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

[NewDawnNewDayNewLifeForMe]

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

Cheekybambino - you're absolutely right there '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'. I hope you have a peaceful time with your baby until you have to let them go.

Thank you Northern. This thread has made me cry, but it helps to hear from others who understand when no amount of 'fighting' will ever change things. And those who don't, well, one day no doubt they will face a similar situation for someone they love and maybe then they will understand.

Oh god cheeky I would never want to make anyone cry

I would like to make it clear I am not trying to tell anyone what to do, or anything like that

Just saying I personally don't trust drs 100% and these programmes confound my fears

I think it's a shame we can all just be more open to talk about death, I don't think us Brits are very good at death or grieving it's all a bit too emotial so lots if people here prefer to sweep it all under the carpet, keep a stiff upper lip
And it's not helping anyone
And I guess the fact is these types of discussions just hurt people

I certainly certainly would never want to upset anyone

And fwiw I don't agree with the line where there's life there's hope
It's not that straightforward unfortunately

I have had relatives in this situation.

Cheeky, do you want me to ask mnhq to delete this or let the conversation carry on?

Thank you for suggesting deleting it, but I think that the conversation should definitely continue. I agree that talking more about death can only be a good thing.

I'm encouraging family members to make living wills so that when the end comes it will be made easier by knowing what the person would have wanted. I do appreciate that not everyone has the same views about what they would want re end of life, so talking about it and telling relatives can only be a good thing.

I also a agree that it is the ultimate act of love to sacrifice what you want. To not let the person you love so dearly suffer. Like your taking the pain so they dont have to
is unselfish brave and well lost for better words really

I am truely deeply sorry if my clumsy way with wirds has upset you
I wish so much love and kindness to you

OP, perhaps you think the doctors who made this decision are far more trustworthy? Or maybe they are just exploiting a terrified, grieving family for financial gain?

The decision to continue ventilation in this case was made by federal court.

This is a very difficult discussion. I worked for years in a neonate unit with some incredibly poorly babies. Some times a descision was made to withdraw care if ALL the tests showed that the baby was unlikely to survive. Once or twice (in 10 years) a baby did defy the odds and breath on their own. One is still alive but doesn't have a good quality of life (ie in pain) and another died later. Drs are human and make mistakes, but they all want the best for their patients. They are amazing and I NEVER met any Dr who made ANY descision lightly. (am so sorry cant spell descision). My heart goes out to all relatives who have had to make this choice, whether their relation was their baby or Mother or indeed Grandparent. (as was our families experience)

I just read this out to a friend as a prime example of poor tv comprehension. For example at no point on Louis Theroux did the doctors blame each other after Langston's recovery. Plus, "they parents where" is hilariously to read aloud.

yes hilariously

I think the old adage "being cruel to be kind" can be applied here.

Sometimes you have to do what is best for the person and put their need above your own need not to let them go.

Nobody should be made to feel guilty for acting on the doctors advice.

OP what do you mean when you say you don't trust doctors?

It's one thing to think that doctors are fallible and may make a mistake and another to say you don't trust them (that implies that they are purposefully trying to deceive you, possibly with a view to a personal gain). Of course doctors make mistakes, why wouldn't they? Everyone makes mistakes, it's just that medical mistakes can have horrific repercussions. Doctors also get it right and patients/families misunderstand - as is evident from what other people took from the documentary as opposed to your version of things. Statistics are difficult to grasp (for everyone), we are all subject to reasoning biases (e.g. we tend to assume that good things are more likely to happen to us and bad things more likely to happen to others), and patients and their families are already in a vulnerable position anyway.

I am sure doctors don't enjoy giving bad news or making mistakes. I am sure they would like to be able to treat everyone, but sometimes this is not possible and it is important that patients and their families have realistic expectations.

Cheeky - I am so sorry to hear your plight, I hope you get lots of precious time with your baby.

I never understand all this "fighting" business either. No one survives a particular illness because they "fight" it - it is down to Mother Nature which way it goes. My mum passed away and she was the strongest woman ever, she was just up shit creek and there was nothing anyone could do.

Travelling - so sorry to hear about your son too.

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

You haven't mentioned the other guy on the Louis Theroux programme. The one who had been on life support for 6 years. Would you really want to carry on for that long with no quality of life?

