Monday, 20 September 2010

The Liverpool Care Pathway.......


.......and all is not perfect.
Where was the dignity in this death? Where was the care as in Care Pathway?
Worrying stuff!
Anna

Please click on label: The Liverpool Care Pathway for previous post.

13.3.11  Please visit Liverpool Care Pathway - Good, Bad or Ugly?
See Blog List Opposite.

32 comments:

Sam said...

It's one thing to stop medication for a 'sure' to die person, but to stop food and water!! Why?! This is sad!

What I can't understand though is, if the sister saw, or her dying brother told her he had to get up himself to get some water, why didn't she just take him home??

Hypercryptical said...

Hi Sam

You raised a fair question.

A hospital environment can temporarily 'change' who we are. Hospitals are strange, frightening places to some of us. A usually assertive person can become a timid mouse - my friend did.
We accept what we are told, especially in very distressing circumstances.

If we sense something is not right - we might still accept it, depending on our emotional state - or even if we don't accept it - we will probably do nothing.

If I had been that lady, I would have requested to speak to 'someone' about the situation; if I felt I wasn't making any headway, I would bring in 'Safeguarding Vulnerable Adults' - but the very same thing could be used 'against' me if I attempted to get my brother discharged home. There are also other avenues I would have taken.

I would do that now as I have gained knowledge and maturity across the years - but I doubt whether I would have had the personal strength do same, perhaps ten years ago.

It all depend on strengh of character (at the time), our emotional state and coping skills.
There are so many factors to play in.

As said, being a patient or relative can temporarily change who we are.

Anna

Sam said...

I still think it is wrong to deprive dying people from food and water for any reason (Surgery excluded). So, it's not about the patients and their relatives Anna, this pathway to death is wrong!

Witch Doctor said...

I agree Sam it is very wrong unless the patient is deeply comatose and unable to eat of drink prior to imminent death.

“The nurse in charge of his care apparently insisted he was not being “denied” fluids, just not being given them.”

If this is an accurate account then this nurse should get shot for patronising relatives in this way and for not questioning her own professional responsibilities.

“This went on for a grisly few weeks until his inevitable demise, without his medical care being monitored or reviewed by a palliative care team at any time.”

If this is an accurate account then the consultant or GP responsible for this patient’s treatment should get shot for malpractice.

If there was no doctor in charge in this patient, then the government should get shot for allowing protocols to replace professionalism.

Sam said...

Hi Witchdoc :-)

'unless patient is deeply comatose'

I don't know! But you are the doctor WD. However, what if patient has a chance of rising from coma? It can and does happen, shouldn't fluid be supplied even to comatose patients just in case then?

... can I join the firing squad ... this is not right! Any which way you look at it, it stinks!

Withold medication, yes - water and/or food , NEVER!

Hypercryptical said...

Hi Sam,

The LCP, when used appropriately, is a good thing - but I, like you believe that in the majority of cases, fluids should not be withdrawn.

The problem - as WD points out, is that the LCP has become a protocol and has in some cases, overtaken professionalism.

The manner in which the LCP is thrust forward as the perfect death, and the fact that those behind this wonderful plan will not admit that, at times, it is used inappropriately - worries the hell out of me! The End of Life Care Strategy has become a death industry -as well described in WDs last post and we are losing sight of the original and laudable aims of the LCP.

Anna

Sam said...

"The LCP, when used appropriately, is a good thing"

As a non HCP or doctor, I can't judge that. So, I will take your and WD's word for it. However, a system, protocoled or not, that denies anyone some water, especially when they ask for it like the patient in the article did, is wrong and needs to address this fault in it's composition - So, as you say, the system needs tweaking. That's if the patient is the one that matters for real. So, we're in agreement here.

As for 'the death industry', I have different views. Lots of people have always chosen to be burried here or there, chose their own ceremonies, etc. Hence, there will always be those who will see money making opportunities in death and try to capitalise on them. But providing the activities they sell are legal, it is up to their 'consumer' to buy or not to buy, even if others consider it foolish to do so. So, it really is a matter of choice and whether one chooses to buy or not is their business however outrageous such dealings may seem to lay people like us. The law doesn't protect fools after all!

