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.

I have to say I agree with Northern and special. The LP isn't intrinsically bad. We make death far harder than it need to be. Natural death is often ugly and painful. It doesn't have to be that way

Dying can be a slow process, during which the body and the internal organs gradually shut down & stop working.
Once the kidneys have stopped working (no urine being produced) the body is unable to filter out any water and so any fluids taken in (either oral or through a "drip") will stay in the body & increase the volume of the blood.
As the heart begins to weaken it doesn't pump as efficiently and so fluid can build up in the patient's lungs.
The swallow reflex will also weaken, meaning it is much easier for fluids to slip down the "wrong hole" and end up in the patient's lungs
So yes, it is very possible for dying patients to drown on fluids

Jigglytuff 'Natural death is often ugly and painful' this sums up my Mother's death on the LCP succinctly.

I think I have read most of the thread, but had to go out quickly so may have missed some, apologies if so.

Just to say that I have not had to support a relative through their death, but am a speech and language therapist working with adults with swallowing problems, quite often at end of life. I don't regard myself as an expert, I'm learning all the time.

What worries me is that Bill doesn't say that he is raising this with Mary's team. I hope he is, and is just getting extra support from you - I'm sure it's incredibly helpful. But he should feel able to say that he's worried and ask his questions of them, and get an answer that makes sense for him.

I also think that Mary gets choices here - she may well aspirate (liquid going the wrong way) on water, but she has a choice as to whether the aspiration or the dryness is more uncomfortable - she should get the chance to say what she wants. If she's not able to do that, they should be willing to try both and see how she reacts. Drinking/sips at risk of aspiration is her right if she wants, as long as she understands the risks.

It's very unlikely that Mary will want to sit up and have huge cupfuls - the doctors/nurses may be able to give Bill an idea of how many sips per hour/day might be OK without running into worse problems down the line.

I, and other members of the team, often try ice chips with patients in this situation. Many wards will have machines that make tiny pieces of ice, if not, then ordinary ice in a bag bashed up would be fine. An ice chip is a tiny amount of fluid but the oral pleasure and relief they give is out of all proportion to the fluid amount. Agree also about ice lollies. Sittng up is a really good idea to reduce aspiration if she still can, but obviously not at a cost of increased pain.

If you can encourage Bill to say as often as he needs to that he's worried that Mary is too dry because of her consistent signing for sips, that would be a good thing. It may well be that she can have fluids under the skin or other things. At least if he asks and gets an answer that makes sense, he should feel less traumatised than others on this thread have been

Pannalash Thank you for explaining what can go so wrong even when it meant going over something so traumatic for you. I am very, very sorry that this happened to your mother, and I am not surprised you are depressed and have PTSD and can't get over it. for her for you.

From what you say though you made an enormous difference by helping her with the mouth sponges. Most of all she had you there, and I am sure that that is what would have meant so much to her. For you to feel this way, you must have been so full of love for her in her life too and she for you, and that will always be there.

We can all learn from what you have said and at the very least try to question doctors; at the very least be ready with those mouth sponges.

When my mum died back in January, I kept her mouth moist with sponges, and I also had some lip cream for her that I applied regularly. I think this helped her be more comfortable.

I agree that a natural death can be ugly, noisy, distressing and prolonged. In my mums case, she was up as normal on Saturday, on Tuesday I was called to come in as she was suddenly near the end having been in bed and not had anything to eat or drink since Sunday. She died Thursday evening.

Good luck OP, hope Mary passes soon.

I have read some more: Take care not to make the sponge too wet, and possibly have the dying person propped up. Ice chips and ice lollies help too.

Pinkdaffodil and Someday, thank you for explaining he physiology of dying and why fluids may make things more difficult. That is very convincing. But I think it is only convincing for a certain stage in my opinion - there should be constant monitoring and I don't believe that always happens. As a result thirst without endorphins (in that the person feels they are dying from thirst) does happen.

In my Ms and Mil's case there would not have been sponges had we not started to fret and make a fuss.

As for how much true care there is, I also experienced a nurse refusing to help prop up my 4 stone mil on her pillow when her back ached. I do not believe the care is always properly there. Doctors are more or less unavailable to talk to and they keep changing anyway and don't always know what has been happening to the dying person day by day before when you do find one.

Ask bear grylls about the " rule of three"..3 days without water, 3 weeks without food etc..that is your life expectancy! To withhold a drink from a dying loved one seems very discompassionate to me, whatever its side effects.. they're going to die anyway!

To withhold a drink from a dying loved one seems very discompassionate to me, whatever its side effects.. they're going to die anyway!

How about a noisy rattling chest as your lungs fill with water, gasping for breath, and inability to cough? By that point, the dying person may have no ability to move, cough, or even clear their throats...
In her final day my mum could barely move her mouth, or her tongue.

To withhold a drink from a dying loved one seems very discompassionate to me, whatever its side effects.. they're going to die anyway!

