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Old 29th October 2012, 16:28   #1 (permalink)
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End of life.

I'm so angry and also soooooooooooo upset for my dad at the moment, Ive just got to let of steam before I go bash a doctor.
When my dad was diagnosed with kidney failure last October he was an extremely fit man for his age, 87 and still playing 3 full rounds of 18 holes golf a week and on the days he didnt play he used to go for a long walk along the river, a round trip of several miles and often did it again in reverse. The news he was to go on dialysis knocked him sideways and he never picked up his clubs again from that day. We've watched him lose weight through totally not eating and he is now basically starving to death.

On his birthday in September he was rushed to hospital with fluid overload ...... in spite of having regular dialysis that week plus getting the all important 'fit to travel' letter for our due holiday just 2 days earlier.

When he had recovered sufficiently to be moved to a ward dad asked a nurse to tell him exactly how he would die if he withdrew from treatment. A doctor was called and together we listened as he explained the procedure. We were told that an 'end of life' package of support would be given and he would be made as comfortable as possible, dad was then asked if he wanted to consider withdrawing and he said no, that he was finding dialysis and the fact he was so ill hard to cope with but he wanted to die naturally and not commit suicide.

Since then, whenever dad has been taken in to hospital he has had the 'end of care' team visit him. Each time dad has told them he wants to die naturally and that he isnt ready to give up yet but to my knowledge this team has visited him 6 times at least. Last week I was there when the renal councillor walked in, again the same question was asked and again dad said quite clearly that he wasnt ready to die yet. This woman stayed for another half hour and basically tried to sell him the idea he would be better off withdrawing and when dad kept shaking his head she then threw in 'George, the days are getting colder, do you really want to be brought into hospital 3 times a week on cold and frost mornings'.
I have reported her and this team and had a conversation with the really nice doctor who is looking after dad. I told him that dad is depressed, he is very ill and cant come to terms with the fact he is never going to play golf again, golf was his life and he has no other hobbies, I've asked for stronger anti- depressants and there is nothing they can offer him so why keep depressing him with talks of ending his own life. My jobs is hard enough trying to keep dads spirits up without this bluumin' team keep trying to free up a bed. Has anyone else ever heard of this, its so desperately upsetting.

I've now asked the doctors to add 'dont send in the end of life team' to his notes, dad talks to me, I will be the first person he tells if and when he is ready and I will call in the team myself then, until then bog off and let me look after my dad.
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Old 29th October 2012, 16:41   #2 (permalink)
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Re: End of life.

Mo, i was going to post a link to the 'Liverpool Care Pathway' as it sounds as though this is what they are trying to force your dad to do, but it's rather upsetting to read. there's been a lot of controversy about this subject, with some hospitals using it without even asking the patient or their family!
i don't remember if i posted the circumstances when my husband died, intensive care were fabulous, but we had issues with the bereavement nurse, and i have already given instructions that a large sticker (or similar) is to go on the front of my notes saying that under no circumstances is the bereavement nurse to be contacted. maybe you could do something similar, or even threaten them with legal action.
this must be very distressing for your dad, it obviously is for you, so i hope it is sorted quickly.
i apologise if you do look up the link i mentioned and it isn't the one you mean, the last thing i want to do is cause you more upset. take care.
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Old 29th October 2012, 16:47   #3 (permalink)
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Re: End of life.

Report them to the BMA they are totally out of order. Life is precious regardless of age and capabilities. I personally would have physically threatened them, then let them prosecute me so their practices were brought out in the public domain.
Show the b@st@ds up for what they are.
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Old 29th October 2012, 17:09   #4 (permalink)
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Re: End of life.

Mo İ'm soo angry reading this they are right out of order and they should leave the poor man alone...this is abuse.
your dad is in a vicious circle ..and no wonder he's depressed with that lot.

How is he physically can he potter around..why has he stopped going for walks or going to the golf club.

Life doesnt end with dialysis so dont wrap him in cotton wool encourage him to do things.

Yusufs father is over seventy now and gets haemodialysis just twice weekly he wouldn't agree to more..hes very stubborn
he cant drive now as his eyes are really bad and we couldnt play Okey this week when i was visiting. ..hes also had two hip replacements since starting on the treatment and he uses crutches to hobble about ...

