Liverpool care pathway

(535 Posts)
stella1w Thu 31-Jan-13 19:05:59

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?

KatyTheCleaningLady Thu 31-Jan-13 19:23:10

Is dementia her only affliction?

Is there another condition that means the digestive system cannot handle any fluids?

Is she lucid or aware of anything?

NickNacks Thu 31-Jan-13 19:27:13

From what I understand of the LCP the family don't have to give consent but this GP's actions seem a bit OTT.

stella1w Thu 31-Jan-13 19:27:42

I don,t know the full detaild of her medical condition. Daughter says her carers were finding it difficult to eat but that she would eat when her daughter encouraged her. She is still mobile and gets agitated without sedatives which gp has just banned.

therugratref Thu 31-Jan-13 19:29:18

In a hospital environment we generally don't put people on the LCP unless they are expected to die within the next 72 hours. The LCP does not deny people water or food if they are capable of eating and drinking. If she is concerned that the GP is euthanising her mother then she should get her into hospital where she can be fully assessed as to the appropriate level of support or palliation.

KurriKurri Thu 31-Jan-13 19:31:46

Obviously I don't know the details, but the Minister in charge of such things(health minister maybe) was on the TV last week saying that if patients were able to take food and drink then they should definitely not be prevented from having it, LCP or no LCP.

If this lady's only problem is her dementia and she can take nourishment then your friend must be extremely distress by the course of action the GP is insisting on.

I don't really have any knowledge, but maybe she could urgently contact her MP, or the health authority perhaps? - hopefully someone who knows more will be along shortly.

My Dad died of advanced alzheimers a year ago, he had a stroke and had trouble swallowing for the last 3 weeks of his life, we had a 'no medical intervention' agreement, but he was certainly not denied water or food and was able to enjoy things like jelly, yogurts etc up to the day he died.

I am so sorry for your friend, - this is a horrible thing to be happening to her family sad

Piecesofmyheart Thu 31-Jan-13 19:39:47

It is absolutely impossible for ANYONE on this forum to comment - we have no idea of what this ladies physical state is - she could be in renal failure, have end stage cardiac failure -there could be a dozens of reasons why she is deemed to be appropriate for end of life care.

And despite all the hysteria peddalled by the daily wail, the LCP does NOT advocate witholding food and fluids. Instead it recognises that in the last stages of life, a patient may be unable to take food and fluids - at which point it would be unsafe to continue administering them. Akin to pouring a bowl of soup into somebodies lungs with the net effect of drowning them. The daily shite actually published a 'retraction' of their wildly misleading crap last week - albeit tagged on to the end of a made up piece of crap about the LCP.

Your friend needs to seek a second opinion. She should call the out of hours GP cover now. If her mum is NOT at the end of life, she needs to be in hospital.

Itchywoolyjumper Thu 31-Jan-13 19:40:38

This doesn't sound right at all. The LCP is meant to ensure the last days of someone's life are as comfortable as possible. I've not seen it used very often but when I have it seems to consist almost entirely of sips of fluids and sedation so I'm not sure what the GP's up to here.
If I was your friend I would go back to the regime of her mum had in place before the LCP was started and get the GP to explain very clearly why they felt that the LCP the best plan. I would then get a second opinion and maybe have a chat to social work and the district nurses or any other agencies that are involved.

Itchywoolyjumper Thu 31-Jan-13 19:44:08

What Piecesofmyheart said, that's very sensible and avoids any harm coming from going straight back to the old regime if she can't swallow.

bluegnuboo Thu 31-Jan-13 19:56:30

I think it's worth pointing out that dementia is a terminal illness and it can be entirely reasonable to be put on the LCP with no other diagnosis.

I'd agree that a second opinion is appropriate, if only to help your friend come to terms with what is happening, and there is a difference of opinion with the current GP, but don't necessarily think anything is "wrong".

ratspeaker Thu 31-Jan-13 19:58:35

I agree with piecesofmyheart and itchywoolyjumper that your friend needs a second opinion and maybe someone with her when she asks about her mothers care.
When you are distraught and emotional its hard to take it all in, misunderstandings can easily occur

From personal experience the LCP is there to ease the passing of a terminally ill patient, not all meds are withdrawn but may be given all thee time by a small pump.
We were kept informed at all times

www.liv.ac.uk/media/livacuk/mcpcil/migrated-files/pdfs/lcpv12newdocuments/LCP%20Relative%20Carer%20Information%20Leaflet%20-%20Nov%2009.pdf

VinegarDrinker Thu 31-Jan-13 20:07:51

Erm, some of the LCP drugs (used *as required*) ARE sedatives. And noone can stop her eating and drinking if she is capable of it and wants to. But forcing people to eat and drink against their wishes is cruel too.

The LCP is designed to give people a comfortable death. Why on earth would someone prefer a nursing home to a comfortable death at home?

And all of what pieces said.

VinegarDrinker Thu 31-Jan-13 20:09:20

So basically, if what she/you says is true, this bears absolutely no resemblance to the LCP.

CherylAmber Thu 31-Jan-13 20:15:27

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Sirzy Thu 31-Jan-13 20:20:57

piecesofmyheart is spot on.

The LCP can, and should, make somebodies days peaceful, comfortable and as dignified as possible. But if your friend doesn't believe this is what is needed for her relative at the moment then she needs to seek a second opinion.

VinegarDrinker Thu 31-Jan-13 20:24:55

Oh FGS, "pathway to death" - do you have any concept of what the LCP actually means?

1. Stopping "routine" blood tests - cruel and unkind to continue them
2. Stopping unnecessary and unhelpful drugs eg anti cholesterol medication - irrelevant, unhelpful, may have unwanted side effects
3. Stopping routine use of INTRAVENOUS fluids - nothing at all to do with stopping people from eating or drinking for as long as they want to or are able to
4. Prescribing medications that are commonly needed in palliative situations in advance, on an as required basis, so you don't have to wait for an overworked and busy Dr to be able to attend and prescribe them
5. Making sure the person is comfortable - not in pain, on a comfortable mattress etc.

It does NOT include anything to hasten death.

All of this is what I would hope all kind, decent people would want for people who are ALREADY dying.

I just cannot understand the hysteria

CherylAmber Thu 31-Jan-13 20:27:39

OOps forgot too add that group offers lots of help there and one of their members Rita Pal is a doc, so you should be able to get a bit of help there if you need it ~~

CherylAmber Thu 31-Jan-13 20:29:44

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Sirzy Thu 31-Jan-13 20:31:00

But it doesn't deny them water, it simply doesn't force them to have it when they don't want to which is very different.

PetiteRaleuse Thu 31-Jan-13 20:35:41

Can't understand the hysteria over the LCP. No idea why it is linked in anyone's mind to euthanasia. Everything I have read about it from reliable sources makes sound sense.

Your friend needs to get a second opinion if she doesn't believe the patient is at end of life, and ask someone to explain what the LCP actually is, rather than panic needlessly. You can ind a pdf leaflet nline explaining everything very clearly.

Piecesofmyheart Thu 31-Jan-13 20:37:45

Further professional info about the LCP for anyone who wants to read more. includes a link to the concensus statement made by 22 voluntary, medical and stautory organisations in September 2012 in support of the LCP.

www.rcn.org.uk/newsevents/news/article/uk/rcn_signs_statement_on_liverpool_care_pathway

Cheryl - would you like to outline the effect of excessive fluid intake on an already weakened and compromised circulatory system ?

VinegarDrinker Thu 31-Jan-13 20:37:51

I think you have invented your own version of the LCP, Cheryl. Because what you are describing has absolutely zero to do with the actual LCP. But hey, why let the actual facts get in the way of a good dose of hysteria?

LengLogs Thu 31-Jan-13 20:40:30

CherylAmber do you know anything about the LCP?

I doubt it going by your posts.

LengLogs Thu 31-Jan-13 20:42:18

Oh and just because the church says so, doesn't mean it true you know Cheryl hmm

CherylAmber Thu 31-Jan-13 20:57:25

Lenglogs http://www.nhs.uk/chq/pages/899.aspx?categoryid=68&subcategoryid=156 :/

CherylAmber Thu 31-Jan-13 21:00:04

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XBenedict Thu 31-Jan-13 21:01:04

hmm

Sirzy Thu 31-Jan-13 21:02:18

Cheryl, if you want to argue against something then you could at least attempt to provide some sort of coherent argument against it, preferably one backed up with a slight hint of understanding of the topic.

CherylAmber Thu 31-Jan-13 21:02:44

If your giving excess fluid your not doing your job properly four hour checks ain't it supposed to be, you ought to know what your doing so too much fluid isnt given :/

CherylAmber Thu 31-Jan-13 21:04:04

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As a nurse in a dementia unit, we have a few residents who are not for resus and on "comfort care plans" (basically the same as lcp). None if us here can really comment as we don't know the ins and outs of this person's medical condition.
I would rather that if it came to it I was on a lcp or comfort care plan rather than aspirating on fluids in an already painful situation

Sirzy Thu 31-Jan-13 21:07:50

Pardon Cheryl?

what does this symbol :/ mean, please?

thank you

CherylAmber Thu 31-Jan-13 21:09:56

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Sirzy Thu 31-Jan-13 21:11:16

The liverpool care pathway DOES NOT deny people water. If water is being denied that is wrong but that is not the liverpool care pathway.

CherylAmber Thu 31-Jan-13 21:11:38

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CherylAmber Thu 31-Jan-13 21:13:29

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Sirzy Thu 31-Jan-13 21:14:34

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CherylAmber Thu 31-Jan-13 21:15:37

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hellhasnofurylikeahungrywoman Thu 31-Jan-13 21:17:12

That does not sound like Liverpool Care pathway to me. At all.

CherylAmber Thu 31-Jan-13 21:18:06

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isthisacrazyidea Thu 31-Jan-13 21:18:26

Cheryl have you any idea at all about the danger of someone drinking fluids when their swallow is no longer strong enough? Basically you drown.

bluegnuboo Thu 31-Jan-13 21:21:57

If a patient is unable to swallow safely it's usual to give mouth care via a sponge or toothbrush for comfort.

I/v or s/c fluids are not appropriate at the end of life because of the risks of causing discomfort or worsening heart function.

CherylAmber Thu 31-Jan-13 21:24:35

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CherylAmber Thu 31-Jan-13 21:26:00

bluegnuboo yup and or drops through a pippette or very small teaspoon :/

Piecesofmyheart Thu 31-Jan-13 21:26:54

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Sirzy Thu 31-Jan-13 21:29:34

Cheryl, out in interest have you ever had to witness a loved one dying a long painful death? If you had I am sure you would be able to appreciate why they key things are keeping them comfy and ensuring it is as dignified as possible. Forcing fluids and treatments on them which won't help them or they don't want doesn't do that.

CherylAmber Thu 31-Jan-13 21:30:42

May as well give up, these ppl have no humanity in them, they're all following some master plan. Nowt of thinking nor compassion amongst them, they try to get ppl to believe they care care but they really don't. They just ooze out what they know as if it is the be all and end all and then suppose everyone else should just jump into line and do as they say sad

Lifeisontheup Thu 31-Jan-13 21:33:07

Is anyone else struggling to translate what CherylAmber is trying to say or is it just me?

HobKnob Thu 31-Jan-13 21:33:56

Cheryl I have reported you.

This is a thread about a sensitive subject and the OP is quite likely feeling very vulnerable. Your vitriolic and incoherent babblings are at best out of place and at worst hurtful and damaging.

OP, I would speak to your mum's GP and find out exactly what's going on. As others have said, the LCP should make your mother's last days easier, not worse.

Piecesofmyheart Thu 31-Jan-13 21:34:23

I think you giving up is the very best thing to do Cheryl. I really, really do wink

Sirzy Thu 31-Jan-13 21:34:49

oh dear, according to the group Cheryl linked to she is giving us "gyp" I must have missed that in amongst her childish posts.

CherylAmber Thu 31-Jan-13 21:36:14

sirzy there you go again, ive lost ppl so i know what it feels like, jst stop tryin to justify yourself all the time coz you know that every case is different and ppl can live a long time without food, but not for that long without water. but then maybe this is more about budgets and money, than real care sad

Either way the lcp is bad practice, too many cases have happened where it has gone wrong with lives just put down to mistakes :/

CherylAmber Thu 31-Jan-13 21:37:18

sirzy so what Im only 17 and do you think im that flustered abt what you think

VinegarDrinker Thu 31-Jan-13 21:37:51

You might think that those of us who do actually care for dying patients have some inkling of what makes them comfortable. But no, we are just following some sinister sounding "Master Plan", not wanting the best for our patients/relatives ... righty ho.

Because the NHS benefits from the LCP erm, how exactly?

Anyway, I'm out.

CherylAmber Thu 31-Jan-13 21:39:37

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Sirzy Thu 31-Jan-13 21:40:10

it is EVERYTHING to do with making things more comfortable for people. I really suggest if this is an area that intersts you which it obviously does you make the effort to research it properly and not just believe the crap information from one side of the argument.

Sirzy Thu 31-Jan-13 21:41:44

Debating isn't about getting your own way though Cheryl, thats what you seem to be unable to understand. You are posting your view but then getting very flustered when people are posting factual information which brings what your saying into doubt.

CherylAmber Thu 31-Jan-13 21:41:48

who said nhs benefits from lcp? mind you there was something abt there being financial incentives but who knows they are your words not mine, perhaps it comes down to beds or something...

VinegarDrinker Thu 31-Jan-13 21:43:21

Just before I go, do you think you know how to do the entire of my job better than I do, or is it just palliative care you're an expert in? I'd love to know as I'm just wondering why I wasted those years of studying and actually doing the job.

How about going and doing some work experience on an elderly care ward or in a hospice, and then train as a nurse or doctor to combat all these evil types with a sinister master plan?

lustybusty Thu 31-Jan-13 21:46:00

stella my gma was (I think) on LCP with terminal cancer when we begged for her to be discharged from hospital to care for her at home. My dad and I were taight/shown by a nurse how to lift her on and off a commode safely, a team came round to make sure her bed was comfy, but most tellingly to me, the consultants exact words were "give her what she wants, when she wants, to the best of your ability". Hence her last drink on earth was a sip of gin and tonic out of a toddler sippy cup, washed down with a spoonful of oramorph. That's what she wanted, that's what she got. The only medical intervention she had was when we asked for her to be catheterised as we were hurting her when we lifted her. THAT, to me, is what the LCP is all about - not witholding stuff, quite the opposite. Hope your friend can talk to gp, explaining that her mum deserves, at the VERY least, to doe in comfort.

CherylAmber Thu 31-Jan-13 21:46:24

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Sirzy Thu 31-Jan-13 21:48:42

And if they want a drink they get one. It really is that simple!

BetteDavis01 Thu 31-Jan-13 21:51:11

My nan is currently in hospital and I think, she doesn't have much longer left, the nurses seem to think that as well. Nan doesn't want to eat anything and just sips a tiny bit of water. She is fading away, it's as if nature as taken over. She is withdrawing from life.

I read the Daily Mail and when I first read about LCP, I was horrified. Last weekend a nurse explained it to me, and I now want my Nan to be placed on it, when the time comes. confused

IMO, LCP, lets nature take its course but makes the person comfortable and allows them their dignity.

Sirzy Thu 31-Jan-13 21:51:16

Lusty Sorry to hear about your Grandma but pleased she got a comfortable death (for want of a better way of describing it)

Sounds very similar to my Grandfather, the last thing he wanted was a whiskey! He would have hated being in a hospital being forced to have treatment which is what people seem to forget, this is about what is best for the person who is dying and in a lot of cases invasive treatment isn't what is best.

My DM died a few months ago. For her last three days she was put on the LCP with our consent. The nursing staff were wonderful and she eased her way from this life with comfort and dignity. None of us have any issues with the LCP. It was humane and kind.

mrsbunnylove Thu 31-Jan-13 21:52:47

good grief. i can't read this squabbling.

my mum was on the lcp a couple of months ago and the government saved her life by saying patients can't be put on it without family permission. they didn't have our permission. she's alive and relatively well. she had eight out of ten stages of death when she was in hospital and only a day or two more dehydration to go before the end. i think family consent might be part of it now, and is something to ask about.

As someone who doesn't know that much about the Liverpool Care Pathway and what is included (though have just learnt more in this thread) - but am in favour of good palliative end of life care and don't feel life should be prolonged at any cost - am just not sure that calling care "The Liverpool Care Pathway" is that helpful. Doesn't it just make it more mysterious to people ? (other than HCP's who know what it includes) I think talking more plainly about "end of life care" or "palliative care", if people have heard of that, might be better.

I'm sorry to hear your friend is concerned/ upset about her mother's care - I'm sure seeking other medical opinions would be good.

hatgirl Thu 31-Jan-13 21:56:37

Cheryl aren't you too young to be reading the daily mail?

Most young people I come across have very open minds and don't believe everything they read in the papers. It is one of the great aspects of youth - take advantage of it while you still can.

Perhaps the people who would like to have a reasonable, adult discussion about a very serious topic would like to continue, I suggest Cheryl that if you want your views to be taken seriously you stop using text speak and stop being agressive towards other posters. Otherwise people will just start to ignore your posts (if they don't get deleted!) Up to you....

CherylAmber Thu 31-Jan-13 21:56:43

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hellhasnofurylikeahungrywoman Thu 31-Jan-13 21:59:40

CherylAmber-where does your fear of the LCP come from, personal experience or is it just what you've read?

lustybusty Thu 31-Jan-13 22:01:26

sirzy thanks, it's what she (and us) wanted- to due in peace, in bed, in the house she lived in all her married life. I agree with the people forgetting what's best for the patient, the week she died, had she still been in hospital, she would probably have had her THIRD camera up bum (colonoscopy?) in three months... They'd already diagnosed terminal cancer and advised against treatment, so why keep on with the (uncomfortable, undignified) investigations?!?

Lifeisontheup Thu 31-Jan-13 22:03:06

The LCP is not necessarily a permanent state, people can go on and off it if their condition changes.
If used properly then it can provide a gentle passing, google Dr Kate Granger if you want a balanced intelligent discussion of it from someone who is not only a Doctor but also terminally ill.

lustybusty Thu 31-Jan-13 22:04:09

And cheryl I believe gma WAS ON LCP... what we did for her was keep her happy and comfortable-which is what I think LCP is meant to be about (if you ignore the daily mail hysteria about a couple of drs/hospitals getting it wrong...)

LCP is essentially what used to be called providing TLC. tender loving care, plus common sense. Relieving pain/symptoms as much as possible but not trying to cure when death seems inevitable.

Pain relief or sedation if needed, and as far as water etc goes - typically a person with impaired swallowing reflex would not be allowed oral fluids(unless thickened at least, as it may cause pneumonia) If it's recognised that the patient is clearly dying then you would allow oral fluids if they wanted them, because possible side effects don't matter in this situation. Dignity and comfort matter.

I would be happy for my loved ones to be cared for in this way, very happy. Much rather that than the alternative.

CherylAmber Thu 31-Jan-13 22:06:45

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and OP, it sounds like someone has misinterpreted the guidelines or is just plain wrong, what you described is not the intention at all > I'm sorry you are going through this.

Piecesofmyheart Thu 31-Jan-13 22:11:32

Another useful source of info :

www.liv.ac.uk/mcpcil/liverpool-care-pathway/

Piecesofmyheart Thu 31-Jan-13 22:13:10

Cheryl -I thought you were leaving the thread? I'm really not convinced that your posts are doing anything to help the OP ?
Perhaps read the links that have been posted and they might help you to form a coherent argument.

Madratlady Thu 31-Jan-13 22:14:05

Cheryl, you appear to have been reading the Daily Mail.

First of all I am a nurse working with the elderly so I do know what I am talking about, and I can assure you there is no big conspiracy to kill off the old and frail!

The LCP does not deny food and drink. People can eat and drink whatever they want as long as they are able to. I have looked after plenty of people who have continued to eat and drink in their last days, although as people get closer to the end of life they often don't want to eat or drink or are unable to.

The main aim of the LCP is to stop unnecessary or ineffectual treatment and provide relief from common symptoms that happen at the end of life, like agitation, pain or nausea.

There has been a lot of hysteria following recent articles about the LCP but they seem to mostly be highlighting odd cases of bad care rather than the many peaceful and dignified deaths that occur every day.

I will now sit back and wait for a random insult based on my user name, since that seems to be the pattern here.

Madratlady Thu 31-Jan-13 22:17:06

And to the OP, it certainly sounds like the GP is not following the LCP correctly, although we don't know any individual circumstances that might be affecting his decisions. Either way it sounds like your friend should ask for another doctor to see her or take her to hospital.

CherylAmber Thu 31-Jan-13 22:23:16

madratlady, well I haven't but even if I had been reading the Daily Mail so what is it to with anyone else, I can legally read a paper can't I and even if I had a view on what they were saying in that paper I am still within my rights to have my view.

The thing is your lcp has caused a lot of unnecessary suffering and these people seem to follow it like it is fine, good and just what everyone wants. What I want to ask, is what if it isn't what then? Are you telling me no one has any rights any more when it comes to the lcp.

Being a nurse is good, but it doesnt matter, what I am saying here is that we all have rights and unless you intend or can take those rights off us, then we should be able to just say no! Whatever the treatment is or in the case of the LCP isnt.

Susieshoe Thu 31-Jan-13 22:30:04

Just thought you all ought to know that Cheryl's dad is the admin on the page she is desperately trying to publicise. And if you think Cheryl is talking a load of tripe - you should read what her dad (goes by the name of James mee) has to say!!!

But fair dos - she's a good girl - does what her dad tells her........

bluegnuboo Thu 31-Jan-13 22:30:48

Cheryl of course you have the right to say no to an LCP, a decision I hope you don't have to face for a very long time.

Having the right to say no to it for a member of family is a different thing.

While it's important to keep family as informed as possible drs have a responsibility first and foremost to their patients. Often patients have made their wished known long before the LCP is started even if they haven't, carrying on painful, disturbing procedures such as i/vs blood tests trying to administer oral meds may just not be in the patients best interests.

Death is a fact of life. It needs to be dealt with as such.

Piecesofmyheart Thu 31-Jan-13 22:31:27

The incredible irony is that I have worked in palliative/end of life care for nearly 20 years. The philosophy and ethos of palliative care hasn't changed in that time. 20 years ago we didn't 'use' the LCP. But we cared for patients using the principles enshrined in it.
20 years ago, we used to despair that patients who DIDN'T have access to good palliative/end of life care, but who had a life limiting illness often died in pain, in distress, with unnecessary intervention, in noisy hospital wards, cared for my HCPs with the best intentions in the world, but lacking in the skills and knowledge needed to provide end of life care.
20 years later, the wonderful John Ellershaw et al have successfully rolled out the LCP to all clinical settings. With clear guidance for it's implementation and use.
And yes, there is still a lack of knowledge and understanding amongst some HCPs about the nature and use of the LCP.
But the MOST damaging development hass been the hi jacking of the LCP by the daily wail. The damage that has been done, and the distress caused to patients and families is untold. And when they get 'bored' of the LCP, they'll move on to their next campaign against the NHS/women/immigrants.
I look forward to the findings of the independent review to follow.
And I suspect that the wail will be forced to offer much more that a half hearted 'retraction'

lustybusty Thu 31-Jan-13 22:34:17

But Cheryl, the I think you are believing the wrong things of the LCP because of a few people doing it badly, which makes the news. how many news reports have you seen saying that "this operation went well", or "this gentleman on the LCP died happy, comfortable and as Nourished and hydrated as he wanted to be"? None - because good news doesn't sell papers! I've just looked at the LCP website (googled liverpool care pathway and went to the liverpool uni site) and they quote "The LCP is an integrated care pathway that is used at the bedside to drive up sustained quality of the dying in the last hours and days of life."
That sounds like the intention is to do good by everyone... (op, the quote might help you too.... We seem to have gotten slightly diverted)

justmyview Thu 31-Jan-13 22:36:11

My granny was on LCP for the last week or so of her life and it was all calm, dignified and respectful

If OP's friend feels her Mum is not ready for it,then I suggest she should seek a second opinion

CherylAmber Thu 31-Jan-13 22:36:28

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Piecesofmyheart Thu 31-Jan-13 22:39:19

When your opinion is ill informed, ill researched and likely to be harmful, then it WILL be challenged. It's a grown up fact of life. Have you read ANYTHING other than the daily wails articles ?