So they might as well choke on fluids? Or aspirate? That doesn't seem very compassionate to me. It wouldn't be a nice way to die at all.

Hi all,

We're just moving this thread over to our life-limiting illness topic as we think this thread is very helpful and don't want it to disappear.

Yes, it is very useful. That's a good idea Lorna

Thank you Lorna. It strikes me that there is a lot of misinformation and misunderstanding which is at the heart of relatives' discomfort during EOL care. Is there a guide or something?

There certain is a guide - here are the NICE guidelines on caring for dying adults in the last days of life - this obviously requires everyone to agree that a person IS in the last days of life.

Note that the guidelines are much more pro sips of fluid than you might think. OP, do you think Bill would be up to taking a copy of this into the hospital and using it to back up his discussion with the team?

Thanks Anna - I thought there must be! I think that's a really good starting point for conversations with HCPs

This is from the hydration section of the NICE guidelines.

1.4.8 Consider a therapeutic trial of clinically assisted hydration if the person has distressing symptoms or signs that could be associated with dehydration, such as thirst or delirium, and oral hydration is inadequate.

I note the guidelines here do not say, "Do not worry about the dying person if they have distressing sypmptoms of dehydration, as they will be full of endorphins."

Please read them yourselves to see that the guidelines do also mention there could be a risk of water in the lungs from giving water or a giving an IV drip etc which would need to be weighed up against the benefit of giving hydration. This danger is what some knowledgeable posters explained about. But the guidelines do not seem to suggest in any way a blanket policy of no hydration at the end of life.

Also I think clinically assisted hydration means subcut fluids or IV fluids (sorry haven't gone back to read it), it doesn't mean sips of fluid by mouth.

Endorphin release during the end of life phase is well documented.

When caring for a patient who is EOL, the caregivers are led by what the patient appears to need, their level of consciousness and any agitation, apparent pain etc. You can't apply a blanket policy under those circumstances.

helpmitchy
Endorphin release during the end of life phase is well documented

but so are: distressing symptoms or signs that could be associated with dehydration, such as thirst or delirium

The first should not be used to presume absence of the second which some posters have been absolutely aware of when seeing their loved ones dying.

anandale inthat bit of the guidelines I quoted it was saying "to consider clinically assisted hydration....if....and oral is inadequate."

I meant because endorphins are well documented, that does not mean distress from dehydration does not ever occur. There should be no assumptions made.

The thing is, dehydration in a conscious person who is not near death will feel different to dehydration in a non/semi conscious person who is nearing death.

We take it person by person and hour by hour. It is not a natural thing for a person who is nearing death to eat or drink. It doesn't occur in nature. When a person is dying they become disconnected from external influences and the body is shutting down. Water can no longer be processed and will cause discomfort if given. If the person is able to take sips or have hydration via a sponge, then that's fine and what they need at that time, but to enforce artificial hydration is the wrong thing to do.

It is not a natural thing for a person who is nearing death to eat or drink. It doesn't occur in nature.

How do you judge when a person is 'nearing death'? Two or three days away from death? Two or three weeks? How can you ever really know? Many people carry on for much longer than their prognosis and there have been cases where relatives gave some sustenance against advice and their loved ones rallied.

There are lots of things which occur in nature which we find unpalatable. Taking care of the weak doesn't occur in nature. If we followed all that was 'natural' we would be leaving people to die at the roadside.

clinically assisted hydration means subcut fluids or IV fluids

Even that needs monitoring carefully. My mum had not been able to drink for two days, and the doctor stopped the IV fluids when mums chest started to rattle more and her breathing became more laboured.

I think relatives are just not well enough prepared, and I would have liked a guide. The "died peacefully in her sleep" or "passed away peacefully" phrases was not a reality from our perspective while the nurses who were used to end of life care referred to her passing her peacefully. My dad set them straight "there was nothing peacefully about it" and they were surprised to hear that feedback as in their opinion it had been peaceful and "by the book".

I am still coming to terms with those last few days of mums life as it was so sudden, yet so prolonged. Her last couple of seconds were beautiful though as she suddenly turned her head, looked straight at me and smiled. I am glad I got to experience that, but the days leading up to that were really tough.

We look for the signs of approaching death. It's not difficult if staff are experienced.

But it's the 'approaching' death which I can't get my head around. Such an inexact science.

Sometimes fluids are withdrawn quite a long time before that person actually dies. And in some ways it's going to be a self-fulfilling prophesy, as of course someone who is not getting any fluids is going to die fairly quickly (not necessarily 'peacefully'), whereas they might have been able to continue some meaningful communication with loved ones for longer, had fluids in some way or another been administered.

Who is to say that they might not have valued that extra time alive?

Obviously, you are not going to give a drink to someone who is going to be choked by it, but that isn't always the case, is it? For example, I don't think subcutaneous fluids are always administered when they could be.