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Original poster

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:
WhateverIdo · 03/04/2022 13:27

I'm sorry you're going through this.

I just want to clarify a few thung that may make the concept of withdrawal of care easier. There is no one life support machine, there will be a machine similar to a dialysis machine, this will alikely be taken away before you arrive (if it was required), there is a ventilator which supports the breathing and then there are multiple pumps containing medication that keep the heart beating and blood pressure up plus sedation. It is a dramatic one flip of a switch and thats that.

All the medication will be switched off except the sedation. They may have their breathing tube removed if they are breathing for themselves and the sedation is not so high that it is suppressing their natural ability to breathe.

It's calm, the monitors are turned to silent or off, spiritual support should be offered, you may be offered handprints or hair locks and you will be free to sit with your loved one for as long as you need.

"Turning off life support" sounds dramatic but please don't worry it's multiple pieces of equipment all contributing to their care. It's gentle, they will be pain free, drugs will be prescribed preemptively in case of breath through distress, secretions cam sound loud but trouble the family more than the patient, although it sounds scary, the person is not actually in distress and their is medication that can be given. In 20 years I have never seen a distressed patient receiving planned withdrawal of care.

In terms of length, often it can be minutes, sometimes hours, the odd few may continue for a few days. Never in distress.

Roselilly36 · 03/04/2022 13:31

Yes, I too have been in this position, many years ago, it’s heartbreaking. So sorry you are going through this Flowers

Rrrob · 03/04/2022 13:37

Yes. We held dd when her life support was turned off. I asked for the machines to all be turned off first, I didn’t want to hear the alarms or them announce her time of death. Despite the tragic situation (she went from fine to turning off life support in 48 hours), it was very peaceful.
I’m sorry you are in this situation.

Strictlyfanoftenyears · 03/04/2022 13:40

Make sure that they turn off all the monitors and alarms off first.

ThreeWiseWomen · 03/04/2022 13:41

@bushtailadventures

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

This is more or less what happened to us a few weeks ago, it was very peaceful, they resuscitated my Mum, she was in severe decline following a bad fall anyway and fifteen minutes of being resuscitated would have done so much damage, we agreed to let her go and kept her on life support until the immediate family got there, once there we had about thirty minutes with her, they then asked us to move to a side room and removed the breathing apparatus, at our request they left the sats level monitor switched on and over the next few hours we watched her slowly, peacefully and gracefully exit this world.

It was actually a privilege in some ways.

Sending love and strength.

Lougle · 03/04/2022 13:43

I have been the nurse who has withdrawn life support in ICU. There is always time to talk. We would never rush the relatives. The only time I have urged a relative to make a decision was when they made it clear that the worst thing for them would be to miss the passing of their loved one and everything pointed to death being imminent and unpredictable unless support was withdrawn.

If someone has the ability to breathe without a ventilator then it is very hard to predict how long the process of dying will take. If they don't have the ability to breathe without the ventilator, then the withdrawal of the ventilator will lead to a relatively quick end.

You can ask for the monitors to be turned off. They aren't necessary and there is always a second monitor in the nurses' station anyway.

You should be able to spend time saying goodbye and you should be given details of the bereavement officer, who will guide you through the next steps.

I am so sorry you're facing this situation. It is so hard.

ThreeWiseWomen · 03/04/2022 13:52

Believe it or not, there were moments of black humour in there, at one point we all took a fit of laughing and her sats shot back up, so she knew she was surrounded by love and could still hear something but she wasn't in any discomfort.

Natty13 · 03/04/2022 13:55

This reply has been withdrawn

This message has been withdrawn at the poster's request

Natty13 · 03/04/2022 13:59

Also, you can make it as personal to your dad as you like - would he like music playing or quiet? You can ask for him to be shaved etc, you can bring in a dressing gown or blanket from home for him if you like. When it was my dad in a coma (though he survived thank god) I brought in some photos and while he was unconscious talked to him about them and the memories of when they had been taken. It was very special.

ThreeWiseWomen · 03/04/2022 14:02

Yes, the ICU staff put her fleecy dressing gown over her on the bed and it took the stark look off the room.

MistressoftheDarkSide · 03/04/2022 14:05

@Comfortablynumbum

I am so sorry you are going through this x I recently went through the same with my DP x

Lots here have given good advice so all I want to say is afterwards take very good care of yourself and accept that you will be in shock and trauma for a long time afterwards no matter how peacefully it goes..... it's a hideous experience in every way and you need time and space and to be allowed to grieve however you see fit or how it overtakes you x Sending you all the love and I am so very very sorry xxxxx

Cravey · 03/04/2022 14:05

I was with my mum in law. After a massive bleed to the brain, they took the tubes out etc. She took maybe 2 breaths and was gone. Very fast and peaceful. Sending you love and strength.

FatFucker · 03/04/2022 14:32

@JeremyJordanseyebrows I am sobbing reading your post. How lovely you sound.