How can you not see that you are pretty much bullying the OP, not anyone else. You are preaching and you wont give up, everyone has a right to an opinion but that is exactly what it is, just an opinion.

You are trying to force your views (actually probably your Father's actually) on everyone here, sparing no thought for the feelings of the OP who you are probably distressing.

Sirzy Thu 31-Jan-13 22:39:59

Pieces post shows exactly why the LCP is needed.

Instead of accusing her of being patronising Cheryl read her post and consider what she is saying.

CherylAmber Thu 31-Jan-13 22:42:23

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bluegnuboo Thu 31-Jan-13 22:42:53

No one is trying to stamp over your rights Cheryl. Just trying to give you the information so that you can not sound ill informed, ignorant or scaremongering.
Of course that may be exactly the right your trying to exercise in which case...fill your boots.

Madratlady Thu 31-Jan-13 22:47:04

I have to ask Cheryl, what do you think would be a better way of caring for people at the end of their lives?

Please don't start ranting about people being refused drinks as that is not the case with the LCP. I'm just interested to know what you would suggest instead?

CherylAmber Thu 31-Jan-13 22:48:48

Message deleted by Mumsnet for breaking our Talk Guidelines. Replies may also be deleted.

Susieshoe Thu 31-Jan-13 22:49:01

Message deleted by Mumsnet for breaking our Talk Guidelines. Replies may also be deleted.

CherylAmber Thu 31-Jan-13 22:49:49

Message deleted by Mumsnet for breaking our Talk Guidelines. Replies may also be deleted.

"J** M** Jumpin bananas almost forgot i got a daughter lol message passed onto site via cheryl..."

Why don't you tell you tell your Dad to come on here and fight his own battles, if he feels so strongly?

CherylAmber Thu 31-Jan-13 22:53:14

I have opinions of my own or is that not allowed now gees so I have a dad, most ppl do but now i dont have a say you ppl are a laugh a minute

Madratlady Thu 31-Jan-13 22:54:14

No Cheryl I wasn't saying you have to agree. But I do prefer reasoned opinions and actual discussion to random accusations and insults.

I was asking what you felt would be a better system as you clearly think the current one is wrong.

But you don't appear to be able to engage in a discussion.

But you were quite obviously sent here by your Dad and you don't seem to actually know much if anything about LCP.

Susieshoe Thu 31-Jan-13 22:57:30

Oh by the way fellow posters - do you realise that Cheryl's Dad (James Mee) has proudly posted a link to the thread on his poisonous Facebook page.

Please be aware that Jame Mee is in the habit of taking quotes from Pro LCP pages - cutting and pasting them on his page and then makes rude, insulting assumptions about the original poster. Said original poster has absolutely no right to reply because they have no ability to comment on the anti LCP page unless they are members!

So, watch that he doesnt do the same here....

bluegnuboo Thu 31-Jan-13 22:59:34

Can't see the prospect of Cheryl coming up with a reasoned opinion, fact or discussion anytime soon.

It would appear her right to sound ill informed and reactionary is all that's needed in this.

Piecesofmyheart Thu 31-Jan-13 23:01:54

I very much doubt that daddy will dare appear over here - too much informed discussion and relevant information being posted. I rather suspect he would be more than a little out of his depth grin
It will be useful for the supporters of his page to be pointed towards this thread. They might learn something wink

Op - again I apologise if the tone of the thread is distressing for you. I really hope things are okay with your friends mum.

bluegnuboo Thu 31-Jan-13 23:02:30

Mr Mee's little page is unlikely to be read by anyone I'd be worried about but worth noting his superior debating tactics Susie, thanks for the info.

Pieces I really don't think they would learn anything, they are all as ignorant as the next I think.

I will state though that I used to be totally against LCP after reading media articles about it, I seen a thread on here and actually went and done the research myself and I changed my mind.

bluegnuboo Thu 31-Jan-13 23:06:25

I will last say that I think a lot of people who react so badly to something like the LCP are having very understandable reactions to the loss of a loved one.

I do think it's a pity that their grief is keeping them in such a pointlessly angry place and would leave them be... if it wasn't for the fear and worry they give to people who are terminally unwell or their relatives with their hysteria..

Susieshoe Thu 31-Jan-13 23:08:10

Oh and by the way, I am also a nurse, mainly chemotherapy but also care for people who are acutely unwell and sometimes terminally ill and cared for on the pathway.

And yes, I totally support appropriate use of the pathway and am pleased to see that it's being used more in a general setting. It can be used in appropriately at times - but any inappropriate use has been grossly exploited by the media (and James Mee et al) in order to discredit, abuse and accuse healthcare workers of malpractice

In fact James Mee and his cronies go even further and accuse NHS workers of murder, cruelty even goes so far as to accuse us of nazi leanings......

elastamum Thu 31-Jan-13 23:08:55

I have experience of the LCP when caring for my mum, who died a peaceful and dignified death at home surrounded by her family. Implemented correctly, it is a great help in caring for dying.

BUT I was also asked permission to withdraw fluids and food from my aunt who had dementia, as I was told by her nursing home that she was dying. I refused, as I felt this was a charter for neglect. I made it very clear to them that I considered this to be inhumane and certainly not appropriate treatment for a vulnerable old lady. She lived for a further six months.

Sadly, this sort of thing the OP describes does happen, but it isnt the LCP that is the issue.

OP tell your friend to complain to her GP and if she doesnt get a resolution inform them that she will be taking this up with the GMC and PCT. And as long as she can swallow, give the poor woman some water. Dying of dehydration is a slow, and horrible death.

HopingItllBeOK Thu 31-Jan-13 23:10:17

Cheryl you are quite right that you have the right to hold whatever opinions you wish.

What you should not have the right to do, is use one person's pain as a launch board for your father's views and political grandstanding.

This is not an open debate, the OP clearly states that. This is a plea for information and help from a worried friend. You have made your point repeatedly you have linked to your page. Now I ask for the sake of decency that you walk away from this thread.

frumpet Thu 31-Jan-13 23:20:03

Cheryl , no one on here who works in the health care sector is going to deny that sometimes things go wrong or that bad care isnt given . However the LCP is essentially about giving the best care to a patient at the end of their lives . It is about ensuring that the medications required to ensure someone is pain free are available to be given . I was nursing in the days before the LCP and used to despair on a night shift or weekend when there were only a skeleton staff of medics and you needed morphine for someone .
I would also like to point out that if a person is put on the LCP and their condition changes for the better , then they would be taken off it. I remember a very sick , elderly gentleman who was put on the LCP , i looked after him on a night shift , when i came on he was very poorly , by the morning he was asking for a cup of tea , clearly not his time to go , oh and obviously i made him the cup of tea he requested !

frumpet Thu 31-Jan-13 23:23:13

The most important thing to remember though Cheryl is that opinion does not equal fact . You are of course entitled to your opinion , as everyone else is theirs but do not mix the two up .

Personally I feel it's a shame there hasn't been more debate between other people on this thread and not just batting backwards and forward with one poster !

frumpet Thu 31-Jan-13 23:29:59

OP are the district nursing team involved if the patient is at home and on the LCP ? they may be a good port of call as far as gleaning information and getting answers is concerned . She can ring the GP surgery and ask to speak to the district nursing team looking after her mother , they may not be in house and may be located at another location , but she should be able to contact them.

frumpet Thu 31-Jan-13 23:32:01

Why does your friend think that a nursing home is preferable to 24 hour care in her own home ? is it something she has discussed with her mother previously ?

stella1w Thu 31-Jan-13 23:36:59

OP here.. thanks for the helpful suggestions. I have read some of them to my friend and she is grateful.One of the most helpful ones was one early on that said in a hospital environment LCP is only for people with 72 hours to live.
The GP has stopped the sedatives that stop her mum getting agitated, stopped her blood pressure medication and told the carers to stop giving her food (they refused). How he thinks this could carry on for four weeks I do not know.
I have suggested to my friend that she get a second opinion/assessment, get local hospice involvement and make clear to the GP practice manager that the family do not consent to what he is suggesting.
I have had a google of LCP criteria and the first one is that the patient is dying, which my friend's mum is not. She can eat when encouraged, she is mobile, she can recite her address, she can sip water.
Only last week my friend was told that her mum did not qualify for funded nursing care and now she has been told her mum is dying. She feels there might be a connection (privately funded til now, but money about to run out).
I did not mean to start a debate, just needed urgent advice. Thanks all. Perhaps someone (I don't know how) could report this thread for deletion as I fear it is going to get heated.

frumpet Thu 31-Jan-13 23:40:57

Stella , get your friend to check if the district nursing team are involved , if her mum is on the LCP then they should be . Get her to speak to them about her concerns .

frumpet Thu 31-Jan-13 23:41:38

Also does she have a care manager in social services ? if so speak to them too .

TraceyTrickster Thu 31-Jan-13 23:56:58

I find CherylAmber rantings incredibly offensive.

My mother died a few months ago. She had advanced dementia and lost her swallow function, so could not eat/drink. The intravenous drip was pooling under her skin, causing distress (as he body was shutting down albeit slowly).
We requested food be withheld to reduce her suffering. Hardest decision I have ever had to make, but definitely the right one for us.
The LCP was fantastic- she had lots of pain relief drugs, excellent pallative care and the nurses moistened her lips every hour (the only way she could receive 'some' liquid).

I get very offended by people making swinging judgments, and waffling on about the church involvement, having no direct experience of it. Death can be peaceful or protracted. We think the LCP helped it to be as painfree as was possible.

hellhasnofurylikeahungrywoman Thu 31-Jan-13 23:59:50

Reported stella all the best your friend and her mum.

CherylAmber Fri 01-Feb-13 00:54:29

I am going to post just once here. This is cheryl's dad, the reason I asked her to post was because this was "mumsnet" and I believed I would be a little out of place, for me to post. Call me old fashioned if you must, I would probably agree.

I lived and saw what happened to my mother under "LCP" and I would not have treated a dog in such a manner, but I won't speak of that here, because I think it is inappropriate and certainly under the circumstances in lieu of the ladies post not the right time. However, you are welcome anytime to join our group and pontificate there and tell us all about how good your LCP is. You can say all you want and repeat all you have said here to those who have lost their loved one's in that group.

I will finally say this, for "some", the LCP has worked, it has helped them and it has provided comfort in death seemingly mostly in a hospice setting! On the other hand, I know of a lot of others who have not had the fortune to be within that type of setting when the LCP was used and as a result they have suffered the most dreadful inhumanity imaginable. The real failure has been the unwillingness to acknowledge this! You will pile everything in you have to the LCP. But as regards the loss of human life, when it goes wrong, you cheapen the degrading inhumanity even more, by calling it nothing more than a mistake.

I hope your friends mum gets all the treatment she needs! I apologise fully and unreservedly. Goodnight!

SinkyMalinks Fri 01-Feb-13 07:37:42

cherylsdad.

Undoubtedly there are tragedys in life. There can be wrongs or errors that need addressing.

You say yourself that the LCP works for some.

The pathway is not bad. Perhaps the implementation in some cases (which is what the health sec says on your fb site- which got unfairly slated)

By piling all your vitriol onto the LCP (which, in your words has helped them and provided comfort) are you missing the opportunity to ask why the care of your loved one was so unacceptable?

claig Fri 01-Feb-13 08:29:46

Cheryl, well done for sticking to your position and bringing forward a contrary view to the all-believing, all-faithful contingent.

Not everybody blindly follows the advice of medical experts. We read of people being dehydrated in hospital - people not on the LCP. We read of scandal in some of hospitals. Not everyone unquestioningly accepts the advice of the experts.

'Doctors at the hospital had removed all feeding tubes and drips and placed the 82-year-old grandmother on the Liverpool Care Pathway. Her children and grandchildren were told to say their last goodbyes.
But they said no. And after they defied hospital orders and gave Mrs Greenwood drops of water, her family helped her make a remarkable recovery.

Within hours, Mrs Greenwood was eating and drinking for herself and is now back at home and proud to call herself a Liverpool Care Pathway survivor. The former singer and pub landlady is planning to go on a world cruise, looking after her great-grandchildren at home and will attend her son-in-law’s 50th birthday party this weekend.
The hospital concerned has been paid more than £600,000 in the last two years to hit targets for the number of patients who die on the Pathway, according to documents uncovered by the Mail.

Last night Mrs Greenwood said she is angry that doctors gave up on her and has welcomed the announcement of a review into the ‘end of life’ treatment regime.'

www.dailymail.co.uk/news/article-2223836/I-survived-death-pathway-Patricia-82-given-days-live-family-defied-doctors-gave-water-straw--shes-planning-world-cruise.html

claig Fri 01-Feb-13 08:38:31

'One of the leading critics, hospital consultant Professor Patrick Pullicino, said: 'Given the fact that the diagnosis of impending death is such a subjective one, putting a financial incentive into the mix is really not a good idea and it could sway the decision-making process.'

Why the financial incentives?

www.dailymail.co.uk/news/article-2223286/Hospitals-bribed-patients-pathway-death-Cash-incentive-NHS-trusts-meet-targets-Liverpool-Care-Pathway.html

claig Fri 01-Feb-13 08:41:24

'But Dr Tony Cole, chairman of the Medical Ethics Alliance pressure group said: 'If death is accelerated by a single day that will save the NHS nearly £200 – that is the estimated cost of a patient per day in hospital.
'My position on the LCP is that it is inherently dangerous and unnecessary.'

claig Fri 01-Feb-13 08:49:19

Start asking questions, start demanding answers, stop your blind faith.

'in a letter to The Daily Telegraph, six doctors warn that hospitals may be using the controversial scheme to reduce strain on hospital resources.'

www.telegraph.co.uk/comment/letters/9385681/Deadly-one-way-street.html

That does sound worrying that financial incentives may be involved in some trusts.

The NHS is so broke I fear decisions can easily be influenced by money

- usually much more trivial but just thinking of the other thread where mothers on post-natal wards shared their experiences of interactions with the Bounty lady. Bounty pay the hospital for access to new mothers and the hospitals agree in spite of the presence of Bounty staff being of extremely questionable benefit to the new mothers on the wards. The trusts that have replied have all mentioned the funds they receive from Bounty being useful as a reason for the practice continuing - and I'm sure they receive very little per patient.
Just highlights how the NHS and post-natal wards in particular are run on a shoe-string.

claig Fri 01-Feb-13 08:53:37

'the group opposing the pathway, led by Prof Patrick Pullicino, a neurologist from East Kent Hospitals, argued that it was fatally flawed.

There was no scientific basis underpinning the prognoses that patients were dying, they said. “It is self-evident that stopping fluids whilst giving narcotics and sedatives hastens death,” the group said in a statement.

The group also pointed out that the latest pathway audit showed that just 16 per cent of patients had fluids continued on the pathway and none had fluids started. “The median time to death on the Liverpool Care Pathway is now 29 hours,” the group said. “Statistics show that even patients with terminal cancer and a poor prognosis may survive months or more if not put on the LCP.”

They added: “The fact is that there is no scientific evidence to support the diagnosis of impending death and there are no published criteria that allow this diagnosis to be made in an evidence-based manner.'

www.telegraph.co.uk/health/healthnews/9626610/Patient-death-pathway-based-on-guesswork.html

Sirzy Fri 01-Feb-13 09:07:05

OP, please encourage your friend to seek proper advice. Although it is written for the NHS this seems to give a pretty balanced overview of the LCP and some of its criticisms. much more balanced than the daily mail thats for sure

There is no denying that it is used wrongly in some cases, but then mistakes are often made in care no matter what the source. Being on the LCP isn't always the end as people do recover against the odds which is great and which is why any sort of palliative care needs to be constantly re-examined.

It is very important that families are involved in care, and that the ask questions about anything they aren't sure of. This is probably one of the best way they can help their loved one at a difficult time.

stella1w Fri 01-Feb-13 09:10:27

Dear mumsnet towers. Op here. I asked for the thread to be deleted because my original questions had been answered and the thread was turning nasty and distressing. You have not done so. Why not?

Hmm, that sounds bad too claig

Decisions to follow the pathway should be evidence based and more rigorous for everyone's benefit, even if some professional judgement and looking at patients on an individual basis will always be involved too.

Having said that I feel if say I was quite elderly with terminal cancer I would rather be on the LCP as long as I was well cared for and those around me were supported well too - ideally in a hospice. Rather than dragging things on for the sake of it with lots of tests, treatments, drips etc. in hospital.

We are all going to die one day. I hope I will be supported to die well - as I have lived ! (well, in my opinion anyway !)
And when the time comes - hoping for many years yet and maybe some grand-children one day !

claig Fri 01-Feb-13 09:26:53

Juggling, I think the review ordered by the ministers was probably down to the pressure from nespaper articles in the Daily Mail and Daily Telegraph which reported on medical opposition and on families' experiences etc. Without this pressure, there would probably not have been a review and teh extent of teh financial incentives etc. may not have been admitted. The Mail says it found out some figures based on FOI requests etc.

There comes a point when we all have to die, but we should expect as pain-free a death as possible. Dehydration is agony; giving somebody water is only basic humanity.

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

That means 84% had fluids removed.

I think questions need to be asked. Some newspapers have dared to ask questions and a review has been instigated. We all owe it to patients that the best possible treatment should always be delivered.

Blind faith is not good enough; open, public debate is required to maintain the pressure that ensures a top quality service for the people of this nation.

littlemefi Fri 01-Feb-13 09:29:04

Cheryl, do you have personal experience of the LCP that has informed your opinion?

claig Fri 01-Feb-13 09:37:03

Read Cheryl's dad's post about his mother and Cheryl's grandmother at
01 Feb 00.54.29

claig Fri 01-Feb-13 09:54:22

Even the BBC has reported on the concern of some families whose relatives have been on the pathway.

We are very lucky to live in a country where we have newspapers that dare to question the authoruities, that highlight the concerns of ordinary people and ordinary families about the treatment of their relatives.

Liverpool Care Pathway death prompts torture claim

Never stop questioning and don't blindly follow what you are told. Don't attack posters like Cheryl who dare to oppose officialdom.

HelenMumsnet (MNHQ) Fri 01-Feb-13 10:31:15

stella1w

Dear mumsnet towers. Op here. I asked for the thread to be deleted because my original questions had been answered and the thread was turning nasty and distressing. You have not done so. Why not?

We're sorry you feel ignored, stella1w. That's not the case.

We can see from our logs that you mailed in your request close to midnight last night. As we hope you can imagine, our staffing is fairly limited in the wee hours.

We will reply to your mail as soon as we possibly can (yours in not the only one in our inbox, by a very very long way).

In the meantime, it's probably worth knowing that we don't generally delete threads unless they break our site rules.

Anyway, apols for the delay. We hope to ping into your inbox very shortly.

daylily Fri 01-Feb-13 10:41:10

stella 1w has your friend had any contact with Admiral Nurses? They advise the carers of people with dementia. My mum has dementia and I have found them useful, though there is not many of them. Her is the main website but there should be a local one to you.
www.dementiauk.org/what-we-do/admiral-nurses/

Piecesofmyheart Fri 01-Feb-13 14:12:58

'That means 84% had fluids removed.'

It means no such thing. Have you chosen to deliberately ignore the various explainations as to WHY continuing to pump dying patients with fluid, either orally or by SC or IV means can cause distress and can actually HASTEN death ? Have you ever seen a patient aspirate ?

I look forward to the wails journalists presenting their 'evidence' to the review and welcome the opportunity for the LCP to be scrutinised and for it's benefits for dying patients to be presented.

claig Fri 01-Feb-13 14:51:30

'Have you chosen to deliberately ignore the various explainations as to WHY continuing to pump dying patients with fluid, either orally or by SC or IV means can cause distress and can actually HASTEN death ?'

What, you mean like Mrs Greeenwood who is now planning a world cruise?

‘I asked Mum if she was thirsty and she nodded. I held a cup of water to her lips, but she was not strong enough to suck on the straw. So I put my thumb over the end of the straw and dipped it in the water so I could feed her a full straw of water.
‘I fed her for more than an hour with the straw and she opened her eyes and could talk to us, the water seemed to stimulate her.
‘The day after I did the same, but a nurse took my wife to one side and told her that I should not be feeding her this way because she might choke.
‘I was livid. The nurses could see what we were doing and every time we gave her water she came round and could talk to us.’

'
Blackpool Teaching Hospitals NHS Trust is one of several hospitals that the Mail has discovered are being paid incentives to ensure a set percentage of patients who die on their wards have been put on the controversial regime.
Payments are made through a system called Commissioning for Quality and Innovation, which channels money to hospital trusts through NHS ‘commissioners’.
Documents show that for the financial year that ended in March there was a target of 35 per cent of all deaths on the LCP.
Over the past two years, £680,000 in bonuses have been available to the Trust for achieving goals related to ‘end-of-life care’.
Last night Mr Greenwood was appalled at the revelation the hospital was receiving money for meeting targets for putting patients on the pathway.
‘I am absolutely disgusted,’ he said.
‘This puts this whole thing in a totally different light. They’re making money out of killing people.’
Nearly one in three of all patients who die in hospitals are on the Pathway, which often involves sedation with morphine and the removal of tubes providing nutrition or fluids to the patient.

Mr Greenwood is not the only one who is appalled and disgusted.

This is not going away because the Daily Mail has made it public.

claig Fri 01-Feb-13 15:05:35

Now they are finally having a review of it.

You can keep talking about teh futility of pumping water to dying people, but no one is convinced by that talk. It's not pumping, it's spooning water or tickling water with care by the caring profession.

The inquiry is not completely independent and people are already bringing it ip. This will not go away, because good papers like the Daily Mail and the Daily Telegraph will not let it lie.

'Care Minister Norman Lamb said: ‘We need to know how patients and families feel about the care they receive.
‘We need to make sure that health professionals have the best tools to help them with this sensitive work.’

But MPs and doctors criticised the inquiry for not being independent. It will be run by a Heath Department organisation, the National End of Life Care Programme, and medical organisations which have been deeply involved in promoting and operating the Pathway.
Dr Philip Howard, a consultant physician based in London, called for a judge or senior barrister to be in charge.
‘It was only two or three weeks ago that creditable organisations were saying the LCP was a framework for good practice that did not hasten death,’ he said.
‘The very same people are now saying they are conducting the inquiry. It’s like the fox guarding the henhouse.’
Julian Brazier, Tory MP for Canterbury, said: ‘There should be an independent inquiry and not one run by the practitioners.’
Dr Tony Cole, chairman of the Medical Ethics Alliance, said: ‘The inquiry will only command public confidence if it is independent.
‘There are many people who contacted the Press with dreadful stories and this inquiry should be open and their voices heard.’

LengLogs Fri 01-Feb-13 15:08:36

I'm only speaking of my experience of 11 years on an acute medical care of the elderly ward within our Trust, we don't use the LCP as such, we have our own version of a care pathway but the principles are the same.

We couldn't give a shit about bonus incentives of putting patients on the care pathway. We are frontline staff. No one tells us to hit targets with regards to dying patients. Bonuses mean nothing to us as we work for the NHS, we don't see a penny of it. To say that Doctors and Nurses use this tool as a means to earn the Trust money is bloody offensive and grossly innacurate.

Patients are monitored by numerous HCP's when in hospital. Management do not get involved with that side of things. Unless you work in a hospital environment, you would know this.

claig Fri 01-Feb-13 15:16:18

LengLogs, if it is so well known then why do you think that they are spending money to review it and they will look at the financial incentives involved and why do you think that the following was said by a professor

'One of the leading critics, hospital consultant Professor Patrick Pullicino, said: 'Given the fact that the diagnosis of impending death is such a subjective one, putting a financial incentive into the mix is really not a good idea and it could sway the decision-making process.'

These decisions are taken above your head, you are frontline staff, but policy and these pathways are decided way above your level. The Daily Mail and the Daily Telegraph have reported on many dreadful stories by families.

claig Fri 01-Feb-13 15:31:32

LengLogs, you work in the NHS and you are not concerned about these financial incentives. You think there is no conflict of interest.

Well, Mr Greenwood is appalled and disgusted. His family were livid when told not to give water to Mrs Greenwood.

'Dr Tony Cole, chairman of the Medical Ethics Alliance, said: ‘The inquiry will only command public confidence if it is independent.'

This is now public, even the BBC ran an article where a family member said it seemed to him like torture.

