many thoughts since WAS THIS RIGHT?

BunnyFactor10 said...

Obviously I don't know the details of what damage the stroke did to your mother. If it destroyed her ability to swallow (so eating and drinking was not possible), then there is very little that can be done. The problem with starting fluid drips and artificial feeding tubes is that there will then come a time where you will have to decide to stop these. Or not, which would mean she would be kept alive artificially for....what...forever? Making a choice to end food & drink is much harder than the choice to let nature take its course and not start them, if you see what I mean.

The impact of being told your loved one will die soon is always terrible. My wife was on the LCP. The idea that she was not eating, that there really was nothing I could do to get food in to her, that was horrible. But I knew that giving her fluids on a drip would just mean she would spend more time dying from her painful brain tumour. Your mother did not starve or dehydrate to death. You do not die of that within a few days. The not eating & drinking is merely a side-part to the dying process. But it is the hardest one for many people to deal with. Because we all think :If only she would eat/drink, she would feel a bit better. Sadly, sometimes this just makes things worse. And sometimes people drown in the fluids they can not longer swallow. Which is a horrible way to die.

Anonymous said...

the liverpool pathway has been scrapped and not before time.lol.

Anonymous said...

at last its been abolished I said there was a god and it proves it .

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