TW: death/injury When is it kinder to let someone die?

I am very sorry to hear about your mum. Please see what I have written. I think its awful the way some people are treated with no one looking at the bigger picture and the actual patient.
Goes back to what I said, just because we can extend life, doesn't always mean we should

I have worked as a nurse in ICU for over 10 years, I have sat with many a parent/child/sister/partner whose loved one isn't going to make it after a traumatic event and we are ending life supporting treatment for them to say, I wish they had never come to ICU, I wish you had never put them on the machine and they had just died at the scene.

Just because we can put people on ventilators doesn't mean we should, its tortuous to drag death out for as long as we can. And please don't get me started on Consultants who won't take brave decisions and take the easy way out

You can have stuff in writing but in my experience trying to get the medical professionals to act ( or not) on it can be a fight

My mother had a catastrophic stroke. She also had an advance directive stating that she did not want treatment if she would be left disabled in any way.

But the hospital were arguing about this. And totally ignoring the dire give.

Bear in mind she was unable to swallow ( even a week later) couldn't sit up or move her left side at all and blind in the left eye. Her speech was not u understandable and needed to be tube fed
It didn't help that we were not allowed to go to the hospital at the time so it was difficult to advocate for her.

They kept pumping her full of antibiotics and tube feeding. Both things were stated as against her wishes in the directive.

Thankfully we eventually got someone to accept it and they stopped the antibiotics and feeding. Mum passed Peacefully a couple of days later. It's unacceptable that she was kept alive a fortnight to suffer though

My DH had a stroke 3 years ago. He was incredibly lucky to receive the clot busting drug which pretty much reverses the effects of the stroke but he has been left with cognitive damage.
We have gradually adjusted to our new normal but I do grieve for the future we had planned. We were both in our late 50s when it happened on the brink of a well planned retirement. The plans we had have been binned, it has been tough but we are happy.

My DHs step father had a massive stroke 12 mnths before DH had his and was left bed bound, unable to speak, sit up or feed himself. DH feels lucky to have been left with most of his faculties but the ability to “live” is my biggest worry. I also worry that if anything happens to me it will fall to my DS (20) to look after his dad.

I think it very much depends on the individual, however its important to make wishes known while you are able.
For example during Covid DH told me that he didn't want to be intubated if he fell very ill with it and there is no way I am emotionally equipped to be his carer. Faced with a long term severe disability both myself and DH agree we would not allow heroic measures for him.
Having said that I imagine if a Doc had told me DH needed to be on a vent I would have agreed to it

Exactly.

I do feel that invisible injuries like brain damage - or even neurological movement disorders and conditions like mine - are not seen as bad enough for something like assisted dying by those who don't suffer them.

It's awful living with the condition that affects the whole body, as obviously the brain is the main factor in that. By its nature of course, doctors only know so much about the human being's most mysterious organ. If I'm totally honest, I'd rather have had something like a limb injury as it might have been easier (probably not the right word) to live with perhaps.

God knows. I'm rambling now. A decade of a body that doesn't work is taking its toll 😆😅🙃

The issue is you don't know
My ex was hit by a car and will never live independently again
I wouldn't want that. So I would rather say I don't want to live, than risk living in a way I didn't want to

Research is pretty clear that people with disabilities and their carers rate their quality of life as considerably better than medical staff perceive it to be.

Decisions should in my view predominately rest with patients themselves or their immediate family/carers, Where a person is unable to make decisions or is too young to do so we have an imperfect court process to manage conflicts,

If we legalise assisted dying we will have conflicts the other way as some people choose to die when medical staff believe they should live.

In the end you can only make decisions for yourself and everyone's decision will be different

My dad had a severe stroke a few years ago aged 65 that has left him paralysed on one side, needing a wheelchair and fully dependent on my mum and carers. He has often said he wishes he had been allowed to die as he has found it so hard to adjust and really struggles with life now

That's a heart breaking disgrace. I'm sorry you all had to endure that madness.

My DF had a neuro degenerative condition, similar to Lewys body dementia. It was like it a very rapidly deteriorating Parkinson’s. Within 5 yrs he became “locked in” despite my step mother claiming that he had no idea what was going on, as his daughters we knew that he was far more aware than she thought. She’d only known him a couple of years before his symptoms started.
His memory and awareness were far better than she realised, I could go into depth but suffice to say she was the classic evil, gold digging SM. None of us have heard from her since the day of DF’s funeral.
Anyway, I had a difficult pregnancy and was not able to travel to see him until after DH was born, but throughout my pregnancy he would ask my DSis how I was doing. My SM never contacted me or relayed any information to him, by this stage he was in a nursing home. What little language he had left he made it clear to DSis that his memory was not a problem, just his ability to communicate.

Once he had met my DS, a very emotional visit, and after we had got Christmas out of the way, he started to refuse food and drink. It was obvious he’d had enough, he’d waited to meet his newest grand child. Without the ability to communicate his only way out was to starve himself. It was an incredibly painful and difficult thing to do, not helped by the fact that physically he was very healthy, no underlying health problems.