Public confidence needs to be reassured and the public will not be satisfied with frontline staff saying trust is we know what we are doing and there is no problem.

'
Hospitals will no longer be able to profit simply by putting dying patients on the Liverpool Care Pathway.
NHS trusts have been receiving six-figure sums for using the controversial end-of-life regime.

But care minister Norman Lamb said these ‘bribes’ would have to stop unless it was shown suffering had been reduced.

It is feared the incentives pressure doctors to use the pathway even when a patient’s life may not be nearing its end.'

www.dailymail.co.uk/news/article-2262503/Hospitals-stripped-cash-bribes-death-pathway-shake-controversial-end-life-regime.html

claig Fri 01-Feb-13 15:37:56

Get real. This is why they are holding a review into it.

The Lib Dem minister said there would be a specific session of the review which would question families about their experiences. Medical experts – both those for and against – would also appear.
He said: ‘I have been deeply troubled by some of the stories that have been reported to me about the experiences in some hospitals. It is impossible to know the scale.

‘I am deeply concerned about the apparent misapplication of Liverpool Care Pathway guidelines in some hospitals.

‘Why it is that in many hospitals, patients are being denied food or drink, even though the guidelines say this should not happen? It is deeply disturbing and needs to be properly understood and investigated.

‘I will act on any rational conclusions that come from the review. We have the chance to get to a great conclusion, where we can genuinely improve the quality of care at the end of life.

‘It is critical that food and drink is not withdrawn, unless to give food and drink would cause unnecessary suffering. I have heard stories of people who are compos mentis being denied liquids – and this is deeply disturbing.’

claig Fri 01-Feb-13 15:49:57

Just think of the poor old people who have no family at all; those who are all on their own, with no one to badger and pressure and ensure that water is given with a teaspoon. What chance do they stand?

We had a report recently where we were told we should start washing our relatives in hospital because the NHS staff are too busy. What about the poor people who have no relatives. This type of care is unacceptable and I welcome inquiries that change things for teh better.

JakeBullet Fri 01-Feb-13 15:51:01

"Good papers like the Daily Mail" grin....that was a joke wasn't it?

The LCP is fantastic when used properly (and that means taking away financial incentives etc). My much loved auntie went onto the LCP at the end of her life ...she was dying from terminal cancer. The district nurses were fabulous with her....the LCP wasn't discussed with her when they commenced her on it as she was largely unconscious by that point. It was discussed with us as her family though. They did not withhold food or fluids but neither did they force it into her....my auntie by that point wanted nothing more than a Callipo lolly ...half in the morning and half later. They did not withhold her medication either...pain relief was given as needed and prescribed.

My auntie died peacefully with us holding her hands...it was as peaceful and as good a death as it could be.

I have been a nurse on elderly care wards and have seen terrible things in my time....notably invasive treatment on people dying ...it added nothing to their quality of life or to the length of that life. How much kinder the LCP would have been....eat and drink what you want and when you want.....pain relief when needed and good nursing care. But it should not be used unless a patient is already dying and then only to ensure the patient is kept comfortable....that's what happened for my aunt....and my Uncle when he was dying.

elastamum Fri 01-Feb-13 15:51:19

I read the OP's response and the issue of funding her care struck me. This is exactly what happened to my aunt. She was state funded in a care home. She had been the subject of a long running dispute between us and the trust regarding funding. She had no money of her own as all her wealth had been spent on care and was gone, and no children of her own. So they were trying to get her extended family to pay for her. At one time they even tried to discharge her into my care as a privately funded patient.

As soon as she got an infection, we were told she was dying and asked permission to withdraw food and fluids. This was'nt the case and when I made it clear I didnt consent and was prepared to challenge their judgement they backed down and she recovered and lived on.

The issue was'nt with the LCP as such, but that as an old lady with incurable demntia she was seen by the trust and social services, to be using up resources that someone thought would be better spent elsewhere, so they wanted her gone. sad

Piecesofmyheart Fri 01-Feb-13 15:52:22

Claig - what happens when you 'trickle' fluids into the mouth of a patient who is unable to swallow because they are in the terminal stages of their illness? Where does that fluid go? What happens when you 'pump' IV fluids into a patient who is unable to swallow but is suffering from CCF ? Where does THAT fluid go?

'The hospital concerned has been paid more than £600,000 in the last two years to hit targets for the number of patients who die on the Pathway, according to documents uncovered by the Mail. '

I cannot WAIT to see these documents. Really and truly cannot WAIT!

JakeBullet Fri 01-Feb-13 15:52:54

...but we have chronic understaffing in hospitals and claig has a good point about it being monitored. I would feel awful as a nurse if a patient suffered more than they needed to.

claig Fri 01-Feb-13 15:55:19

'what happens when you 'trickle' fluids into the mouth of a patient who is unable to swallow because they are in the terminal stages of their illness? '

But Mrs Greenwood was denied water and she wasn't in that state.

What happens when you deny water to people who are compos mentis and not in that state? They die.

JakeBullet Fri 01-Feb-13 15:58:55

When my grandmother had a stroke they fed her water with an added thickener. It can still be done....even with patients whose swallow reflex is damaged.

claig Fri 01-Feb-13 15:59:59

'As soon as she got an infection, we were told she was dying and asked permission to withdraw food and fluids. This was'nt the case and when I made it clear I didnt consent and was prepared to challenge their judgement they backed down and she recovered and lived on.'

This is exactly it. What about people who have no relatives or relatives who are all-trusting and all-believing in their NHS trust and we have seen some of the disgusting scandals at some of our trusts.

And then you throw financial incentives into the mix.

It needs investigating and I am glad that they are going to do so.

elastamum Fri 01-Feb-13 16:02:27

The problem isnt the LCP as such. It is how we value and treat our elderly population. Our society sees the elderly as a 'problem' rather than a treasure.

And we all have an interest in improving how they are treated when at their most vulnerable, as one day they will be us.

My mothers end of life care was first class, with her own nursing support at home, but it cost us £30k. For me it was worth every penny - but most people dont have that level of choice or control over what happens to them

JakeBullet Fri 01-Feb-13 16:03:18

Absolutely it needs investigating....the LCP is supposed to improve people's quality of life while they are dying....NOT send them off. It seems that there is widespread confusion about when it is appropriate to use and how it should be see.

Piecesofmyheart Fri 01-Feb-13 16:05:50

At work this week, I am looking after 2 terminally ill patients whose rooms are side by side One has terminal cancer, the other has end stage COPD and hasn't recovered from their most recent chest infection.
Both patients are dying. Yesterday, with the assistance of a colleague, I provided personal care for both patients. I helped them with their toileting needs and washed and dried their skin. I changed incontinence pads and I assisted them with oral hygiene, using mouthwash and synthetic saliva gels. I helped both of them take sips of thickened water from a lidded beaker. I moved both of them gently up the bed using handling aids and assisted one patient to change position when they indicated that they weren't comfortable.
I administered one dose of sub cutaneous diamorphine to one patient because of severe pain. it worked really well and the patient was painfree within 20 minutes. I also administered a dose of a drug which helps to dry up chest secretions.
I sat with a family member and held her hand while she talked about how she was going to help her grandchildren come to terms with what lay ahead.
I rang a chaplain at the request of another family member and stayed with the famlily whilst the sacrament of the sick was given (I don't practice any religion)

At the end of my shift, when I was ccompleteing my notes, one of those patients was on the LCP. The other patients daughter had specifically asked for her mother NOT to be placed on the LCP and specifically quoted the media when discussing it with our consultant.

Which patient is which ? Who is on the 'death' pathway and who isn't?

claig Fri 01-Feb-13 16:07:21

Yes, and it is not impoosible that financial incentives may lead to the wrong decisions; decisions that are not in the interest of the patient, but in the interest of the Trusts.

Patients and families have spoken up. Some of the media has listened to their voices. Now a review has been instigated. People won't remain silent. Good on Cheryl for being part of a facebook group. People who stand up now protect us all in the future.

Piecesofmyheart Fri 01-Feb-13 16:09:47

I'm not talking about Mrs Greenwood - I am confident that her case will be fully scrutinised and investigated by the review. If her story is true, those responsible for her care need to be able to account for their clinical decisions. To tar the whole of the LCP as a 'death' pathway because of a few isolated stories reported in a newspaper not known for its impartial reporting of NHS issues, is naive and irresponsible.

Can you please answer my question ?
'what happens when you 'trickle' fluids into the mouth of a patient who is unable to swallow because they are in the terminal stages of their illness? '

claig Fri 01-Feb-13 16:11:28

'The other patients daughter had specifically asked for her mother NOT to be placed on the LCP and specifically quoted the media when discussing it with our consultant.'

That is why we live in a free country with a free press. It is teh media coverage that has probably led to the review and it is the media coverage that will continue the scrutiny and continue asking questions and listening to teh stories and experiences of families. In the end it is teh media, on behalf of all of us, that will force change to give us all the best treatment.

LengLogs Fri 01-Feb-13 16:11:42

Of course there should be a review if HCP's are using it innacurately. There should be more training for every HCP who uses the LCP.

But to say it should be banned completely is just as frightening.

We have had the training on our ward because of the type of patients we nurse. We also have dedicated palliative care teams who review and assess our patients who are on a care pathway. It is certainly used correctly and for the right reasons where I work.

As someone has posted above, patients are known to come off it if their condition improves.

Food and fluid are NEVER withdrawn, the families and patient, if they are concious and clearly understand, are informed of the risks of aspiration of continuing with food/fluids. The only time it is stopped is when the patient starts to choke. Then we will stop with the family/patients consent for a short while, then commence intake if they wish.

claig Fri 01-Feb-13 16:13:31

It is teh media that highlights postcode lotteries and publicised the shocking treatemnt of MP Ann Clywd's husband in hospital. Without teh media, ordinary people would have no voice at all; they would have no chance of being heard and no chance of being listened to.

claig Fri 01-Feb-13 16:17:07

'I'm not talking about Mrs Greenwood - I am confident that her case will be fully scrutinised and investigated by the review.'

Well I am talking of Mrs Greenwood and extrapolating to the many like her who did not have families who pushed and pushed and gave water themselves. Some of those people, just like Mrs Greenwood, are probably now gone and unlike Mrs Greenwood, they will not be able to plan a worldwide cruise.

Sirzy Fri 01-Feb-13 16:20:30

People like Claig seem to be picking up on bad care and using that to try to discredit LCP which is a shame as the LCP allows people to have a comfortable, dignified death and who wouldn't want that for a loved one who was dying?

Instead of trying to make out the problem is the LCP why not push for better training and to ensure that mistakes don't happen.

claig Fri 01-Feb-13 16:26:32

They are holding a review into the LCP because of the terrible cases that have been made public. We will find out, hopefully, why these things have been happening, and hopefully they will be rectified. The Daily Mail reported that thousands of patients are put on it without family consent. This is not right. That is why an investigation is being carried out, and it seems that the financial incentives will also be looked at.

'Instead of trying to make out the problem is the LCP why not push for better training and to ensure that mistakes don't happen.'

Instead of trying to make out there is no problem, let's investigate it and listen to the stories of families whose relatives have been on it.

claig Fri 01-Feb-13 16:29:16

The media told us about the DNR (Do Not Resuscitate) notes that were on patients' notes without family being aware.

Let's make sure that there is no bad practice going on.

Sirzy Fri 01-Feb-13 16:32:52

out of interest Claig do you believe everything the media tells you? That seems to be the only source for all the claims you are making. Generally the media aren't known for providing balanced arguments.

claig Fri 01-Feb-13 16:32:58

Let's have open, public scrutiny, let's declare financial incentives, let's discuss what is going on with DNR notices and dehydration and withdrawal of fluids; let's make sure there are no more scandals of shocking care like there was in Stafford. Let's not stick our heads in the sand and say there are no problems. We are dealing with people's lives and nothing is more important than that.

LengLogs Fri 01-Feb-13 16:33:23

Well I knew the DNR would crop up hmm

That's the Daily Mail for you!

claig Fri 01-Feb-13 16:36:13

'out of interest Claig do you believe everything the media tells you?'

Certainly not. I don't believe the Guardian on climate catastrophe and anthropogenic climate change.

But I believe ordinary people, not spin doctors; I believe the Greenwoods and many other families who have had stories printed in teh papers. I don't believe Stafford Trust NHS bosses; I believe patients.

claig Fri 01-Feb-13 16:38:59

'Well I knew the DNR would crop up'

Do you think the Mail is lying about Do Not Resuscitate notices? You don't believe that people have been put on them unneccesarily without informing their families?

LengLogs Fri 01-Feb-13 16:43:33

The problem with that claig, and many of the Doctors and Nurses I have had this conversation with all think the same, is that anyone can go to the papers and make assumptions and accusations against the NHS. The more shocking the better, it sells papers.

What the media doesn't do, is report it from the individual HCP's side. We can't comment publicly because of patient confidentiality.

I seen written complaints against some of my colleagues that are outrageous accusations with threats to go to the media. The nurses can give their side during an investigation but it is never made public even when there is proof of no bad practices.

Sirzy Fri 01-Feb-13 16:44:32

Because of course families never lie, or stretch the truth and they only ever do what is in the best interest of their relative don't they. There are 2 sides to every story and to believe one side without knowing the other is daft and where media often fail because they don't want to present a balanced argument they want to sensationalise things.

LengLogs Fri 01-Feb-13 16:47:20

Exactly Sirzy

OldLadyKnowsNothing Fri 01-Feb-13 16:50:27

Just as a matter of interest, if a patient (with full mental awareness and capability) requested DNR, would medical staff have to discuss the matter with the family?

claig Fri 01-Feb-13 16:51:34

'The problem with that claig, and many of the Doctors and Nurses I have had this conversation with all think the same'

Of course they think that, they don't want to be held to account by the people, nbut it is teh people who pay their wages. They don't want to pick up a paper and read of the shocking treatment given to patients in Stafford and elsewhere or hear how furious and disgusted MP Ann Clywd was by teh lack of care given to her dying husband. Well tough, that is why we have a great press that stands up for people and even for MPs like Ann Clywd and tells us what goes on in the service that we all pay for.

' We can't comment publicly because of patient confidentiality.'

When patient's have publicly identified themselves and challenged shocking care, why hide behind patient confidentiality. Patients have to spend years taking these officials to court and then often get small payouts. Let's have a system like the United States that holds people who give poor treatment to account. That will stamp out the scandals that are so frequent in our hospitals. That will ensure that DNRs and LCP cannot be given to patients unless their families give consent.

Piecesofmyheart Fri 01-Feb-13 16:56:43

So which one of my patients is on the 'death' pathway Claig ? Given that a document reportedly makes SUCH a monumental difference to thousands of dying patients every day, it should be easy for you to identify which patient is which surely?

And you still haven't answered the question about fluids........

And with regards Mrs Greenwood, when are the NMC and GMC disciplinary hearings due to be held?

LengLogs Fri 01-Feb-13 17:00:56

Not hiding behind patient confidentiality at all claig. I hate it when people say that because its such a bullshit response. If you were a HCP you would know we would lose our jobs on the spot if we commented publicly on an individual case that we were involved in.

Anyway, I'm off this thread. While I've been working helping the Trust earn money by hastening death, I've neglected my housework.

claig Fri 01-Feb-13 17:03:01

'And with regards Mrs Greenwood, when are the NMC and GMC disciplinary hearings due to be held?'

My guess is probably not quick enough.

Pieces, I don't know who is on the pathway at your hospital. I just hope that you give them water when they need it.

I am not an expert on fluids, but from what MP MNorman Lamb said, it seems that water has been withdrawn from people who are compos mentis and he found that disturbing. That is what disturbs me, why doesn't it disturb a nurse like you too>

claig Fri 01-Feb-13 17:05:40

'If you were a HCP you would know we would lose our jobs on the spot if we commented publicly on an individual case that we were involved in.'

Why is that? Probably due to the legal apsect and teh fact that what you said might jepoardise teh Trust's defence. It's more likely to be to protect teh Trsut than protect the patients.

LadyBeagleEyes Fri 01-Feb-13 17:06:07

My mum died last May in a Care Home, she'd only been there a month after weeks in hospital.
She was doubly incontinent, had dementia, and had stopped walking on her zimmer, she just gave up trying to move at all.
She had a urine infection then a lung infection and was being treated by antibiotics.
She was refusing to eat (she was six stone) and was being given water which the staff had to sit her up to take.
She died in peace in her sleep, if we'd been offered the LPC, even though it would have been the hardest decision I'd ever have had to make, I would have said yes.
I know she was ready to go too, and I know she's now at peace, and not this husk of a human being being forced to live because of some misguided 'love' on our (the families) part.

colleysmill Fri 01-Feb-13 17:15:40

My mum was on the LCP 6 years ago - she had terminal ovarian cancer. She declined very quickly after being admitted for bilateral kidney infections - the one dose of chemotherapy she have sent her into renal failure.

As she began to lose consciousness we agreed with the medical staff to use the LCP. Iv fluids were removed when her insitu cannula failed and actually this was a relief. Watching the staff desperately trying to find a viable vein in her poor body was tortuous - there literally wasn't any way to administer one anywhere. It meant no more futile prodding and poking

The LCP in our case gave my dear mum a better quality of life at the end, she had her care needs met and seemed to be painfree at last. She quietly slipped away one evening, the end of a bloody awful 4 months.

The LCP is a pathway - and pathways are really only as good as the people administering them. My mum was very clearly at the end so there was little doubt about any chance of recovery. The staff were truly marvelous and gave us the space and time to say our goodbyes.

I hope in the review they include some positive stories as well. The positive ones never do make it into the spotlight.

claig Fri 01-Feb-13 17:17:57

Message withdrawn at poster's request.

Good, though sad of course, to hear of your experiences LBE and colley.

I think they add a much needed perspective. You're right colley that the positive stories never do make the spot-light.

colleysmill Fri 01-Feb-13 17:34:37

I wonder if it is more difficult deciding when the end is the end in older patients?

My mum was young when she was diagnosed (50) and went from a vibrant woman to end stage very rapidly. Her diagnosis was clear and her prognosis was very poor after the results of her first op and far worse after her second.

Without wishing to be flippant it isn't something you announce in the paper - mother of Colleys died peacefully in her sleep on the LCP after a short illness!

I'm so sorry you lost your Mum so early Colley sad

colleysmill Fri 01-Feb-13 17:42:00

Actually I agree claig about dnr but from a different position - my grandfather was given resuscitation whilst under a DNR. The nurse was a 1-1 didn't know his resus status and they only stopped when a family member started shouting at the team.

Bloody awful situation which should never have occurred.

colleysmill Fri 01-Feb-13 17:44:57

Thanks juggling bloody bastard disease cancer.

XBenedict Fri 01-Feb-13 17:45:40

My grandfather was DNR after being diagnosed with AML and when I saw it on his notes I was horrified. After asking my mum if this was something she and my Nan had agreed they said they'd never been consulted. I was fuming, he died shortly afterwards, slipped away peacefully - I'm so glad he was not for resus as are the rest of the family.

meddie Fri 01-Feb-13 17:55:26

Why is a DNR a 'quasi death sentence' Claig?
Do you actually understand what that order means?
It doesn't mean actively kill a patient or stop treating a patient. It means in the event of the patient dying (most likely from the disease or illness they are suffering from ) then no attempt should be made to try and bring them back,
Resus does not cure the illness that caused their death or make them better. If they survive at all, which if you look at the percentages of successful resuscitation is actually quite low, then you have bought them back to continue to suffer from whatever illness they had, with a few broken ribs thrown in, multiple needles jabbed into them and the possibility of brain damage.
The only time it is likely to be successful is when the condition that caused the arrest is a treatable one, ie due to abnormal heart rhythmn that can be shocked or loss of fluids which can be replaced (for example in shock or bleeding)
As for the case you highlighted, the woman in question had terminal lung cancer and a broken neck? If she passed away from this illness it is the humane thing to do not to jump on her chest and try bring her back to suffer a bit longer.
I understand families find it hard to let go of loved ones, that is why a DNR order is a medical decision, as they fully understand the consequences of attempting it and have no emotional attachment which may cloud their decision.
But family and patients should always be aware that the order exists and the reasons for it.

claig Fri 01-Feb-13 17:57:44

It is about accountability. Doctors and the NHS should be accountable to the patients. We can't have secretive decisions about putting people on DNRs and LCPs which can mean the end of people's lives without gaining patient and family consent.

One day it will all change. The DNR looks like it is already being challenged under European Human Rights Law. Eventually the system will be overhauled and accountability to patients and families will be enforced.

meddie Fri 01-Feb-13 18:01:50

Claig, people die of illness and disease, mostly stuff that isn't treatable and nothing you could do would save them.

What exactly is the point of attempting resuscitation in these cases?

Are you saying that we should attempt CPR on every patient who dies irrespective of the reason that caused their death?

colleysmill Fri 01-Feb-13 18:04:13

In my case the dnr was discussed with immediate family and a decision made jointly - not an easy one. This was now some time ago but we did make a complaint at the time - mainly around the point that there was little reason for asking consent for a dnr if it was going to be disregarded and staff assigned to a specific patient should know something so critical.

However I do acknowledge that in the heat of the moment the inclination would be to resus if there was any uncertainty.

XBenedict Fri 01-Feb-13 18:05:24

I disagree, sometimes the family aren't in a position to make an appropriate decision. If I had been asked by the medical team whether I would be in agreement with DNR I would have for my grandfather I would have said 100% not, I want EVERYTHING done for him, EVERYTHING! Entirely inappropriate.

claig Fri 01-Feb-13 18:08:33

Yes I think you are there to save lives and should try your best to do that and that includes resuscitation for people who have gone into cardiac arrest for whatever reason.

'people die of illness and disease'
yes, but when people are in hospital, they don't expect to have secret notes written into their notes which say do not resuscitate this person if they have a heart attack.

On how many people is resuscitation tried in the NHS per year and what percentage is successful?

meddie Fri 01-Feb-13 18:13:35

If the arrest is witnessed then approximately 22% survive
If the arrest is not witnessed ie you come across a patient already in arrest then the survival is approx 1%
If totally depends on what caused them to die in the first place, if its due to their organs shutting down due to their illness then no amount of CPR will fix that.these are the cases that DR's will call DNR on, as its futile. CPR is not a treatment.
If its due to a sudden abnormal heart rhythm then threres a chance that a shock delivered soon enough can reverse that.

Sirzy Fri 01-Feb-13 18:13:46

So people should be resuscitated even if that's not in the best interest of the patient? Either because they have specified they dont want it or their condition is such whereby they will die anyway and have no quality of life?

meddie Fri 01-Feb-13 18:16:29

http://en.wikipedia.org/wiki/Cardiopulmonary_resuscitation#Effectiveness

gtg pick up relative, but maybe read that to get a better idea of what CPR actually is.

claig Fri 01-Feb-13 18:17:43

I think it is dangerous to give medical staff the power to make life and death decisions without consulting patients and families, I think it changes the whole doctor-patient relationship and can lead to a breakdown in trust of teh system which is paid for by the patient.

My guess is that legal challenges against an informal DNR system may well be upheld and then a more formalised system will need to be introduced eventually. It is about patient rights and doctors being there to treat patients and do their utmost to save their lives.

claig Fri 01-Feb-13 18:20:24

Sirzy, I said that the patient and/or family should give consent. It should not be done in secret without their consent.

claig says "Yes, you are there to save lives"

Well, I think HCP's are there to provide holistic care from birth through to and including death to the patient (or substitute other word !) and their families.

So, not always to "save lives" though this can often be the case.

XBenedict Fri 01-Feb-13 18:30:01

I think this area has changed so much. My grandfather died in 1992, I was a second year student nurse and like I said earlier in my post his DNR was done without consulting the family - for us thank goodness!

20 years later I've just finished my Return to Practice course and there are now much stricter criteria relating to DNR, in our trust it cannot be done without family involvement, there are "ceilings of care" that can be used to expand on a DNR notice and of course the LCP to be used where appropriate - again in our trust not without family involvement. I thought I was all done with so much more dignity and empathy than when I left (and also soooooooo much more paperwork!)

Piecesofmyheart Fri 01-Feb-13 18:30:54

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

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

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

claig Fri 01-Feb-13 18:31:01

Message withdrawn at poster's request.

XBenedict Fri 01-Feb-13 18:34:02

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

claig Fri 01-Feb-13 18:39:48

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

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

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

claig Fri 01-Feb-13 18:41:53

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

LengLogs Fri 01-Feb-13 18:52:18

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

Seriously, stop reading the daily mail.