Witch Doctor said...

Hi Sam,

I understand your anxieties about comatose patients and agree with them particularly if there is any possibility at all the coma is reversible. I did cover what I said by using the words “imminent death.” There comes a time when everything has been done that can be done, the patient has complete and irreversible failure of one or more organs, is naturally deeply unconscious, and cannot eat or drink. The question then is whether commencing fluids parenterally will make the patient more comfortable in the hour or two before death. Since none of us have been in the position of imminent death, I don’t suppose we know for sure whether parenteral fluids might make us more comfortable at this time, but we think not. They certainly may overload the heart and kidneys and introduce serious infection.

The other end of the spectrum is the case referred to. The patient was conscious or partially conscious and desperate for a drink and was not therefore in a situation of imminent death. Some fluids must have been given or he would not have rallied for so long. There may well be aspects of this story that is not known to the reader. However, I have my own similar experience of a family member who had food and oral fluids withheld when conscious but confused, but had no underlying pathology apart from a degree of dementia, so I know withholding fluids inappropriately does happen. In this case, those who were next of kin were told it was the “kindest” thing to do and although normally articulate and able to assert themselves, they became upset and very confused. Fortunately the patient survived for many years with a good outcome.

The Liverpool Care Pathway is somewhere between these two scenarios, and is more complex and contentious because the comatose state may be medically induced for pain relief and the patient’s comfort. It is also compounded by the fact there may or may not be an advance directive in place to refuse some types of treatment. Somehow, I have the feeling that dying is unique for each individual and cannot be squeezed into the constraints of a protocol. The question is whether a protocol is more or less dangerous than clinical judgement. I suspect the LCP will eventually be rolled out into the patients’ homes, where there are relatives and neighbours to care for them but there is insufficient ongoing clinical judgement. Having the patient sign earlier an advance directive to refuse treatment, is I expect, a prerequisite if terminally ill patients are to be managed at home without criticism of their medical management. I suspect this is why there is such a push to have ADRTs signed in a timely manner – it is only marginally to do with patient choice and more to do with the economy.

Sorry, this has turned into an assay of sorts.

ned ludd carer said...

As someone who has agreed to a Post Mortem permission for my son, in hospital, for someone who is still alive 27 years on, we've learnt from bitter experience that however confident the medical staff are about their prognosis, they don't always get it right. I can see the value of the Liverpool Pathway used sensitively in a caring environment - I've seen it in action in a childrens hospice environment. The implications of it's use routinely in hospital frightens me. Our own experience is that hospitals aren't good places for disabled people - people with non standard needs can be at great risk. I've posted on my own blog about this and the insidious creeping tide of 'nursing by numbers' and 'tick box healthcare' and this instance of the misuse of a protocol does nothing to improve my confidence.

Dr Jr said...

This is just an utter disgrace. No-one with half a brain, let alone half a heart should restrict someone fluids when they're perfectly capable of getting some themselves!

Just plain pathetic. Someone needs to remind that team what exactly the LCP is for.

Sam said...

"“imminent death.” ... the patient has complete and irreversible failure of one or more organs, is naturally deeply unconscious, and cannot eat or drink. The question then is whether commencing fluids parenterally will make the patient more comfortable in the hour or two before death. "

Not being an expert, I would say this depends on whether the patient is conscious or not. If conscious and refusing to eat or drink, then I'd let them be as this, given that organs are failing too, is one sure sign of immenent death. If however this patient is unconscious, then some fluids should be given, if only to overcome any doubt whether death is immenent or not. That fluids may cause infections is irrelevant if patient dies in a few hours anyway - but what if s/he lives? Surely medication can be restarted to fight those then! ... a jug of water and a cup can and does save lives! Me says!

"There may well be aspects of this story that is not known to the reader."

Regardless! Patient 'wanted' water, patient was denied his/her wish! Wrong! ... No smoke without fire.

