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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Has anyone witnessed life support being turned off?

52 replies

Comfortablynumbum · 03/04/2022 06:19

My poor 62 year old dad is in an induced coma after cardiac arrest for 10 mins, he had his sedation turned off yesterday and they are monitoring how he is responding. No purposeful movements or responses except flinching to touch and eyes open but I'm told these are both reflexes only. No hand squeezing or eye tracking.

He is on full life support and it will be coming to the point where they will brain scan him soon I believe. At this point if he hasn't suffered another csrdiac arrest and died it will be time to turn off life support.

Will I be offered the option of being with him at the time? If so has anyone here ever watched their love one die after it being turned off. I'm so scared it would be traumatic and not just drifting off into a deep sleep but I also feel in such utter misery at the thought of him being alone without me there (he is divorced, I'm his only daughter, his everything)

I would be on my own watching him go if they even gave me the option without anyone in there with me to support me.

I'm completely traumatised already if I'm honest, it's the worst thing I've ever seen and I saw my poor grandad waste away to cancer but this is just poor utter horror in seeing him kept alive like this.

I just want to get on the bed and give him a cuddle and I can't.

If anyone has ever experienced anything similar please tell me if you have regrets with the decisions you made. I'm in pieces and haven't slept again for the second night now so I can't even be sure I'm thinking straight.

OP posts:
Comfortablynumbum · 03/04/2022 06:20

And soon it will be time*

OP posts:
Comfortablynumbum · 03/04/2022 06:21

Pure utter horror*

OP posts:
Hadalifeonce · 03/04/2022 06:24

Hi, I am so sorry you are going through this.
I was with my dad when his life support was turned off; in fact my mum and I asked for it to happen as we realised he wouldn't want to carry on on life support with no chance of any quality of life.
Knowing this actually made the decision easier somehow.
We sat holding his hands when they switched everything off.
The hardest part was actually leaving him there afterwards.
My thoughts are with you.

bushtailadventures · 03/04/2022 06:27

I was with my Mum when they withdrew her support. The nurse took everything away and left us alone, it was very peaceful. My mum wasn't in any distress, just one minute she was there and the next she was gone. As far as I remember they keep the sedation going so they're comfortable anyway, but it's been a few years and I may be remembering that wrong.

We spoke to the doctor at length before any decision was made, but it was an easy one for us at the time, any treatment would have left her needing round the clock are and she would have hated that.

Sending you lots of (unmumsnet) hugs

Justdiscovered · 03/04/2022 06:27

I’m so sorry. I haven’t experienced this but was in the room when my mum passed away- I had to lower her to the floor as she passed out and wait for ambulance. It’s personale to you. Try and speak to a nurse or someone at the hospital - it might help you decide what to do. Some people want to be there until the end and some know they can’t cope.
Either way your dad knows how much you love him

flashpaper · 03/04/2022 06:31

I've seen a couple of people pass away after removal of life support. Dad, grandad, and I looked after patients in ITU during covid. It's always done slowly and the passing person just gradually and peacefully passes away. They're given medication to make them more comfortable. You notice the beeps on the monitor slowing down but you wouldn't even notice anything else changing.
I'm so sorry you're having to go through this Thanks

Comfortablynumbum · 03/04/2022 06:38

Thank you all for your kind words and experiences. If he doesn't die before and has brain damage there will be no decision about support being turned off or not, his heart is so poorly too there really isn't an option (he has always said about never wanting to be in a vegetative state or alziemers etc).

I read online that some people can convulse and physically react in distress and its terrified me. If it was peaceful and slow I would manage.

OP posts:
Sidisawetlettuce · 03/04/2022 06:41

My husband was on life support and when the machines were turned off, they turned the monitors off as well. I was with him along with his mum (he was young, only 27). It was very peaceful. I'm so very sorry that you're going through this Flowers

Neongoddess · 03/04/2022 06:49

I was with my grandad. There was a few of us.

They kept him sedated, so the was no convulsing or anything. It did take an unusually long time. Well according to the doctors it was. I have nothing to compare it to.

It was very peaceful. I wish I had had that time with mum. She died very suddenly. By the time I got to her house, she was being worked on by the paramedics but they couldn't get her back. She was gone. But I expect any way would have been hard for me.

I am so sorry about your dad. You will be in my thoughts. Mum has only been gone a few months its such a difficult time and I am sorry you are going through this.

