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Life-limiting illness

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Original poster

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

143 replies

Haffdonga · 01/05/2017 22:23

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.

OP posts:

rightsofwomen · 01/05/2017 22:58

I'm so sorry OP.
The nurses could show Bill how to administer the water swab so that he is part of her care at this very sad time xx

rightsofwomen · 01/05/2017 23:00

And this should have been explained to him or a leaflet given. This is what happened to my dear mum and my father found it so hard to understand.

PurpleDaisies · 01/05/2017 23:01

rights it's entirely possible that it has been explained to him. Loved ones don't always remember everything they've been told when it's upsetting or emotional.

Original poster

Haffdonga · 01/05/2017 23:01

I wasn't there, Baggy. This is what Bill told me and he also said she was clearly miming drinking (lifting cupped hand to her mouth). I guess the jug was there for Bill.

OP posts:

Original poster

Haffdonga · 01/05/2017 23:04

I think it was explained to him. Hence his version of the explanation that she would 'drown'.

OP posts:

Babyroobs · 01/05/2017 23:05

if a dying person cannot swallow then they are at risk of aspirating which is distressing. Mouth care is the best thing - sponges dipped in water, or an ice lolly to suck if they are able.

babyinarms · 01/05/2017 23:07

She may well have lostrich her ability to swallow. All you can do is use mouth swabs for oral care or maybe some wet gauze to wet her mouth and lips and some vase line for her lips. Such a difficult time

TabascoToastie · 01/05/2017 23:11

I don't know anything about anything medical - isn't dehydration generally an incredibly painful way to die? I mean for a healthy person it would be. I had a medical issue once where I couldn't swallow (had to be hospitalised on a drip) and it was the most painful, terrifying experience of my life. I started hallucinating and vomiting bile. I'm not comparing the experience of an otherwise healthy person with dehydration of course, I'm just not understanding why it's not painful for someone in end of life stage - is it because of sedation?

MichaelSheensNextDW · 01/05/2017 23:17

Tabasco in palliative care the person doesn't die because of dehydration.

SirVixofVixHall · 01/05/2017 23:17

I gave my Mum (who died 12m ago) little sips of water from a beaker. A few days before she died she started to just hold the water in her mouth, I had to tell her to swallow, but it took time for her to do it, the fluid would just sit there, she was so weak. It was heartbreaking to see. She was then so doped up with a fentanil patch that she really wasn't able to swallow at all. Soon afterwards she was put on a morphine driver as she was still in pain, and she died 2 days later. Is Mary on a drip? My mum was in a care home, so not on a drip, but my friend's mother died in hospital, of advanced dementia, and she was on a drip so not thirsty. So sorry to read this. .

Zafodbeeblbrox10 · 01/05/2017 23:19

Wasn't there a massive scandal about this sort of "care" in Staffordshire?

KindDogsTail · 01/05/2017 23:19

Use the sponge on a stick. Perhaps a little dropper you can buy from the chemist to put drops of water in her mouth, but only if she is propped up so she can't choke.

I too feel very worried by this. I am not at all sure that dying from thirst is palliative care. I know from myself that extreme thirst causes horrific nightmares.

Someone told me it is because drinking at this stage could lead to fluid on the lungs but I don't know if that is true or not.

I am so sorry for you and your friend

muckypup73 · 01/05/2017 23:22

This is heartbreaking op xxx

KindDogsTail · 01/05/2017 23:22

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.

HelenaWay · 01/05/2017 23:31

KindDogsTail

It doesn't matter if she is 'propped up' or not. If she has lost the ability to swallow then she can still choke whether sitting up or not.

It is true about fluid on the lungs. Once your ability to swallow has gone then you cannot control which 'hole' the fluid goes down, either into your stomach or your lungs.

Goldfishjane · 01/05/2017 23:33

OP you're a good friend
Afraid I too thought this sort of thing was not allowed any more, if she can't swallow shouldn't she be hydrated via drip, unless she left specific instructions? I've seen denial of liquid because of prolonging life and it is so cruel, it gave me the rage. I honestly thought they weren't allowed to do it now.

piedpiper4 · 01/05/2017 23:34

We were told that fluid from a drip would be retained in the surrounding tissue and would cause more pain. Hence why they don't use them at end of life.

owenjonesismyhero · 01/05/2017 23:39

This sounds very distressing, my mother suffered in a similar way. Is your neighbour on the Liverpool Care Pathway? It is being phased for good reasons.

Pannalash · 01/05/2017 23:41

'Being dehydrated is a comfortable way to die'.

Really Dustymaiden and you know this how exactly?

Pannalash · 01/05/2017 23:45

'This sounds very distressing, my mother suffered in a similar way. Is your neighbour on the Liverpool Care Pathway? It is being phased for good reasons.'

Mine too owenjones and I still haven't come to terms with it 7 years later :(

Sorry about your Mum.

NorthernLurker · 01/05/2017 23:52

The liverpool care pathway was actually groundbreaking in terms of achieving good palliative care for the dying. It was phased out because of irresponsible media coverage playing on people's fears. It has been replaced with local pathways that work in exactly the same way.
Dying people do not need large amounts of fluid. The op has had good advice here.

keeplooking · 01/05/2017 23:56

Being dehydrated is a comfortable way to die.

Is it, really? I would have thought it much more humane to put up a drip. Why can't this be done? I really want to know, as I was very distressed to see my dmil with no fluids at the end of her life. I asked a nurse whether it would do any harm for her to have a drip, and she said no. She was going to approach the doctor about it, but I don't know what was decided. Unfortunately hours later dmil passed away. You can't seriously tell me that it is a more comfortable end for someone to die dehydrated.

NorthernLurker · 01/05/2017 23:58

What causes most distress to the dying and those witnessing it is not that a person is very 'dry'. It's when the opposite is the case and there are secretions the dying person can't clear. The drugs given at end of life include something yo dry up the secretions as well as pain killers and sedatives.

HelenaWay · 02/05/2017 00:00

Absolutely agree with this.

Grohlette · 02/05/2017 00:19

My dad died almost a year ago. In his last few days he was delirious and barely conscious. I went in one morning and was sat with him trying to soak his tongue with water from the sponge on a stick. The doctor came to say hello and my dad lifted his head and weakly said 'water!' It really upset me...and I think the doctor realised. I said I couldn't let him dehydrate to death. They put up a subcutaneous infusion of saline rather than intravenous as he had organ failure. It's such a horribly distressing time...it wasn't how I expected him to die. I hope Mary passes peacefully soon, and well done you for supporting Bill.

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