To not want my mum to be put on the medical pathway?

[ClippedPhoenix]

My mum is dying. I accept that and she's in hospital. They want to put her on the "pathway" and take everything away. Im in agreement with taking the antibiotics etc. away as of course she won't be cured. Im not in agreement with them taking her fluids away. She is lucid and comfortable. My thoughts are that she will go of course but I've heard that taking fluids away is very painful and maybe its me wanting her to sit up, talk to us then go but I'm so reluctant for them to give her so many drugs (for the pain) that she will be in a coma for her last days. Could someone explain this?

ClippedPhoenix sorry to hear this, such a hard time. Just wanted to reiterate what pps have said - the pathway just stops people being given intravenous fluid as it can make them swollen, it is very painful to put the needles in to give it, and it doesn't help symptoms and as some have said can make breathing worse by fluid accumulating in the lungs. On the pathway she is free to eat and drink in lucid moments if she fancies it, just as she did do earlier. At the very end the desire to eat and drink is goes, but sips of water or fluids are always offered if the patient is conscious and if the patient is sleepy then the nursing staff keep the mouth moist. All the pathway does is coordinate care to minimize suffering, alleviate symptoms, and maintain dignity. It does not change the outcome or hasten death. I hope you are doing ok, good to hear that other family are around so you can support each other, take care.

Ive just heard from the doctors that she has made an improvement despite being 4st and having pneumonia (shes 81). it was shit or bust there. My mum has a will of iron and Ive just told her she's coming home with me if she eats and gets a bit better. Obviously this is terrifying for her! its perked her up though and im going to make damn sure her last however long will be full of laughter. told her to bring her own commode though.

Good for you, what a lovely lady your Mum sounds

Phoenix you sound lovely too - very best wishes to you. Laugh long x

For those claiming its humane withdraw fluids from yourselfs for a few days see how humane you feel then....

OP I wold seek legal advice ASAP I wouldn't trust the hospital in the slightest.

LittleBairn, it really is different when someone is dying. Truly it is. The fluid accumulation that dying patients experience can be painful and distressing in itself. The laboured breathing, the load on the heart - it's just more work for an already exhausted body.

It also stimulates the production of endorphins, which are the body's natural pain killers.

I feel for you Clipping, I lost my mum last year, she passed away before we ever had to make such a hard decision, but her last days sound uncannily like your mums

Little it is different. She won't be refused a drink if she wants one and is able to swallow it. The human body can tolerate a certain amount of dehydration. Equally if she can't swallow her mouth will be freshened up. lougle has reiterated what had already been said about the disadvantage of fluids. Add in the fact that its incredibly difficult and unpleasant to try to get IV access when someone is shutting down and offering drinks as required really is the kindest way to manage the situation.

Phoenix also remember this decision isn't reversible - your Mum will be reviewed regularly and if she improves they can always start active treatment again.

Littlebairn there is a vast difference between a person withdrawing fluids from a healthy person than a dying person. I would suggest you actually read up on the physiology of these things before posting incorrect statements like that. Clippedphoenix is going through enough as it is without reading things like that which may worth her.

Clipped your mum sounds awesome btw. I do hope you and your family are all ok.

Clipped, I'm so sorry to hear this as it must be so hard for you. Your mum sounds great.

And yes what havingalittlefaithbaby said. I've taken a few people off the pathway when they improved, they all had to go back on the pathway in the end but it does happen.

*worry not worth DYAC!

I've had some people significantly improve, some people stabilise enough to be discharged, some later deteriorated again when the LCP was reviewed. The LCP clearly states the decision needs to be reviewed every 72 hours to make sure it's still in the patient's best interests. So phoenix if your Mum does improve they will review. I hope you enjoy your time together tomorrow.

I really wish that when my mum was dying the LCP was available, it would have made it much more comfortable for her.

As you are already discovering your mum is starting to shut down naturally by want to eat and drink less. She knows you would like to keep her forever but you will need to let her go and give her your permission to go. Let her have what she wants when she wants it but it will become less and less.

I am really impressed by the honesty of the posts by the clinicians on here.

and hugs. I watched my brother and my father die but in both cases there was no lucidity or speech for the last 2 days so I don't understand what's going on with your Mum, as in why they have withdrawn fluids when she is still communicating. But I'm not a doctor.

Clipped please, whatever you do, ignore littlebairn and consider the posters on this thread who have actual clinical experience of the Lcp.

