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

[En0ufh1sEn0ugh39]

I recently started watching Facebook videos and haven’t yet adjusted my preferences for content I want to see. I’ve been bombarded by videos of “feel good” stories. It’s largely about people in the US who have had life changing injuries. So for example, a shot gun wound where they lost most of their face, or someone who has had all of his body below the torso removed because of an accident. In all these cases the person nearly died but was saved by modern medicine.

I want to be clear I am disabled myself (and have a not great quality of life) and I think if people want to have surgeries/treatment they should have them on the NHS and be fully supported by the welfare state if needed. But, is it always ethical to
intervene? And is consent always needed?

I’d be really interested to hear from any medical professionals or people with firsthand experience what they think. Is it possible to put in place something on medical records to say in advance when we wouldn’t want treatment.

My experience is that the NHS/medicine is great at physically saving people but there is very little support for living with the impact of serious illnesses/injury. I assume it’s the same in the US.

YABU-we should always use medicine to save a life

YANBU- it’s more complicated and sometimes it’s kinder to let someone pass

Nice recommendations are done on qualys- quality adjusted life years, how much life benefit is gained for how much cost. It has zero role in any decisions we make acutely as to how or who we treat (heart attacks strokes major trauma etc).

It's role is predominantly in determining if drugs or equipment should be funded for a specific condition. Most commonly cancer drugs as they cost a fortune and can sometimes only at best offer a couple of months of extension of life (so needs to be a national decision on how best money is spent). Sometimes v rare diseases with no treatment (motor neurones/Huntington etc) that have horrific quality of life will be given a vo ahead even if minimal benefit for a high price as there's no alternatives/humane reasoning etc

en.wikipedia.org/wiki/Quality-adjusted_life_year

I haven't read the full thread yet, but I also think about this a lot.

We spent 6 months in hospital after a car accident (100% caused by a negligent driver).

My 5 year old son (now 12) was rendered paraplegic in this accident and I am permanently disabled and in chronic pain. There was a time that I (and my son) wished that we had rather died, although we're currently in a place where we are happy to be alive.

But the time spent in the rehabilitation hospital was horrific. Some children had near-drowning accidents and the lack of oxygen to their brains left them unable to do anything by themselves. They lay in bed all day, moaning and staring at the ceiling.

We live in a 3rd world country and this was in a private hospital, so the parents are paying for the care of their babies, which includes feeding tubes and being turned over now and then. What kind of a life is that?!

I know a family whose baby was deprived of oxygen at birth and the hospital admitted fault. They were paid out quite a bit of money, but it's in a trust and gets doled out as the trust sees fit. It only covers medical equipment and doesn't take into account that the parents have had to change their lives and careers to fit around this and all three (mum, dad and son) have zero quality of life. They joke that they are the poorest rich people around, but I know they are miserable.

I don't know what the answer is, I really don't. All I know it that there is no god. Surely if there was a benevolent god, he would not let these things happen?

I think barbiturates are the easiest way to go. I’d agree with you though. In the Netherlands in order to get help to die you should be in unbearable suffering. It’s a subjective definition obviously as we all have different thresholds but Ibthink it’s appropriate.

Yes so why desperately prevent illness in the extremely old - they do though!

Well if I’d have written after 80 that you can commit suicide with professional assistance, it would have been outrage all round - just look at the recent assisted dying bill!

Also, doctors don't know in advance how a person will do. They can judge probabilities but there are always outliers. I know an ICU doc with a story about an 18 year old, high speed head on car crash, no seat belt. Presented at ICU with absolutely catastrophic head injuries, to the point receiving physician hesitated to commence attempting treatment. To everyone's surprise he was still alive the next day, but prognosis was terrible.

He walked out of hospital and went to university. Granted, that's an extreme outlier, a "once in a career" story, but it happens.

Wear a seatbelt.

It is interesting that people are saying they don't want saving after a massive brain injury. I used to say the same. Recently someone very very close to me suffered this, and was expected to have no quality of life. They were kept alive. Brains are so unique. Despite huge trauma, this person is now walking, talking and enjoying life, not very long after the event. I won't give any more details. However, it has made me rethink what I vocalise about my own wishes, should anything similar happening to me.

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?

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.

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

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.

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'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 💔😪

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 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.

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.

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

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

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

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

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 😆😅🙃

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

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.

That is very interesting. I wonder if there needs to be more of a National conversation around this. From comments on this thread and my own observations there does seem to be a divide in health care-if there’s an acute incident with A&E care then everything gets thrown at treatment even if the outcomes might not be great for the patient and they could require expensive ongoing care afterwards. But, for a lot of others e.g. with chronic conditions or MH issues there isn’t the same level of support/funding.

Thanks so much for sharing-I will check
it out