WynkenBlynkenandNod Fri 01-Feb-13 18:53:46

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

Sirzy Fri 01-Feb-13 19:00:28

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

claig Fri 01-Feb-13 19:08:00

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

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

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

Aerobreaking Fri 01-Feb-13 19:08:49

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

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

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

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

Aerobreaking Fri 01-Feb-13 19:13:57

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

Sirzy Fri 01-Feb-13 19:15:58

Good post aerobreaking

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

claig Fri 01-Feb-13 19:18:12

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

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

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

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

claig Fri 01-Feb-13 19:21:35

Aerobreaking,

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

colleysmill Fri 01-Feb-13 19:21:40

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

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

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

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

LengLogs Fri 01-Feb-13 19:23:14

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

claig Fri 01-Feb-13 19:25:33

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

'One of the leading critics, hospital consultant Professor Patrick Pullicino, said: 'Given the fact that the diagnosis of impending death is such a subjective one, putting a financial incentive into the mix is really not a good idea and it could sway the decision-making process.'

5SpeckledFrogs Fri 01-Feb-13 19:26:22

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

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

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

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

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

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

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

5SpeckledFrogs Fri 01-Feb-13 19:26:22

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

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

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

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

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

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

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

Sirzy Fri 01-Feb-13 19:26:54

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

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

Good post Aero.

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

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

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

claig Fri 01-Feb-13 19:30:09

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

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

Aerobreaking Fri 01-Feb-13 19:31:39

'Twenty years ago there was no LCP'

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

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

claig Fri 01-Feb-13 19:35:14

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

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

claig Fri 01-Feb-13 19:41:36

She was taken off it after she recovered due to her family dripping water to her against the nurse's advice. If she had been kept on it then she would never have survived because they removed her fluids and that will lead to death.

She is not the only case, and they are not the only family who have compalined, which is why I suspect that there is now no altrnative but an inquiry into it.

The Mail and Telegraph have made it public and it can't be hidden away now. The secret that half of people on the LCP were not told is now out in the open.

Now we will discover why and if there was anything to hide and what if any financial incentives were involved.

Aerobreaking Fri 01-Feb-13 19:45:47

Claig, are you purposefully ignoring what everyone is saying? If the LCP had been implemented correctly she would have been given water and therefore after showing signs of improvement would have been taken off it.

'The secret that half of people on the LCP were not told is now out in the open.'

Claig, how many people do you think get put on the LCP after they are already unable to communicate, already in the throes of dying. Often the patients are not able to know, it is not some wilful secret being kept.

Aerobreaking Fri 01-Feb-13 19:52:37

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

Juggling, it's a difficult one. I think it all comes down to the process of dying. There are subtle behavioural changes that take place when someone is beginning to die, normally a general withdrawal from the world which often includes not actively eating/drinking. Often people know when a loved one is beginning to pass over, even if they can't put their finger on why. Ultimately there is no way of knowing definitely if someone is dying - no blood test or definitive sign we can look for - so it may have been that your friend was not requesting water because his mind was already beginning to make the transition, more of a subconcious change than an active decision. I'm not an expert but I think this is something to do with it.

LengLogs Fri 01-Feb-13 19:56:43

As you keep pointing out claig, she WAS taken off the LCP when she improved. That is what everyone is trying to tell you, it is not used for killing people off.

The issue with the nurses telling the family not to give fluids is a poor understanding and poor training of the LCP. Its a different issue.

Why can't you grasp that?

claig Fri 01-Feb-13 19:58:16

This is from Norman Lamb MP. It shows that it is not a one-off.

‘Why it is that in many hospitals, patients are being denied food or drink, even though the guidelines say this should not happen? It is deeply disturbing and needs to be properly understood and investigated.'

'Claig, how many people do you think get put on the LCP after they are already unable to communicate, already in the throes of dying. Often the patients are not able to know, it is not some wilful secret being kept.'

That's why I expect teh medical staff to ask for the family's consent and reports say that many families are not asked for their consent.

Coming back to the DNR case. The article said that the notes of the woman who died said DNR and that she agreed and that 3 of her 4 daughters also agreed. The daughter denied it. What type of informal casual system is it that does not get approval in writing with a signature of patient and family before making critical decisions such as DNR. Are we expected to just take teh word of whoever wrote teh note that consent was given? It is incredible how lightly this seems to be managed.

This is people's lives we are talking about and there must be tight and open procedures.

claig Fri 01-Feb-13 20:01:45

'she WAS taken off the LCP when she improved. '

They withdrew her fluids. She would never have improved and been taken off and subsequently lived if her family had not taken things into their own hands and dripfed her water.

Do you think that that is acceptable care? I don't and I am glad that a review of teh LCP is now being undertaken. probably after pressure from the Mail and Telegraph and the brave families who have shared their stories.

colleysmill Fri 01-Feb-13 20:01:55

In my experience the dnr form was needed to be signed by the medics and consenting next of kin.

LCP - was there a form? Not sure, if there was my father would have signed it.

LengLogs Fri 01-Feb-13 20:11:23

<<bashes head against brick wall>>

Piecesofmyheart Fri 01-Feb-13 20:31:20

'I don't know the ins and outs of your fluid example.'

Yet you are banging on and on and on and on and on about fluids being witheld. When you don't have any understanding (or willingness to find out) about WHY fluids are not SAFE to administer for the very significant majority of patients in the terminal stages of their illness.

When you are arguing that something is fundamentally flawed, you need to at least understand the mechanics of it at a basic level.

claig Fri 01-Feb-13 20:37:26

'WHY fluids are not SAFE to administer'

They were safe to administer for Mrs Greenwood, but the medical experts didn't want to. I don't believe that all of the people who have fluids removed on the LCP have to have them removed, just as Mrs Greenwood didn't need hers removed. Fortunately her family (not medical experts) took over and saved her life.

Sirzy Fri 01-Feb-13 20:44:34

FFS will you shut up about Mrs Greewood.

Nobody has denied that from what you have said she was treated shockingly but that is POOR CARE NOT THE LCP.

LadyBeagleEyes Fri 01-Feb-13 20:48:54

Claig is a poster that lives on conspiracy theories.
What we decide for our beloved relatives at the end of their lives, when they can no longer make that decision themselves, will be the hardest decision we'll ever make.
Claig, unless you've been through this, please give it a rest.

claig Fri 01-Feb-13 20:52:24

Don't you understand that these things are happening under the guise of LCP. That is what the Mail reports about and what many families have said. They are complaining about LCP, they don't believe it is the panacea that you pretend. Now there will be a review into it to find out what exactly is going on.

Stop burying your head in the sand, join the people, ask questions and demand answers.

claig Fri 01-Feb-13 20:57:57

I have had relatives die in hospital and their treatment was not good.

I believe Savile and his hospital charity was a conspiracy. I agree with the Mail and Telegraph, and when it eventually all comes out, you will follow their lead too.

claig Fri 01-Feb-13 21:04:13

They call it a pathway. Ask yourself where it leads?

Aerobreaking Fri 01-Feb-13 21:11:56

It leads to death, claig. I don't think anyone, particularly those of us who work in this area, ever forget that. I'm not sure what your point is?

Fishandjam Fri 01-Feb-13 21:12:10

FWIW, my mother is in a care home suffering from Alzheimer's Disease. She is currently well-ish, so unlikely to need end-of-life care just yet. But I have told the staff that I wish for her to be placed on the LCP when the time comes, and that she is also DNAR. This is what she and I discussed many, many times over the years, before she became ill. It's her wish, and mine, and I feel reassured that I am carrying out her wishes.

claig, please do give it a rest about Mrs flipping Greenwood.

Itchywoolyjumper Fri 01-Feb-13 21:15:59

Claig The most important thing about the LCP is that care has to be carried out and documented every 4 hours hours or more. No one is trying to deny that there are instances where the care of a patient has fallen well below what should be expect but the LCP actually helps to stop this.
Like Sirzy says its poor care and poor implementation that's the problem, not the LCP itself.
Please don't try to make parallels with Jimmy Saville, that's quite disgusting.

claig Fri 01-Feb-13 21:21:15

'It leads to death, claig. I don't think anyone, particularly those of us who work in this area, ever forget that. I'm not sure what your point is?'

Sorry, Fishandjam, I have to mention Mrs Greenwood again.

My point is that it leads to death in the majority of cases and that once you are placed on it (half of people without being told that they are on it) then you are on a one-way path in the majority of cases. That was teh path that they placed Mrs Greenwood on, but her family dragged her out of the path and back to life.

'“The fact is that there is no scientific evidence to support the diagnosis of impending death and there are no published criteria that allow this diagnosis to be made in an evidence-based manner.'

but too bad for you if they decide to put you on it without your or your family's consent, or if they write DNR without telling you.

'Last night Mrs Greenwood said she is angry that doctors gave up on her and has welcomed the announcement of a review into the ‘end of life’ treatment regime.'

One day when it is all revealed you will thank people like Mrs Greenwood and Cheryl for standing up and informing us of what is happening in the care system.

stella1w Fri 01-Feb-13 21:22:42

Op here. Since MNHQ have ignored my request to delete my own thread despite the hijacking and since they haven,t pmd me as promised, I,ll update.
My friend today asked the HV for an air mattress for her mum and was told she did not qualify because she was not dying and was mobile. Yet the dr has told the carers to stop giving her food because she is dying. It is shocking.

claig Fri 01-Feb-13 21:25:31

I mentioned Savile only because LBE said I believe in conspiracies.

They are going to review LPC. That is not because they think there is no problem with it. They are probably reacting to the pressure and criticism of it from newspaper columnists and families who have shared their experiences.

Fishandjam Fri 01-Feb-13 21:26:25

OP, it does sound shocking - at the very least there's a major and unexplained difference in the opinions of the HV and GP. I second the posters who've said your friend should get a second opinion.

LAK11 Fri 01-Feb-13 21:38:55

CBA to read the whole thread. I know that last week my mum was offered the LCP. She was in renal/cardiac and lung failure. There were many options - none of which would have made any difference. She chose to refuse all further treatment. LCP was an option and as explained by Doctor, a way of making her more comfortable without giving her life prolonging drugs. We never got to that point as she died last Tuesday. LCP would not have prolonged her life, it would have made a not so old lady a bit more comfortable. We were happy with it - do not read the Daily Fail...... Hope that helps.

claig Fri 01-Feb-13 21:49:05

OP's friend was not consulted about LCP for her mother. She was told. Doctor has refused water and food it now seems.
Her mother is still mobile.

She wonders if she has any rights.

What do you think she should do - just accept it?

Of course it is shocking and there must be a way of patients and families having rights, but I don't know what it is or if it is possible.

Does anyone know about rights?

Piecesofmyheart Fri 01-Feb-13 21:57:07

You and Cheryl are doing a great job of articulating your arguments Claig grin

'They were safe to administer for Mrs Greenwood, but the medical experts didn't want to. I don't believe that all of the people who have fluids removed on the LCP have to have them removed, just as Mrs Greenwood didn't need hers removed. Fortunately her family (not medical experts) took over and saved her life.'

And again - WHY do people have fluids removed ??? Give you a clue - the answers can be found further up this thread....

claig Fri 01-Feb-13 22:04:12

Message withdrawn at poster's request.

LAK11 Fri 01-Feb-13 22:10:12

My mother was not refused fluids or food, nor drugs, I thing it is aplan that is for people who will not survive no matter what, so they reduce the input of drugs etc. That is becuse their bodies can no longer cope. In out cse we did not get that far as mum refused all further treatment. Eventually accepted pain relief and then slipped away.... All is subjective. Hard as hell... we all have to make our choices and arguing about LCPwithout any knowledge is pointless. I would havechosen it if she had not died beforehand...
.

LadyHullyEyes Fri 01-Feb-13 22:11:02

Claig ,for anyone going through the decision of what to do with their failing, dying elderly parents, I really hope they don't stumble on this thread.
I don't believe you've been through this, and I hope you never do.
I deep down wanted my Mum to die, her last month was not a life.
I also desperately wanted her to stay alive and get better, but it wasn't going to happen.
As I've said above, if she hadn't died naturally, the LCP would have been an option if it had been offered.

claig Fri 01-Feb-13 22:14:55

I haven't been through the LCP, but have had relatives die in hospital.

Cheryl and her dad have been through LCP. They know more about it than most people on here.

LAK11 Fri 01-Feb-13 22:17:28

I think that is bollocks, we were consulted twice, but only after my mum had reufsed treatment. They do not refuse water. That is a myth. They do offer food but up to patient accept, you actually need to be there rather than reporting what your friend says.... my mum was up for LCP but died last week, she would have been fine on it.... If you are not an 'eye' witness, with first hand experience, perhaps you should not bother continuing with this post.

LadyHullyEyes Fri 01-Feb-13 22:22:13

I think that there's rather a lot of people on here that have had to deal with their dying elderly parents Claig.
It didn't work for Cheryl and her Dad, fair enough.
If it was me, bring it on.

Sirzy Fri 01-Feb-13 22:22:38

hey know more about it than most people on here

Considering the wealth of knowledge of posters on this thread from both a personal and proffessional viewpoint I very much doubt that.

claig Fri 01-Feb-13 22:28:30

'If it was me, bring it on.'

To each their own. But there will be a review of it partly due to disturbing cases of fluids being removed when people were compos mentis and to look at the role that financial incentives may play,

It wasn't right for Mrs Greenwood and she is a survivor.

I have listened to the caring healthcare professionals on here, but on balance I am with Cheryl and Dr Tony Cole

'But Dr Tony Cole, chairman of the Medical Ethics Alliance pressure group said: 'If death is accelerated by a single day that will save the NHS nearly £200 – that is the estimated cost of a patient per day in hospital.
'My position on the LCP is that it is inherently dangerous and unnecessary.'

claig Fri 01-Feb-13 22:31:50

And I agree with Professor Pullicino

'One of the leading critics, hospital consultant Professor Patrick Pullicino, said: 'Given the fact that the diagnosis of impending death is such a subjective one, putting a financial incentive into the mix is really not a good idea and it could sway the decision-making process.'

LaVolcan Fri 01-Feb-13 22:37:38

Message withdrawn at poster's request.

LadyHullyEyes Fri 01-Feb-13 22:42:59

If I said what I really want to say to you on this subject, I'd be deleted Claig.
But WTF, you are a heartless cow, who seems to have taken on the case of a stranger to boost your somewhat puzzling views.
How dare you come on here and lecture to people who are going through the worst thing possible, on theory alone.
Fucking live it and then decide.

hiddenhome Fri 01-Feb-13 22:50:57

I'm a nurse in a private care home and we only ever start the LCP when the client is showing signs of approaching death - usually for the last couple of days of their life. It is an invaluable tool for us to use to ensure the peaceful and painfree last few hours/days for the client. I have never seen it misused or even used prematurely. If people are capable of drinking then they are given drinks although most are unconscious by this stage due to natural deterioration of their condition.

I don't know what is going on in NHS hospitals, but we always use it appropriately and I would expect hospices do too.

claig Fri 01-Feb-13 22:56:32

I am not heartless, but yoiu are rude.
I agree with Dr Tony Cole and professor Pullicino. That's not theory alone. I listen to people's experiences and read newspaper articles and make my judgements.

We have seen scandals in our public life, and one day we may discover that some lay behind the poor treatment of our elderly, the dehydration in hospitals and the lack of punishment for the people who were charged with their care.

LaVolcan is right about people making a fuss. That is how change happens. Newspapers and families are making a fuss and it won't disappear. That is why there is now an inquiry into it.

You can insult people who disagree with you and who care for teh rights of people who are put on these schemes without consultation, but you are fighting a losing battle. The wheels are in motion, it is out in public and an inquiry will be held. The newspapers will not remain silent and nor will the public, whatever insults and vitriol is hurled at them.

claig Fri 01-Feb-13 23:03:21

A man in his twenties phoning 999 to get a drink of water due to severe dehydration due to lack of care by hospital staff is a national scandal. These things have been going on for years and some papers have reported them.

They won't last forever, the facade will be broken down, the truth will out and the dirty underbelly of what happened and why will eventually be revealed. In the meantime, vulnerable people will continue to suffer, but one day we will end it.

mumwithovertime Fri 01-Feb-13 23:09:32

My experience ( for what it's worth ) my mum was told she had months to live,she had been living with cancer for sometime ,we knew she was dying but several times after being told she had months to live she would have pretty bad infections leaving her confused and very unwell ,on one occasion,after she had already survived longer than expected she was put on he LCP as the hospital believed she had days to live ( the cancer was finally winning ) however she continued and drink and eat with help,she had some drugs withdrawn but within the space of 1 week she went from being too ill to be moved to a hospice to being too well and off the LCP,she died 6 months later but my experience was that the LCP was used appropriately,she was not denied the basics and was taken off the plan when it became clear she was not giving up!

CleoBrown Fri 01-Feb-13 23:12:55

I've read most of this thread with interest as my uncle was on the pathway at the end of his life and its likely a near reactive will have to consider this soon.

I can only say, logically, that counting up the experiences of the people here I can see a vast majority getting comfort out of this/similar experiences rather than pain. It seems that hyperbole is clouding certain people's judgement.

There is not a conspiracy that health professionals buy into (I cannot believe that, it is ridiculous) they want the best for their patient, each is an individual and they treat them as such, every persons genuine experience on here speaks to that.

I am very sorry for everyone's loss.

LadyHullyEyes Fri 01-Feb-13 23:14:03

IME hiddenhome, the care home staff where my mum died were exactly like you.
Loving and caring, and though mum refused to eat,they made sure she kept up with liquids.
And can I just say, it was people like you that made me realise that my mum was in a good place, and took away my guilt.
I couldn't look after her, but the staff in her care home did.
We only hear the bad publicity, but there are so many ordinary women and men looking after our elderly in homes who never get the praise they deserve, and IME you are pretty amazing.

This thread is bringing back all my grief over my DM. She died only a few months ago and the HCPs were wonderful with her. But I am now beginning to doubt that we did the right thing. She wanted to die and refused all treatment. We had to agree all this with her doctors because it was what she wanted. We were weeping as we did this.

To argue against the LCP on the basis of hearsay and newspaper reports is appalling and heartless. It is not the idea of the LCP that is at fault but sometimes individual doctors and nurses who are not implementing it properly.

Can't say any more as am too upset.

LadyHullyEyes Fri 01-Feb-13 23:39:23

Gurl, You did the right thing with the information you had.
As did I, my Mum was suffering as was yours.
It was her time and she is at peace now, as is your mum.
Please don't let people like Claig upset you, I've reported her, her ridiculous theories have no place on here.

I welcome an enquiry into the LCP if only to clear up misconceptions and ensure confidence in the medical care of our dear ones.

My dMum died last year from lung cancer. She had many hospital stays, some were positive experiences, some terrible. Her final admission was in an emergency, she was there for a few days of distressing illness before she said herself she had had enough of all the treatments\investigations and wanted help. 'No more' is how she expressed it and we called for the oncall dr.

The dr gently and respectfully made sure we were all in agreement - LCP wasn't actually mentioned but we knew what was happening.

DMum was taken to a peaceful sideroom, all active treatment was stopped and we were encouraged to stay with her, beds were brought etc. As she deteriorated she stopped eating but still had sips of tea and water, she was sedated but could still talk a bit. The minister was brought on her request, cups of tea etc etc but no invasive care. As she struggled to breath a morphine pump was put in and a catheter, she slipped in and out of consciousness, until eventually she slipped away peacefully.

I can't fault the care she and we received. It was awful to experience, at times very distressing. When Dad had a moment of panic that she might recover given the chance, they turned on the sats monitor to show how much she was struggling and it gave him peace to know there was no hope at all.

Gosh, didn't mean to blurt that out. I've kept it in, but this thread has touched a nerve...

Our experience of course doesn't mean that all hospital staff are so respectful and caring...

JakeBullet Fri 01-Feb-13 23:42:09

Gurl an unMumsnetty (((((Hug)))) for you because it's hard seeing a loved one die. I have no doubt you did absolutely the right thing and made the best decisions you all could at the time based on what was happening.
I am 2 years in from my auntie's death and now I can see we made the right decisions for her when she could not. It's taken time to get to this point though

claig Fri 01-Feb-13 23:44:57

Let's see what MNHQ says. I have just quoted from the Mail and Telegraph. They are not ridiculous theories. You lead a sheltered life. You've obviously never read Melanie Phillips and other columnists.

LadyHullyEyes Fri 01-Feb-13 23:50:03

maybe
A brilliant post, and I hope it gives reassurance to all on here that have felt guilt and doubt about the most painful decisions they'll ever have to make.

JakeBullet Fri 01-Feb-13 23:50:55

Nobody should be having fluids removed on the LCP, that's not what it's about at all. I agree that bringing in a financial incentive is dangerous.....the LCP isn't dangerous and doesn't hasten death if used appropriately and properly. The cases being highlighted by claig from the media are cases where it has not been used appropriately or properly.

The dehydration issue is a separate topic and is horrific. Thankfully when my gran was very ill there was a fluid chart and she was kept well hydrated. Her fluid and calorie intake were calculated according to her weight and she was helped to get that fluid in. Keeping people hydrated and fed is not rocket science and its disgusting that it should be an issue in this day and age. Even those with poor swallow reflexes can have drinks with an added thickener.

Thanks Lady

colleysmill Sat 02-Feb-13 00:17:05

claig with regards your post including " lack of punishment for those charged with their care" are you implying that by consenting to the LCP family members should also be charged?

colleysmill Sat 02-Feb-13 00:19:33

Actually can I reword that to do you believe by consenting to the LCP family members are complicit and therefore also accountable?

claig Sat 02-Feb-13 00:22:59

No I wasn't referring to the LCP, I was referring to the people not providing water to patients who were dehydrated like the man in his twenties who dialled 999 to ask the police to help him get a drink, and the people responsible for the shocking care in places like Satfford.

claig Sat 02-Feb-13 00:26:56

I believe directors and managers should be personally liable for systemic neglect and poor care in their trusts. I believe that would change teh culture and put patient care as the top priority and ensure that mnany of these poor care scandals no longer occur.

colleysmill Sat 02-Feb-13 00:28:39

Ok thanks. I do agree that poor care should be made accountable for - but when looking at the cause accountability should be at all levels - if the problem is chronic understaffing or too large caseloads, limited equipment etc then management should also be held to account.

colleysmill Sat 02-Feb-13 00:29:19

X posts

claig Sat 02-Feb-13 00:30:17

I also think it should be made illegal to put anybody on a DNR or LCP without gaining consent or the family's consent.

colleysmill Sat 02-Feb-13 00:34:21

Would it not run into difficulty though making it a legal requirement? There would have to be contingencies for people with no family, not in contact with their family, if the family members disagreed, if the next of kin didn't have the capacity to consent?

claig Sat 02-Feb-13 00:35:05

The buck stops with the management. They make policy and are responsible for everything including cleanliness standards and quality of care. The public pays large salaries to these people and they are doing a very responsible job, but as a consequence they also have duties that they must fulfil and they need to be held accountable for the care that is delivered in their hospitals.

That will force change and checks and improve standards.

claig Sat 02-Feb-13 00:38:59

Yes, good point. For some people it may not be possible and they will not be able to have a say. But in most cases, I think the duty must be to gain consent and people should be able to decline and opt out if they are not happy with it.

colleysmill Sat 02-Feb-13 00:42:46

I don't disagree with that but the primary concern should always be the patient and their needs, if they are not able to consent themselves.

I think families should be involved and informed in the decision process but its a hell of a decision for some people and a burden they might not necessarily want to take. If you make it a legal requirement there may be instances where the families needs come first and not the patient's.

claig Sat 02-Feb-13 00:47:51

I think in most cases, people tend to do what doctors advise. But some people will not want their relatives to go on certain pathways and I think their wishes should be respected. That way we may no longer have cases of DNRs being issued without patient or family consent.

lustybusty Sat 02-Feb-13 01:02:21

claig your argument all along that the LCP is bad has been based on the fact that Mrs Greenwood wasn't allowed fluids and her family had to give her liquids. This is the fault of the Liverpool Care Pathway. Yet you then mention the case of the 20yr old who dialled 999 from his hospital bed because he hadn't been given fluids. I'm guessing he WASN'T "being sentenced to death" by the hospital? Can you not see the similarities between these two cases and that the issue is NOT the LCP, but rather over worked/under trained/uncaring/whatever HCPs (and I do know they are in the minority!!)?

