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Who decides??? - Carers UK Forum

Who decides???

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The trouble is that doctors see saving a life as paramount over the possible quality of life. So they save lives without taking any responsibility for what happens next, and the system relies on the relatives because it cannot afford to do anything else.

So, we have to ask two things:

1) If doctors save a life, should it mean that the system is automatically responsible for the support of that life? (I believe it should)

2) Knowing the way the system works, do we want them to make judgements like this? A surgeon responsible for my sister's heart care almost left the operation too late: she has learning disabilities. He had to retire due to Motor Neurone Disease, and his replacement organised an operation shortly after his first consultation with her, saying that it was very urgent and he couldn't understand why it was left for so long.

It doesn't take much imagination to join up the dots, does it?
Two points:
1 Hospital league tables. More deaths means a lower rating in the table, therefore the management seek to keep mortality as low as possible. The alternative is possible closure of the hospital and loss of job for admisitrator and medical / nursing staff.
2 Where is the cut off point? If euthanasia were allowed, how many older people would agree to die because they felt they were a burden on society?
My late wife and I watched on television as a woman who was far healthier than her took a plane to Switzerland, where she would commit suicide by self administered lethal injection. We were both horrified.
I fought and succedded in saving my wifes life when the medical staff decided to let her die, quoting her right to humane treatment under existing Human Rights legislation. She died peacefully at home a few weeks later.
There is no Golden Rule, every case is a one off, but I fear the less articulate may get a rough deal, and die primarily for administrative reasons, costs of care etc.., rather than medical reasons.
A 'living will' can save a lot of heartache for relatives and medical attendants.
I understand a new law has just been introduced which allows the State to appoint a Patient's Champion to defend his / her corner in these situations. We will have to wait and see how this system pans out. I have written a 'living will' making my desires known in this regard.
As a society we should stop hiding our mortality and face up to some of the more difficult decisions ourselves instead of leaving them to lawyers and doctors.
best wishes normangardner
Perhaps I am a little jaded in view of recent events (Mother in hospital yet again, being "saved" by chinless wonders in white coats), so I apologise for this rant before I even start!.

Since 1989 ("Year of The Stroke") my mum has been in hospital on many occasions, and each time I am faced with having to listen to (and argue with - through gritted teeth) arrogant consultants & doctors (who all think they are God) about "what's best for Mum". I have only ever met one doctor (newly qualified) who took the time to find out what mum actually wanted if, in the event they would have to resuscitate her. He was the only one! All the others wanted to tell us how they were going to operate on this bit of her head, bladder, leg, toe etc and do that. blah blah blah whilst exuding "aren't we wonderful?" smugness

Dont get me wrong, I love my Mum dearly and will be devastated when she does go. When I read the article written by Clover in the Daily Mail I wept. There are strong similarities with my own situation. Her situation is far worse because at least my Mum can speak - although she is very confused at times.

I truly believe that the ultimate goal of the medical profession is to preserve life at all costs. They do not think about the consequences because they dont have to! They do not give a tuppence about what happens after the event. I'm sorry but it's only those who have money that can really get the proper aftercare. My mum gets pension credit and is lucky enough to get Direct Payments for care from social services and an award from the ILF but only because I fought hard for it (and knew who to speak to). What about those people who are put off by local govt bureaucracy, confusing and over complicated forms?

My mum often tells me & my sister that she would rather have died 20 years ago. I try to make her feel better by telling her that she isn't a useless lump (her words not mine) and that I dont know what I would do without her but sometimes in my own private thoughts I do agree with her. My sister always thinks it would have been better for Mum if she had died rather than to have to suffer the humiliation of being the way she is (incontinent, blind, paralysed). It was the worse thing that could have happened to my mum - she was 48, active, a trained nurse working in a nursing home and I remember she was quite obsessive about hygiene esp personal hygiene - she hates the way she is now and is understandably very very angry.

She has told us point blank that she does not want to go into hospital again as they don't look after her properly (her wishes not ours) it's going to be a tough decision - do I call 999 or let her go?

I have written a living will as I do not want to go through what my poor mum has had to go through. Also, I wouldn't want my nearest and dearest to have to make difficult decisions or have to care for me.

It would be different if we had a competent NHS but we simply dont and those that cannot afford private health care suffer.

Thanks for listening. Crikes I should have been in bed long ago!! These sites are addictive!