JeremyJordanseyebrows · 03/04/2022 07:02

Hi, so sorry you are going through this.

I had a long career in intensive care and have nursed so many patients in a similar position. As well as caring for your Dad, the nurses are there to support you as his daughter.

You will be given as much time as you need and may be offered some keepsakes like handprints/hair locks or photos of his hand holding yours, depending on what resources your hospital has available. He's still your Dad regardless of the tubes, machines and flashing lights.

I have regularly been able to facilitate moving a loved one over in the bed so that family can get on for a cuddle - the more experienced ICU nurses know exactly how to do this safely.

The actual process of withdrawing life sustaining treatment depends on several things, the main one being how much awareness he has and if he is able to breathe spontaneously without the ventilator. If he is able to take spontaneous breaths, it may be decided to "extubate", where the breathing tube is removed and nature allowed to take its course. This can be minutes to hours to days depending on his ability to breathe. If he has so little brain function proven by scan or special brain stem testing that he cannot take a breath, it isn't always necessary to extubate, the ventilator can simply be switched off along with any remaining inotropic drugs supporting his cardiovascular system. Whichever happens, the bedside nurse will liaise with the medics to ensure he is pain free and as comfortable as possible and often as much medical equipment as is safe to move is moved away to make the area less clinical. Pre pandemic, I often asked family members to bring in special blankets or even football shirts to personalise the space.

I have supported a massively diverse range of families through this process from large, extended families, warring families and single family members at the bedside as well as patients who had no family, in which case I have sat quietly and held the hand of the patient. The monitors can be turned off so you are not distracted by numbers and machines - you don't need to be a medical professional to know the precise moment things change as the person passes away.

No one can tell you exactly what will happen as no two people are the same. Let the nurses guide you but don't be scared to speak up if you're uncomfortable or worried. Most ICU nurses are amazing at taking the time to sit down and just be there if required.

You will be given so much information, but don't worry if you need to ask a million questions - nobody expects you to retain it all. The most important information will be given to you in written form, for example - what to do next, who to contact etc. All of those things don't need to be done immediately though. Take the time you need. There are bereavement specialist nurses who you can lean on as little or as much as you want, and access to people who know exactly what next steps are the most important.

Take care of yourself and be proud that you are there for your Dad. I remember my Dad saying to me when he was days away from dying on end of life care "you don't need to stay here, you've got a busy life" and me telling him "if the roles were reversed, is there anything in the world that would stop you from being with me?" - he knew the answer and didn't try to banish me again.

Sending love to you and your Dad x

Hadalifeonce · 03/04/2022 07:11

@JeremyJordanseyebrows your post was so beautiful. I have no idea how your voice sounds, but your words were soothing and calming.

Neongoddess · 03/04/2022 07:14

[quote Hadalifeonce]**@JeremyJordanseyebrows your post was so beautiful. I have no idea how your voice sounds, but your words were soothing and calming.[/quote]
I was just thinking the exact same thing.

That's was a lovely post @JeremyJordanseyebrows

Moveorstay2022 · 03/04/2022 07:15

Sorry you are going through this.

My dad was younger than yours when he also had a cardiac arrest. He was without oxygen for 25 minutes. They took him off the life support, he was showing no signs under the various tests that there was anything there. We were told that there was nothing that they could do. When they took his life support off they moved him out of ICU and into a separate room to "pass away" - we stayed with him day and night, we were allowed to as it was 10 years ago. After a few days, we noticed signs that there was something there, the doctors thought we were seeing things, so we kept a diary religiously of any activity or movement he was showing. After about a week, he opened his eyes, he is still alive with us to this day. He has anoxic brain damage and is not the man he was, but he's here with us and safe, which means the world.

I would insist that they allow you to stay with him as much as possible after the machine is turned off and to move him away from ICU

Z1nn1a · 03/04/2022 07:24

My dad died in intensive care after a sudden accident and my fil from cancer 3 months later so understand what you’re going through.

It wasn’t traumatic at all. In fact out of everything in the previous days it was the least traumatic thing about it all. I desperately wanted to let him know I loved him so was babbling away. It all had happened so quick. So I’d say make sure you’re not rushed in any way but they won’t rush you. They’re so considerate about everything.It was very peaceful and not really obvious when he’d gone. We knew there was no chance of life which helped.Talk to the staff and explain all your thoughts. Have you got anybody to meet you after? You may just want to be on your own but leaving is hard although there is relief knowing there is no pain. Somebody to pick you up or be there when you get home maybe.

