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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

To think that if drs tell you, someone basically has no chance and to withdraw care, not to trust them

87 replies

NewDawnNewDayNewLifeForMe · 01/04/2014 21:35

After watching Louis Theroux and one born every min, it makes you think can we really put our trust in what drs say

On Louis there was some guy, they family where told he was basically Brian dead and to with draw care, suddenly after being in a coma for x amount if days I think about 35 or something he was talking walking knowing who was who etc, yet the drs had said he was brain dead
Then they started blaming it on each other
Oh it was the neurologists etc

Then on one born every min, a baby with serious lung problems
They parents where told they baby didn't have much hope before he was born, then when he was born after. He was in intensive care sometime and was asked to consider withdrawing care and there he was alive and well

Makes me think if anyone I know is on life support never allow the drs to turn the machines off as they really don't know for 100% fact

OP posts:
parallax80 · 01/04/2014 22:12

There isn't a psychic exam in medical school (yet?)

Statistics are based on populations; if something has a chance of 1 in a million, you don't know before the event whether you'll be the 999,999 or the 1. (Whether the 1 is a good thing or a bad thing).

Doctors just try to make the best decisions possible based on the likelihood of outcomes in different situations.

ifyourehoppyandyouknowit · 01/04/2014 22:13

That's fine, but not everyone feels that way and I can't even imagine being in a position to have to make that choice for a child. Can you want understand that other people people have different experiences to your own?

It isnt always about just keeping someone alive either, it can be about long term suffering, pain and quality of life.

Sidge · 01/04/2014 22:14

I don't recall that family being told to withdraw care - they were being prepared for the fact he may remain in a PVS.

I don't think he was on life support - he had a trache and was on ventilatory support but I don't recall them being told he was brain dead, just hugely unlikely to recover in a meaningful way. It's great that they got their miracle but I would guess that's 1 in a million.

I think people forget medicine is not infallible - humans aren't machines and don't always behave or respond in a completely predictable way.

AnotherFurry · 01/04/2014 22:15

Fay I have been in a similar situation and keeping going with medical intervention at the end of their life can just cause unnecessary suffering.

I wish end of life care was discussed more openly as people think medical staff withdrawing fluids etc is cruel when it is the opposite as the body often can't cope with fluids at the end and just causes suffering and pain when all anyone wants is a pain free dignified end.

So sorry for your loss Thanks

cardamomginger · 01/04/2014 22:24

Furry - true. If the body can't deal with the fluids, they just collect and have to be drained off, which means another line going into the patient.

Fayrazzled · 01/04/2014 22:25

Thank you AnotherFurry and HopAlongOn for your kind words.

End of life care should be more openly discussed. It's not something shameful to be hidden away. Medics and families are making the most difficult decisions in the best interests of the patient every day. There is so much ignorance about it.

Original poster
NewDawnNewDayNewLifeForMe · 01/04/2014 22:25

I'm not trying to say others should think this way

I respect everyone's choices
And every situation is different

I'm just starting a conversation about what I feel and I am listening to others
As I agree it should be talked about more

OP posts:
madasa · 01/04/2014 22:30

I took part in the decision to switch off my mother's life support. I held her hand as it was switched off. She died four hours later with her family at her side....she was 63.
I am haunted by 'what ifs'

Ohbyethen · 01/04/2014 22:30

Furlined - that doesn't make you the voice of those of us with painful conditions, disability or injury nor an expert of same. You are an expert of you.
I am very glad that despite your pain and suffering you want to be here but not everyone will share that view.
That's why it's important to communicate your wishes to the appropriate people; some of us believe strongly that life, or being alive, is a sacrosanct state that they wish to preserve at all costs. Some of us believe those costs are a price too high to pay. Lots of us are anywhere in between.

I disagree with your generally mistrustful stance. Pretty much for the same reason I won't give up my job because I bought a lottery ticket and I could be a millionaire by Friday.

furlinedsheepskinjacket · 01/04/2014 22:34

I am expressing my opinion.why is that an issue? your opinions aren't causing a problem for me.

Original poster
NewDawnNewDayNewLifeForMe · 01/04/2014 22:36

We'll considering death is part of life it should've discussed more

OP posts:
EverythingsDozy · 01/04/2014 22:38

There is a hospice near me for children with terminal illnesses, they take in these children for a day or two to give them a bit of fun and their parents a bit of a break. They've been running for years and of all the hundreds of children that have come through their doors, only around 4 have survived.
I think doctors generally know what they're on about. It's concerning that some people think they know better than the statistics and the experts because it's their family and "they just know".

specialmagiclady · 01/04/2014 22:40

I am really pleased that guy woke up and made such a good recovery.

However, in the same programme there was that guy who had been kept alive by his family for 3 years with no response whatsoever.

I suspect that this is the far more common outcome.

candycoatedwaterdrops · 01/04/2014 22:40

Gosh, OP you're all heart.