Littlebairn I don't know who you are or where you've got this total bullshit information but unless you can substantiate it with proper evidence (not anecdotes or quotes from the tabloid press) may I respectfully request you keep this nonsense to yourself. If you have had a negative personal experience of the lcp use then I am very sorry for that but really distressing undignified and poorly managed deaths were much more common before its inception.

I should add that both were relatively fit for their age and perhaps their bodies just kept going longer. Dad had the death rattle for about 24 hours. Hearing is the last sensation to go - consider this while you are with her.

Polly the op Mum is able to drink.

Fluids are not withdrawn until the person is unable to drink and also undistressed by the lack of fluids. Its a standard part of the pathway though that fluids will not be artificially given unless the patient is distressed by their lack and its the thing that causes the most misunderstanding since as a healthy alert individual its pretty impossible to understand how not being given fluids is anything other than distressing.

In the context of a dying patient, as has been explained several times, this is categorically not the case.

It is also never the case that patients who are lucid and asking for a drink are not given it.

It is not uncommon for patients to have moments of being very lucid until very close to the end. In fact I was looking after a patient recently with end stage cancer who I had very detailed chats regarding his wishes with at about lunchtime, he then had lovely visits with his wife and 2 teenaged children but was dead by early evening :(. He was put on the lcp but actually never needed most of the measures on it because in the end everything was so quick.

But although it is usually clear when someone is dying it is very difficult if not impossible to determine how long that will take and what symptoms will need to be managed. Having the lcp in place means that whenever a patient develops a new distressing symptom it can be managed immediately rather than having to wait for a doctor to review, which can take a while depending on what else is going on.

And has also been mentioned, if the patient improves they can be taken off the pathway as it is regularly reviewed.

Nothing is perfect, and a small number of patients may not benefit from being on the pathway. However I have seen many more patients with pain free, dignified, comfortable deaths on the Lcp than I ever saw before.

I have a dear friend whose wife died some 15 years ago; early onset dementia. He bitterly, bitterly regrets that "they did everything for her", she was tube-fed, had more tubes for hydration, more tubes for urination... He now thinks she should have been allowed to "go" as much as six months before she died.

So when my uncle was dying last year, I visited him the day before (it turned out) he died. He was heavily sedated, yes, on morphine I guess by the waxy sheen of his skin, he was not communicating and hadn't for some time. He was not intubated, other than a catheter.

But there was a container of his favourite "juice" at his bedside, and the nurses wet his mouth with it regularly... He was immaculately clean (I actually missed his smell :( ) and on a fancy bed that moved the mattress to prevent bedsores. I'm guessing he was on the LCP.

And when I left, I thanked the lovely, caring nurses for all they were doing for him. And meant it sincerely. I'm glad he was given a peaceful, painfree death, isn't that what we all want?

If you've watched someone die without the LCP, you'd be grateful for how it eases a dying person ...

My darling dad was put on the pathway and I was grateful for it. I couldn't stand to see him suffering, in the end I was begging them to end it for him. It is very humane believe me.

Thanks Yellowdinosaur for clarifying. This is one of the most difficult threads I've ever had to read. But incredibly helpful which is why I'm still here! I think that the crucial thing is that OP has been part of the decision making process and been fully engaged with discussions about what to expect and why her Mum was put on the pathway at the point that she was.

I have utmost respect for those that deal with this on a regular basis as part of their jobs.

Is there any way your mum could be allowed to go home to die? There is such a thing called fast track chc which means that for very poorly patients who are dying that you can get equipment, hospital bed etc and carers in really quickly and it is all paid for.

I feel really sad the lcp is given such bad press when it really is about improving end of life care and ensuring people die with the most dignity and comfort as possible.

No one would withdraw fluids from a patient who is able to swallow however having watched a well meaning relative nearly choke her loved one trying to get him to drink you would understand why its sometimes not appropriate.

the liverpool care pathway is given once a patient has reached certain criteria.do not be scared by it. i have nursed several people on it and at first they were drinking and eating when thay wanted it and needed it ,we liased with the family communicating everything that was happening with their loved one including the family in all discussions about their loved one. we made sure that the patient was as comfortable as possible and pain free .we also made sure that any continence issues were dealt with. we never stopped treating the patient as an individual .we dropped all visitting hours so that the relatives could stay as long as they liked also making sure that relatives were fed and watered .also if your loved one is at the end her kidneys will not be able to get rid of any fluids so actually drinking near the end of life is painful and causes the patient to drown hope this helps

bitchdr I have read about it and understand it. It doesn't change what it does.
Its euthanasia by the back door. Shameful.

Littlebairn with the greatest respect your comments indicate that you most definitely do not understand it.