Very distressing. Withholding water at end of life care. Is this really right palliative carers?

[Haffdonga]

I'm sorry to bring such a distressing issue here but need to ask people who deal with palliative care.
My very elderly neighbour is dying and I'm supporting her lovely very elderly dh who is of course devastated . I'll call them Bill and Mary. Mary is currently on an 'end of life plan' in hospital and not expected to last more than another day or two. She is unable to talk but still able to show she's aware/ awake every now and then.

Today after spending all day with Mary, Bill was highly distressed because he told me that at many times through the day Mary was clearly desperate for water pointing at the water jug and miming drinking. He's been told by the nurses that she mustn't drink because she 'might drown' (Bill's words) and is unable to swallow but they were able to wet her mouth.

I'm so sorry to sound brutal but is this normal? Is it true that she would choke if given a sip of water or is it actually a way of hastening the end? It seems barbaric to me as she was so obviously aware and thirsty and I found it very difficult to comfort Bill that this was the best for Mary.

Northern "The drugs given at end of life include something yo dry up the secretions as well as pain killers and sedatives."

Would it be the case that they give the patient a drip at the same time as these?

Goldfishjane IIRC when my mum was approaching end of life, she had medications to dry up the secretions as she had no swallow while still having fluids to keep her hydrated.

Gradually food (through a tube) and hydration was reduced. Often people who are very ill are not hungry so withdrawing nutrition was not cruel. I also agree with the poster above who mentioned that not being able to swallow and aspirating/choking/ having fluid in the mouth/throat is much more distressing.

I'm so sorry for your neighbours and I hope Mary passes peacefully. X

I am a carer, have done a little of bit of palliative care recently... I have looked after someone who lost their ability to swallow towards the end of their life. The food/drink can go straight into their lungs causing them to aspirate or can cause pneumonia. It was very distressing when they were begging for water but the alternative of watching them choke was alot worse.
We used a special gel in their mouth/on lips, sponges on sticks dipped in water. Tried to distract by chatting to them about various things. I imagine your poor neighbour feels very helpless, he needs reassurance at this stage that they aren't just withholding drinks for no reason.

A drip would solve the problem if it is not true that fluid builds up in the lungs. They don't do a drip because of it prolonging life, but to my mind if it saves dying in torture so be it.

They don't withhold fluids due to it prolonging life in my experience.

I have watched quite a few people die who were not for fluids and I must say every single death seemed peaceful and painful. It completely got rid of my fear of dying actually because everyone I have helped look after who is dying were passing peacefully.

Giving fluids to a dying person who is very close to death would not result in a better death for all the reasons mentioned. I know it can seem cruel to loved ones, but it really isn't.

Yes, there was nothing wrong with the Liverpool Pathway at all.

OP

peaceful and NOT painful ffs. Sorry.

It is true about fluid on the lungs.

In your post you made that seem as thought the cause would be the water going down the wrong part of the throat through the inability to swallow, and then into the lungs.

But I wondered if what I had been told was that fluid in the body/blood builds up in the lungs? If it does not, then surely the answer is a drip, even if life is prolonged for a little.

If there is a way of giving fluid into the body safely through a drip, then I think that ought to be given or the subcutaneous infusion of saline Grohlette's father's doctor gave him, when they saw her father trying to say, "water" and Grohlette was distressed by that.

Looking at a person dying there is no way to know what is going on in their mind, and their mind can be badly affected by no fluids. I know my mind can anyway, I would be having a nightmare.

I feel very uneasy about this indeed.

Well done op. It is a difficult time and hard to know what to do for the best - I have been there. It sounds like you are all doing ok.

It was phased out because of irresponsible media coverage playing on people's fears.

No that is not why it was phased out. It was phased out because it had come to misinterpreted and badly implemented. It can be horrifically cruel under the wrong conditions.

The LIverpool Care Pathway.

Are you suggesting that the people caring for her lied about her not being able to swallow, to purposefully deny her water? Why would they do that?

U2 "I have watched quite a few people die who were not for fluids"

you mean they were not given them?

I'm the opposite, I had no reason to fear death until I saw what happened to a couple of people in end of life care.

No the LCP was not 'horrifically cruel'.