"I know withholding fluids inappropriately does happen ... although normally articulate and able to assert themselves, they [the relatives] became upset and very confused"

Naturally, sadness and fear [Anna pointed to that too in a previous comment :-]... and what do you expect? So can you imagine what it would be like for inarticulate relatives? Hence responsibility for the patient's welfare lies 'only' with the clinical team who must then make the right decision. But that is not helped by a protocol that lacks a basic requirement such as witholding whatever when it might still be needed. Your family member was 'lucky', although one shouldn't use such a word in a care setting because this then highlights that there is a fault!

As for the rest, I agree with you, except that even for an induced coma to make the patient comfortable in their [last hours?] fluids should be part of the parcel for that.

... and thank you for an 'A' grade essay Witch Doc, Brilliant! ... comme d'abitude :-)

Sam said...

"we've learnt from bitter experience that however confident the medical staff are about their prognosis, they don't always get it right."

You are right ned ludd carer and I am sorry for your loss.

Of course all medical staff are only humans, like us, who sometimes do get stuck when making decisions too. I suppose contributions like yours and this debate here can only be for the better and for improvement.

Let's hope ... :-)

Hypercryptical said...

Ned, Dr Jr - thank you for your comments.

I do not envy doctors having to decide when death is imminent - it must be a heavy burden to carry. I have enormous respect for doctors who admit that at times a diagnosis could be wrong.

Some years ago we had two residents who were often diagnosed as near death - but against all odds, rallied round, again and again and again (across years). These experiences deeply affected their relatives.

In hindsight, automatic hospitalisation wasn't the norm then and it begs the question, if it had been and the LCP was up and running - with the fervour that it is today - would they have survived the first diagnosis?

Sam.
Hydration. I had a very close relevative in end stage dementia - obviously dying - no doubt about that. I requested that she receive parental fluids and this was done. She died of multiiple organ failure (secondary to dementia), the hydration causing no adverse effects within the last days of life.

A second close relative received active treatment until the moment she died of a terminal illness. She became terribly engorged with parental fluids that her body could not rid of, due to progressive kidney failure. As she was semi-conscious - her discomfort must have been unbearable. In this case - parental fluids should have been withdrawn.

Never-the-less, I do believe (after experiencing great thirst myself) that parental fluids should be offered in all cases - until seen to be detrimental.

"Death industry" - a bad choice of words - my thought process doesn't run on full throttle after a night shift. It is more like a creeping, insidious 'organised movement' ensnaring those who are vulnerable and rejoiced by those who feel they are doing 'good.'

Initially, the concept of a good death was a good and kind thing - but it growing to the point where its original aim is becoming lost. It is a policy driven without a heart.

Anna G

ned ludd carer said...

I think I need to apologise for a lack of clarity in my previous post. Sorry Sam.
We gave permission for a PM when he had been given a very short prognosis (hours/days). He actually survived and is who we still care for 27 years later. I don't blame the medics for getting it wrong - but it happens. I'm very glad they did and am even gladder the Liverpool Pathway wasn't in use then.

Sam said...

"her discomfort must have been unbearable."

This is were I am limited Anna. This is dependant on clinical judgement and I am not one.

But, with regards to protocols, which by definition is a step-by-step system to facilitate operation and avoid errors hence aim at effeciency, it seems that this LCP is one, although as you and WD is good overall, needs a little tweak to avoid cases like the one you are presenting in this post.

When devising any protocol, the first aim is to simplify; that's done by stripping layers until reaching a core that can be built upon anew to achieve the step-by-step model with a defined goad at the end. Then test, redesign sometimes and/or tweak to achieve an effecient model that can be rolled out to work uniformly in suitable settings. The travel and airline industries are full of those. From what you blogging health professionals and the media have been saying lately, it seems that this LCP at it's core is assuming that all doctors and nurses ethically/compassion wise are the same, which is not the case as the case in this post demonstrates. In the hands of people like yourself and the Witch Doctor, it would operate at maximum effeciency because you are ethical and compassionate, hence, you won't allow a dying patient not to have a sip of water when he wants some. But other clinician. did/do, hence this shortfall needs to be addressed to avoid such errors. As WD said, no tick box protocol can be 100% effecient without human input, and that is perhaps what this protocol lacks; that tweak, or intervention by you guys when neccessary.