HopeClearwater · 01/04/2014 22:47

What PoppySeed said:

Perhaps it's not a good idea to base your opinions on what you have understood from two television programmes rather than actual medical experts.

Think about this, OP, and then think about it some more. Do you understand the difference between evidence and anecdote?

Logg1e · 01/04/2014 22:52

I am gobsmacked that this is the message you took from the Theroux programme.

Ohbyethen · 01/04/2014 22:54

Furlined - I'm assuming your post was to me? I have no issue at all with you posting your opinion and didn't try to stop you doing so.
For you qualiative factors don't mean you don't want to be here. For others they might.
I have no issues at all with your personal opinions or feelings (indeed how can I contradict how you feel?), I took issue with your personal opinion reading as if it was vox populi.
Merely providing my opinion to be weighed in the balance with all the others.

splasheeny · 01/04/2014 22:54

End of life care is not withdrawing care.

This is such a basic misconception, which has been propagated by the daily mail.

End of life care involves caring for the patient and managing their symptoms to ensure they are comfortable.

GColdtimer · 01/04/2014 22:55

I was there when the doctors told my friend there was nothing more they could do for her husband. The pain on the consultants face as he said those words will stay with me forever. They would have done anything to save him but in the end they supported my friend through the worst time and decision of her life. There was no hope, his organs were failing so they gave him a dignified end. I sat with him for 4 hours through the night whilst my friend slept (passed out) and the rest of the family arrived to say their goodbyes. I would have trusted the staff there with my life. Their job is to support life where ever possible.

You are basing not trusting the whole medical profession on 2 documentaries? YABU.

RustyParker · 01/04/2014 22:57

Op, I thnk your thread title is extremely upsetting even if posters don't come onto the thread. Could you ask MNHQ to amend maybe?

My sister was in ICU after a sudden collapse due to illness and never recovered. For days I had to listen to others tell me "not to let them turn the machines off", "don't let her go" and to "fight for her". They meant well but I was the one sitting with the Doctors several times a day discussing scan results, blood results and unsuccessful treatments. Doctors want to save people, they don't want them to die. I know it was the right decision to let my sister go. It was the hardest thing I've ever had to wrestle emotionally with and of course there is a bit of me that wonders whether my sister could have been that one in a million to make it in spite of all the odds. Then to read your hysterial order to refuse all medical opinion makes me feel guilty, like I gave up on her, which I know wasn't your intention but it has caused a lot of hurt and distress to me and other posters.

Bluecarrot · 01/04/2014 23:03

My cousin was told her daughter wouldn't be born alive, then when she was, she was told she wouldn't live more than a few days. The baby is now 19 albeit with severe disabilities.

My uncle is in remission with cancer. He was told several years ago to get his affairs in order immediately as it was extremely advanced and aggressive.

While its scary to think it, everyone can make mistakes. :(

OurMiracle1106 · 01/04/2014 23:06

Personally I have told those who are close and would make such decisions to apply to me what they would apply to an animal. If I was a dog/cat/horse would you end my suffering and put me to sleep. That's just me though. Leave me to go with dignity and peace.

furlinedsheepskinjacket · 01/04/2014 23:11

how did my posts read as if I was trying to speak for everyone?

CheekyBambino · 01/04/2014 23:18

My baby is terminally ill with a disease that has a 100% mortality rate, ie everyone who has it dies. There is no cure and no treatment. It is a long, slow and inevitable decline towards death.

Dealing with this has been the hardest thing I have ever done, and I really hope that I never have to deal with something this bad again. All the medical professionals I have been in contact with have always been very honest with me and for this I am profoundly grateful. I have never had reason to doubt their judgement, helped by the fact that I knew very clearly that there was something wrong with my baby.

I certainly do not believe that where there is life there is hope, since that would be going against all the clear medical evidence that I have read and been told about by the medical staff. I strongly believe in quality of life rather than quantity, and that my job is to do what is best for my baby, even if that means I must let him go. Having read online the stories of others in this situation not all parents are able to do this and subject their babies to painful treatments that ultimately simply prolong death rather than prolong life. I wonder though if this is about their need rather than that of their child.

I wish end of life care were talked about more since it is inevitable that the vast majority of us will face this at some point. And as splasheeny says above it is all about making the person as comfortable as possible and managing their symptoms. I do have comfort from doing this, since I think that caring for someone to the end, and being able to understand when it is their end and so let them go, is the ultimate act of love.

Madratlady · 01/04/2014 23:18

I am a nurse, as I work with the elderly I often look after people who are ill and unlikely to get better. I strongly feel that the most important thing in that situation is to keep them comfortable and simply treat unpleasant symptoms like pain or sickness. It's human nature to fear death and feel we have to 'fight for' people but sometimes you need a miracle. If that happens, great, but if not there is a point whee painful and undignified treatments should stop and people should be allowed to be peaceful.