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Original poster

*Distressful content* EOL life question to any doctors/nurses

107 replies

Footballfrenzy2021 · 29/12/2021 18:41

My DF has a terminal disease & was found in his care home severely dehydrated during the first week of December.
He was immediately admitted to hospital but despite efforts they could not rehydrate him & it was agreed by HCP & us that all treatment was withdrawn.
He hasn’t had any food or fluids since 8th December & is only receiving pain medication.
He tested positive for COVID on Christmas Day.
It so bloody awful seeing him like this (we can visit due to EOL).
His palliative care team review him every 7 days.
I’m sorry to be blunt but we are absolutely horrified that this is how he goes. His mind is still there & he is aware of everything around him.
How long can a person survive like this ? It’s agonising to watch 😢
I’m sorry if this is upsetting but we just don’t want him to suffer anymore

OP posts:
Incognito22333 · 29/12/2021 20:22

OP just to reassure you my father died of cancer in a country with expensive and top notch medical care and it was similar for him at the end. Sedation and just mouth wetting, they said it was the norm. With a drip and antibiotics he could have gone on for weeks in that state and the humane way is to let the body shut down slowly with virtually nil food and drink.
But I agree why do humans have to go through this when dogs don’t have to right at the end. What is the point really!

De88 · 29/12/2021 20:31

@Footballfrenzy2021

My DF has a terminal disease & was found in his care home severely dehydrated during the first week of December. He was immediately admitted to hospital but despite efforts they could not rehydrate him & it was agreed by HCP & us that all treatment was withdrawn. He hasn’t had any food or fluids since 8th December & is only receiving pain medication. He tested positive for COVID on Christmas Day. It so bloody awful seeing him like this (we can visit due to EOL). His palliative care team review him every 7 days. I’m sorry to be blunt but we are absolutely horrified that this is how he goes. His mind is still there & he is aware of everything around him. How long can a person survive like this ? It’s agonising to watch 😢 I’m sorry if this is upsetting but we just don’t want him to suffer anymore
So sorry you're going through this. I've worked in palliative care for over 8 years.

As to your question I'm surprised he has lasted this long if he has had no food or fluids whatsoever from that date, after already being found to be severely dehydrated.

Is hospital where he wants to be? Could he be cared for somewhere else? Some places still have options even for Covid+ people.

You might all still get some comfort from music, reading to him, candles if allowed.

I'd say if he seems to pick up, stay close, some people seem to get a little burst of energy from somewhere before they dip again. But every time you say goodbye, say goodbye, some people feel like they can't leave just in case the person dies while they're away, and of course they often do.

Flowers
Martha8 · 29/12/2021 20:39

I've been through this with my own lovely father. It was absolutely horrific. I will never get over it . I can't believe this is how things are done in a supposed civilised society. They are terminal patients who are going to die anyway and putting people through this is just terrible.

NoWigNoWit · 29/12/2021 20:40

I don’t have anything helpful to say apart from I’m so sorry you’re going through this x

BitterTits · 29/12/2021 20:45

I have been through this too, with my DM. It will not happen to me.

Kevinthesnipe · 29/12/2021 20:45

We find people who have been slowly reducing fluid and diet through their last years (such as end stage dementia) can last a very long time in this stage of their life.
Those who have been well (such as cancer patients) seem to pass much quicker once fluid and diet is withdrawn.

For those suggesting you ask for them to just give morphine to see him on his way Shock that is known as murder!

The nurses and drs will be monitoring and controlling his symptoms adjusting the syringe driver as necessary. He probably is comfortable and settled, most patients are towards the end, though there are those who aren’t.

