Any HCPs could give me some information about fluids?

[EmmelineGoulden]

My husband's grandfather is over a hundred and, following a very bad fall, ended up in hospital and has now been put on the Liverpool Care Pathway.

I didn't name it in the title because I'm aware it is controversial for some, but I don't have any concerns over the pathway itself, I'd just like to understand it better. It's been done with consultation with my husband's mother and her siblings and I have no doubt they have his best interests at heart. But my husband was not part of the discussion so is unclear on bits of it and obviously doesn't want to grill his mother about it right now, so I was hoping for info from people here.

What we've found hardest to understand is why fluids are withheld. It seems like something that would cause distress, yet I know the point of the pathway is to give as comfortable a time as possible. Can someone explain why no fluids is a part of the pathway and how it helps with a comfortable end?

[Sirzy]

I am not a HCP but my understanding is that fluids shouldn't be withheld, more they shouldn't be forced on him. So if he asks for a drink, or will happily take sips of water they should be given but if he refuses fluids then he shouldn't be given any at that point.

May be worth trying to talk to his care team to clarify?

[SantasHairyBollock]

There may be a decision not to start any new treatment. So if he cant take oral fluids (as he is too unwell) they may decide not to start a drip. Not starting a treatment is usually considered different to stopping an existing treatment, IYKWIM.

So usually they are not stopping fluids and he could take a drink if he was able and wanted to, but they are not poking him with extra needles to start giving fluids that will only prolong the inevitable. They should be giving him regular mouthcare if he is not able to drink though.

[EmmelineGoulden]

Thank you both for posting.

I'm told he can't swallow. He was being fed through a drip (and I assume that was fluids too) but that was removed, along with IV antibiotics, when the pathway was started. It seems they waited until his son (who lives abroad) could get here before stopping the IVs, so he could have all his family with him.

There are wet sponges we wipe his mouth with/let him suck on. But he can't really get any water down orally.

I would just have thought lack of fluids would be really unpleseant, though I suppose they would prolong life by a considerable amount and that would presumably be worse.

[SantasHairyBollock]

The needles they give the drip through are fine plastic tubes, and they usually have to come out after about 3 days or so and a new one put in somewhere else. So you could feasibly decide not to start a new one, IYKWIM.

The spongy sticks sound like normal mouthcare, that's good. Sorry he is so ill.

[EmmelineGoulden]

I don't have a problem with how they decide to get to the point we're at. Withdrawing treatment or just not replacing seems like semantics to me. It would seem a shame if they kept up with it when it's not in his best interests just because at one point it had seemed like it would help.

I'm trying to understand how lack of fluids came to be seen as for the best on this pathway. It just seems to me like it would be a really nasty experience. They provide pain relief when necessary, does that stop the dehydration hurting? Or does dehydration not hurt? Is it really just the dry mouth that's uncomfortable?

[sashh]

Fluids are withdrawn at the point where giving them is worse than not (for patient comfort).

So once someone cannot swallow and when a drip is either no good or a vein cannot be found.

Fluids need somewhere to go to hydrate and then to be eliminated from the body. At the end of life if the kidneys have shut down fluid is not processed and begins to pool as it cannot be eliminated.

[EmmelineGoulden]

Thanks sashh. I hadn't thought that he might not be able to process fluid.

I guess part of it is just trying to come to terms with death. Getting caught up in detail as a way to ease thinking about him passing.

[NannyPlumIsMyMum]

Sash is right.

I work daily with patients on the LCP - it is about giving comfort based care - there comes a point where giving fluids can actually distress the body and cause pain .

If you think about it - by giving fluids in all situations then you are going against nature - because the body is shutting down.

Mouth care should be offered - but some patients refuse this - because at this stage they really don't want any intervention - and just want to be left in peace.

As humans we naturally have an instinct to "do something" , to intervene . But there are those instances where actually , doing nothing but keeping the person comfortable is in the best interests of the patient.

And keeping somebody comfortable does include withdrawing fluids .

I hth.

[EmmelineGoulden]

Nanny I'm sure you don't mean to, but with this:

"If you think about it - by giving fluids in all situations then you are going against nature - because the body is shutting down."

you make it sound like a dogmatic approach not, as I understand it, an individualized way to ease the end of life stage.

I realize intrvention is going against nature. But so is pain medication and an awful lot of what hospitals do that we are very grateful for. So I don't find that a helpful way of looking at it at all.

[Amazinglily]

Just because a person has had a fall, does not mean that he should be put on the pathway, giving fluids can and of course does aid recovery.

A fall with any old person, let alone at the age of this gentleman, will be very serious. If his mouth is dry, fluid can be given through a straw, with one end of the straw sealed, to ensure it just drips in. There has been a reported recovery, using this method, also small teaspoonful's of water, or a cloth can be administered. If NHS staff try to prevent this, then in my opinion they are not acting in the best interests of the patient.

It is absolutely irrefutably true to say that the LCP has been used incorrectly and decisions have been made based on assumptions, which have turned out be an incorrect evaluation and those decisions have led to the death of the patient.