And it is not my choice either that 'death industery' term, however, from reading the Witch Doctor's latest posts on the subject, this is what is happening now with all the offers made by companies that deal in 'death' as she is highlighting. The problem is, no one can do anything about those companies because they are acting within the law. Sad but true, unlike yourselves, there is not much kindness in business. Doctors and nurses, HCP and anybody working in health and social care are meant to be compassionate by nature, not business. This is not predominantely based on compassion but on ability to achieve optimum effeciency with the sole aim of making profit, otherwise it sinks. Not to say that there are no successful businesses out there who are also courteous and caring though because this bit is what differentiates a good business and excellent one, and the majority do their best too, only this is not compassion, it's customer service ... to keep the business going and in profit.

Sam said...

Sorry I misunderstood too Ned Ludd Carer

All the best :-)

Anonymous said...

Patients do not need to have any confirmed terminal condition before being commenced onto the LCP.It is enough for the doctor to BELIEVE the patient is no longer recoverable.It is therefore inevitable that some patients will NOT go on to die from the condition they were BELIEVED to be dying from when commenced to the LCP but will instead die due to deterioration caused to a condition they were NOT initially dying from.PS Don't expect to receive any logical
soundness from the ombudsman.They seem to think being very poorly makes reasonable a decision to commence a patient to this 'why bother to care' pathway.

HyperCRYPTICal said...

Regretably, I agree with you Anonymous that in some cases 'Belief' of dying seems to be enough.

Please see earlier post of 7/10/10

Thanks for your comment.

Anna

Susan Skinner said...

If someone is diagnosed as dying ( having hours or days to live),and does not have pain. Why can't they just die naturally? That is what my husband would have wanted, but it seems the doctors are terrified of someone having a death rattle. Sorry palliative care professionals, you are not always needed and it would be helpful if you could say that and not interfere.

HyperCRYPTICal said...
This comment has been removed by the author.
HyperCRYPTICal said...

Hi Susan,

I have deleted the above comment as there was too many spelling errors in it!

I still have serious misgivings in that in some instances, the LCP is initiated for a variety of reasons when it need not be. Your story illustrates that.

I am suprised how many visits the LCP posts receive on an almost daily basis - as they were written some months ago - which to me is concerning.

If you wish, please write to me via email as I would be interested to hear your story. Please be assured that it would never be detailed in a post.

Regards.

Anna :o]

Anonymous said...

hi, susan what you say i agree it makes sense i lost a partner like you, and the circumstances were very simular, you should have the gold standard not the l c p, the only people who agree with this barbaric practice are , those who are told to kill or lose their employement. it stinks. keep complaining susan. john.

Anonymous said...

the voices against the liverpool care pathway, make more sense than those against it, it is euthanasia backed up by the government, it is done to save money and stop bed blocking its a british disgrace, like the expences scenario they are not bothered in the next election get them exterminated not the n h s patients. you can fool some of the people, some of the time, but not all of the time.

johnny said...

anonymouse, you could not have spoken a truer word, lets face it when they experimented with patients in the liverpool hospice it was supposed to be for patients in their last hours of life, not days and weeks it is a crime against humanity and should be abolished, no matter how many versions they try to whitewash it with.

Anonymous said...

the liverpool care pathway is the easy way out especially when short of nurses i have seen it applied twice both times they are forgotten about in other words written off, and more money from coqin its a disgrace you have professors and doctors screaming its wrong, whistleblowing and it does not make the slightest difference, david cameron is willing to give a referendum for the e u , i think the referendum is needed for the liverpool death pathway with 150.000 deaths each year, lets get these expences cheats out of office at the next election if you dont want to die before your time.

Aissa said...
This comment has been removed by a blog administrator.
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