Hope his passing is peaceful

dittheringdoldrums · 29/12/2021 21:04

@Martha8

I've been through this with my own lovely father. It was absolutely horrific. I will never get over it . I can't believe this is how things are done in a supposed civilised society. They are terminal patients who are going to die anyway and putting people through this is just terrible.
It is awful. This is why I absolutely support the right to die movement. OP I hope your father passes away peacefully very soon Thanks
Sideswiped · 29/12/2021 21:05

OP, I'm guessing that you are occupied elsewhere. In a way, I hope so because that means you may be there with your DDad as he is easing away from his life.
The driver will help to keep him settled and pain-free (some people like to proclaim that it is not kind and akin to euthanasia, that is not my experience).
I'm so sorry to say but the end of life is brutal, but that is only for those left behind (I really hope you don't think my post is unkind, I'm trying to help you to understand how it might be).
As your DF has a syringe driver, you can ask to make sure that he has everything that will make him comfortable and help to make him feel relaxed. I did that for my DF.
You may hear some noisy breathing, called stridor. It's not something that causes distress to the patient, but isn't pleasant for you to hear.
I hope your (clearly much-loved) dad's passing is as good for him as it can be, but I know it will cause you tremendous pain at the same time.
I've been in your shoes, and it's a horrible place to be. Thanks

Bagelsandbrie · 29/12/2021 21:08

@Kevinthesnipe

We find people who have been slowly reducing fluid and diet through their last years (such as end stage dementia) can last a very long time in this stage of their life. Those who have been well (such as cancer patients) seem to pass much quicker once fluid and diet is withdrawn.

For those suggesting you ask for them to just give morphine to see him on his way Shock that is known as murder!

The nurses and drs will be monitoring and controlling his symptoms adjusting the syringe driver as necessary. He probably is comfortable and settled, most patients are towards the end, though there are those who aren’t.

Hope his passing is peaceful

Ermmm. No it’s not murder. It can just speed up the process, a process that is already happening and is very distressing to all. That’s why there is such a battle in getting the balance right between giving enough pain medication to control pain and keep the patient “with it” in the earlier days of a terminal diagnosis and why gradually more and more is given towards the end. Whether people like to acknowledge it or not it’s what happens in hospices all over the country. And it’s far more humane than seeing someone slowly dying from withholding fluids etc.
DaisyNGO · 29/12/2021 21:21

[quote Footballfrenzy2021]@Diditopknot

Yes he has a driver & it’s for his pain meds & also anxiety & to prevent fluid on his chest.
His disease means he lost all ability to swallow about 5-6 weeks ago.
They offered him fluid via IV about a week ago but he declined.
He weighs about 5 1/2 stone now - he’s must be a strong bugger ! Just so incredibly painful to watch[/quote]
So he declined fluids and seems comfortable...I was concerned that perhaps he hadn't been offered.

Sadly, from grandparents I have seen this take a shockingly long time. I wonder if it's harder for the obersver than the patient.

Does he have mouth care, to keep that area comfortable?

I'm so sorry.

JohnHunter · 29/12/2021 21:36

@Bagelsandbrie - Rightly or wrongly, turning up the syringe driver with the aim of hastening death (even if death is expected and imminent) is treated by UK law as murder. The law allows it to be turned up as treatment for other symptoms (eg pain) even if death is hastened as a side effect.

Bagelsandbrie · 29/12/2021 21:37

[quote JohnHunter]@Bagelsandbrie - Rightly or wrongly, turning up the syringe driver with the aim of hastening death (even if death is expected and imminent) is treated by UK law as murder. The law allows it to be turned up as treatment for other symptoms (eg pain) even if death is hastened as a side effect.[/quote]
Yes. If you read my posts that’s exactly what I’ve said.

puddlesofmothers · 29/12/2021 21:43

I'm so sorry, it's an awful path you're on and when I went through the same with my father I was desperate to know more and spent hours searching for answers. This thread although distressing to read would have been a blessing for me at the time.

It took my dad 10'days to pass away after he was admitted with sepsis from his care home, which he managed to shake off. He had end stage vascular dementia and had just moved homes due to funding. It's very difficult to get our heads around no fluids etc. But what I know now but didn't at the time is that the body at end of life has little need for fluids other than comfort and that drinking can cause a lot of discomfort. It's surprised me to write that because it has haunted me for a very long time time thinking we'd killed him by not using that pink lolly pop enough etc. I'm fours years on now and whilst it was beyond traumatic I do accept it was the right thing. He was looked after very well in hospital in fact they were incredible and they were incredible to me too, they let me stay with him apart from when they were washing him.

wheresmymojo · 29/12/2021 22:07

Hi OP...I read a book recently called 'With the end in mind' by Kathryn Mannix which talks about the stages of dying and what to expect.

