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

[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to hospital but despite efforts they could not rehydrate him & it was agreed by HCP & us that all treatment was withdrawn.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

Oh gosh that sounds very upsetting for both him and loved ones

Are you sure he hasn't received fluids or nutrition since Dec 8th though? Or do you you just mean physically eating and drinking but he is getting a fluid drip?

When this happened to my gran they increased the morphine to ease her passing. Not all places do it anymore but you could tactfully ask his care team about it. Hugs for you, it's heart rending ❤

No real advice but you have my utmost sympathy. One of my close friends passed away from cancer a couple of years ago and the circumstances were very similar, they withdrew treatment and food/fluids and kept her doped up on pain meds until she passed. It was horrific, she held on for so long and just knowing there was nothing we could do, it was utterly heartbreaking and agonising to watch. I just remember thinking you wouldn’t even leave an animal like this. Just didn’t seem right. Sending lots of love and hugs to you

So sorry for you all going through this.
Is he having pain medication via a syringe driver?

I would expect that he is receiving regular mouthcare, this will also include “taste for pleasure “ fluids of his choosing so this could be tea, coffee, whiskey if he wants it! Anything to keep him mouth moist.

At this stage there tends to be no hunger or thirst,

Other medications will be added to his syringe driver to combat nausea and agitation or distress not just pain medication.
Be assured that this is something that the staff will be very good at this care, they do it such a lot.
Although he is formally assessed every 7 days, he will be reviewed daily by staff caring for him to identify any changes.

Again, so sorry for you going through this, it’s so difficult.

Op I am so sorry you are going through this. I used to work on a ward and remember there were a couple of palliative patients who took a very long time to go (3/4 weeks), it was awful for them and their families. One thing however was that if they were thirsty and able to ask for it and could swallow we did let them drink? I remember one having a yoghurt too, it didn't change the end result obviously but denying them a drink when they asked would have been inhumane. They were doped up using a syringe driver and weren't in pain I don't think. I hope your DF passes soon x

Thanks for your replies.
Beyond the initial 2 days of trying to rehydrate him he has had nothing.
I’m an dog owner & I’ve said so many times I won’t treat an animal like this.
I absolutely know it’s not the HCP fault but it just seems so very, very wrong.
I’ve just phoned to see how he is & it’s the same answer every day ‘comfortable & settled’ 😢

Op I wholeheartedly agree - the phrase I always trot out is "you wouldn't do it to your dog". The euthanasia argument sadly isn't going to help your DF right now, I just hope he goes soon and doesn't suffer

@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

My mil died this year after nearly 3 weeks on eol without food or water. It was awful. I'm sorry this is happening to your dad and your family.

I’m so sorry. I hope he passes soon

It’s so inhumane - we don’t let animals suffer like this.

I’m so sorry it’s awful. At the heart of this though is the question as to whether you think he is actually comfortable and settled? We offer whatever fluids someone wants - lots don’t actually want any fluid (they have no thirst or hunger pangs) but some like to suck on a ice lolly or similar.

Is there a plan for discharge? He would qualify for a rapid discharge pathway to a place with support. If he liked and wanted to he could go back to the nursing home. Having said that, I’ve known quite a few patients who prefer a hospital because they feel more secure and safe there.

Again as a previous poster noted, his doctors may only come once a week, his nurses are checking on him multiple times and will advocate for him if they feel his needs aren’t being met.

Oh so sorry to read this, Football
He must have a strong heart, to have kept going this long.
It's actually good that he is settled and comfortable. Just very hard for you and the rest of the family.
I hope he will go in peace soon.
Is there always a family member with him? Sometimes people can't let go in these cases. Leave him alone for a few hours, and he may just drift away.

This used to be my field and I have personal experience too. The likely reason they aren’t providing alternative fluids or nutrition is because at the end of life, the body struggles to process it. Also research suggests that end of life patients lose their thirst and hunger. In my Mum’s case, she was EOL, they continued to push fluids but her body was shutting down so it just sat in her tissues leaving her bloated (it wasn’t nice). Your Dad should be able to have some sips of fluids if he wants them. The staff won’t push them because if his swallow is compromised, it’s likely to go on his chest causing him distressing symptoms. It’s been a few years since I worked in this field but I would always ensure I did mouthcare when I tended to my patients as part of my comfort rounds. Our ethos was to “neither hasten nor prolong death”…
I hope that helps. I’m sorry you’re going through this

Unfortunately, this is how things often are with end of life patients. People generally don't want to eat or drink as their bodies can't process things any longer. Food and fluids can cause discomfort and overload the system and cause nausea, abdominal discomfort, difficulties for the heart and kidneys etc. Please don't be too concerned about the not eating or drinking. As long as they're given something if they ask for it and receive regular mouthcare to avoid dry mouth and lips.

The syringe driver should provide pain relief and relief from agitation and fear. People can enter a sort of twilight sleep and remain comfortable until they die. The nurses should look out for signs of distress and adjust the drug dosages accordingly. People are no longer helped to die by increasing morphine dosages, contrary to popular belief.

