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.

At the end we wet my relatives mouth with a sponge on a stick thing rather than give a drink of water.
Sending kind thoughts to you x

Depends often you lose the ability to swallow, only being able to suck on the special mouth swab things is all you can do.

It may be that she's lost the ability to swallow and although thirsty it would be very dangerous for her to drink.

It's such a shame that she's asking for water but isn't being given it

Thank you both. So she may genuinely not be able to swallow.

If she is unable to swallow then she wil be unable to prevent fluids going into her lungs, usually they offer mouth care to keep a patients mouth moist and to aid comfort.

Unfortunately people do lose the ability to swallow so this probably isn't anyone being cruel. The sponges on a stick are safe to use.

My aunty had a spray bottle to spray every so often into my grandads mouth.

this might be helpful
They can start to build up fluids in the lungs and other tissues, if they have IV fluids, they are usually discontinued as the fluid just builds up.
We always gave sips of fluids, I've even given a cup of tea (they drank a few sips) at the end of life. Usually they aren't interested, and mouth care is more appropriate.

Yes it's normal, choking on water is likely to be more distressing than being thirsty. Good mouth care is v important.

If she is very distressed it might be worth asking about sedation, so she is not upset or anxious. Theres nothing to be gained by withholding this if she is within her last few days

Yes she can't swallow by the sound of it. Poor Mary.

Staff can and should offer mouth care including a wet mouth swab (looks very much like a lollipop on a stick, or used to)

Very common.

They usually have pink spongy things to keep the mouth moist and coconut oil or similar to keep lips from drying up.

As well as not being able to swallow, it can actually put more stress on the body by taking in fluid as the body is unable to process it.

Thank you so much everyone. That really helps me feel much better myself. I'll be able to hopefully reassure Bill better tomorrow.

Thank you,

And Squinkies thank you so much for the link. I have skim read.

A friend of mines DM was in the same position and was told no fluids as it would prolong her life. My friend went to the hospital shop and bought her a small tub of ice cream. Her DM actually lived another few years!

Poor Mary (and Bill) Hope things go as smoothly as possibly for you all

I'm glad you'll now be able to reassure him. And well done for being there for him.

Unfortunately giving water increases body secretions and the person will make mucus which can block the air ways causing horrible choking.

The patient loses the ability to swallow so the mouth should be cleaned with glycerin sticks or similar.

Being dehydrated is a comfortable way to die.

I'm a district nurse and end of life care is a large part of our role. I'd just like to reassure you as others have that although to us it seems distressing to not drink or eat, it is a natural part of the dying process. It is very common for someone to gradually be unable to swallow which then makes choking a very high and distressing risk. Mouth swabs are used to maintain good mouth hygiene and provide hydration through means that minimise any distressing episodes for the patient and their families. As others have said putting up fluids can also worsen symptoms and highest priority is making sure the patient is comfortable in these last days or hours. Bill is lucky to have a thoughtful friend in you at this difficult time x

They can also give a fake saliva product to stop the mouth feeling really dry. It is a gel that can be applied to the tongue and around the gums.

to you and Bill. I also found this extremely distressing when my mum was dying.

Sorry you and your neighbours are going through this sad time.
As pp have suggested sponge/minimal water to keep mouth moist

Hopefully this will reassure your neighbour too and pp link will enable you to ask any questions at the hospital.

Prayers for you all

This can be terribly distressing for the family as it seems really cruel to withhold water and food ( almost like they are hastening the death ). But death is a process that happens over time and the body systematically shuts itself down, losing the ability to process anything consumed. So food or even water can cause great discomfort to a dying person. But Mary's mouth and lips should be kept moist to keep her comfortable, as others have said.

Sadly, at the end of life, patients can feel terribly dry, but are unable to swallow. My DF was.
As described by pp, the only solace is sponge sticks with water on them or sprays.
Very many sympathies to you and your neighbour.

I'm sorry OP, but I need to say this. Why is it OK to leave the water jug in view of a dying person who is that thirsty? At least put it where they cant see it, and swab their mouth.