CB Image
I never seen this thread until CB had posted and just read Clover's story and like CB I found it hard not to cry. It also had a few similiaries to Mum and us as a family.

I remember when Mum was a few years sick she had taken seriously ill. I had found it difficult to get her to eat and drink, she slipped into deep depression and refused to eat or drink, i prayed so hard that she would not die and then when she did pull through when doctors had slim hope, I felt guilty as I knew she was unhappy, was it her fight or was it my prayers that kept her alive? I could not bare to live without my Mum and be all alone with my 2 much younger sisters.

Then about 6 years ago when Mum had lost her swallow and she was aspirating, she was having huge chest problems, they asked me to make a decision to allow her to keep taking orally and it would shorten her life or peg tube fed which would prolong her life... Yet again was I thinking of my Mum ? This I always wonder. As with Clover's Mum, my Mum was to beautiful, bubbly, funny, intelligent, unjudgemental, brilliant loving Mum and I just couldn't be without her and still to this day I couldn't make the decision to let her go neither could I let anyone else, maybe its my faith..

I will probably regret posting this in the morning, but it bought back a few of the many guilty periods in my life and I guess I feel a little better for getting it of my chest before bed!

Anyway I'm off to bed now, Mums sound asleep, nite nite all x
Maryann, you shouldn't feel guilty for loving your mum.

CB, I know what you mean - my father had a massive stroke a little over 26 years ago, and he is so different now. But he would never have seen his grandkids (you should have seen his face: still chokes me up), so it's a tough call. When he broke his hip a few years ago we had the "opportunity" to see how three hospitals work.

Two were very poor. The other one was more of a rehab facility than a true hospital and was fantastic. We had to fight to get him in there.

Ultimately, you're right. We no longer have an NHS: more of an accountancy department with surgeons who do their stuff without thought of the consequences.
Maryann - I think you are fantastic. This all happened to you when you were so young and you had two sisters to look after. How on Earth did you keep going?

Charles47 I think you are wonderful too Image - a true voice of wisdom if ever I heard one.

I'm less tired now and after reflection I can see that the stuff I wrote last night must have sounded very harsh. My mum is still loved & valued by me and all the people who come into contact with her. She was making us laugh the other day - my boyfriend & I were in hysterics. I love it when she's happy. She is very strong willed and can be cantankerous at times and down right horrible at others (cant we all?) but I love her for it. It's bath day on Sunday and after the screaming and shouting has died down, she always looks so serene in her cotton nightie surrounded by clean sheets wearing her glittery pink hairband!! It's just the times when she's confused, when she cant communicate or eat and the only words she can speak are a garbled "No More". She is the only person who accepts me, warts and all. I know I will miss her when she goes. Feeling a bit more reflective today. Maybe it's because I dont have to go to work for 4 days!

As moderators, do you check postings? I was a bit annoyed with the one about the respite in Spain - it just seemed like a sales pitch. Are those "adverts" really appropriate for this site? I suppose some people might be interested... Image
CB, if only my wife had read your post. Or my mum. I can imagine it now: "the nearest you get to wisdom is your toothbrush...!"

As moderators we get to zap the spammers, but I have to say that the Spanish one you refer to would have been interesting for the very reason you mention - it seemed inappropriate but as you say, someone might have found it useful. I'm fairly certain it does break the rules, being a "commercial" - but is probably one we'd have to defer to Matt, Gavin or Christine about.

It's early days yet, and we're all learning at the moment! Image

Have to say it's fun deleting them though!
Yes it's a tough one CB.
In these situations we ourselves are at our most vulnerable.
I knew that at some point my wife would need a tracheostomy tube in order to survive, and I had orderd the kit on the web. I knew that if the ambulance men had managed to save her at home, the doctors in the hospital would let her die.
The only thing I could do was do a tracheostomy myself and present them with a 'fait accompli'. It was my last despairing hope.
It so happened that she died when I was asleep and was dead when I found her in the morning. So I was saved from having to act on my decision to save her at any cost.
Would I have actually done it, or said enough is enough, I'm not God ? I'll never know.
The decision was taken from me by a higher power who took pity on me and my wife. Ending our suffering, and solving my dillema.
I don't worry or feel guilty about it. All any of us can do is the best we can in the circumstances.
Learned professors of Ethics and Philosophy argue these problems constantly, and to some extent our actions are governed by our own ethical or religious beliefs.
bestwishes normangardner
Norman, my thought are with you, even though it was a while ago.

I feel for you.