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.

It's difficult to describe how you know, but, to nurses in particular, you just know. You look for physical signs, levels of response, signs of chest infection, blood pressure, pulse and respiration rates, colour and appearance of the skin and extremities. You come to recognise these signs instinctively.

Most dying people are unconscious or unresponsive during the last days. If they do manage to respond, it's briefly and they appear to find it exhausting.

Palliative care, correctly and sensitively carried out, will detect and respond to each stage in the right way which will minimise pain and distress.

Also, subcutaneous fluids can overload the system, affect the breathing and cause localised oedema which can be uncomfortable and the fluid just pools in the tissues and isn't dispersed.

We put MIL on the Liverpool care pathway, withdrew antibiotics too, bless her, she had mouth care and slipped away quickly
Just afterward it hit the news and it pissed me off that they pulled it, reduced its use.

We wouldn't put an animal through it 😟

The LCP was fine in itself but I thought the main problem was its first sentence - when it says that it should be used when all agree that the person is in the final hours of life.

I never saw it misused, but then I've always been based in care homes, not hospital. I suppose it was like any tool; it works well if it's in the right hands.

We still use the end of life pathway with the same care, it's just not called the LCP any longer.

The public were misled about the LCP. They're also misled about nutrition and fluids in palliative care.

They're also misled about nutrition and fluids in palliative care
That may be true in some cases but if you read the full thread you will see posters who saw with their own eyes that their dying loved one was wanting water very badly and not being offered any relief.

That's a separate issue though. If someone wants fluid, then of course they should be assisted to have it, but they shouldn't be made to have fluids by well meaning relatives who mistakenly believe that they will be beneficial, when in fact they may cause problems for the dying person.

Nobody that I've ever worked with has ever denied any fluids when the person has been able to take them. We have taken subcuts down though when it was clear the person was dying or when they were filling up with fluid which wasn't being processed.

I don't believe that hospitals are able to provide palliative care and that many of the staff lack the necessary skills to be able to do it properly, this is why it goes wrong. Ideally, every hospital should have a palliative care unit where dying patients could be transferred to in order to be cared for appropriately. Care of the dying patient is so low down on the list of priorities that it doesn't even feature in hospitals. Every other department is provided, but nothing for palliative care. Seems ridiculous to me.

This is a very emotive subject for me. My DD had all fluids removed at the same time as all food, when diagnosed with malignant obstruction.

He was very much aware of how desperately uncomfortable he was having been denied any food or, worse, drink. And he was in a small side room, so his bed was sat just out of arm's length of the tap. Just torture.

We had it explained to us. But he was slightly addled with an infection, so didn't quite understand why he wasn't allowed to drink. The number of times he pleaded and (cursed and questioned why) he wasn't allowed a drink.

So cruel.

The mouth gel was disgusting, so when he was offered that it made it worse for him as it then gave him a horrible taste in his mouth.

And he was never offered a wet sponge.

When they finally declared he had hours or days left, he was given some water and a cup of tea.

Some blessed nurse said that she had ignored the blanket ban and had allowed him an ice chip or two to suck on. I had so much gratitude for her.

It really is one of the worst memories of that time.

I'm afraid I don't agree with the above. The withdrawal of food and water is one of the reasons that the hated "Liverpool care ( death) pathway" was withdrawn. My father died in a hospice and was encouraged to eat and drink for as long as he wanted. if this lady is asking for water there should be a clear explanation given to her and her friends and relations about why it is not being provided. if this was my relation I'd be asking for a clear explanation as to why in this particular case ( not a load of old platitudes) water was not advisable from the consultant in charge and I would make a note of this and ask them to sign it.

AIBU to expect hospital to respond in a timely way to my brother's health problems? The only time the nurses react is when we are calling them into the room and pointing out issues.

On Saturday My brother's tracheostomy looked dislodged and was making an awful noise. He's had it since December last year and is still in hospital. We've pointed it out to the nursing staff but they've dismissed our concern and taken no action. He's also been waiting to see a dentist from the Galleries Health centre in Washington since march. He has toothache but they just keep telling us he's on a list for a visit and that painkillers are helping; they aren't! What can we do? Last night we noticed he was breathing differently and grimacing and squeezing my hand very tightly. I asked for the doctor to be called. She came and diagnosed after tests that he had an infection and prescribed three types of antibiotic as they didn't know where the infection was, just that it was present. The nurses NEVER notice a change in his health, it's always us. After so many months I'm feeling really drained and disallusioned with the standard of care being provided. How can I get improvements in place?

shielahussain

You might want to start your own thread.

This is such a well informed and useful thread.

I found the feedback about withdrawing fluids at end of life extremely informative. My lovely Mum is in hospital as I type, her cannula came out yesterday, it's heart-breaking, but I found the posts on this useful.

Sarahddraig and anyone who finds themselves looking for these answers

My wife didn't want to, and really couldn't eat or drink in the last two days of her life when she was actively dying. She was withdrawing and losing consciousness.

I’m bumping this thread as my 95 year old dad is currently in hospital after a massive stroke 4 weeks ago. He started to improve a little bit then got a few chest infections as his swallow is impaired. Last week they took to decision to remove all cannulas / NG tube and antibiotics as nothing was working.

He had a good few days, able to eat purée and sip drinks but he’s so incredibly thirsty. He’s got frailer and frailer every day, now only eating a few spoons of food but is asking for drinks. He’s only able to sip due to the risk of aspiration. It’s so distressing as he’s obviously uncomfortably thirsty.

He’s confused and calling out our names to ask for water, we give him as many sips as he can manage during visits but I’m not convinced that he’s having the one to one care that he should when we aren’t there. I feel like they are allowing him to dehydrate away.

Does anyone know whether he can be given meds to relax him at this stage? What stage is this? Is he actually dying yet? It’s so distressing to us as a family to see this.

Family member was on a morphine pump for the last week or so. So we have to presume wasn't aware of what was happening.
I thought to myself it would be better if they were at home, or someone's home, where we could turn up the rate of the drip (not that I know how to do that) rather than prolong this misery. Traumatic long days for family and presuming the patient was unaware would have been better to shorten the end.
The patient hadn't eaten or drunk so no need for incontinence pads or washing. Apart from a bed bath type of wash. Body was skeletal.
More comfort for family in someone's home where they could make cups of tea and perhaps neighbours etc could call to support family but it was in a Care Home and in the end no one was with them when they died in the early morning.

Though we are so uneducated about dying that I don't see anyone suggesting to a family that they take the loved one away for these final days, as it's very shocking for the family to see them so frail but I think being at home with someone would be better all round for the end. In a Care Home there isn't someone with them all the time, they get occasional checks, and if there is some sort of emergency they send them off the A/E anyway. So they could be at home instead.

Morphine pumps are made so you can’t deliver a fatal dose.