Horrifically cruel would be continuing to subject the dying to needles and cannula, putting fluid in to the body that it can't process, failing to give adequate pain relief and symptom relief.

If you administer fluids iv or subcutaneously to a palliative care patient, it can increase distress due to the body being unable to process the fluids. It can also prolong life and, without any nutrition, the person would starve.

A state of dehydration can stimulate endorphin release which will decrease feelings of distress and pain.

Palliative care patients should be given fluids via a sponge or with added fluid thickeners to make swallowing safer, if they're still able to swallow. They also make sprays and gels to keep the mouth moist and comfortable. We take our lead from the patient and what they appear to need and can manage at the time.

If you can't swallow then some of what you 'drink' from a cup will run down your throat into your lungs. This will make you choke and cough because you are breathing and the air will be obstructed, your lungs will fill with liquid. Very frightening I should imagine.

Something similar happened with my Dad who died nearly a year ago. He was mostly sleeping but would regularly kind of half rouse and ask for water, groan and say 'help me'. It was incredibly distressing. Of course we understood why as he had pneumonia but it was awful to deal with. He did calm down when we talked to him though. He definitely knew our voices compared to the nurses.

It really only improved when they put one of the drugs (I think it was tramadol but can't be absolutely sure) in the drip and it was administered continuously rather than waiting for him to show that he needed it before giving it to him. We had to push for that though.

Northernlurker 'No the LCP was not horrifically cruel'

Then tell me why I have PTSD over my Mother's death 7 years ago on the Liverpool 'Care' pathway?

My DMiL was given everything she needed, including hydration via a drip, and died very peacefully and comfortably before she even got to the hospice, after a really, really difficult illness. I am very grateful to the kind staff who helped her.

Pannalash - really sorry you had such a bad experience but that was not because of the pathway. That was because of the skills and experience of the people using the pathway. Have you talked to anybody at the hospital? If you ask to be put in touch with their lead nurse for end of life care I think they would be able to help you.

Lolli pop maybe good op, it was last thing could eat.

and yy mouth swobs, and gels...

So there are two choices - die begging for water, or die struggling for breath because you're choking on fluids/your own secretions?

We need to start talking about the option of killing people instead of letting them die this way. In this situation I'm definitely pro-euthanasia if that's what people want.

This is often the case after a stroke or someone losing swallowing mechanism.

Once my Dad slipped into a deep sleep I begged doctors to give him a drip as his body physically dehydrated infront of me. It was refused as we knew death was imminent and a drip would prolong his suffering. Could this be similar to your neighbour? Is she very lucid still?

IV and subcutaneous fluids can not be processed effectively in a dying body. Renal function is already poor, and the cardiac system can become overloaded leaving a persons lungs full of fluid and causing effects similar to drowning. The fluids may not even be absorbed properly at the point of entry, causing painful swellings and potential infection.

OP you could always ask the staff to reassess Mary's swallowing on a daily basis. Sometimes a patient may be too drowsy and unwell in the morning but they may be able to swallow more safely later that day.

Also ask them what mouth are products they are using. There are lots of synthetic salinas, mouth gels and mouthwashes that can be used to promote comfort.

couldnt drink water but was able to have a lollipop in my experience.

Addley I could not agree more its bloody in human.

There must be ways to allow us to choose how we die - its horrendous.

I want to be able to put down in writing now - the stages I want to get too before I am bumped off, and I dont see why I cant bloody well chose this now - at 40 and in full mental capacity.

When someone whose condition is terminal says " I want to go, I want to die" why should they have to wait weeks till the end?

Had to watch my mum die like this from terminal cancer in a hospice before she was 60. At the end they withdrew food and fluids. It took about a week and I'm actually having a weep typing this because all we could do was sponge wet her lips, oil her limbs due to the extreme dehydration was making her skin uncomfortable and she knew what was happening. It was horrendous for everyone concerned.

If we did this to a pet then we could be prosecuted for animal cruelty but it's ok to do this to humans.

If I ever get diagnosed with a terminal illness I plan to pop my own clogs by myself and by my own hand so I don't suffer or make my family and friends suffer like that.

Dying like my mum was not quick nor peaceful nor dignified and I know others who have gone through what my mum and family went through.