LadyHullyEyes Sat 02-Feb-13 01:59:33

I had a long emotional post going on about the death of my Mum, but I deleted it
TBH I really can't be arsed. Claig, you don't get it and I hope you never will.
To make the decision about your elderly parent can never be taken lightly, we do what's best, and as many posters on here are speaking from personal experience, your examples of some stranger on the news is not a good argument.
Just bugger off and find another cause to fight for why don't you.

claig Sat 02-Feb-13 02:16:49

LadyHullyEyes, why don't you leave this thread? You're a very good person, but the subject seems to bring out the worst in you.

claig Sat 02-Feb-13 02:21:10

lustybusty, the difference is that the withdrawal of fluids from Mrs Greenwood was not an error or due to an oversight or lack of staff etc; it was policy, and the fasmily were advised by a nurse not to give her water.

claig Sat 02-Feb-13 02:39:57

'claig your argument all along that the LCP is bad'

My argument all along is that people should not be put on it without their consent or family's consent, just as I believe that no one should have a DNR note added to their files without their consent or their family's consent.

I believe it is about patients' rights and consent to approve treatment.

If a patient wants to go on it, then that is a different matter. But I don't believe that doctors should make a choice for patients without seeking consent, and I don't like the financial incentives given to place people on it. That is why I am glad that a review into it will be carried out.

Fishandjam Sat 02-Feb-13 07:04:03

You've obviously never read Melanie Phillips...

claig, with those few words you've destroyed what little credibility your argument ever had.

Piecesofmyheart Sat 02-Feb-13 07:43:57

Oh come on Claig. Your argument was 'never' about patient consent. It was a clumsy attempt to regurgitate the hysterical 'death pathway' sensatioalism peddalled by the wail. In the face of overwhelming opposition to your premise you've toned down the scary declarations and decided that actually, the LCP is ok if famil members consent to it. Does that mean that you withdraw all the allegations you made earlier in the thread aboit the motivations of HCPs and the conspiracy which exists to starve healthy patients to death by using the LCP?

JakeBullet Sat 02-Feb-13 08:01:30

I haven't read Claig's earlier posts but I do agree that there needs to be a review of how the LCP is implemented. In the case of my family it was discussed and used appropriately for a relative dying from cancer. I have no complaints.
It is clear though from some of the cases highlighted that there have been times where it has been started very in appropriately and guidelines not followed. The lack of giving fluids is a case in point....that is just very bad care and has no relevance to the LCP which does not forbid fluids or food.
Claig, I read a really good book last year called "How We Treat the Sick" which highlighted many of the issues you have raised on this thread. I believe it should be required reading for EVERYONE who comes into contact with patients. In the end people who are sick or dying just need adequate food and fluid for their needs, to be kept clean, comfortable and have their pain or other medical needs met and they need all that with warmth and a smile.....it isn't rocket science and its shocking that in this day and age we still get it so wrong.

claig Sat 02-Feb-13 08:05:58

You've misunderstood what I said. Nowhere have I said that LCP should be banned. I haven't said that nobody should go on it. I have consistently argued that it is about consent and that doctors have an obligation to gain consent and should not be allowed to place anyone on it without consent. I have made no allegations about HCPs or a conspiracy to starve patients to death.

I have said that I think the withdrawal of fluids is part of the process of causing death and hastening death. I think it is in the open, there is no conspiracy about it.

I am glad that pressure from newspapers has been a part in bringing an inquiry into it which will look at families' experiences (good and bad) and will look at cases of fluids being withdrawn from people who were compos mentis and will also look at the role that financial incentives play in the decision to place people on the LCP. Many people are placed on it without their knowledge as the Telegraph reported. I think that is wrong and why that is occurring and whether financial incentives are involved needs to be established.

claig Sat 02-Feb-13 08:11:49

'people who are sick or dying just need adequate food and fluid for their needs, to be kept clean, comfortable and have their pain or other medical needs met and they need all that with warmth and a smile.....it isn't rocket science and its shocking that in this day and age we still get it so wrong.'

Excellent point and I wholeheartedly agree with that. I think the LCP, on which some people are placed without their knowledge, removes the rights of the patient in those cases, and I think that is unacceptable. I think the number one duty of hospital staff is for care, and placing people such as Mr Greenwood on the pathway without consent is wrong. She thought the same. That is why we need it investigated and we need to uncover if financial incentives play a role.

claig Sat 02-Feb-13 08:17:16

I said to a HCP on here that these decisions and guidelines about the LCP etc are made way above her head. They are nothing to do with the HCPs who deliver treatment. The HCPs only carry out what is in the guidelines that come from above. Similarly, the financial incentives do not come from HCPs, they come from above.

HelenMumsnet (MNHQ) Sat 02-Feb-13 11:23:12

Morning. Just posting in the hope of catching the OP's eye.

OP: we have emailed you but it's clear from our inbox this morning that you haven't seen it. We will reply to your further Report to us but we want to be sure we've got the correct email address for you first.

Please can you check you mail and either reply to the mail we sent you yesterday or mail us at contactus @ mumsnet.com to let us know you haven't received that mail?

KateSMumsnet (MNHQ) Sat 02-Feb-13 12:34:45

We welcome open and robust debate about the LCP but we would ask you all to try to post with some sensitivity and respect, however strong your feelings about this.

We don't want to censor discussion but this is clearly a very difficult and emotive subject and we'd urge everyone to bear that in mind please

Veritate Sat 02-Feb-13 12:50:32

It horrifies me that, all over the country, there are reports of terminally ill people dying in pain and fear because their relatives are now spooked by any mention of the LCP and refuse to allow them to go on it. And all this is because the Mail and the Telegraph decided to start their campaign not because they genuinely care, but solely in order to sell a few papers. That is, frankly, verging on the criminal.

meddie Sat 02-Feb-13 12:56:41

Claig I fully agree that the patients should be in full agreement of and aware of if the LCP is to be instigated, in fact that is part of the LCP anyway.

The issue I have is around relatives. They should be made aware of the fact their relative is on the pathway, but the problem I have is asking them for consent. This should always be between the patient and their DR if they are capable to make this decision.

I am not allowed to walk into my GP's and ask to see my mothers/sisters/aunts medical notes nor make any decisions regarding their treatment and rightly so. they are adults and any decisions are between them and their GP.

I think bringing relatives into the decision may not always be in the patients best interest. What if the patient wants it but the relatives want everything done because they are not willing to let go, even if it means their loved one suffering? and yes it does happen and more frequently than you would expect.

Not everyone can grasp the full clinical picture and often its an emotional knee jerk reaction to DO EVERYTHING, even if that means its detrimental to the patient and will not save them anyway, just prolong their dying.

claig Sat 02-Feb-13 13:07:46

meddie, I agree with you. It should be between patient and doctor. Only if the patient is incapable of making a decision, should relatives being asked.

Sirzy Sat 02-Feb-13 13:14:35

But are relatives always in the best position to make such a decision? Will relatives always know what is best for their relation or indeed will they always want to do what is best for them? It is such tricky ground I really do think allowing them to make decisions is getting into tricky ground.

Would we allow a relative of a patient in resus in A and E to decide Edgar treatment they had?

Relatives should be kept informed but decision making is much riskier.

claig Sat 02-Feb-13 13:26:07

I think this is a complicated question and we know that there have been some cases where doctors want to end life support for people in comas and where loved ones have challenged those decisions and taken them to court. It is a question of rights and there is no easy answer.

I personally favour rights of patients and family above other considerations in most cases as I think that this ensures that financial incentives or other considerations do not interfere with the best treatment for patients.

DizzySometimes Sat 02-Feb-13 17:02:16

I agree with those on here that say that, when used well, the LCP is a wonderful way to bring dignity and peace to those who are dying. I have seen it being used this way, and I would not hesitate to consider it for close relatives of mine if I was asked (if they no longer had capacity), and if my relatives wanted to discuss it with me before making their decision, I would support them 100%.

I also agree that the patient's wishes should be what are considered first and foremost, not that 'the patients and family' deserve consideration above all. claig, when the family and patient have the same viewpoint then considering both works very well. However, as others have stated, family do not always have the best interests of their relatives in mind - sad, but true. Sometimes, these situations can bring out the worse in family and end up with family members arguing about what they feel is best for the patient, and that patient's interests get lost somewhere. I've seen that happen, and it's awful to see. And it's interesting that you talk about financial incentives - these can also make family members behave in a way that can be, quite frankly, abhorrent.

Veritate Sat 02-Feb-13 18:39:50

Classic example of the Mail using any and every opportunity to bash the LCP, and relatives not necessarily always being right: www.dailymail.co.uk/news/article-2255938/Grandfather-centre-bitter-right-life-court-case-dies-early-hours-New-Years-Eve.html#ixzz2Goex03T4.

This was a dreadful case, but the poor man was unable to breathe or speak by himself, had had a stroke and suffered multiple organ failure previously, his kidneys were failing and his blood pressure was falling disastrously - yet his family wanted him subjected to dialysis and CPR. It would have achieved precisely nothing and made his last hours hellish. I don't blame the family in any way, but I don't think the Mail is doing them any favours by publicising this case.

paulefc Sat 02-Feb-13 20:23:45

Yes it was a dreadful case, but what the hospital failed to disclose was how he ended up being in the sistuation he ended up in, he walked in to there with constipation and nothining else, and the constipation cleared with laxotives, cant say anymore on this at the moment but you will in the very near future

hotstepper1970 Sat 02-Feb-13 20:46:03

thank you kate it is a very upsetting subject ... may i also point out people have no right to discuss the case of david james ... they dont have a clue how that man suffered or how the family have and still are suffering through the lack of care and dignity with the framework of the lcp

I agree with previous posters though - that some people cannot accept death as a normal part of life or the natural end of our life journey.

The Daily Mail seems very much in that camp to me.

Also I think it's very hard to ask relatives to make all decisions (say if patient is unable to do so) - it's so natural to say please do everything you can for my mother/sister/child

I think we do almost need the doctor to say we have done everything we can now we just want to make her as comfortable as we can
- that sort of thing

hotstepper1970 Sat 02-Feb-13 21:02:13

may i ask you how are you so sure someone is not worth saving ?

Sirzy Sat 02-Feb-13 21:03:37

Its nothing to do with someone not being worth saving, its about being realistic about their condition and accepting that they aren't going to make some miraculous recovery and that its just a matter of time until they do die.

claig Sat 02-Feb-13 21:19:11

' its just a matter of time until they do die'

Time is precious and recoveries do occur. People do get better even when doctors have given up hope and said that they will die.

'“The fact is that there is no scientific evidence to support the diagnosis of impending death and there are no published criteria that allow this diagnosis to be made in an evidence-based manner."

If people are not resuscitated then all hope is removed.

It is worrying for patients that courts can decide to support the removal of potentially life-saving treatment for patients.

hotstepper1970 Sat 02-Feb-13 21:20:38

realistic ??????? yes lets be realistic for a moment.. as i havent seen any realistic comments on this thread so far on the dangers the lcp posseses ,, and who in the medical profession can determine that a patient is not going to make it ?? actually it would be interesting to know or any other profession for that matter .

hotstepper1970 Sat 02-Feb-13 21:26:46

so are you sayinbg that a patient who is beyond hope should be so cruelly sedated and given a cocktail of lethal drugs ? how can you know a patient is comfortable in death when the lcp makes sure they cannot communicate no longer .....

hotstepper1970 Sat 02-Feb-13 21:30:07

juggling .... tell me what is so natural about being given a lethal cocktail of drugs sedated so you can not communicate with your loved

colleysmill Sat 02-Feb-13 22:23:39

About 2 months into her illness (when she hit renal failure and needed bilateral nephrostomies so 2 bags into her kidneys from her back) my mum, who was very lucid at the time, turned to me and said " do you know what? If I was an.animal they would have put me down by now". And she was probably right.

Her cancer was extremely aggressive and one of the rarer ovarian kind. Her prognosis was appalling and we watched her deteriorate literally before our eyes over 16 weeks. She did rally at the point I mentioned above but was never on the LCP at that time - she was awake and responding to non aggressive treatment.

By the time she was on the LCP she was in chronic end stage renal failure, metastases bloody everywhere and slipped into unconscious. Her poor poor body just couldn't cope. The difference was quite distinctive in her case between her two very poorly periods. I don't think if we had opted out of the LCP the outcome would have been any different. The LCP did give her 3 days of peace, quiet and being comfortable.

hotstepper1970 Sat 02-Feb-13 22:25:36

dizzy do you not think cash insentives make the nhs act in a manner not always in the best interest of the patient also? what strikes me is the amounts of deaths on the lcp has more than doubled sinced the incentives have been put into place .... this framework surely goes against the ethics of the hippocratic oath .. preserve life not end it

hotstepper1970 Sat 02-Feb-13 22:38:43

Message deleted by Mumsnet for breaking our Talk Guidelines. Replies may also be deleted.

JakeBullet Sat 02-Feb-13 22:47:27

hotstepper....financial incentives have no place with the LCP...on this I utterly agree with you. However, the LCP itself if followed properly is not awful I have seen too many people whose last days were made worse with invasive and unnecessary treatment when it would have been far kinder to keep them comfortable and let nature take its course. I dont mean giving drugs to shorten someone's life but letting them set the pace....eat and drink when they want and have pain relief as needed.
No way should there be any financial incentive to this though.

Hi hotstepper - I merely said that death was a natural ending of our life's journey

I'm sorry if you've had bad experiences relating to the LCP. However I think your way of expressing things has been quite emotive.

GothAnneGeddes Sat 02-Feb-13 23:00:58

Hotstepper - What cash incentives are you on about?

On the contrary, death rates for hospitals are scrutinised very closely. Also, you don't seem to understand the difference between sedation and pain relief.

Anyway, I want you to give me an exact care plan, (you can use Roper, Logan and Tierney as a basis if you like) of what would be so much better then the LCP.

And what drug regime you'd use too.

I'm waiting.

colleysmill Sat 02-Feb-13 23:09:05

Well the bone scan, the 2nd lot of surgery where they found 2ndaries on her bowel and her thoracic ct scan was fairly conclusive of those areas. hmm Oh and her pain that went on weeks and weeks before we ever got to the LCP point

And the fact her cancer was a sarcoma which spreads like wild fire. She declined further tests because she didn't want to know. She was unable to tolerate chemotherapy. Dear god they tried but her kidneys shut down.

Her pain was controlled by diamorphine which she requested by a pump.

The LCP meant she wasn't bothered by stupid interference every bloody hours which treatment would have been futile and they couldnt do anything about anyway- obs like blood pressure, pulse, oxygen sats - tbh they were the least of her problems.

What treatment would you suggest? She was beyond modern treatment, there was nothing more they could offer,couldn't eat without vomiting, couldn't drink without vomiting. She had no veins left to cannulate - last attempt before LCP took 14 attempts and lasted less than an hour before it failed.
I'm just glad the vein the pump went into didn't tissue so she was painfree.

I dont wish to be so candid but she had terminal cancer. There was never goingto be any other outcome other than a bloody miracle. She was young so maybe that makes a difference - 50 at diagnosis and died 2 weeks after her 51st birthday - maybe its harder when its older people who do rally. But the LCP is there for those at the end of life not just the older generations.

GothAnneGeddes Sat 02-Feb-13 23:12:19

Colleysmill - sad I'm so sorry your mother had to go through all that.

I'm still waiting for hotstepper's care plan.

colleysmill Sat 02-Feb-13 23:18:37

It just gets me so cross. My mum was a nurse - she knew the score, she knew the prognosis and she met it with dignity and bravery.

She was very explicit that we should let her go (when she was lucid) and the last few days I cherish, we sat and talked to her, laughed, cried (alot!) sang her favourite songs to her and held her hand. Her care was not compromised - she had oral care too (they even cleaned her teeth and sprayed her perfume on because she was paranoid about smelling) the LCP just stopped her being disturbed unnecessarily.

She passed away quietly and in her sleep. Just how I would like to go.

hotstepper1970 Sat 02-Feb-13 23:19:41

jake
do you not believe a patient if they truly are dying and lets be clear about this no doctor can predict .. should be left to die in a humane way without any intervention either way .... i dont see how anyone can say the lcp framework and its protocols can be a good and peacefull death ..
this is proven it is not being used as it was meant forget telling the families for a moment .. do you not think that in an acute hospital hospital they do not have the time or the right ambiance in which to die .people can die a pain free death without being dehydrated and sedated to death ... as we know the effects of a dehydrated patient is very similar to that of someone close to death ... also the drugs used morphine ,haldol ,medazalam ,lorazapam only bring on the symtoms of an already dying patient

GothAnneGeddes Sat 02-Feb-13 23:23:23

hotstepper - leaving someone to die with no pain relief when they have terminal cancer is not humane, that's barbaric and there is masses of research to back that up.

What exactly can no doctor predict?

Still waiting for your care plan.

colley Sounds like she knew her stuff and you had a good last few days together.

Having been a HCP myself (was a student nurse) I think it can be a great help when it comes to dealing with hospitals and other HCP's either for your own care or your loved ones. Gives you much more confidence I think ! Maybe one day it will help me have a good death too. Knowing when to let go is very important I think.

Don't let anyone on here upset you will you ?

GothAnneGeddes Sat 02-Feb-13 23:26:57

<nosy derail> What made you decide not to go into nursing Juggling?

hotstepper1970 Sat 02-Feb-13 23:28:00

a care plan without incentives and patients who have not had a peacefull and dignified death on the lcp or a care plan with compassion care and love ? i can only wish that everyone on the lcp had such a wonderfull and peacefull death . the sad thing is we will never know how peacefull if it is untill we are unlucky enough to enter the incentive led lcp .. how can a patient explain they are having as good as death on the lcp when they are sedated heavily and the lack off fluid unables them to speak of what they feel ... we assume by there non responsive body movements or vocal response that they are indeed having a good peacefull death

Amazinglily Sat 02-Feb-13 23:28:02

No doctor can predict the exact time of death, that has to be at best an educated guess, as for a care plan, why do you need a plan if the death is supposed to be as you put it "natural" or as natural as possible!

WynkenBlynkenandNod Sat 02-Feb-13 23:28:20

Thank you 5Speckledhens, much appreciated.

Amazinglily Sat 02-Feb-13 23:31:02

I can agree with the use of painkilling drugs, but what about overuse? There have been a lot of reports of people being knocked out altogether? Would someone here mind defining what is reasonable use of painkillers and can overuse lead to premature death?

Amazinglily Sat 02-Feb-13 23:34:32

colleys mill, there is no question that the nurses looked after your mum, but is that down to the LCP or the nurses themselves. If it is down to the nursing care then surely there is no need for the LCP anyway? Since it is just a framework!

Hi GothAnne - Whilst doing my training I just found myself getting interested in teaching and learning and decided to do a PGCE in primary teaching once I'd finished my training. I was doing psychiatric nursing too and felt there might be more opportunity to make more difference in people's lives if you get 'em young !
I found myself moving towards early years education.
Am still interested in learning, advice, and counseling areas though ...
Perhaps there's still time for at least one more career change before I'm done ?
You are an HCP ?

hotstepper1970 Sat 02-Feb-13 23:37:08

goth dark ... a doctor cannot predict a patients death and i have already answered you in care plan question sorry not you but i am not repeating myself twice look on the thread ...and your question with regards pain relief there is no reason except that it will speed up respirity problems ... but there is no use for the amount of drugs given through a syringe driver either ... and re the nil by mouth what will that do to a patient other than speed up the symtoms that a patient is in the last hours of death .. but most patients are not placed on this framework in the last hours they are placed on this alot earlier ...

Amazinglily Sat 02-Feb-13 23:45:22

A poster, I believe mentioned incentives which hospitals were paid as regards this, did not a Dr Tony Cole, chairman of the Medical Ethics Alliance pressure group say that If death is accelerated by a single day that will save the NHS nearly £200 – that is the estimated cost of a patient per day in hospital? If that is true, it is certainly an incentive, so would trusts actually deny that this is the case?

It has also been reported that hospital trusts have received a financial bonus of some £12,000,000, of course that sounds a bit high, but even the Government has acknowledged that trusts have received financial incentives, for placing people on the pathway, confirm or deny, what is the total of financial incentives which have been paid?

hotstepper1970 Sat 02-Feb-13 23:48:55

goth please tell me what is not barbaric and torture in the framework of the lcp ???? i keep hearing people say mistakes happen well im sorry if that was your family member would you say oh well its still good its the doctors or nurses fault ???? they have not implemented it correctly tell me . what part of medicine can you do that ....were is it straight forward and can go from a tick box to every patient .. . all patients are different and should be treated as such

Amazinglily Sat 02-Feb-13 23:53:24

The question which then should be asked, has saving money, become part of some NHS strategy and are deaths being accelerated because of some financial incentive? If so then then is it feasible that structure of the Liverpool Care Pathway is being abused, if so is that abuse widespread or contained to a few specific hospitals?

If there is no abuse of the LCP then why are cases of abuse and claims of premature death being reported, or are the people who have experienced the loss of their relatives in this manner lying? Is there a case for neglect and abuse of the Liverpool care pathway framework to be answered? If not then why is there a need for a review?

GothAnneGeddes Sat 02-Feb-13 23:53:41

Hotstepper - how on earth can you say there's no reason to stop someone's pain?

I've Ctrl+F your name. No reference to an actual care plan, just you repeatedly saying that giving pain relief and sedation is somehow cruel.

Actually doctors can predict patient's death in many cases. Many terminal conditions in the end stages will create very obvious signs in blood gases, blood results, baseline observations, etc that death is imminent as the body is essentially shutting down. There is some element of science to medicine, it's not just about throwing drugs at patients.

Juggling - I'm glad you found your niche. smile

Amazinglily Sat 02-Feb-13 23:59:13

GothAnneGeddes If you say that doctors can predict the death in many cases why are so many cases being reported that the LCP is actually being abused?

Or perhaps has this been down to NHS financial incentives, if doctors are so accurate?

Also you cannot reasonably argue that doctors can predict the death of patients in many cases, without having concern for those who happen to fall into the few cases, are these few cases simply to be left to die?

Amazinglily Sun 03-Feb-13 00:02:35

GothAnneEddies, I asked if death is natural, why do you need such a plan anyway? Surely adequate care is enough, without some national guideline which could lead to the problems like the Liverpool Care Pathway has? Let us be totally honest, the NHS has not exactly come out of this smelling of roses to be honest.

Whilst you may expect a few cases to go wrong, the number is growing by the day and alarmingly are they not, does that not disturb you at all?

Veritate Sun 03-Feb-13 00:09:19

Actually, if you look at the total number of cases where the LCP has been used, you will find that the number where concerns have been raised is a tiny proportion. Additionally, a number of those cases where concerns were reported have been proved to be unfounded or ones where the LCP is not involved. Some newspapers with a track record of being very careless with their facts have chosen to make a sensationalist campaign out of this issue, and frankly I would not trust anything the report on it unless it is independently verified.

GothAnneGeddes Sun 03-Feb-13 00:13:48

Thank you Veritate. That is exactly the point I was going to make.

Amazinglily Sun 03-Feb-13 00:20:37

Veritate I do not call 558 patients who died of severe dehydration a small proportion, But even if the numbers are lower than that it should be a matter of concern do you not think?

Could you also please state which cases have been reported which are proven to be unfounded, or not related to LCP? Also define this sensationalist campaign, all the newspapers have seemingly done is to report as they find, surely by now there would be a case for libel, if the papers have not reported accurately?

Amazinglily Sun 03-Feb-13 00:26:40

should we not rather thank our media for being forthright and frank about the care of people, rather than trying to hide all the mistakes and pretend that they are not happening. After all if something has gone wrong is it not best to face up to it and try to rectify what is wrong. Surely improvements in care are what we all seek, nurses, doctors and patients alike. What is best for the patient after all comes first does it not?

BoreOfWhabylon Sun 03-Feb-13 00:54:34

I would have more faith in the media if it didn't rely so heavily on uncritically reproducing soundbites from Dr Anthony Cole and other members of the Medical Ethics Alliance.

A very short time spent Googling makes it clear that this is a religious pro-life pressure group which opposes the LCP because it considers it to be euthanasia.