I think you're being unreasonable to 'not trust the doctors' when they are the experts in their particular field. I know from experience that no discussion as to whether to continue with treatment or withdraw is ever taken lightly or without lengthy tests and discussions. I have certainly been involved in discussions about continuation of care, and about the 'what if this doesn't work, is there anything left to try' question is always addressed when we are really struggling. Parents wishes are sought early wherever possible.

The vast, vast majority of the time, doctors are correct in their opinion that someone will not recover - to allow a pain-free and dignified death is the kindest thing in those circumstances. Occasionally they are not correct, but that doesn't make them untrustworthy - it makes them human.

Those programmes focus on the rare occasions where the unexpected does happen, it's certainly not a common occurrence, but they do seem to foster distrust in doctors which is incredibly unhelpful both to medical professionals and the people who are scared by the programmes.

It sounds like you actually agree with the need for good end of life care though op, you just worry that treatment may be withdrawn too soon?

I have jumped up and down and told all my nearest and dearest that they are in no way to turn off the machines.
I agree with the poster upthread who said that while there is life, there is hope.
I am also in the process of making a living will.

Cheekybambino, I so so agree with you 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". That is how we felt about my Mum.

Splasheeny- you are right that end of life care is not the same as withdrawing care. But it can mean the withdrawing of medical treatment. In my Mum's case, she had blood poisoning and acute kidney failure. She had other medical issues which meant treating these things was very difficult. Her organs began to fail. The treatment was not working so the doctors stopped. She wasn't on life support and there was no machine to turn off. We could have insisted they carry on pumping her failing body with antibiotics and diuretics and the administration of oxygen which she found very unpleasant. Instead we let nature take its course, except nature was improved by the morphine the doctors administered to keep her comfortable and the care of the nurses, who right up to the end washed Mum, moved her to prevent sores etc etc.

People who have not been involved in palliative care and end-of-life decisions can be so very hurtful and naive in the comments they make. Doctors and families aren't going around 'making' people die where they wouldn't otherwise. Medical treatment should not be administered at all costs.

126sticks. The decision to turn off your machines is not made by your family it is made by your doctor as they are actually qualified to make such decisions. they will be guided by what your family say your wishes are, however ultimately it is the decision of the doctor.

Intensive Care is a limited resource and a very expensive one. The ethical dilemma created when everyone wants everything, is rationing of scarce resources.

Do I continue to ventilate the 80 year old who has had a massive stroke who according to her family wants everything done, in case, you know a "miracle" happens, at the expense of the 30 year old who has been hit by a bus but has a good prognosis? There are no ICU beds in London tonight would you like to make that decision?

Living wills are a great idea, however in practice they are very difficult to apply in an acute setting as they are not specific enough in most cases.

What we need is open and honest dialogue about end of life care and some understanding about what intensive care involves. Unfortunately the magic wand batteries are flat and we all have to die sometime. Personally I would rather not spend a prolonged time in ICU with a tube in every orifice if an intensivist decides on the available evidence that I am unlikely to make a full and meaningful recovery.

Living wills are generally used to express wishes about when care should be withheld or withdrawn. In the UK, as a competent adult you can refuse any treatment, as an incapacitated adult your previously expressed wishes about refusal of treatment will be taken very seriously into consideration when medical professionals make the decision. Medical professionals try their hardest to make these decisions in accordance with family wishes, but sometimes this is not possible and all parties appeal to the courts for a decision.

There is no right to request treatment. If your doctors deem your treatment to be futile it will not be started/continued despite living wills and/or family wishes. Again medical professionals will try their best to reconcille all wishes but if it's not possible they will withhold/withdraw treatment where they deam it to be appropriate.

Splasheeny- sorry, if you read my post I didn't want you to think I was diagreeing with you. I realise your comment about end of life care not meaning the withdrawing of care is in reference to the OP's thread title. It is so important people realise that in an end-of-life situation patients are continued to be cared for, even if they aren't receiving actual medical treatment. I just wanted to explain my mum's situation and let people also realise end-of-life decisions don't always involve the 'turning off of a machine' but can involve the cessation of other treatments.

I dont know all there is to a living will.
In my case it is more a letter to my loved ones expressing certain wishes in certain medical scenarios.

I didnt realise that doctors order the turnoff of machines against patients' relatives wishes.

I obviously need to read up more about all of this.