ThreeWiseWomen · 03/04/2022 14:48

[quote FatFucker]@JeremyJordanseyebrows I am sobbing reading your post. How lovely you sound.[/quote]
This

MardyOldGoth · 03/04/2022 15:01

I'm so sorry OP. It's an awful experience!

I was with my dad when his was turned off. We were all allowed to sit with him while it was done. He survived nearly another 48 hours then died peacefully. Obviously losing him was horrible but it was as peaceful an experience as it could have been. I hope you get the same. Sending you love and strength.

Lougle · 03/04/2022 15:39

@Natty13 it's quite a specialist subject so @MNCar may have genuinely thought that's how it worked. You're right, of course, but I think it's a bit harsh to ask her not to spread misinformation when it is likely a genuine misunderstanding of the process.

Natty13 · 03/04/2022 16:27

[quote Lougle]**@Natty13* it's quite a specialist subject so @MNCar* may have genuinely thought that's how it worked. You're right, of course, but I think it's a bit harsh to ask her not to spread misinformation when it is likely a genuine misunderstanding of the process.[/quote]
Exactly it is a specialist subject so nobody should be making statements about things they 1. Clearly don't understand and 2. By their own admission weren't directly invited in.

You can say ota harsh all you like but the sad fact is peiple saying things that are not true at all causes real distress to people who are going through an already super difficult time. I find THAT harsh.

BastardtheCat · 03/04/2022 19:49

I'm so sorry you are going through this OP. Thanks

Animum2 · 03/04/2022 20:03

Yes my step dad after a tumour removal in his lung caused total organ failure (other underlying issues) we were told on the Friday nothing else could be done, he was given the last rights then topped up with some medicine

We were told to come back the following day, his condition was the same and no chance of recovery so my mum agreed to turn off life support, from the nurses turning it off to him passing was around 10 mins, was very peaceful and not all traumatic to watch

Was allowed to stay with him for an hour after then asked to wait outside while they removed all his tubes then we could see him again

RealBecca · 03/04/2022 20:36

This reply has been deleted

Message withdrawn at poster's request.

WingingItSince1973 · 03/04/2022 20:45

I am so sorry what you are going through. Yes I sadly had to watch my brothers machine be turned off. 16 years ago in August. He had been attacked and spent 2 weeks in itu. It actually was very peaceful in the end and quite quick. I'll be honest I absolutely broke down but I think I had been holding it together for the time he was in there and never expected it to get to that point. Plus I'd just had a c section, my baby was 3 weeks old. There was me, my dad and step brother there. My mum was too traumatised to go. I will say this though, my darling brother age 28 looked absolutely peaceful and I felt it a great honour (not sure thats the right word) to be the one to hold his hand at the end. He was my baby brother and I was his older sister and I just wanted to make sure he felt loved. The nurses were amazing. They pulled the curtains around us and told us everything they were doing and why. Then they stepped back. It didn't take long and as he lied there I was absolutely amazed how peaceful and bloody gorgeous he was and in all the years we had been brother and sister I wouldn't have wanted to be anywhere else that day ❤

Exhaustedcog · 03/04/2022 20:46

My husband had a cardiac arrest. Please join sudden cardiac arrest uk fb group for support. A lot of people take longer to wake up from sedation than a few days. My husband had a brain injury but he is ok. The prognosis for your dad is unclear before a brain scan. I am so sorry for you and the pain you are going through. I remember these days as pure nightmare. Xx

Scbchl · 03/04/2022 21:01

Yes it isn't usually an instant thing. My step mums was turned off, she was 53 and had widespread cancer they literally discovered days before. She passed within a couple of hours. My great aunt was very ill and had been in hospital in a coma with pneumonia for weeks and was very weak. She took days and days and it was quite distressing, me and my mum were taking turns and the one time in days we couldn't either of us be there for an hour she passed away. Both times were peaceful though. I played songs they liked, talked about memories, held their hands. I don't regret being there. Sending you lots of love.

TabithaHazel · 03/04/2022 21:08

Sorry you are going through this OP, an incredibly tough time. I was with my dad when his life support was switched off and it was actually very peaceful. He tried to take a few breaths and then he was gone. He didn’t seem to be in any kind of distress and my siblings and I were so grateful we could be there to hold his hand and stroke his head as he went. I’m wishing you and your dad lots of good wishes.

Eddiep57 · 06/08/2023 20:39

I was on holiday in portugal last month. Came home at 2am landing in manchester. went to work at 7am. Got a call from my niece that my sister was not well and needed an ambulance. I made my way to her house which was a mile away from where i was working.
I never expected to walk into what i did. My sister had suffered a massive stroke and had stopped breathing. I gave her CPR for 20 minutes until the ambulance arrived. They managed to get her heart going again and rushed her off to A&E.
3 hours later the Doctors came into the room and informed us that her brain injury was unsurvivible and the life support was being withdrawn. Myself and my niece stayed with her until she passed away.
The 2nd July was the worst day of my life, I am broken. She was only 68