Veritate Sun 03-Feb-13 00:57:57

Amazinglily, how many of those 558 deaths from dehydration were people on the LCP? There are a number of medical conditions which lead to severe dehydration, and some people who die of dehydration arrive at hospital in that condition and cannot be saved. Of course it is a matter of concern if anyone on the LCP died from dehydration rather than the illness that caused it to be used, and of course it is a concern if medical professionals make mistakes - but medical mistakes happen for all sorts of reasons.

So far as the unfounded cases are concerned, one classic example is the report of the LCP death of Fiona Bruce MP's father. Only he's still alive. And have a look at blog.practicalethics.ox.ac.uk/2012/11/the-liverpool-care-pathway-in-the-news-even-by-the-mails-standards-this-is-low/. The mere fact that papers print inaccurate reports does not necessarily found a libel case - after all, they rarely actually identify the doctors and nurses involved, and they are the ones who would have to bring libel claims. And what doctor or nurse could afford to bring libel proceedings anyway? You have to realise, not everything you read in the papers is true.

BoreOfWhabylon Sun 03-Feb-13 01:05:54

Oh, and welcome to Mumsnet Hotstepper and Amazinglily. Are you by any chance acquainted with CherylAmber and her dad?

colleysmill Sun 03-Feb-13 01:21:00

amazinigllily in answer to your question maybe it was the nursing care that did make a difference. i can't say - my experience is only one in many of the LCP.

I and perhaps more importantly my family and my ddad, believe that my mother died a peaceful, dignified death after a truly undignified illness. I had to shout and fight for a side room initially though because there were none available - I'm not particularly proud of that but I did it because I knew my mum would have moved heaven and earth for me.

The LCP brings formality to something that I believe everyone who wants/wishes for should be entitled to - a national guideline stating clearly what can be followed, if its appropriate, if its consented/agreed to and if it is clinically indicated if you are at the end. Good quality care should not be a lottery, it shouldn't matter who you are or what you're circumstances happen to be.

I don't think I have anything else to add other than what I have posted since about page 10. As we do on Mn I have shared my experience and I can only talk from that. I lived it. at times it was my worst nightmare come true. I genuinely hope noone else will have to go through what my family did but cancer is a bugger and I know that is unrealistic.

anyway I must now step away - as my mum said "live in the now Colleys, now in the could have beens

Amazinglily Sun 03-Feb-13 01:36:58

Yes I read that report, Fiona Bruce removed her father off the Liverpool Care Pathway did she not? Or is she perchance lying about that? I believe in the same article it mentioned about her mother enduring as she put it an "agonising death on the system", we need to be careful when an individual makes a statement like that, in case we undermine the facts of what she saw. This obviously led on to removing her father from the system, it would be interesting to write to her and see if she will reply to your comments.

You also state that mistakes happen for all sorts of reasons, does that justify these alleged mistakes, or are you simply passing these mistakes off? If so does it not show a distinct lack of concern?

Also if there was a case of libel to be answered, would the NHS not take up that case? after all it is surely easy to say that something is untrue, without having the need to challenge its merits of the statement? We can all do that.

As for the blog, I think that argues more against the Liverpool Care Pathway, then it does for it.

Quote

"Won’t be too long I’m sure before the MCPCIL hires a ‘media consultant’ to post positive stories into Daily Mail comments boxes…I’d rather there was a Public Inquiry, but those responsible for the roll out of this flawed scheme I guess lack the professional integrity to insist on one themselves…and are quite relieved they’ve been given time by Hunt to back – clerk all their errors. The number of documents on their site which have already been hurriedly edited is a testament to their ineptitude. Presumably, everything will be ship shape before Hunt’s ‘independent review’…otherwise the DOH and NHS face a whopping great legal bill for Corporate Manslaughter, for bringing a healthcare scheme online with no quality control, or indeed ethnic monitoring (which is illegal in the UK)."

Unquote

"Shock", but of course, as you say one must not believe all that we read. I think in lieu of this, I must thank you for the link, there is some interesting research to made there. But it is hardly a great advert for the LCP is it now? I think the Daily Mail on the whole has probably been kinder.

But do you regard that link you gave me as being accurate it its statements, if you do then this statement could be compounded as researched evidence.
Perhaps we should send the whole link to the Daily Mail?

Amazinglily Sun 03-Feb-13 01:39:45

BoreOfWhabylon, no could you please advise?

mybabywakesupsinging Sun 03-Feb-13 02:46:05

whether you agree with it or not:
in this country the duty of care lies between the doctor and the (adult) patient.
Doctors don't ask the relative's consent to any form of treatment - or decision to withold treatment - it's between the doctor and the person concerned. If that person lacks capacity to be involved in consenting to treatment, the doctor has to make the decision for them. That's the way the law is.
However:
It is good practice to inform families. It is good practice to try and establish from the family what someone might have wanted. It is good practice to explain what you are doing, and why, and to seek consensus. If there is real disagreement it is good practice to involve a 2nd opinion. I doubt good practice is always followed, sadly.
I have met many many many families who wanted only to ensure the best for their loved one. I have also met a few relatives who will say "you can't let them die, I can't manage without them" and whose motivations are entirely selfish. And some who have been abusing the patient and whose motivations revolve around guilt. And some whose motivations are financial. Giving the decision-making power to families isn't always straight-forward, nor is it always welcomed.
I find it mind-bogglingly offensive that there are posters suggesting that doctors are deliberately hastening peoples' deaths to save their NHS trust money. Why on earth would any individual medical practitioner want to do this? what on earth would they gain from doing it?
you are talking about people dying here, something which is deeply important and one of the most crucial parts of medical care. I teach my juniors that uncontrolled pain in a dying patient is a medical emergency.

claig Sun 03-Feb-13 03:23:19

'I find it mind-bogglingly offensive that there are posters suggesting that doctors are deliberately hastening peoples' deaths to save their NHS trust money. Why on earth would any individual medical practitioner want to do this? what on earth would they gain from doing it?'

I find it mind-boggling that so many healthcare professionals think that there are no problems with the LCP. However, there will be now a review into it.

'NHS doctors are prematurely ending the lives of thousands of elderly hospital patients because they are difficult to manage or to free up beds, a senior consultant claimed yesterday.'

'
Professor Pullicino claimed that far too often elderly patients who could live longer are placed on the LCP and it had now become an ‘assisted death pathway rather than a care pathway’.

He cited ‘pressure on beds and difficulty with nursing confused or difficult-to-manage elderly patients’ as factors.

Professor Pullicino revealed he had personally intervened to take a patient off the LCP who went on to be successfully treated.
He said this showed that claims they had hours or days left are ‘palpably false’.
In the example he revealed a 71-year-old who was admitted to hospital suffering from pneumonia and epilepsy was put on the LCP by a covering doctor on a weekend shift.

Professor Pullicino said he had returned to work after a weekend to find the patient unresponsive and his family upset because they had not agreed to place him on the LCP.
‘I removed the patient from the LCP despite significant resistance,’ he said.
‘His seizures came under control and four weeks later he was discharged home to his family,’ he said.'

'He said: ‘The lack of evidence for initiating the Liverpool Care Pathway makes it an assisted death pathway rather than a care pathway.

‘Very likely many elderly patients who could live substantially longer are being killed by the LCP.

‘Patients are frequently put on the pathway without a proper analysis of their condition.

‘Predicting death in a time frame of three to four days, or even at any other specific time, is not possible scientifically.

'
Experts including Peter Millard, emeritus professor of geriatrics at the University of London, and Dr Peter Hargreaves, palliative care consultant at St Luke’s cancer centre in Guildford, Surrey, warned of ‘backdoor euthanasia’ and the risk that economic factors were being brought into the treatment of vulnerable patients.

In the example of the 71-year-old, Professor Pullicino revealed he had given the patient another 14 months of life by demanding the man be removed from the LCP.'

www.dailymail.co.uk/news/article-2161869/Top-doctors-chilling-claim-The-NHS-kills-130-000-elderly-patients-year.html#axzz2Jnn4GfCs

claig Sun 03-Feb-13 03:32:54

Message withdrawn at poster's request.

claig Sun 03-Feb-13 03:47:05

Message deleted by Mumsnet for breaking our Talk Guidelines. Replies may also be deleted.

claig Sun 03-Feb-13 03:51:10

'Ministers have made a series of concessions to critics over the past month, including the establishment of an inquiry led by the same palliative care doctors who have been instrumental in promoting the use of the Liverpool Care Pathway.

They have also changed NHS rules to put a legal obligation on hospitals to tell families when a relative is put on the pathway.'

Now they will make it a legal obligation to inform families, but for years no one thought that that should be done. Why? And why were there so few complaints about the lack of a legal obligation from within the medical profession?

www.dailymail.co.uk/news/article-2238916/Ministers-order-inquiry-care-pathway-payments-saw-hospitals-receive-millions-implement-controversial-system.html#axzz2JnvrsYu5

claig Sun 03-Feb-13 03:58:52

'Until now, the medical Establishment has contemptuously dismissed public disquiet over the Liverpool Care Pathway, the official guidelines under which patients judged to be dying are left without treatment, food or fluids.
In a hugely welcome change of approach, however, the Association of Palliative Medicine has ordered a review of the concerns expressed by countless bereaved relatives, with a promise to explore ways of improving practice.
Among those anxieties, one of the most oft repeated – highlighted in heartbreaking accounts to the Mail – is that loved ones have been put on the LCP without the consent or knowledge of their families.

Another is the widespread belief that it is cruel to deny fluids to sentient beings.
But perhaps the most disturbing objection is that medical science cannot predict with any certainty how long a patient may live with proper care.
So when doctors withdraw all treatment and nourishment, believing their patients have only days left, the prediction becomes self-fulfilling.
When well over 100,000 are dying on the LCP each year, the suspicion inevitably arises that the pathway is being used to hasten death and free up beds.

These are the fears the profession must address and allay if this modern way of death is to remain official practice.

As the APM is at last starting to admit, it is simply not enough just to say doctors know best.'


Agree entirely with the Mail. Trust us we know what we're doing is no longer good enough. This is about patient rights and now at last there will be a legal obligation to actually inform family that someone has been placed on it.

Maybe more changes will be made too, now that this is being discussed widely in our public media.

claig Sun 03-Feb-13 04:04:31
JakeBullet Sun 03-Feb-13 07:25:03

hotstepper in answer to your question further back....

I believe our hospitals are grossly understaffed and I think a review is needed into how the LCP can be effective in such an environment.

My experience of the LCP is from the death of my auntie who wanted to die at home. By the time the LCP was started she was mostly unconscious ....not from medication but from her illness which left her that way. Yes she had morphine but had been having it for months ...the dose had not increased.

The LCP was started after discussion with us as her family, what they did was tell us to give food and drink as my auntie wanted and requested. I said further up the thread that all my auntie wanted by this time was an ice lolly which she had half of in the day and half of later. Her medication was given as needed....they didn't add any other drugs apart from what she was already having. We stopped trying to get non injectable medication in to her which had been distressing her. My auntie was simply nursed and loved over the next few days until she died peacefully with us holding her hands. It was about as good a death as it could be.

When someone is very seriously ill with something like terminal cancer there can be clear signs that they are dying....they become more sleepy, they start to withdraw from life, they stop wanting to eat and drink....there are real end stage signs. It is then that the LCP is appropriate .....not aggressive treatment which might further distress them. I believe I would have fought anyone who tried to provide any further invasive treatment to my dying auntie who I loved so much.

The LCP absolutely MUST be used appropriately though and a review is needed because here are cases where it clearly has not. Is this due to understaffed and pressured hospitals? Is it down to financial issues? My belief is that finance must NEVER play a part in the decision making process.

NB I am not a nurse.....I used to be years ago pre the LCP and I saw invasive treatment given to people who were clearly dying. The treatment did nothing to prolong their life and caused more suffering when it would have been kinder to do nothing and let nature take its course. This is why I welcome a pathway which recognises the end of life as worthy of respect and care. I am not certain this is possible in many hospital settings though where staffing levels have decreased even further since I was a nurse twenty years ago.

Jollyb Sun 03-Feb-13 07:59:33

hotstepper I beg to differ with respect to your comment about doctors being able to predict death. When you have a patient with advanced cancer with liver and renal failure, who is unresponsive (and not due to sedatives) despite several days of aggressive treatment with intravenous fluids and antibiotics - you know that they are not going to survive. You may not be able to predict the exact time of death but you know that the end is imminent.

The majority of patients that go on the LCP are semi conscious or unconscious when the pathway is started. Attempts will have been made to treat any reversible cause of their deterioration ie infection. They are not patients sitting up in their chair asking for cups of tea or a sandwich.

Death is a natural process. Holding people down trying to insert plastic tubes into various parts of their body is not. Some hospitals are moving away from the use of DNR and using AND 'allow natural death' instead.

I agree that communication with family is important. We always try to speak to relatives when a patient is started on the LCP. We explain what is happening and why we believe that the patient is dying. I've never had any opposition to the LCP.

Veritate Sun 03-Feb-13 09:18:01

Amazinglilly, the issue of a libel claim is a complete red herring - the NHS as an entity cannot bring libel claims. Of course no-one condones errors, but you seem to be saying that the LCP should never be used because some errors happen. If that rule were followed in medicine, we would, for example, not have anaesthetics for operations, and we would never use pain relieving medication at all. I note that you have not answered my query about the dehydration statistics you quote.

Please think about it. If you were dying and had reached a point when no medical intervention would save you, would you rather spend your last few hours in peace and without pain, or would you prefer to have people constantly sticking needles in you to administer fluids and pointless medication, taking your blood pressure and pulse, and finally jumping on your chest and breaking your ribs in a pointless attempt at resuscitation?

claig Sun 03-Feb-13 09:50:43

'Death is a natural process. Holding people down trying to insert plastic tubes into various parts of their body is not. Some hospitals are moving away from the use of DNR and using AND 'allow natural death' instead.'

Hospitals are there to save people and prevent death if possible. That is why we rush people to A&E and intervene with treatment and tubes and medicine to save them from a natural death that might ensue without treatment.

'hospitals are moving away from the use of DNR and using AND 'allow natural death' instead.'

The public has expressed concerns about the DNR system and there is a risk of euphemisms being used to hide what is happening. Euphemisms risk discrediting a system further, since they are often an attempt to conceal.

On the Andrew marr show they said today that the report on the trust in Mid-Staffordshire will come out in the next few weeks and the public will learn what was going on. They also mentioned surveys of some NHS trusts where staff said something like they would not recommend their own families to be treated there.

The concerns of the public must be addressed in an open manner and euphemisms will not help re-establish trust in some of these Trusts.

claig Sun 03-Feb-13 09:55:34

should have been - where something like 30% of staff said they would not recommend their families to be treated there

But there are a lot of euphemisms around death and dying as well meaning that it is often not accepted as it should be by our society ?

claig Sun 03-Feb-13 10:08:14

That is because we value life and do our best to preserve it. We expect the NHS that we all pay for to do their best to save us in our hour of need. We don't expect a weekend cover doctor to assign us to a pathway without informing our families, and then find that we live a further 14 months when a great doctor, against resistance, removes us from this pathway.

Eventually the law will need to be involved and possibly changed. Already they have made it a legal obligation to inform family. I expect that more legal changes will be made in the future ads more is revealed by families and newspapers.

Veritate Sun 03-Feb-13 10:08:40

"Hospitals are there to save people and prevent death if possible". Of course. But the important term there is "if possible". If it is not possible, they have a duty, which is just as important, to do their best to ensure that people have a dignified, peaceful, pain-free death.

claig Sun 03-Feb-13 10:21:04

But the weekend cover doctor thought it was not possible to save teh man who lived a further 14 months when another doctor removed him from the pathway on which he was placed.

The OP tells us that the GP has told carers not to feed or give water to the elderly mobile woman who has dementia.

Denying water to people is not a dignified, peaceful, pain-free death.

How long has the LCP existed? I read somewhere it is about 4 years? Do you really think that people were denied pain-free deaths before it was written up?

Sirzy Sun 03-Feb-13 10:23:40

Again Claig you are confusing poor care with the LCP being to blame. Try fighting against poor care rather than something that in most cases does a lot of good.

I don't know why you are constantly ignoring the FACT that the LCP DOES NOT withold fluids from people. Poor carers might but thats a different argument.

claig Sun 03-Feb-13 10:26:07

Pathways, natural death, pain-free, dignified death
All the words sound good, but some families have been writing to newspapers in an attempt to have their voices heard and they tell a different story.

So, now there will be a legal obligation to inform families, but for years there was no legal obligation. Now there will be a review, for years there was no review.

claig Sun 03-Feb-13 10:38:42

Sirzy, as I understand the LCP is a framework. If a weekend cover doctor places you on the framework then it seems that you have few rights to be removed from it. As I understand it, a trust went to court when challenged by a family and the trust won.

This is an edited quotation from the guidelines, posted by someone earlier, which is on an ethics website which criticises the Mail's coverage of this issue.

'Diminished need for food and drink

Initially, as weakness develops, the effort of eating and drinking may simply have become too much and at this time help with feeding might be appreciated.

Your relative/friend will be supported to take food and fluids by mouth for as long as possible.

When someone stops eating and drinking it can be hard to accept, even when we know they are dying. It may be a physical sign that they are not going to get better. Your relative/friend may neither want or need food and/or drink and decisions about the use of artificial fluids (a drip) will be made in the best interests of your relative/friends for this moment in time. This decision will be explained to you and reviewed regularly.'


blog.practicalethics.ox.ac.uk/2012/11/the-liverpool-care-pathway-in-the-news-even-by-the-mails-standards-this-is-low/

The decisions are made by the doctors and in some cases patients will have been sedated and will not be in a state where they can communicate.

This quote does not say that the patient will be incapable of taking water, but that they may not want or need water. If they are not able to communicate, then it seems that the doctor will make the interpretation about whether they want or need water.

claig Sun 03-Feb-13 10:59:49

'Try fighting against poor care rather than something that in most cases does a lot of good.'

I am against poor care and believe that people should be held liable for poor care and prosecuted for it. I believe that would concentrate the mind and reduce it substantially.

I am not saying that the LCP does not do good in some cases, but I support the families who believe that in some cases it did not do good. I am for a full, independent review into it in order to make sure that no bad is done on it.

hotstepper1970 Sun 03-Feb-13 11:32:50

i answer to the question above .... tell me what is natural about the lcp ??????? there are patients being placed on this who have not got cancer .. even babies with a disability are put on this what is so natural about that even having a major disability should they not have a chance of life ... this is the dangers off having this framework in the nhs ... staff shortages nurses have confimed there is dangers in hospitals with regards to nurse patient ratio .. and tell me who are the ones going to suffer .. it is a tool to murder ... and as for only a few cases as you put it let me tell you people have not been aware of the dangers as they believe everything a doctor tells them is for there best interest .. i hold highly anyone who challenges this lcp in the media or elswhere people will know the dangers and families will realise and i tell you there will be thousands of claims of murder ... watch this space

Susieshoe Sun 03-Feb-13 11:39:03

Just coming back into this thread after having to work two long days, so haven't had much chance to read it. I see that James Mee is calling for reinforcements here, on his Facebook page. Interestingly, the much, much larger 'I support the Liverpool Care Pathway' page hasn't felt it necessary to cheapen their cause by calling on their supporters to descend on this thread. James Mee will doubtless claim that his Facebook page is gaining support and cite the growing numbers of supporters he is gleaning. However, I note that most of the new supporters have been actually ADDED by the existing members - so therefore a PASSIVE 'like' as opposed to an ACTIVE 'like'. The pro LCP page has 9,500 + active likers...........sorry if I'm sounding a bit pedantic here but I feel it's important to demonstrate how the 'anti LCP' propaganda machine is constructed...............oh, and James Mee is also reposting old daily Heil articles about the LCP in order to 'educate' all his new acolytes.
It seems to me that this thread has many, many sensible comments. It's good to see that most people aren't blindly led by the crap that the daily Heil and the telegraph publish. It does sadden me that there are some people who would prefer to believe the rantings of an uneducated hack journalist, rather than the considered experiences of healthcare workers who actually witness illness, death and dying every day. People who have worked their asses off in university, people who believe that healthcare is best served by constantly upgrading their skills and continual training ( because it doesn't stop once you've been handed that degree you know).
I have to go to work again shortly, I dare say that this thread will fill up even more with ridiculous accusations from people who can't see past the media hype. But I will say this......95% of families are happy that their loved ones passed peacefully on the pathway (in its many forms). Obviously, I and every other healthcare professional would rather it was 100% but its never going to happen because we will NEVER please all the people, all the time.....even if we do things well, there will always be families who complain and the reasons for this are many and various.

Veritate Sun 03-Feb-13 11:42:56

"This decision will be explained to you and reviewed regularly." This is the point. The fact that someone is put on the LCP doesn't mean they stay on it - doctors regularly take them off. That is why the reference to the weekend cover doctor is a bit of a fallacy; every doctor who deals with that patient will review the original decision regularly.

hotstepper, of course there are patients being placed on the pathway who have not got cancer. People don't only die of cancer, you know. It has been demonstrated that the report about babies with disabilities being put on it was false. You suggest that the LCP isn't natural, but what is natural about ventilation, CPR, pumping adrenaline into veins and giving hearts electric shocks? All of that is of course absolutely correct when it gives a chance of saving life, but not when all it does is subject a dying patient to an agonising, undignified end.

People seem to forget that decisions about giving treatment to the dying have been part and parcel of medics' jobs long, long before the LCP was even thought of.

hotstepper1970 Sun 03-Feb-13 11:51:33

you say a patient who is started on the lcp is already semi connsious or non responsive .....am i wrong to believe that removel of fluids will render a patient unconsious ......the lcp is a tool and as the old saying goes its only good if its used by a qualified person .. and the patient is to be monitored regular . tell me what hospital has the time or staff to make sure this is implimented ??? i say that you will find none ... therefore there is no place for this in acute hospitals

claig Sun 03-Feb-13 11:52:44

'even if we do things well, there will always be families who complain'

Families complain when things are not done well. We will see what the public think of the rantings ofuneducated hack jornalists when journalists report on what happened in the Mid-Staffordshire Trust. We'll see if teh public supports the complaints of the families or believe that things were done well by the healthcare professionals who "worked their ases off in university".

The Daily Mail (not the Daily Heil) said

'Until now, the medical Establishment has contemptuously dismissed public disquiet over the Liverpool Care Pathway'

I think there will now be change.

Oinkypig Sun 03-Feb-13 11:53:19

In a pp someone mentioned that doctors have not been under any obligation to inform families about patients being placed on the LCP, in fact if a patient lacks capacity then under the mental capacity act 2007 a family member or friend who is involved in their care has to be involved in decisions about significant medical interventions (or lack of interventions) unless it is an emergency. If the family and doctors cannot reach agreement it can go to the court of protection. If someone has no family an independent advocate is appointed. I would never want to be in the situation where I was the only one deciding if my mum or dad was to have treatment. I would like to think I would do what was best but I would also worry I would be too selfish to let them go and that is why I am glad that doctors will make that decision and I respect them enormously for having to do so. There are always bad doctors and bad care but that's a different discussion.

Veritate Sun 03-Feb-13 11:54:50

Interesting that the Mail has had to correct one of its LCP stories as follows:

A former version of the article described the Liverpool Care Pathway as “a withdrawal of food and fluids”. We are happy to make clear that the LCP is intended to ease the final hours of patients who are close to death and to spare them the suffering associated with invasive treatment and the needless prolonging of life. Once a patient is no longer able to eat or drink, consideration is given as to whether fluids and nutrients should continue to be provided.

So they managed to falsify an absolutely crucial and basic fact underpinning their entire campaign. And they haven't publicised their correction, they've simply added it to the original report placing it right at the end, where there is very little chance of anyone who was previously misled seeing the correct version. This is why you simply cannot take any Mail report on this issue as reliable unless it is fully corroborated by more reputable sources.

Veritate Sun 03-Feb-13 11:56:47

hotstepper, you are absolutely wrong to say that hospital staff don't have time to review the use of the LCP. That is why they have palliative care staff, and that is precisely their function.

claig Sun 03-Feb-13 12:09:38

'In a pp someone mentioned that doctors have not been under any obligation to inform families about patients being placed on the LCP, in fact if a patient lacks capacity then under the mental capacity act 2007 a family member or friend who is involved in their care has to be involved in decisions about significant medical interventions (or lack of interventions) unless it is an emergency. If the family and doctors cannot reach agreement it can go to the court of protection.'