In fact there is no need to use the Pathway at all. Instead, care should be based at an individual level, whilst a patient may indeed be dying, there is no way the exact time of death can be predicted and the removal of fluid can lead to a very unpleasant death, by dehydration. Particularly if forced over long period of time.

If this gentleman is taking fluids through a cloth or drops of water, then he wants to drink, removal of fluids at this point is quite simply unethical and unprincipled. Members of close family should be informed if the LCP is in place, however you can refuse this, if you believe it is being misused, or that the criteria for the implementation of the LCP is being abused.

I do not ascribe to or support the LCP being used in a routine manner, it should only be used alongside the strictest and stringent of criteria and diagnostic assessment! The abuse of the protocol of the Liverpool Care Pathway, under no doubt at all amounts to killing the patient, it is as simple as that.

There is no justification to withhold fluid and just because a patient cannot reach water, it does not mean that they do not want or need water. If there is any indication at all that the patient is willing to take even the smallest drops of water, then the LCP protocol is simply being abused! -

Finally as regards intervention this is what makes us human, if you think about it, if no one intervened when a motor accident happened,in many cases there would be a certainty of death. Intervening makes us human and is a compassionate act, depriving fluids however is not.

[EmmelineGoulden]

Amazinglily your post is exactly why I did not use LCP in the title of the thread. It is spectactulrly unhelpful at a difficult time. I needed this thread to be supportive and informative. Not a springboard for your own brand activism. Please keep your thoughts to other threads where they might be welcome.

[crashdoll]

Emmeline and sorry your thread got hijacked. Hope you've got some support from the helpful posts. All the best.

[NannyPlumIsMyMum]

Sadly you have read my post in a way that it was not meant .all decisions have to be made according to individual circumstances , carers wishes, patients prior wishes and values beliefs etc.

With holding fluids can sometimes be in the best interests of the patient . Giving fluids at the end of life can be very uncomfortable for a person. To give fluids in some instances , does , go against what the body is trying to do if it is preparing for death .

Sorry that you misinterpreted my post
I'm even more sorry that it has given somebody like Amazinglily the opportunity to selfishly purport their own views on the LCP. There is an awful lot of misunderstanding around LCP. Posts like Amazinglily only serve to maintain them and cause distress. Very harmful indeed.
I hope that you feel the hospital have taken your views and wishes into account , and that they are consulting with you in regards to any decision making.
If you have any concerns at all make sure that you ask for them to be documented by the nursing and medical team.

[NannyPlumIsMyMum]

I'm really very sorry if my post called you distress.
I really hope you feel your relative has been comfortable and cared for with compassion.
I only ever meant to reassure you that with holding fluids can be in the best interests of comfort . Sorry again.
Would never normally post about this issue - but strangely had been talking about the issue earlier that day with a colleague.

[lougle]

Sorry it's very medical, but This article explains the effects of dehydration. As does this hospice leaflet

In short, dehydration can lessen nausea, vomiting, diarrhoea, circulatory overload and allow the production of endorphins, which are a natural pain killer.

Sorry your family is having to cope with this situation

[NannyPlumIsMyMum]

I'm really very sorry if my post called you distress.
I really hope you feel your relative has been comfortable and cared for with compassion.
I only ever meant to reassure you that with holding fluids can be in the best interests of comfort . Sorry again.
Would never normally post about this issue - but strangely had been talking about the issue earlier that day with a colleague.

[EmmelineGoulden]

Lougle Thank you for those links. They were very helpful.

Nanny sorry I misread. Most of your post was helpful and reassuring. I did realize you didn't mean it to be upsetting. I guess in the rawness, I was looking for a certain kind of comfort and the way that phrase struck me stung a bit. I do appreciate you posting. Thank you.

I do think the hospital staff acted in consultation with family - not with me, but with his children. My questions were for my benefit, not his. There was no way to ask the care team without his children hearing, which I think would not have been helpful to them.

He did seem, to my eyes, more comfortable on the LCP than he had a few days before.

He passed last night.

[lougle]

I'm sorry that your Husband's Grandfather has died, Emmeline. I'm glad though, that you felt it was reasonably comfortable process. I think we live in a culture (fueled by media) of expectation, that hospitals fix patients and they get better, or that they die instantly and painlessly. Of course, the reality is that for most (barring catastrophic accident or medical crisis) death is a process which can be surprisingly drawn out.

The LCP is research based and despite media controversy, the consequences of continuing with intervention when a patient is clearly close to death can be much more distressing than withdrawing such intervention. I have to be honest though, when I trained as a Nurse, it took me a journey of discovery to come to that understanding, and at first it all seemed abhorrent and inhumane to me. I eventually came to the realisation that sometimes continued treatment is more about comforting onlookers than giving the patient superior care.

I hope the next days and weeks are peaceful as funeral arrangements are made and your Husband's Grandfather's affairs are tied up.

[NannyPlumIsMyMum]

Emmeline - I'm so sorry for your family's loss.

You sound a very supportive caring family member - if all family carers were as interested in their loved ones care -as you have been - then that would help our society .

I hope that the your family start to recovering x