Effectively he took his own life. I’m quite certain that if assisted dying had been available and with a LPOA in place we could have made his decision much more humane.
We understood his decision to refuse food but the young GP charged with his care was very resistant to the idea that we should respect his choice. All he wanted to do was have him hospitalised and basically force feed him via a feeding tube.

Much as I respect the profession, both my DSisters and I are in related professions, modern medicine has lost site of death as a treatment option. Everyone deserves choice and a good death, and life, is one of them.

Someone we know was dragged through the courts after they arranged to help their DC to commit suicide via assisted dying abroad. DC had had a catastrophic spinal injury playing the sport they loved and was left tetraplegic, ( Christopher Reeve level) they were early 20s and although happy, they just didn’t want to carry on. Having seen my DH’s cousin navigate life with a similar injury, it is definitely a life less lived. DS’s cousin held onto the hope that medicine would come up with a “” “cure” for the first few years, he was 19 when his accident happened, early on his friends took him out, visited regularly and he did enjoy life. But as the years went on they all got on with life, leaving DS’s cousin still perpetually 20. His level of spinal injury meant he could do nothing for himself. Depression set in and for the last 20 yrs he just sat unable to live life. He died last year, 57, his depression had isolated him from the world, he had refused to “join in” years ago but had to “live it out” because no one was prepared to let him die. The young man we all knew and loved died over 20 years ago leaving just the shell to just exist.

With spinal injuries I think that saving the life is essential because we don’t know what the outcome will be initially, but after a few years there should be an opt out clause. Most people only see a fraction of what a quadriplegic/tetraplegic goes through on a day to day basis. It really depends on the level of the injury, some are able to live a fulfilling independent life with some adjustments but one level up and they are unable to do the simplest of tasks without massive input from family and carers. It destroys not just the life of the patient but that of their family. Some people cope well but many don’t.

After experiencing severe disabilities within immediate and close family I welcome the right to assisted dying. Hard as it is to lose a loved one, watching them struggling with just the simple acts of living is harder.

We should all have that conversation and put in place LPOA early on. You can change your mind but having lived it I know that I wouldn’t change my mind.

Death should be normalised again.

I ought to add that she was 92 at the time, and had had major heart surgery six years earlier, for which she was taking serious amounts of medication.

of course, this was ten years ago, so I suspect that the blockages in A&E would probably help her achieve her wish.

Re the ‘directive’ : my mother filled out an NHS form, supplied by her doctor, in the GP’s surgery, with me as a witness. He had been her and the family’s doctor for 15 years, so he knew us all well. She kept a copy, I had a copy, he kept a copy on file.

When she had a massive stroke, the warden of her flat sent the copy off with her to A&E as she had requested when compos mentis (quite often, I expect). When I was told , I spoke with the doctor in A&E and told him about the directive. I offered to drive thirty miles with my copy straightaway, but he said they had her copy ‘ but we don’t take any notice of that’.

She lived another eleven months unable to speak, barely mobile, angry and miserable. She hated me , I think, because I had failed to enforce her perfectly reasonable desire to avoid this situation.

I'm so sorry to hear this.

I've not really come to terms with my head injury and subsequent injury from an antipsychotic drug that gave me a permanent neurological involuntary movement disorder called tardive dyskinesia. Many times, I've not wanted to stay alive. It's a very lonely existence sometimes 💔😪

I've had a brain injury - not massive but still it affects me a decade later. It's probably made me more vulnerable to other things like dementia etc I expect. Actually, when I was recovering in the intense acute phase of my post concussion syndrome recovery, I think it was probably quite similar to having dementia.

I lost my ability to read, and also my ability to see in my mind's eye - before I had a wonderful vivid imagination, now there is nothing but black when i close my eyes.

Brain injuries are all different, but terrible nonetheless. People don't really realise until it happens to them or someone they know.😞

I work in neuro rehab, and see a fair few people after neurosurgery and brain injury.
There is one specific lifesaving surgery I’ve told DH I never want to have.

But the alternative is dying there and then. I think as next of kin you have to be really strong to be able to turn down lifesaving surgery in a moment of extreme stress and know that’s it, nothing else can be done.

Yep we see them in f/u clinic 6m -1y later (the patients don't have to come it's not mandatory). Unfortunately doesn't happen in paeds icu as its centralised care and often many miles from home

Yes and the sort of tale that makes the treatment go on.

My Sister in law’s brother, broke his neck and 4 years later killed himself. He never came to terms with the injury. It wasn’t finances as he got a huge payout. Apparently that is more common than people realise - he was US based, but data would be interesting.

I have just seen the previous post about by the ICU doctor about craniotomy and vegetative state. The person I mentioned had all of this and more. Do ICU doctors get to meet their patients later on?