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.

Witholding fluids/nutrition isn't to hasten the death of the dying person by means of dehydrating or emaciating them. As Lelloteddy mentions, there are altered processes occurring in a dying patient's body that may decrease not only their ability to swallow but actually process the fluids.

There may be pain and discomfort when placing cannulas or other tubing for artificial hydration which often due to cellulitis or thrombophlebitis need to be replaced; often there is increased disorientation by being connected to the tubing. There is evidence that a patient's sense of thirst or dry mouth are not proportional to their actual level of dehydration but rather as part of the dying process and/or medication that they are on.

Promoting as much comfort as possible is the aim of palliative care, as it was on the Liverpool Care Pathway which essentially was a pro-forma aimed to ensure that the best practice palliative care that was found in hospices could be applied in other clinical areas. As other users have mentioned there are artificial salivas, mouth swabs and lip balms to help with mouth discomfort and perception of thirst. Most importantly, dying is not necessarily a linear process of progressively getting worse and worse until their eventual death. A dying person has changeable needs and that requires the continuous review of the person to make sure that their status is being responded to with as much comfort and quality of life being promoted as possible.

My grandma was the same - and i stupidly wet the little sponge too much which caused her to choke and wheeze and be very uncomfortable. I regret doing that a lot. You're a great neighbour. Reassure him he's a great husband.

I honestly don't know how we all carry on somedays knowing that this is in front of us, it really is too terrible to contemplate sometimes.

Well done OP on helping your neighbour, I hope her end can be peaceful

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.

The point is that it is possible to suffer.

perception of thirst

Thank you for your informative explanation about all the problems at the end of life which make it difficult to give fluids.

However, in my opinion,
'perception of thirst' is a presumptuous way to describe what may indeed be actual thirst.

Until we can all nearly die that way, but become well again at the last minute it seems to me to be very worrying indeed to think this is not real thirst.

I have watched two people die who were not offered anything by the staff. Eventually by us asking for it some sponges were brought and administered by family emembers. Had the family not been there I doubt the staff would have noticed.

My mum lost the ability to swallow and then was nil by mouth - terminal cancer. We took in cans of G&T for her and dipped the sponges in them for her (her request - the nurses were more than happy - hospital as there were no hospice beds available.) She fell into a coma after 48 hours (we were laughing and joking the evening before) and when she came to was very distressed, confused and choking. They sedated her after that and after a discussion with the hospice nurse on the ward, they put the sedatation in the syringe driver so that she was always relaxed and then it was as if she was asleep for the last three days. (We always swore she hung on until Friday afternoon so that we couldn't do anything until the Monday.)
The nurses and the hospice nurse on the ward were amazing and we knew she'd rather 'sleep' through it. I would encourage him to speak to the hospice nurse if there is one.

Kind in our case it was most defiantly thirst, lollipop went down a treat, other stuff didn't, not thickened water or sponges when too wet however was able to take lollipop.

Lelloteddy Tue 02-May-17 12:26:11
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.

Thank you very much Leoteddy for this information. That is the information someone once had told me which I was not clear about: that it's not just about not being able to swallow well, because even with IV it can be a mistake for the reasons you have given.

I feel extremely worried however about what the state of dehydration does to the brain. For me in my life, I have found that a state of dehydration filled my mind with nightmares of living hell during sleep - and if that is what it feels like to die dehydrated, it must be unbelievably awful.

Someone in one of the threads said that dehydration in the dying leads to endorphins being produced. Does anyone know of a scientific trial proving this?

Kinddogs there is a wealth of scientific evidence out there to support the hypothesis that dehydration at end of life is VERY different to that which occurs at other times.

If you google ketones/dehydration and palliative care that will give you a start on some of the evidence and some of the ethical debates around hydration and end of life care.

Thank you Lelloteddy.

My mum had a stroke at 94. She could not swallow. They did not know if she would recover so she was hydrated via a drip. She was a tiny little thing, and she seemed very peaceful and not agitated. However she stayed alive for 6 weeks. It was a horrific to see her shrinking day by day, never knowing when the end would come. Eventually the drip was removed and she died 3 days later. I think I would trust the hospital,to know what is best.

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.

I agree with NorthernLurker . My mother had a good death nearly three years ago. That doesn't mean she wanted to go, and I miss her every day, but it was inevitable and she was lucky enough to be lucid enough to discuss the manner of her leaving with her doctors.

We weren't in Liverpool but I believe the staff followed this pathway. They were kind and everything they did was explained to her and us. I am angry that patients and families were so worried about the terrible reporting on this that they actually believed that doctors and nurses want to do away with old people to free up beds. That's grotesque.

Whistleblowing on medical cover ups should always be done. That's why the surgeon Ian Paterson is facing jail - but only after maiming hundred of women.