But he still has a tongue as long as his arm and what life he has he wants to keep. He likes his family around just to argue with them ...he is argumentative.
He stuffed himself over the bayram loads of salty things too..bottles of Şalgam gallons of cola..and he was glad to get on the machine on Saturday morning to shed the fluid that had built up...diet..what diet..

There would be no question of him being broached to talk about the end of his life here in Turkey and he will be kept going as long as they can and he can manage.

Your father should please himself and eat what he wants..i wouldnt worry about diets..tell him to show them the finger when they next come round.
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Old 29th October 2012, 17:51   #5 (permalink)
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Re: End of life.

Shirley, dad went into an instant decline when he was diagnosed. Basically, he gave up, if he couldnt play golf he had no life, thats what he thought. Looking back to that day he went into shock, stopped eating and he just finds it hard to cope with being inactive. He was a sportsman, he has played golf for 50 years and before that it was football. He loves being outdoors, it isnt the kidney failure that is killing him he is starving to death literally in front of me. A lot of his problems are in his head, he just cant comprehend what has happened to him. He could have played golf for a few more months but now he hasnt the strength to even sit up on his own. Its so very sad.
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Old 29th October 2012, 18:38   #6 (permalink)
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Re: End of life.

Oh Mo, I was so sorry to read your post.
There is a lot in the press at the moment about this happening and it doesn't make pleasent reading.
Luckily your dad has a loving, caring family around him, what happens to the people who have no-one are they "bullied" into making this decision.
Euthanasia is illegal in this country, so WE can not openly help our loved ones to ease their suffering and yet this is openly practised in hospitals, I don't understand.

I don't know what to suggest for your dads depression. my dad did the same when he had his leg amputated and like your dad refused to eat, its heartbreaking watching them.
What turned it around for my dad was his love of woodwork, they had classes at the hospital for amputees and he went along and helped others, it really turned him around.
He lived another 5 years after that, and used his time helping others came to terms with the loss of their limbs.
Hopefully your dad may find something to give his life some purpose. What about golf on an x box or something.

I'm thnking of you Mo and anytime you want to let off steam, I'm here

Sue xxx
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Old 29th October 2012, 20:40   #7 (permalink)
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Re: End of life.

Aww-Mo-what-can-I-say?
It-is-just-too-sad,-so-very-sad-indeed.
Sad-and-pretty-much-cruel-and-frightening-for-Dad-and-for-you.
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Old 29th October 2012, 20:57   #8 (permalink)
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Re: End of life.

I found that disgusting to read Poor sole. I never knew that there was things like that going on.

Why can't they just leave him alone.

Take care Mo,


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Old 29th October 2012, 21:11   #9 (permalink)
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Re: End of life.

Mo, I am so sorry that your dear Dad is back in hospital and also very sad too of the treatment he and you have experienced. I felt sick inside as I read your post as this has recently happened to our friends' Mum. I know your Dad will fight Mo as he has you behind him and all the love and care he could wish for. I don't know if you or any other members read the article in The Daily Mail on Saturday it is our friend Terry Greenwoods' Mum Patricia, who survived the Liverpool 'Death' Pathway, it is an in depth article of what happened to our friends' Mum who only live around the corner here in Thornton. It is also stated that there is to be a countrywide investigation into these methods. Terry, her son in the articles' photgraph, relates how they managed to feed her water etc; as they had just given up. We have all been shocked at this treatment regime. Again seems like Targets, but for goodness sake this is 'peoples lives' !!!!!!

Pat is now at home, but still has a long haul ahead, but she is a strong lady with such a fight on her hands.


I survived the death pathway: Patricia, 82, was given two days to live, but her family defied doctors and gave her water through a straw - now she's planning a world cruise | Mail Online

Mo, I hope this article helps you and gives you some hope that you are doing what is best for your Dad, and you are right they can bog off.
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Old 29th October 2012, 21:27   #10 (permalink)
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Re: End of life.

This may be nothing to do with your dad's situation but my own 93 yr old dad totally loses his appetite when he has antibiotics. When he didn't want to eat during a stay in hospital I thought he was giving up the fight and he lost weight and energy and his will to live. Luckily he was discharged and I nursed him back to health. We didn't realise at the time that the antibiotics were causing the problem, it's only since then that we have realised everytime he is given antibiotics he just can't eat (and it makes him depressed). Are antibiotics used during or at the end of the dialysis process?
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