That is very good to hear, OinkyPig.

What are the penalties for not following this procedure? Because press reports have stated that many people and families were not informed about being placed on the LCP?

claig Sun 03-Feb-13 12:48:02

'hotstepper, you are absolutely wrong to say that hospital staff don't have time to review the use of the LCP. That is why they have palliative care staff, and that is precisely their function.'

'A survey by the charity found the number of specialist palliative care nurses fell by 6.9 per cent in 2008 / 10, from a peak of 6,155 to 5,730.

The study also showed an average vacancy rate among specialist palliative care nurses of 8.7 per cent – almost 500 posts left empty – which is almost double the rate five years ago.'

www.dailymail.co.uk/health/article-2071086/Dying-people-risk-nursing-shortage-crisis.html#axzz2Jnvro0eF

claig Sun 03-Feb-13 12:51:04

‘It is really extremely worrying therefore that the number of specialist palliative care nurses could be falling – we already know end of life care for the terminally ill is not at the standard it should be.'

Jollyb Sun 03-Feb-13 12:51:19

claig and hotstepper these patients are already dying - that is my point. It is rare for a patient to come into hospital and be started on the LCP without any attempt to remedy any reversible cause of their deterioration. They are likely to have had days or even weeks of treatment before a decision is made to start the LCP. If a patient is deteriorating despite active treatment - no amount of drugs and fluids is going to save them.

claig Sun 03-Feb-13 13:08:54

Jollyb, the papers carry stories of people who went on to live a further 14 months after being taken off the LCP by a doctor, and where family provided water which started a recovery which eventually led to the LCP being removed for that patient and the patient was eventually released and was planning a worldwide cruise.

The framework must take more account of patients' and families' rights. A consultant professor has said

‘Very likely many elderly patients who could live substantially longer are being killed by the LCP.

‘Patients are frequently put on the pathway without a proper analysis of their condition.

‘Predicting death in a time frame of three to four days, or even at any other specific time, is not possible scientifically.'

While it may have benefits in some cases, this does not seem true in all cases. Something has to be done about that.

Jollyb Sun 03-Feb-13 13:20:57

Your quote by the professor about the elderly patients is just his opinion. Other eminent professionals will have a very different opinion. a quick google would find me many quotations from consultants in support of the LCP.

Unfortunately there are going to be cases where the LCP is used inappropriately. Just as there are going to be cases where diagnoses are missed and delayed and operations that go wrong. It doesn't mean that the whole pathway should be scrapped.

I

Jollyb Sun 03-Feb-13 13:29:37

And also the fact that the papers are publishing these stories means that they are rare and newsworthy. They're not going to publish the story of a patient with advanced metastatic cancer or the patient who had a massive stroke who had a peaceful and dignified death on the LCP.

claig Sun 03-Feb-13 13:36:29

Yes, there are many healthcare professionals who support it.

But when families write to newspapers of distressing stories and when people go onto to live for an extra 14 months after being removed from it against strong resistance, then it needs looking at.

People who challenge official policy and who take Trusts to court, as in the case of some of the Trusts where scandals have been revealed, are always in the minority. People who campaign against the status quo are always initially in the minority, but they often speak for a silent majority.

I don't think the whole pathway should be scrapped but it needs reviewing and looking at in the light of complaints and criticisms about things such as financial incentives and patients' rights.

They have already changed things by now making it a legal obligation to inform families. I think they will probably make more changes as a result of a review, and that can only benefit patients.

Veritate Sun 03-Feb-13 13:49:50

I'm increasingly wondering why claig is posting here. No-one who supports the LCP is saying it is infallible or that it shouldn't be the subject of careful review. The same applies to all sorts of medical treatments and procedures. She seems to be suggesting that that is in some way contentious, but it isn't.

claig Sun 03-Feb-13 13:54:28

'And also the fact that the papers are publishing these stories means that they are rare and newsworthy.'

If the papers were to publish all of the things that go on in hospitals, there would be no room for anything else. Just read on MN of many people's experiences of poor care. What reaches the papers is only a fraction of what is really happening.

There are good things happening too, but papers concentrate on the bad things and that forces those in positions of authority to hold reviews and make changes that benefit patients.

Amazinglily Sun 03-Feb-13 14:02:28

Susieshoe, I do not think your comment is very helpful, naming those who oppose the LCP, is only going to detract people away from your message and make others seek out why they are opposed to the LCP. I also do not think your comment towards the daily heil as you put it are not helpful, After all if this were the days of the daily heil, you would find a lot more followers of Hitler than there are on your Facebook page and no one could say that Hitler was right, so Could we keep to topic please?

A guestion, do any of those NHS workers who feel they have been under attack by the media, believe that a public inquiry would be a solution to this problem and do they think this review meeting will help to ease the mind of the public over the Liverpool Care Pathway?

Also, surely this fighting is helping no one, rightly or wrongly there is an obvious and fundamental distrust of the public about the use of the LCP, yet no one has taken a look into the future of this. Is this fight going to continue, and if it does, is further harm not going to be caused. Is there any framework which can be put into place, which will reassure the public and the press that those dying are indeed receiving the best quality of care?

It is obvious to me, as it is surely obvious to others, that unless this fight is to continue we need to address the subject fully and find a way forward. If not it will be the patients, those working in the NHS and the public who will continue to suffer? Let us face facts, for we need to, the press and the media and those who feel they have faced an injustice are rightfully or wrongfully not going to stop.

claig Sun 03-Feb-13 14:02:40

'I'm increasingly wondering why claig is posting here'

Because I beliee in improving healthcare treatment for myself, my family and everybody else. I am concerned by the stories in the press and I want something done about it.

There are people on here trying to shut people up talking about it, trying to stop criticism and debate and reporting posters and trying to get their views removed.

I believe that the treatemnt of patients and dying people is one of the most important issues in our society and I don't want debate to be stifled by people who regard all criticism as worthless or harmful.

I applaud the Telegraph and the Mail for making these issues that politicians have had to react to.

I agree with the Mail

'Until now, the medical Establishment has contemptuously dismissed public disquiet over the Liverpool Care Pathway'

and I think it is time for that to end.

Amazinglily Sun 03-Feb-13 14:07:26

Veritate it is both unreasonable and contentious, would you be happy if a doctor or nurse made a decision which was effectively to end the life of a relative if you thought that they were wrong, are you telling me you would stand by if this were to happen?

Jollyb Sun 03-Feb-13 14:10:30

I'm entirely happy for the LCP to undergo a thorough review. I just hope that patient care won't suffer in the process.

Amazinglily Sun 03-Feb-13 14:18:19

Claig, I am seeing this, an attempt seems to be being made simply to silence or to stifle voices of opposition, but that is not what should be happening. It only leads on to further doubt and suspicion about motive, This is why all concerned should start to think of a way ahead. Or do we have to take sides on this and fight out some long prolonged war, which in the end will leave everyone demoralized. I have to ask the question Is there any middle ground?

On one side is the public going to have to accept the seeming apparent dictation of the NHS as regards the LCP, but also should those who work in very difficult circumstances, not be appreciated for the good work which does occur. The dividing line, from observation, appears to be the LCP, so what is the solution?

Amazinglily Sun 03-Feb-13 14:21:18

Why should a patient suffer though if say something like a public inquiry did take place? Would it not reassure all concerned, therefore reducing the suffering and feelings of injustice, would it also not settle public opinion and maybe even the press?

Veritate Sun 03-Feb-13 14:23:53

Amazinglily, you just can't generalise like that. In most cases of course relatives' views should be obtained and should be carefully taken into account. However, there will be occasions when relatives can't be contacted and urgent decisions have to be taken - the LCP provides that people can be taken off it, after all. There will be occasions when the patient himself has given a prior directive that he doesn't want CPR and painful treatments, or doesn't want to be forced to try to eat or drink. And there will be cases where doctors and nurses can and should make the decision in the patient's best interests. Some relatives desperately hope against hope and want intrusive and painful interventions which will achieve nothing except making the patient's last few hours a living hell. Are you seriously saying that if that is the case the relatives' decision should be paramount?

claig Sun 03-Feb-13 14:23:58

' I just hope that patient care won't suffer in the process.'

I don't think it will. Stories of financial incentives possibly skewing decision making will be investigated. I hope doctors will be questioned about the reliability of their diagnoses and the outcome will be a safer system for patient care which removes any possible errors or financial incentives.

We have now been granted a legal obligation to inform families. Maybe more good things can come out of a review.

claig Sun 03-Feb-13 14:30:46

'Claig, I am seeing this, an attempt seems to be being made simply to silence or to stifle voices of opposition, but that is not what should be happening. It only leads on to further doubt and suspicion about motive'

You're exactly right, AmazingLily.
The hostility, the vitriol and naming of brave families and people who set up facebook campaigns to challenge the policy is a sign of fear. What is there to hide? Why fear open scrutiny and an open review? What will be revealed?

Amazinglily Sun 03-Feb-13 14:35:57

"Unfortunately there are going to be cases where the LCP is used inappropriately. Just as there are going to be cases where diagnoses are missed and delayed and operations that go wrong. It doesn't mean that the whole pathway should be scrapped."

So Jollyb, what is the answer for the cases where the LCP has been used inappropriately? Are they just to be put down to mistakes, I find this is an area which is particular interesting for me, because firstly there cannot be any acknowledgement of course, whilst the complexities from a legal viewpoint cannot be ignored.

If a mistake has been made, it could lead to long and complex legal proceedings, over the issues of medical negligence, breach of duty of care, with the potential for more serious allegations to be taken into consideration.

Amazinglily Sun 03-Feb-13 14:46:54

You are right Claig, whatever the medical establishment care to think, or who they name, on either side of this argument, is irrelevant. If there is anything to come out, it needs to come out, if there is nothing then that would bode well for the NHS and the LCP. But whatever which way, this goes public confidence in the NHS needs to be restored and whether it is media reports, or actual experiences which are pushing people into wanting questions answered, the imperative is not to try and bury the people, but to begin answering those questions.

It would not be untrue to say, that at the moment public distrust, rightfully or wrongfully in the NHS is at an all time low. Surely it is in the interests of the NHS and government alike to address this. Silencing people will never work, it never has done.

claig Sun 03-Feb-13 14:56:45

AmazingLily, everything will come out in the end.

Next week we will hear about what happened in the Mid-Staffordshire Trust. It happened years ago and is finally now going to be revealed. The shockwaves may be huge.

The medical establishment contemtuously dismissing public concerns will no longer wash. The papers are reporting on people and families who have written in to them, and they are doing a service to all of the public by keeping it frontpage news, so that those in authority cannot claim that they were unaware.

The public has seen coverup after coverup and some have taken years to reveal. The only way to stem public distrust is to discuss it openly rather than contemptuously dismiss it.

colleysmill Sun 03-Feb-13 16:21:25

I've been thinking about this thread all day.

I'm all in favour of a review of the LCP but I think it would be a wasted opportunity not to look at the wider context. There are many organisations outside of the nhs which provide support and end of life care which are pretty well regarded. Why not look at hospices and charities like Marie curie which have long experience in providing care? What are their principles and how do they implement them in similar circumstances? What do they do differently and can that translate across to the nhs.

Let's have a review with good purposeful outcomes

BoreOfWhabylon Sun 03-Feb-13 17:20:38

But colleysmill, that's exactly what the LCP is.

"The LCP was developed during the late 1990s at the Royal Liverpool University Hospital, in conjunction with the Marie Curie Palliative Care Institute. It was intended to provide the best quality of care possible for dying patients in the last hours and days of life, whether they were in hospital, at home, in a care home or in a hospice. It was widely seen as a way of transferring the model of “excellence” in the care provided in hospices to other healthcare settings such as hospitals and care homes.
The goal of the LCP is to ensure a death is as dignified and as peaceful as possible."

www.nhs.uk/news/2012/11November/Pages/What-is-the-Liverpool-Care-Pathway.aspx

Jollyb Sun 03-Feb-13 17:21:51

colleysmill one of the main reasons for introducing the LCP was to improve the standard of end of life care across the system. So that patients dying in an acute orthopaedic ward have a quality of death comparable to those in a hospice. The steps recommended in the care pathway ie medication review to ensure unnecessary medications are stopped, are exactly what would be done upon admission to a hospice for terminal care. The LCP is often used within the hospice setting too.

I think a review of the LCP is going to be necessary, however in a way I am surprised that it has come to this - as in my experience the pathway works well. (though this could be because I am a blinkered and arrogant HCP).

I think there are areas of health care with far more worrying deficiencies - such a delays to cancer diagnosis.

Amazing lily -as for what can be done when a patient has been inappropriately placed on the LCP. It's a very tricky situation. It's always going to be difficult to prove, but if there are real concerns about this and the standard of care given, then of course it needs to be fully investigated.

Piecesofmyheart Sun 03-Feb-13 17:51:59

'I'm all in favour of a review of the LCP but I think it would be a wasted opportunity not to look at the wider context. There are many organisations outside of the nhs which provide support and end of life care which are pretty well regarded. Why not look at hospices and charities like Marie curie which have long experience in providing care? What are their principles and how do they implement them in similar circumstances? What do they do differently and can that translate across to the nhs.'

to answer your question, can I again point you in the direction of the Concensus statement published in Sep 2012 - if you scroll to the end you can see how many of the organisations you refer to (including Marie Curie, Macmillan Cancer Care, Help the Aged etc) have signed this statement.

www.endoflifecare.nhs.uk/media/1879275/LCP_consensus_statement_24_09_12.pdf

hotstepper1970 Sun 03-Feb-13 18:03:40

there are too many cases of very bad care while on the lcp in acute hospitals ... what about the cases of cancer patients that have and are being mis-diagnosed .if this framework has been implemented then a doctor is not going to look at the overall picture or other causes to a patients illness

hotstepper1970 Sun 03-Feb-13 18:15:52

a hospice is a whole diff ball game people who go to a hospice are alert and can have a say on their own end of life . a hospital does not have the empathy or the staff to give anything other that a quick death ... regardless of the illness or if indeed they are in their last hours ,,it is just not good enough that hospitals do not have the staff to patients ratio to care for the medical needs of patients let alone to care for someone who may be close to death .....

Piecesofmyheart Sun 03-Feb-13 18:25:40

'how did they know she had metatases everywere ?'

Have you ever heard of medical imaging Hotsteps ? CT/MRI/bone scans? Know what a CA125 is ? or a PSA ? What will they tell you about a patients disease progression ? Tell me about EPs and renal function ? Corrected Ca levels etc ?

Ah that's right - you know NOTHING about any of this stuff and choose to believe that a hospital manager wanders round a ward with a calculator and labels the random patients who are to be starved to death and whose relatives have a hotline to the wail.

Piecesofmyheart Sun 03-Feb-13 18:27:11

a hospice is a whole diff ball game people who go to a hospice are alert and can have a say on their own end of life .

How long have you worked in a hospice for Hotsteps?

XBenedict Sun 03-Feb-13 18:44:55

"it is just not good enough that hospitals do not have the staff to patients ratio to care for the medical needs of patients let alone to care for someone who may be close to death ....."

Absolutely it's not good enough, you can't give gold standard care when the wards are so appallingly understaffed but we can't blame the nurses and the doctors that work there for this. Something needs to change.

therugratref Sun 03-Feb-13 19:11:41

I just typed out a great long answer and then deleted it. I just cant be arsed engaging with ill-informed morons like lily, hotstepper and claig who parrot shit they read in the daily mail as scientific fact rather than equally ill-informed journalistic opinion.

I remember palliative care before LCP and it was hit and miss at best. The LCP is an evidence based tool which has ensured a much greater consistency in the end of life care in this country. So occasionally Dr's get it wrong- hold the front page they are fallible human beings just like you, not granny murdering psychopaths who are killing for cash.

As a HCP I am beyond insulted that you think we bump people off to free up beds. In ICU our decision to treat in the first place is based on the reversibility of the disease process which has brought them to the point of needing ICU care so if that means your 87 year old cancer patient who has a hospital acquired pneumonia will often be admitted and treated for their pneumonia with care that costs 2000 pounds per day regardless of the fact they have a cancer which will kill them in the next 6 months (oncologists are rather optimistic people).

I too welcome a review of the LCP because it will show it for what it is, a useful tool which allows people a peaceful and dignified death.

colleysmill Sun 03-Feb-13 19:25:51

My point about looking at external agencies really was to highlight the similarities between their ethos and the LCP. By reviewing it as a whole perhaps that would be clearer.

I still think a national pathway is better than inconsistency and inequality around the country.

Anyway I think I'm hiding this thread now - I've shared my positive experience of the LCP and been questioned about the extent of my mothers illness and tbh I resent the implication that we and the medical team involved overestimated the extent of that illness and we just sat back and let her die.

colleysmill Sun 03-Feb-13 19:39:41

Actually that last line is very ironic cause technically we did sit with her as she slipped away!

It's hard to articulate - she had treatment and it just didn't work. That's noones fault other than the disease process. Mum was going and the only things she could do for herself were sleep and breathe. Her care at the end is what you would hope everyone would get.

The only certainty in life is that we die (not a fan of being frozen myself!)

LadyBeagleEyes Sun 03-Feb-13 19:42:24

Yy therugratref.
I totally agree, and I'm not an HCP.

claig Sun 03-Feb-13 19:52:33

' I just cant be arsed engaging with ill-informed morons like lily, hotstepper and claig who parrot shit they read in the daily mail as scientific fact rather than equally ill-informed journalistic opinion.'

You can insult and call me a moron, but please do not accuse Mail journalists of the same.

The following comes from today's Mail about the Mid-Staffordshire Trust case rather than LCP

'Three managers from Mid Staffordshire NHS Trust are to face public disciplinary hearings over their failings during the worst-ever NHS hospital scandal.
It is understood they will be the first to face the prospect of formal action over appalling standards of care at the trust between 2005 and 2009.
Staff there have been blamed for the ‘unnecessary’ deaths of up to 1,200 people because they put targets and cost-cutting ahead of patients’ needs.'

www.dailymail.co.uk/news/article-2272508/Only-THREE-managers-dock-NHS-scandal-1-200-unnecessary-deaths.html?ITO=1490&ns_mchannel=rss&ns_campaign=1490#axzz2Jnvro0eF

'I remember palliative care before LCP and it was hit and miss at best.'

At the moment approx 130,000 people a year are on the LCP and twice as many who are very close to death are not placed on the LCP. Does that mean that their treatment is hit and miss and that their deaths are undignified and painful? I doubt it.

As an HCP, do you think that eventually everyone who is very close to death will be placed on the LCP?

Fishandjam Sun 03-Feb-13 19:52:37

claig, lily, hotstepper - can you provide a link to any authoritative review or comment piece which supports your arguments? By "authoritative", I mean not the Daily Mail or any other tabloid newspaper, and not someone's Facebook page.

Lifeisontheup Sun 03-Feb-13 20:00:22

Having been involved in some events which were then reported in the newspapers I am very sceptical about them getting anything right. In the events I was involved in they got absolutely nothing right.

There may be a few journalist who check their facts but my experience is that most don't let the truth get in the way of a good story.

What you need is peer reviewed articles published by well qualified people and published in a reputable journal not a tabloid newspaper.

Amazinglily Sun 03-Feb-13 20:12:29

Fishandjam what arguments are talking about, so far I have only asked questions, but since you ask does experience count at all?

Amazinglily Sun 03-Feb-13 20:24:14

fishandjam since you talk of authoritative? is a report not in itself not authoritative? These reports you unfortunately have a habit of disregarding, or denigrating, are what make the public aware of such matters, rather than trying convince a few on here are you not better trying to allay the voices raised against you by investigating exactly why they think the way they do.

Ranting at people and referring to Facebook is not going to change anything, they are going to continue to say and do what they think is necessary, which seems to be, on looking at their site, to get a message across to the public that the LCP is on the whole is unjustifiable and unsafe, if that is the case, you are losing the counter argument by using hostility and insults.

They do not have to provide any journal and there are photographs on that site which seem to display a very different perception to the one you are trying to put across?

I am becoming alarmed at the inability to appropriate some mechanism on this, which comes down to more than just a pile of some report or other, especially when it appears to be the case that human lives are involved here.

claig Sun 03-Feb-13 20:26:07

'What you need is peer reviewed articles published by well qualified people and published in a reputable journal not a tabloid newspaper.'

The Telegraph is a reputable newspaper and not a tabloid and carries many stories on the LCP.

Here is the website of the Medical Ethics Alliance
www.medethics-alliance.org/

I am not an HCP, just a member of the public, and have sometimes been derided as illinformed moron. What worries me most is dying of thirst and dehydration. It seems to me that it could be an agonising death and I can understand why major medical intervention is not undertaken on the LCP but find it difficult to understand why in some cases, as stated in newspapers, that water is not provided to dying patients.

Even pictures and poems of soldiers dying on the battlefield often involve their colleagues giving them water as they die.

'Since the pioneering work of Dame Cecily Saunders there is no need to fear unrelieved pain, but what I do fear is thirst. In a letter to the Chief Executive of NICE ( National Institute of Clinical Excellence ) I asked;

“How long should a person be without fluids”?

No answer was forthcoming from him nor subsequently from the Association of Palliative Care Medicine.

Maybe, I am one of the few people here who has seen death from thirst. It was in a newborn baby and is not something that is easily forgotten. I am reminded what Dame Cecily Saunders said ;

“How people die remains in the memory of those who live on”.

In fact no one can survive without hydration and nourishment. They are basic human needs. The human body has a built in control system to ensure that fluid intake continues. Thirst is a primitive sensation which eventually comes to dominate all others and the thirst centre lies in the hypothalamus one of the deepest levels of the brain. There can be no certainty that drugs working on the higher centres will abolish thirst.

Baroness Knight took part in a recent Newsnight discussion in which the President of the Association for Palliative Care Medicine stated that the dying do not experience thirst or that it can be relieved by moistening the mouth.

In fact Dr Peter McCullough a senior researcher at the John Curtain School of Medicine of the Australian National University in a review of the literature in 1996 quotes Fitzsimons and Barnard ;

“…moistening the mouth failed to relieve thirst in dogs and horses with oesophageal fistula …and it is evident that, whereas dryness of the mouth can aggravate a sensation of thirst resulting from body water depletion, its alleviation will not remedy thirst in the absence of correction of water depletion.”

As a recently as 2009 the distinguished professor Sam Ahmedzai with long experience in Hospices writing in The Times said;

“Hospices have always maintained that dying people do not feel thirst and to die in a state of dehydration is “natural”, and even desirable. I am struck by the stability of this view over several decades but in healthcare, such a focus would be seen as narrow minded inflexibility. Several studies have shown that dehydration can cause intense suffering and people recovering from severe life threatening illness in intensive care units recall thirst as one of the most distressing sensations. Dying people often cannot tell us how they feel, yet they will probably experience the same feelings we all do when we are dehydrated.'

Fishandjam Sun 03-Feb-13 20:26:31

lily, where have I insulted anyone? Or ranted? I await your response with interest.

Fishandjam Sun 03-Feb-13 20:27:27

Ok, I think I used the word "flipping". Fairly mild by MN standards, I think!

Amazinglily Sun 03-Feb-13 20:33:45

therugatref, since when have I paraphrased any newspaper, then again you paraphrase and cut and paste too as suits, and if you cannot be bothered, why are you in this debate, I am seeing a very different side of the NHS on this forum and one that is not particularly wholesome.

Jollyb thank you for your courteous response,

"Amazing lily -as for what can be done when a patient has been inappropriately placed on the LCP. It's a very tricky situation. It's always going to be difficult to prove, but if there are real concerns about this and the standard of care given, then of course it needs to be fully investigated."

The next question would be, is what type of investigation should take place, are the complaints procedures, which the NHS work by sufficient enough for to protect the public interests, or as regards the LCP, is there a need for a more robust and expert framework to be set up, in which case should the NHS insure itself against any mistakes which happen under the LCP? Since making a mistake whilst using the LCP will invariably lead to a loss of life.

Also should relatives have the right to remove a patient from under the care of the LCP if they think he or she is not receiving proper care?

Piecesofmyheart Sun 03-Feb-13 20:37:55

There is also a Facebook Group called 'I Support the Liverpool Care Pathway' which has lots of interesting links (including one to the wails retraction of their accusations that the LCP meant patients were being deliberately denied fluids) Thee are about 4,500 people reading that page.