The dying process can be long and unpleasant as it's not like in the movies. Relatives often get a shock at how long the process can be. Make sure you get enough rest and meals to keep your strength up. Dying people can also wait until their relatives have gone somewhere before taking their last breaths, so don't feel bad if you're not actually present when they die, this is normal and not uncommon.

I hope your DF has a peaceful passing.

Hugs it's so crap

Part of the dying process means that hunger and thirst sensations are no longer processed. He has analgesia and morphine boosts endorphins too.

It might help to understand what you mean by 'suffering' OP. What unpleasant sensations are you concerned about? Pain, Thirst etc should all be under control.

It helped me to think objectively about what specifically it was I was worried about, if it's mental distress then could he receive more morphine to settle him? If it's respiratory effort then could he be sedated so he's unaware of this?

Try and focus on your specific concerns and then ask the HCP to address them

Once again thank you for your replies.
Unfortunately due to his positive Covid test he cannot go anywhere until the 7/01/22.
He does seem ‘comfortable ‘ just very aware which has been one of the most difficult aspects for us.
I’m sorry if I’ve upset anyone but we’ve never been in this situation before & we just weren’t prepared for any of this.
His condition means there never was a chance of recovery so we knew he’d die just not like this.

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.

@Footballfrenzy2021

Once again thank you for your replies. Unfortunately due to his positive Covid test he cannot go anywhere until the 7/01/22. He does seem ‘comfortable ‘ just very aware which has been one of the most difficult aspects for us. I’m sorry if I’ve upset anyone but we’ve never been in this situation before & we just weren’t prepared for any of this. His condition means there never was a chance of recovery so we knew he’d die just not like this.

It sucks @Footballfrenzy2021 Don't make apologies. Get through this in whatever way you need to. There's no rule book for this. It's exhausting and emotionally stressful. Take care

That must be very hard for you both, OP. FWIW, it might depend on the nature of the terminal disease and his starting point but if he is 5 1/2 stone then possibly not too long but but it can take more time. 7 day reviews for palliative sounds long and it might be worth having a chat with them to enable him to express his wishes and ensure he has sufficient pain relief to make him comfortable if he is finding his current condition uncomfortable, particularly if he is still coherent.

I hope he passes peacefully soon.

I’m so sorry you’re going through this.

I went through similar with a family member and I was shocked how this process is done. I thought she’d be gone within a couple of days without fluids but it was weeks.
What’s worse is she was taken off it a couple of times as she started sitting up and eating and drinking then she’d go back on it and we’d go through all of the trauma again.

I think this process needs to be looked into. I think if someone is on EOL then there needs to be something to speed up the process.

it is hard but as othrs have said the body is slowly shutting down. With Mum we were advised to clean her mouth and also used pineapple juice to wet her lips and mouth with a cotton bud - to be honest they should perhaps be showing you this as it should be being done and I doubt they have time.

its upsetting but normal and it too around 2 weeks or so for Mum to go from stopping all medication and nutrition. The body just can't process it.

I’m so sorry you’re going through this. The same thing happened to my mum last year - she was suffering from dementia but was physically fine, and a very minor fall resulted in hospitalisation, which then escalated very suddenly and unexpectedly into terminal care.

As others have said, staff working in these settings are usually very good at assessing and managing pain and discomfort. They’ve seen the arc many times before and understand the rhythms of EOL care.

We were extremely distressed when my mum stopped eating and drinking, but were reassured by staff that this is a natural part of the process. It feels awful and neglectful because we can’t imagine going without water, but a change in the brain chemistry of terminally ill people means they no longer require sustenance - and also that they avoid the risk of inhaling fluid and choking or suffocating, which would be a far more terrible and frightening way to go.

It’s very, very hard on you to witness your dad going through this, and the shock of unexpectedly being thrown into this situation will magnify your anxieties, but provided he’s not suffering and he knows you’re there, it can be a positive time for all of you. You can talk to him, hold his hand, play music he enjoys, just sit quietly. I now treasure the time we were able to spend like this with mum. It gave us a bit of space to adjust and accept and be grateful. She knew we were there and her passing in the end was very gentle and peaceful. She did not suffer.

I hope you and your family are able to find a way through that feels right for you. Sending you a big hug x

@Footballfrenzy2021

Once again thank you for your replies. Unfortunately due to his positive Covid test he cannot go anywhere until the 7/01/22. He does seem ‘comfortable ‘ just very aware which has been one of the most difficult aspects for us. I’m sorry if I’ve upset anyone but we’ve never been in this situation before & we just weren’t prepared for any of this. His condition means there never was a chance of recovery so we knew he’d die just not like this.

If he's comfortable then that's a huge plus. When I had a similar experience my relative was in discomfort and was, in the end, on a phentonyl driver. Watching her have to come to terms with the fact she was dying was the toughest part. The withdrawal of fluids was explained to us as the kindest option due to the way the body is unable to process nutrition towards the end. We were very careful with mouth care and made sure she was not in discomfort there.