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

Thank you 😊 💖 I keep on keeping on, but it is hard sometimes 😢

I remember reading about the young lad in the States who had the hemicorpectomy - I couldn't get it out of my mind at the time as I hadn't thought surgery like that was possible, survivable, or ethical. But I also remember reading that there had been time for the medical team to discuss with him, and that it was what we wanted when death was the only other option. I don't think it's what what I would want - but how can anyone who has not been in that position really say?

I also wonder if there is a cultural difference between UK and the States, as I can't see this kind of radical surgery being presented as an option in the UK - but I have no idea really.

You sometimes see cases in the courts here when family and doctors disagree about what treatment is in a patient's best interests when patients can't decide this for themselves. I'm not sure if this happens in other countries where finances have a bigger impact on treatment and if it's the insurer who has the final say.

Agree about the algorithms pushing this kind of content - whilst it's good that disability is visible and not hidden, the way these account show up also feels quite voyeuristic. Especially as a lot of them are linked to fundraising efforts to pay for medical bills.

Really sad and thought provoking thread - I am sorry to hear about the difficult experiences other posters have shared about themselves and their families.

My dear Dad died a couple of years ago, when life support was withdrawn by doctors 24 hours after he suffered a huge heart attack. His brain had just been deprived of oxygen for way too long. I’m devastated that he died - but although he would never have filled out forms, he would have absolutely hated to have been kept alive by the medics, but be very badly brain injured. I’m heartbroken to have lost him, but it’s a small comfort that he didn’t have to face that. Miss him so much…

Definitely. It seems to be excellent at acute care in emergencies - which I've experienced and had great benefits from - but therapy or other type of support and treatments for disabilities, especially obscure or rare disorders like mine, are practically non-existent. I think most people who are disabled with chronic illness probably just exist in limbo, and if they get PIP, they are absolutely fortunate.

I've worked with a lot of people who've had heavy facial reconstruction, some from gunshot wounds including self inflicted, some people go on to be very grateful (including those with self influcted wounds), some struggle. When faced with someone who's potentially unconscious then how can you make that decision for them?

And its often not going to kill them. At least not immediately. Essentially you'd be talking about euthanasia.

The way healthcare works is someone will come into A&E with life threatening injuries. They will be resuscitated, different teams do get involved but it's not really a facial surgeon deciding if the patient lives or dies. Once the patient is stable the various teams will get involved and do their bit. It becomes complex if you've got to get all the specialties into an MDT before you decide if it's worth saving that patients life. The patient would probably die before a decision was made.

So essentially once the patient is stable your then talking about euthanasia if you say "this person's quality of life is going to be too poor so let's not bother reconstructing their gunshot wound". In the moment of deciding to resuscitate or not I don't think in many of these cases the team would be able to gain enough information to make an informed decision in the time frame

I was an A&E sister. We were situated between two underground stations so people who intentionally went under trains was a not uncommon occurrence. Many were in a horrendous state when brought in and huge attempts were made at resuscitation and were obviously not going to lead anything like a normal life if resuscitation was achieved. I frequently wondered why we were making these heroic attempts and questioned the morals of our actions.

It's probably a strange thing to say, but I often think of assisted dying and if I'd be happy going somewhere that it's legal.

I had a head injury and post concussion syndrome before being injured by an off label antipsychotic prescribed for severe insomnia and anxiety and it gave me a permanent neurological involuntary movement disorder called tardive dyskinesia. This is a bit like Tourette's and Parkinson's disease combined, but in some ways more bizarre: the antipsychotic made my dopamine dysfunction so I get involuntary movements of various parts of me so my tongue and mouth move on their own, and my brain sometimes actually feels like it is vibrating inside my head. Yes, these are genuine symptoms and pretty distressing at times. I've had it for a decade and adjusted somewhat as it's in remission, but there's every chance new symptoms might develop or come back.

Not having control over my body is horrible, but I can be ok with it at the moment, and if you met me then I am sure you'd never know I had it. If I was injured or disabled in some other way, I might be more distressed living with another type of health problem too. I'm going through perimenopause at the moment, which isn't great, but luckily my movement disorder symptoms are ok.

I think if there was a way of knowing how much my health might change in future, it would make it easier to say how much medical intervention or not I might need in dire circumstances 🤔

From my experience last year I saw that if you’re over 70 they seem to think it’s curtains and write you off. Nana had suffered her fourth massive brain bleed. They said she’d die within hours. She lasted nearly two weeks. In that time they stopped all feeds and kept her alive with saline.palliative care were lovely but.

I disagree with this. If a person is 98 years old and terminally ill, but insists the NHS provide extreme and very expensive treatment to keep them alive no matter what, do you really think that's the best use of limited healthcare resources?

Unpopular opinion with some, but I feel the same way about babies born with anencephaly, trisomy 18 and other severe birth defects that are incompatible with life. They should not be subjected to unnecessary torture and the healthcare resources should not be taken from children that actually have a chance.

I used this to do a living will and handed it in to my GP

compassionindying.org.uk/how-we-can-help/living-will-advance-decision/

If I have dementia, or a massive brain injury I don't want any treatment

I've said it before but I sat watching my mum die like.. this is ridiculous. She has dementia and sepsis, she's actively dying and we have to just wait? Yet you would be charged for cruelty doing that to an animal? Why does she have to go through this process when we could end it?

I think people need to be clear with their loved ones about what they would want in situations where traumatic e.g. brain injury or severe physical damage is caused. DH and I have been very clear with each other at what point we would each do all we can to ensure the other’s life support gets pulled and we aren’t patched up and forced to live with a profound and life altering disability.

Equally, whilst medicine might be able to keep a profoundly disabled baby alive, I think it’s unethical to carry a pregnancy to term knowing that the child is going to be profoundly disabled. It’s one thing to be determined to live a full life and make the best of what you have if you become disabled in life, or if a disability is undiagnosed prior to birth. But to knowingly choose to subject another human being to a life of struggle and pain and disability that they have no choice over and which you wouldn’t ever want or choose for yourself? I can’t countenance that.

I completely agree with your point and I've always said prolonging life for the sake of it - for me - would be unpalatable.
But I, in no way shape or form want a doctor to decide what I may or may not be happy with - there's too many unknown factors. I suppose that's where the idea of assisted dying comes in. Say I'm in an accident and have all my limbs amputated. After a period of adjustment I should get the right to say actually no thanks this life this way isn't for me give me a huge dose of morphine (or whatever would be the least painful way out).

My parents have recently completed the paperwork to have myself and siblings as their LPOA.
One parent wants life saving measures if required - CPR, but doesn’t want to get into a cycle of constant operations or lots of medical interventions to stay alive.
Other parent wants no medical intervention at all and stated that if they caught Covid they didn’t want to go on a ventilator as they thought a “young person” should get it.

Get something in writing stating what you want your wishes to be.
We all feel like we know where we stand and are better able to deal with difficult medical decisions as they arise.

Yes there are documents you can complete as above in terms of what you would/wouldn't want in these circumstances.

In general, in an emergency, the aim will always be to preserve life as;

1. You usually don't know the wishes of the person on the table
2. There is likely no way to tell fully how a person will be affected (physically/emotionally etc). Obviously in extreme circumstances like decapitation or gun shot wounds to the head, a decision will likely be made that the injuries are not compatible with life and treatment won't be attempted/stopped. In other cases, the outcome and the persons feelings around potential outcomes are unknown.
3. It's a little scary when we start to allow doctors to put their own morals/feelings on who should be saved. Many doctors will have different opinions, but who would be 'right'?

Edit to add - sometimes a person is 'saved' when they didn't want to be, which is incredibly sad.