But this wasn't one of those times. It was cynical scaremongering. I don't believe in evil, but the misreporting of the Liverpool Pathway comes close.

I don't agree with Northern on the Liverpool
Pathway or why it was phrased out. It wasn't that people were told the wrong thing about it. In some cases it was handled very poorly. Some cases it was even an abuse of power because people didn't even know they were on it. Sometimes relatives were cajoled into signing to say they agreed to it, when it wasn't made clear what they were signing up to.

'Sometimes relatives were cajoled into signing to say they agreed to it, when it wasn't made clear what they were signing up to.'

Signing what? With what implications? Do you have a link to more info about this?

kinddogstail I agree with your comments and I find it very hard when posters seem to believe that dehydration is in some way a gentle end. I have been unable to come to terms with the loss of my beloved Mother due to a hospital acquired infection. The fact that her death was preventable was bad enough but I would not wish my worst enemy the end she suffered due to the LCP. Food and water were withdrawn days before her death and I had to endure the macabre situation of staff coming on shift day after day professing their amazement that she was still alive. I begged the staff to reinstate a drip but was told that this could not be done. I sat by her bed morning and night and even half an hour before her death she was still desperately and I mean desperately sucking on the wet sponge. If it had been left to the staff she would have been on 3 hourly mouth care which would not in any way have been enough. My Mother smelled appalling as her system slowly broke down yet still she struggled on. Shockingly my friends Mother in Law was placed on the LCP but they demanded she be taken off it, she recovered and lived for another couple of years having narrowly missed being 'put to death' as I believe my Mother was. My Mother would occasionally briefly regain consciousness and shout out for her Mum in distress. I have developed severe anxiety, depression and PTSD due to the way in which in which my Mother's life ended. I am still angry, so very angry.

Two types of problems with fluids toward the end of life - firstly as PPs have mentioned often people lose the ability to swallow. Choking and aspirating is extremely distressing, and very common if these patients drink, hence the pink lollipops to moisten the mouth. Also, a few people have mentioned IV fluids - unfortunately as body processes shut down the body loses the ability to process fluids properly. Often instead of going into the circulation and out via kidneys as it would for healthy people, the fluid will leak out into the lungs, causing a drowning sensation, cause increased secretions which people choke on, and come out into the surrounding tissue or abdomen, causing discomfort and swelling.
End of life patients don't die because of dehydration, but restricting fluids is often on balance the best thing to do for quality of life.

I don't have a link Teddy.
I'm not saying LP was all bad at all. It was based on some good principals and ideas. Somehow over time these got a bit too relaxed, and the training wasn't sufficient. And then some, abuses of power occurred. Negligence. Not all cases, but some.

Many families complained.
This is all very well documented all over the internet. Investigations.

Here in Surrey, we had 2 court cases, where it was found that serious errors had been made, death certificates were adjusted accordingly, and it certainly wasn't the hospital's finest moment.

Pinkdaffodil2 'End of life patients don't die because of dehydration' what killed my Mother then after many days of no fluid?

From the information you've given presumably the hospital acquired infection, and complications of that. Of course the LCP and similar pathways have been poorly applied in some cases, I'm not commenting on your case at all, and I'm sorry for what sounds like such a traumatic experience, just saying that in general fluids won't improve quality of life, for the reasons I mentioned.

'Poorly applied' is an understatement. 'Manslaughter' is probably nearer the mark.

Pannalash what a horrible ordeal for you. I'm so sorry you went through that.

My poor Dad was only conscious in ICU for a couple of days and not being able to give him food or water was really distressing. He only died last month so it's still very fresh for me and the thing that I feel worst about. I sobbed at the sight of an aeroplane meal last week because it reminded me of the hospital trays. I don't believe he died in any discomfort and the care he received was excellent, but he looked so woebegone. Like a PP I accidentally overloaded the sponge in desperate sympathy and choked him, and felt terrible.

Sorry OP, that's not helpful is it - you've had great advice on this thread, Bill should be able to wet Mary's mouth with a sponge as often as either of them like, we did it constantly with Dad. It's probably not a sign of poor care that they're withholding fluids, but it's terrible that they haven't given him a stock of sponges.

Quimreaper so sorry about your Dad

So sorry.

This is the fault of the god squad anti euthanasia people, who won't let even the definitely dying be put out of their pain. May they all get the death they insist on for others.

Countries that have allowed assisted dying have not seen an epidemic of legalised murder. There is no reason to continue the inhumane refusal .

The people who insist and campaign against assisted suicide and euthanasia will probably have enough money to pay for private care within the home and private medicine from a doctor who they will pay to ease them out of their suffering. Behind closed doors and all that.