Thinking of you and sending so much💞. It will get better, just take one day at a time.

Magicmonster · 03/04/2022 07:25

I was with my dad when his life support was turned off. He was a very similar age to your dad (63). They kept him sedated and took away the monitors and the nurses left the room, returning only occasionally to update us. I imagine if I were alone a nurse would have stayed if i wanted them to. It was very peaceful in that he didn’t move or show any signs of having passed away. It actually took a long time though. Perhaps 4 hours or so. Whilst I would give anything for him still to be here I actually wished at the time that it would go faster, and I felt like such a bad person. I didn’t like to think of his body fighting so hard to stay alive when it had no chance. I did hug him and hopefully you can too. So sorry you are going through this.

Bunnybunny1 · 03/04/2022 07:27

OP, I’m so sorry you’re in this situation, your dad is so young, it must feel surreal.
I couldn’t face being there with my mum at the end, I didn’t want a final traumatic event to be my last memory of her. I feel guilty about that from time to time but I also know that she knew I wasn’t good at things like this and would have understood.
My granny and my auntie went to see her soon after she died and they said it clearly wasn’t her there anymore. It’s a personal choice and I think it’s important not to judge yourself either way. Flowers

Longandwinding · 03/04/2022 07:28

I'm so sorry you are going through this. My dad was on life support a year ago, when he became unresponsive they decided it was time. My mum and I held his hands as his blood pressure medication was withdrawn.... the monitors were still on and we knew his body was stopping as his heart rate and blood pressure both slowed to stopping within minutes. We were on our own with the curtains round him. It was in the pandemic in ITU so they were pushed for staff and beds. There was absolutely no sign of distress to my dad, and he would also have hated to come out of it so different and incapacitated... there was no way back for him either. Though it still seems surreal when I look back, I have no regrets at all about being there. Much love to you.

purplesequins · 03/04/2022 07:37

I was with my fil when the life support was withdrawn upon his request.
he was taken to the 'rose room'.
we had to leave the room whilst they took out most of the lines and the breathing equipment.
after that it took fil a few days to die. it was peaceful but in the end he died alone whilst my mil went out for 5 min.

ThatsGoingToHurt · 03/04/2022 07:38

I had to make the decision to switch off life support for my dad after his heart attack. I don’t think I was there for the precise moment the switched everything off as they had to take the breathing tube out and the ventilator away. Tbh he looked better once everything was taken off him. The nurses did his hair and would moisiten his lips. He’s was still given fluids so he wouldn’t die of thirst. It was very dignified. I stayed with him for the rest of of the day and went home and 4 am to sleep and then back the next day. He final died 3 days later. It was very peaceful. My dad situation was odd as basically the lack of oxygen had killed his brain apart from the part that controlled his breathing. Hence him slowly slipping away.

MNCar · 03/04/2022 07:39

This reply has been withdrawn

This message has been withdrawn at the poster's request

angieloumc · 03/04/2022 07:54

I'm so very sorry about your dad OP.
My dad was a similar age to yours (61). He had chronic pneumonia and hadn't told anyone how ill he was feeling. He was in ITU for three weeks before his life support was removed. Myself and my two siblings were with him, as another pp we saw his heart rate and blood pressure going down. He did open his eyes very briefly, and that was wonderful to be able to look into them and tell him I loved him. We all just surrounded him, holding his hands and touching his shoulder. It obviously was very sad but peaceful. The curtains were round him and the noises of the unit seemed to fade into the background. The moment he left (to me) was apparent without looking at the monitors. I was glad we were with him as I know many others sadly don't have that. It was hard leaving him after though but the staff had been amazing all through so we knew he was in the best place.
Sending much love and strength to you OP.

GeneLovesJezebel · 03/04/2022 07:56

It was vey peaceful. Sit with him and hold his hand, talk to him if you want.

Vallmo47 · 03/04/2022 08:04

I’m very sorry OP. Having been through similar with my mum passing at a similar age, this was a particularly difficult thread for me to read. You’ve been given amazing advice above of what to expect, please ask a nurse to stay in the room with you if that makes you more comfortable. But do stay with your dad if you can bear it. Sending love ❤️

flower277 · 03/04/2022 08:31

Sending you massive hugs ❤️

Onlywomengivebirth · 03/04/2022 09:10

Yes. It took almost a full 24 hours. Many people don’t die quickly, I’m afraid. At least it’s painless.