Can't link as on my phone at the minute if anyone else would be so kind.

claig Sun 03-Feb-13 20:47:32

The Mail reported the following recently. I find it disturbing.
Some people will tell me that the Mail is lying, that it is a tabloid and therefore not reputable, and that its journalists are ill-informed. But I find that hard to believe.

'Bernadette Lloyd, a hospice paediatric nurse, has written to the Cabinet Office and the Department of Health to criticise the use of death pathways for children.

She said: ‘The parents feel coerced, at a very traumatic time, into agreeing that this is correct for their child whom they are told by doctors has only has a few days to live. It is very difficult to predict death. I have seen a “reasonable” number of children recover after being taken off the pathway.

‘I have also seen children die in terrible thirst because fluids are withdrawn from them until they die.

‘I witnessed a 14 year-old boy with cancer die with his tongue stuck to the roof of his mouth when doctors refused to give him liquids by tube. His death was agonising for him, and for us nurses to watch. This is euthanasia by the backdoor.’

Read more: http://www.dailymail.co.uk/news/article-2240075/Now-sick-babies-death-pathway-Doctors-haunting-testimony-reveals-children-end-life-plan.html#ixzz2Js1lTclk
Follow us: @MailOnline on Twitter | DailyMail on Facebook

www.dailymail.co.uk/news/article-2240075/Now-sick-babies-death-pathway-Doctors-haunting-testimony-reveals-children-end-life-plan.html#axzz2Jnvro0eF

Piecesofmyheart Sun 03-Feb-13 20:56:31

Interesting Claig. The only nurse of that name on the current NMC register is a mental health nurse. And has no paediatric qualifications.
It's from the wail you say ?

claig Sun 03-Feb-13 21:00:20

Just imagine if the BBC recorded a programme on this. If they interviewed people like Bernadette and the families who are featured in the newspaper stories and the families who have set up facebook groups to try to get their voices heard, and if they also interviewed ministers and heads of palliative care etc.

I think that this would then shoot up the agenda in terms of importance.

If it was then found publicly to be the best way, then that would be great and would stop the fears of many members of the public.

therugratref Sun 03-Feb-13 21:08:32

Claig have you ever actually watched someone die?. I have been a nurse for 25 years and in that time I have seen many, many people die.

The vast majority are incapable of eating or drinking in the last days of life regardless of whether it is a basic human right or not.

Are you suggesting I should pass a nasogastric tube so they are not denied "food" that they can neither taste or enjoy or even digest properly. Or may be you would like me to tip water into their mouth so it can by pass their stomach and end up in their lungs effectively drowning them.

Or perhaps I should dig around in their swollen oedematous arm for a vein that may last a couple of hours so I can give them some IV fluid.

Or maybe, just maybe, I should give regular oral care, moistening the mouth every hour with a wet swab, gently putting cream on their lips, making sure that they have a functioning syringe driver which is keeping their pain at bay. Sedation so that their terminal agitation is managed so they and their family don't suffer. Administer something to dry up the secretions so their family don't have to listen to the death rattle. Maybe I should call the chaplain so if the person has religious belief they may derive some comfort from that.

Dying is a natural process which will happen to us all, should we prolong this process artificially?

Piecesofmyheart Sun 03-Feb-13 21:09:30

I suspect 'Bernadette' should be more concerned about her professional accountability having allegedly stood back and watched a child dying in the manner that she describes. Perhaps (hopefully) she's been struck off already - hence her name not being on the NMC register ?

Piecesofmyheart Sun 03-Feb-13 21:12:06

'Are you suggesting I should pass a nasogastric tube so they are not denied "food" that they can neither taste or enjoy or even digest properly. Or may be you would like me to tip water into their mouth so it can by pass their stomach and end up in their lungs effectively drowning them.'

Therug - Claig/Amber/MrMee don't like you to actually 'mention' the actual process of dying. It really does get in the way of a good bit of hysterical postulating about murdering nurses and doctors stalking the wards killing people.

therugratref Sun 03-Feb-13 21:16:13

Pieces I seldom get irate about shit on the net, but I got home this morning from a 12 and a half hour shift spent doing my bloody best for the NHS and read this. If I had posted this morning I would have been at best deleted at worst banned.

Lifeisontheup Sun 03-Feb-13 21:17:07

The Telegraph is still a newspaper. It is not a reputable journal. To present a balanced argument you need peer reviewed research. At best, a newspaper article is anecdotal, at worst, it can be random comments taken out of context.

claig Sun 03-Feb-13 21:20:33

therugratref, can you explain what the difference is between the 2/3rds of patients near death who are not on the LCP and teh 1/3 who are in terms of fluids and water in the stages near death?

How does the LCP differ from the system under which the other 2/3rds of patients are on?

therugratref Sun 03-Feb-13 21:25:46

You show me the evidence base from where you got stats from Claig and I will provide you with a reasoned answer. By the way I consider myself a scientist and thus don't accept the mail (which I would not even use to line the bottom of a litter tray) and the telegraph as evidence. I like my evidence peer reviewed and published in reputable journals.

Piecesofmyheart Sun 03-Feb-13 21:35:17

TheRug -I think this thread is incredibly helpful. The anti LCP 'voice' have not produced one credible source of stats or information, have demonstrated time and time again their woeful ignorance about medical issues and the actual process of dying, have systematically failed to answer questions, have had to appeal to followers on a FB page to provide 'back up' and have bandied around the notion of murder and torture without thought or sensitivity, including to a poster who shared details of her own mums peaceful death. And in the face of great provocation, their 'arguments' have systematically been torn apart and deflected back.
Earlier, this thread was number 4 on google search for 'Concensus statement re Liverpool Care Pathway'
And I know which side of the fence has produced the logical, reasoned information.
And which side looks more than a little sensationalist and hysterical wink

Amazinglily Sun 03-Feb-13 21:37:14

And peer reviewed reports cannot also be biased I am to assume? One side prints anecdotal information based on the information it is provided, whilst the other side provides written information, carefully edited and most likely biased, as it based on the information it wants people to believe!

Unfortunately at the end of the it inevitably boils down to what people want to believe. People will have a tendency to believe in what they see and experience, which is where of course the papers gain their readership from. A false flag story, could lead a papers sale to drop, so their stories have to have merit.

Although it could be equally said that a propaganda war is now being fought on both sides with the patient and their relatives stuck in the middle. Whilst the NHS does itself no favours, by seemingly trying to just shut people up!

Oddly enough though, looking back a little into history, I do remember similar squeals of outrage over the MSBP affair, the Cleveland Child Abuse Scandal and of course not to forget the MRSA outrage. In all those cases, after the papers reported them, there was initially a cover up by the NHS followed by open admissions that things had gone drastically wrong. This is where the real problem lies. Is the same thing going to happen with the LCP, the answer is probably and unfortunately yes and pretty soon, The reason being that this bad press makes the Government look bad and unfortunately the Government is at the end of the day, is elected by the people.

Which brings us back to right where we started from, what steps is the NHS going to take to reassure the public that they are going to be listened to properly if there are mistakes made whilst using the LCP to determine whether a patient is going to die.

claig Sun 03-Feb-13 21:38:39

I got my information from newspapers, I don't read medical journals. But if you only give reasoned answers to data from medical journals, then your unreasoned answer will do.

The family of Mrs Greenwood in the Mail reported that fluids were removed from her and they were livid and began to give her water themselves. They say a nurse told them not to do it. Mrs Greenwood began to recover and she was taken off the pathway and released from hospital.

The Telegraph reported the following

'the group opposing the pathway, led by Prof Patrick Pullicino, a neurologist from East Kent Hospitals, argued that it was fatally flawed.

There was no scientific basis underpinning the prognoses that patients were dying, they said. “It is self-evident that stopping fluids whilst giving narcotics and sedatives hastens death,” the group said in a statement.

The group also pointed out that the latest pathway audit showed that just 16 per cent of patients had fluids continued on the pathway and none had fluids started. “The median time to death on the Liverpool Care Pathway is now 29 hours,” the group said. “Statistics show that even patients with terminal cancer and a poor prognosis may survive months or more if not put on the LCP.”

They added: “The fact is that there is no scientific evidence to support the diagnosis of impending death and there are no published criteria that allow this diagnosis to be made in an evidence-based manner.'

www.telegraph.co.uk/health/healthnews/9626610/Patient-death-pathway-based-on-guesswork.html

hotstepper1970 Sun 03-Feb-13 21:44:36

Message deleted by Mumsnet for breaking our Talk Guidelines. Replies may also be deleted.

Sirzy Sun 03-Feb-13 21:45:17

I got my information from newspapers,

That explains a lot.

Of course you wouldn't find information from a reliable source, or even listen to the first hand experiences posted on this thread. Makes much more sense to get information from a source which is hardly hiding its agenda!

therugratref Sun 03-Feb-13 21:46:59

I am wondering if Prof Patrick Pullicino's opinion is based in science or catholocism.

Lifeisontheup Sun 03-Feb-13 21:47:55

The whole point of good research is that it is not biased. There are certain criteria which you check before believing a piece of evidence, who wrote it, what are their qualifications, have they published before, why did they do the research, who funded it? What sort of research is it, blind trials, double blind, retrospective?
There is no way you can compare what is written in a newspaper whose sole purpose is to sell copies with evidence reviewed, tested and published in a journal. It's just not how science works. You would be laughed out of court if you quoted from a newspaper in a scientific essay. It just cannot be relied upon.

therugratref Sun 03-Feb-13 21:48:32

Pardon my crap spelling- Catholicism is what I meant

Veritate Sun 03-Feb-13 21:51:54

The article which claig has referenced about babies is a classic example of the dishonesty of the Mail's campaign. It comes directly from this article in the BMJ - www.bmj.com/content/345/bmj.e7319 - but claims it is about a baby being put on the LCP. However, if you look at the article, the LCP has nothing whatsoever to do with it, and the action taken was at the specific initiative of the parents.

And why the continued reliance on the Mail? As has already been pointed out, they've had to print a wholesale retraction of the central tenet of their campaign. Perhaps I should repeat it:

A former version of the article described the Liverpool Care Pathway as “a withdrawal of food and fluids”. We are happy to make clear that the LCP is intended to ease the final hours of patients who are close to death and to spare them the suffering associated with invasive treatment and the needless prolonging of life. Once a patient is no longer able to eat or drink, consideration is given as to whether fluids and nutrients should continue to be provided.

That tells you everything about the reliability of the original story, and it does them no credit that they've printed this retraction because they've buried it right at the end of an old story where they hope few people will see it. Sorry, I'll take peer reviewed research over Mail lies every time.

Veritate Sun 03-Feb-13 21:53:44

hotstepper, I'm afraid your post is unreadable and you're just not getting whatever point it is that you want to make across. Try using normal punctuation.

claig Sun 03-Feb-13 21:54:24

Sirzy, I have repeatedly said that I am not against the LCP and that it may do good in some cases. What I am worried about is the testimony of families and patients who say that it was not right for their loved ones, and I worry about dehydration and the reported stopping of fluids in some cases.

That is why I want a full independent inquiry into it, to ensure that no mistakes are made with putting people on it and that financial incentives play no part in the decision making.

There will be an inquiry into it and it seems that it has partly come about due to media pressure, which I think is a good thing.

Piecesofmyheart Sun 03-Feb-13 21:54:42

Hotstepper - you very rudely, and very insensitively demanded to know how a poster could possibly know that her mum had metastatic disease. A patient can be diagnosed with metastatic disease at any point of the disease trajectory. I'm not sure what your point is ? I assume that you are aware that the presence and extent of secondary disease is a strong prognostic factor?

And it's midazolam wink

therugratref Sun 03-Feb-13 21:57:29

And Haloperidol wink

Veritate Sun 03-Feb-13 21:59:50

The fact that claig has to keep going back over and over and over again to the Greenwood case shows the weakness of her arguments. She takes this one case as conclusive evidence for damning the LCP whilst brushing aside the evidence on this thread alone of many more people who have personal experience of the LCP (not just what they've read in newspapers) and who consider that, properly used, it is valuable. And I'm afraid that is very symptomatic of the approach to evidence of so many who support the Mail's hysterical campaign.

Amazinglily Sun 03-Feb-13 21:59:54

Piecesofmyheart so far all I have witnessed from the Pro LCP side is exactly the same to be honest, save for the fact the other side have experienced the LCP, through the loss of their relatives, you talk about facts, but have produced very few of your own! save of some quote that 95% of people are happy? If we are to believe that, it still means that there are 5% who are unaccounted for.

Fact, people have claimed their relatives have died unnecessarily on the LCP counter, acknowledgement that mistakes have been made? The question is have those mistakes amounted to premature death and we all know what that implies.

Fact it has been claimed that the process of the LCP has involved, systemic abuse in the application of drugs, assault on patients, incorrect diagnosis being made all within hospital environment. Whereupon the care processes have failed, which has led to both patients and relatives feeling desolate.

Fact, that the relatives of some of the patients have not been advised of the use of the LCP,

Fact, that there are on going court cases, relating the use of the LCP and that families have sought documentation under the freedom of information act, to find out whether their relatives were placed on the LCP and whether they were treated accordingly.

What an utter mess, indeed and I am sorry but you cannot say the NHS has performed to the best of its ability under this at all. I also believe that soon a lot more information will shortly come into the public arena.

As for hysteria, the only hysteria which I can see, has come from the NHS, because people disagree with its practices.

So again, I come back to the question, what can the NHS do to regain public confidence in its services, relating to the LCP? Arguing with people about what went wrong or did not go wrong is not going to get anyone anywhere, all it is going to do, is make those who feel they have suffered an injustice fight harder. I do not believe that is in the best interests of anyone to be honest.

claig Sun 03-Feb-13 22:01:01

Veritate, according to the ethics article that you posted earlier, the Mail also did not mention that teh doctor who witnessed teh 10 babies etc. was not a UK doctor and was abroad.

So, yes, not everything the Mail says is always the full information, but then again not everything it says is wrong.

amothersplaceisinthewrong Sun 03-Feb-13 22:03:50

I know one of the people behind the LCP very well indeed and they are very definitely one of the most humane, decent human beings that you would find, also quite brilliant in the field of palliative care. The LCP is NOT euthanasia, torture, killing people off, it is intended to be hopsice-style care at its best, dignity in death. .

Veritate Sun 03-Feb-13 22:04:08

Amazinglily, do you ever take medication of any sort? Does it occur to you that it is only made available to you after exhaustive testing including drug trials operated by the doctors and nurses whose judgment you don't seem to trust at all, and it has been formulated based on peer reviewed research? Given the choice, would you really prefer to take pot luck based on whatever piece of woo the Mail's editor has decided to promote this month?

claig Sun 03-Feb-13 22:08:12

'The fact that claig has to keep going back over and over and over again to the Greenwood case shows the weakness of her arguments.'

The reason for that is because I have not got time to google every article and every case, so I use that as an example.

I have not said that the LCP is bad in every case, but what concerns me is if it is bad in any one case. That is what I want looked at. I want it improved so that mistakes do not happen and so that people's lives are not ended prematurely. That is why I quote teh case of the man who lived an extra 14 months after Professor Pullicino removed him from the LCP that a weekend cover doctor had placed him on without informing his family.

You seem to think that there are no problems with it at all, and you seem to discount the stories of families in the nespapers etc.

Even Norman Lamb MP was concerned about the stories in the papers and there will be a review into it.

hotstepper1970 Sun 03-Feb-13 22:09:39

so you can tell now a patient who is dying has metastates from just looking at them ? and i did not refer to her telling lies .. but to bring the fact that did she listen to what a doctor was telling the patient had , and how they derived at that information . my point is the patient not directing at anyone scanned while they are on the pathway or before ?

Sirzy Sun 03-Feb-13 22:11:09

Theres going to be a review into it? I hadn't realised that, why didn't you mention it sooner Claig wink

hotstepper1970 Sun 03-Feb-13 22:13:12

god help us all if you who claim to be of some intelligence can pick out someones spelling mistakes .. is this a debate or a spelling test ..
i must consult my dictionary in the future shall i ???? get a grip we are on a forum of mums net ! now i have to be up early so we will continue our spelling test soon xxxxxxxxxxxx mwah

Amazinglily Sun 03-Feb-13 22:14:41

claig is absolutely right though do you not think? would you have rather had that person die? At least then you would not have been brought to account in the public arena to account for Mrs Greenwood, or should you rather not be saying we have not been implementing the LCP in a safe and correct manner, therefore we need to re-look at the LCP and its implementation

Or Is it that you would prefer people to die, so you do not have to face these issues surrounding the LCP? If that is the case, then there may yet be a greater tragedy in this which is yet to unfurl.

Am I wrong in questioning the safety as regards the usage of the LCP in light of the NHS protestations of its value, at this point I am actually unsure. The ideology seems to be in order, but the practice of the LCP, seems to leave much to be desired, in terms of end care.

The last question of course here must be, is there any justification for the relatives of patients to believe that their kin have been killed by use of the LCP? I must admit it is one of the worries I have and there is nothing here which reassures me at all as regards the safety of the use of LCP, certainly not from press reports, however also not from the NHS.

I would be very hard put to place elderly relatives on this pathway, I remain wholly and completely and totally unconvinced.

Piecesofmyheart Sun 03-Feb-13 22:20:44

Horstep - I really can't make sense of the majority of your post as it makes no sense at all but in response to this bit :

'so you can tell now a patient who is dying has metastates from just looking at them ? '

I would say no -I tend to read the notes or listen to communication from my colleagues wink Things like mets tend be yunno documented ? As they tend to be quite important as a prognostic factor....... (Repeat to fade......)

claig Sun 03-Feb-13 22:26:20

'Theres going to be a review into it? I hadn't realised that, why didn't you mention it sooner Claig'

I agree, I should have said it more often. smile
What that signifies to me is that there are some possible worries about its implementation and that it needs to be looked at.

Veritate Sun 03-Feb-13 22:31:07

claig: I have not said that the LCP is bad in every case, but what concerns me is if it is bad in any one case. That is what I want looked at. I want it improved so that mistakes do not happen and so that people's lives are not ended prematurely. ...

Fine. A review is happening, as you know. So why are you still repeating the same points?

You seem to think that there are no problems with it at all, and you seem to discount the stories of families in the nespapers etc.

How dare you misrepresent what I have said? You know perfectly well that I, and indeed all or most of those supporting the LCP, have acknowledged that it is not infallible. Yes, we do discount the newspaper campaigns because the the Mail campaign in particular comes from a paper which has repeatedly misreported the facts about the LCP. We are perfectly happy that the LCP is being reviewed. We are expressing legitimate concern about the hysteria which is being whipped up and which is having the result that people are dying in agony all over the country because their relatives have been spooked into refusing to contemplate the LCP.

Amazinglily Sun 03-Feb-13 22:34:10

The question I would most like to ask, is there anything a person can do to refuse the LCP, I am worried about elderly relatives and remain very unconvinced this is right for them?

ChestyNut Sun 03-Feb-13 22:34:36

Have cheryl and her dad invited all their daily mail reading LCP hating friends over to MN?

I cannot even be arsed to justify some of the comments on here.

LCP does not stop people having food and fluids.

MNHQ sort it out? hmm

Veritate Sun 03-Feb-13 22:39:03

Amazinglily, so there are court cases about the use of the LCP. There are court cases about the use of cars. Does that mean that you refuse to get into a car, or even to walk on a pavement in the vicinity of cars?

LadyBeagleEyes Sun 03-Feb-13 22:41:05

I can't believe at the number of posters that keep quoting the fucking Daily Mail as some sort of oracle shock.

claig Sun 03-Feb-13 22:41:56

Veritate, I apologise for misunderstanding your position.

'which is having the result that people are dying in agony all over the country because their relatives have been spooked into refusing to contemplate the LCP.'

Are the 2/3rds of people not on the LCP but in the same near-death condition dying in agony? If so, why is this being allowed?

Piecesofmyheart Sun 03-Feb-13 22:44:00

Chesty Nut - I fink I luffs you blush

mybabywakesupsinging Sun 03-Feb-13 22:45:02

There are I think bound to be cases where death is thought to be imminent and unavoidable when the person then goes on to recover...because it is completely true in medicine that it is often hard to be 100% certain about anything, people being quite amazing things.
However: ever done CPR on someone in whom in whom the inevitability of death has not been recognised? felt their ribs crack? inserted large bore cannulae in their groin/neck (a piece of pointed plastic not much smaller than a pencil)? and more...without any hope whatsoever of regaining a cardiac output...it is an awful thing to do.
It may well be an imperfect science to try and predict when death is inevitable (perhaps sometimes easier than others) but I think we do have to try.
My own feeling is that the problems discussed don't arise from the LCP itself, but failings in care around its use - not talking to families, not actually carrying out good nursing care, not getting the underlying diagnosis/prognosis right. Similar problems with care can very sadly be found in all areas and I agree very much with someone above who said that's what we should be trying to end.
as an incidental, many dying people are oligoanuric - therefore fluid requirements are very low. a bit like dialysis patients who have to drink as little as possible to avoid fluid on the lungs.

Fishandjam Sun 03-Feb-13 22:53:23

lily, you say "what steps is the NHS going to take to reassure the public that they are going to be listened to properly if there are mistakes made whilst using the LCP to determine whether a patient is going to die."

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.

<facepalm>

I'm still waiting for a response to my earlier post, incidentally.

Piecesofmyheart Sun 03-Feb-13 22:56:21

'I'm still waiting for a response to my earlier post, incidentally'

I wouldn't be sitting up late specially Fish......

Veritate Sun 03-Feb-13 22:56:52

Claig, you don't know anything about the other 2/3, neither do I. I haven't seen evidence which even demonstrates that that is an accurate estimate. However, if it is, I hope most are not dying in agony because not every type of terminal condition has that effect, or because it is being tacitly accepted by all involved that painful interventions shouldn't be used even without the LCP being considered. Remember, it has been accepted literally for centuries that there are always circumstances when it is a doctor's responsibility not to treat a patient when treatment can only prolong suffering.

But some people are dying in agony unnecessarily because their relatives have refused to let them go on the LCP, or it hasn't been suggested to them, or whatever. And that is shameful.

Fishandjam Sun 03-Feb-13 22:58:22

That's a ten four pieces!

shergar Sun 03-Feb-13 23:04:12

I'm a doctor who has used the LCP a lot. It is simply a checklist that allows us to ensure that patients who are dying do so in as much comfort as we can produce for them, and to tailor treatments to their individual needs. People DO NOT die because they are on the LCP, they die because they have an underlying terminal condition. I am perfectly happy to spend a month on the LCP to demonstrate this. Watch as nothing happens. I have never withdrawn food or oral fluids from any patient who still wants them, and has a safe swallow (indeed, I have encouraged relatives to bring in alcohol for LCP patients who request it). The LCP paperwork is freely available online; please do Google and read it if you have doubts about any of this. I think you'll be surprised.

Of course the LCP is not always implemented perfectly, and some patients who improve move off it again. Life isn't perfect, and medicine is highly complex. We will never get to a place where 100% of people are happy that correct decisions have been made for every patient, because there are so many grey areas and subjective opinions, and as a society we are uncomfortable with dealing with the fact that everyone will die. The issue of consent is also complex because in UK law, no adult can give consent for any medical procedure for another adult - medical staff will treat any adult who can't consent for themselves in their best interests. It is nice to have their relatives on board, but it is not a requirement in law. Of course, discussion with relatives should be held where it is possible.

Please don't believe papers like the Mail on such an emotive subject. They were responsible for much of the MMR hysteria too (a subject on which they are now oddly silent) and this undoubtedly cost children their lives. How sad that they are now likely to be responsible for patients dying in greater distress because patients and relatives refuse the LCP if they believe the nonsense pedalled as fact by the worst elements of the gutter press. The whole piece about children on 'death pathways' that was selectively edited out of a longer and more thoughtful piece in the BMJ didn't even discuss a UK example, but was about a case in the USA, which was conveniently ignored in the Mail. The LCP is used for adults.

Amazinglily Sun 03-Feb-13 23:05:40

Yes and some people are dying in agony when they have been placed on it too.

claig Sun 03-Feb-13 23:08:43

'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.

Veritate Sun 03-Feb-13 23:10:11

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

Veritate Sun 03-Feb-13 23:11:26

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

Amazinglily Sun 03-Feb-13 23:15:48

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.