I found it very comforting.

wheresmymojo · 29/12/2021 22:10

As PP with experience have said - this is part of the natural process of dying and doesn't mean that he's suffering.

We're just so removed from death in modern society that we don't know what the normal process of dying looks like and often interpret things to mean suffering when they don't feel like that to the person.

TheCreamCaker · 29/12/2021 22:13

This, certainly, is the kindest thing......

Bagelsandbrie Wed 29-Dec-21 19:34:16
I feel bad for suggesting this but I would suggest he’s in pain and ask them to increase the amount of morphine he’s having. There comes a point where the morphine itself will slow the breathing down to a point of death if given enough. I have been through this exact scenario twice - with my Mum and Gran (both died of bowel cancer). With my Mum I was so distressed seeing her at the end I sat and howled outside her room at the hospice and begged them to give her more morphine. They upped the dose and within 2 hours she had gone.

I worked as a carer for many years, sometimes end of life care.

Bagelsandbrie · 29/12/2021 22:15

@TheCreamCaker

This, certainly, is the kindest thing......

Bagelsandbrie Wed 29-Dec-21 19:34:16
I feel bad for suggesting this but I would suggest he’s in pain and ask them to increase the amount of morphine he’s having. There comes a point where the morphine itself will slow the breathing down to a point of death if given enough. I have been through this exact scenario twice - with my Mum and Gran (both died of bowel cancer). With my Mum I was so distressed seeing her at the end I sat and howled outside her room at the hospice and begged them to give her more morphine. They upped the dose and within 2 hours she had gone.

I worked as a carer for many years, sometimes end of life care.

Thank you. I was beginning to question myself. I know it was the right thing in the situations I’ve personally experienced.
guiltynetter · 29/12/2021 22:16

I'm very glad - although upset - I read this thread as my lovely grandma has been end of life for 2.5 weeks now. She has a couple of spoonfuls of thickened orange juice a day and that's about it. She keeps trying to talk but we can't quite make out what she's saying (very rarely) I had no idea it could take this long 😭 thanks for the posters who have given such valuable information.

Imdreamingofapeacefulxmas · 29/12/2021 22:33

Op this is so awful 😪 I was with a relative for weeks at the end I never left their side.
I know it's not helpful now but I wish evry person who doesn't believe in assisted dying needs to see the reality and perhaps go through a pain Simulation as well then tell us terminally ill people shouldn't be helped Angry

Imdreamingofapeacefulxmas · 29/12/2021 22:34

The kindest thing is for society to wake up and stop putting each other through this horrific ordeal.

DaisyNGO · 29/12/2021 22:42

@Imdreamingofapeacefulxmas

Op this is so awful 😪 I was with a relative for weeks at the end I never left their side. I know it's not helpful now but I wish evry person who doesn't believe in assisted dying needs to see the reality and perhaps go through a pain Simulation as well then tell us terminally ill people shouldn't be helped Angry
I hear you.

I wasn't sure about saying this but ...in case it helps...I actually regret not leaving their side. I put myself through a lot of pain because I thought I was doing the "right" thing but now I think it didn't benefit either of us.

My best friend did the same with her auntie who died of cancer. We both say we will not do that again. In some cases, they need to be alone before they go, I think. I talked to the vicar about this, he's seen a lot of it, and he felt that too.

MissMaple82 · 29/12/2021 22:55

😔😔 no words 💔

CJat10 · 29/12/2021 23:01

I will never ever forget how awful my mum and sisters deaths were. Weeks, months and my silent vigil whilst I was constantly told they mustn't do anything which would hasten the inevitable. Living torture.

So sorry you are experiencing this. I too was told the information about food and drink putting a burden on their body at the end.

Dignity in dying is badly badly needed. I feel fury with the so called palliative team.

Starcup · 29/12/2021 23:08

I just happened to come across this post and I'm aghast at what appears to happen during EOL.

I don’t really know what I thought happened but the patients are basically deprived of food and water? I’d that right? Im taken aback reading this and my thoughts ate certainly with you OP.

Starcup · 29/12/2021 23:08

are x