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  1. #1
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    withdrawing medical treatment

    Has anybody done this?

    My Dad is 90, he's been in a CH for 3 years and has steadily deteriorated until now he just lies on the bed, they get him up to eat, and he goes straight back to his room. He has had macular degeneration for about 10 years and it seems likely that he cannot see very much, he is very deaf, and he can no longer talk (which is why we don't know how much he can see or hear).
    I went to see him today and he is coughing a lot. One of the carers said he is on antibiotics for a chest infection.
    It was only after I'd left that I wondered why they are trying to cure a chest infection when he has so much else wrong with him. He's my Dad and I love him, and I don't want him to suffer, but if he were to be carried off tomorrow by a chest infection/pneumonia it would be a relief, for both of us, I think.
    I do have the health and welfare POA. I don't want to sound heartless, but should I talk to someone at the care home about this? Or how do I go about it? If he were fit and healthy and living a good life I wouldn't even think about it, but I feel they are prolonging his life to no ultimate purpose.
    Part of me feels bad for even thinking about it and if I'm honest I probably won't do anything about it, but if I felt strongly enough about it, is there anything I can do?
    Thanks for listening

  2. #2
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    You are not being bad or heartless just realistic and wanting a peaceful non invasive end of life as I do for my dad. I have poa for my dad and met with the visiting GP at dads care home yesterday on a crucial health matter he was very receptive and understanding, we know the dementia is only heading one way after all.. You have the poa authority to discuss this directly with the GP as well as speaking to the care home manager which I would do. I think antibiotics would be given in most circumstances where a condition can be improved by their use even if everything else is failing someone will have better knowledge than me but in not giving antibiotics perhaps the GP could be accused of bringing end of life sooner than reasonable to expect and be open to malpractice. I agree totally with you that without antibiotics just let everything take its course but chatting to the GP may help you to understand the reasoning.Do you have DNR in place?

  3. #3
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    Quote Originally Posted by Madge99 View Post
    Has anybody done this?

    My Dad is 90, he's been in a CH for 3 years and has steadily deteriorated until now he just lies on the bed, they get him up to eat, and he goes straight back to his room. He has had macular degeneration for about 10 years and it seems likely that he cannot see very much, he is very deaf, and he can no longer talk (which is why we don't know how much he can see or hear).
    I went to see him today and he is coughing a lot. One of the carers said he is on antibiotics for a chest infection.
    It was only after I'd left that I wondered why they are trying to cure a chest infection when he has so much else wrong with him. He's my Dad and I love him, and I don't want him to suffer, but if he were to be carried off tomorrow by a chest infection/pneumonia it would be a relief, for both of us, I think.
    I do have the health and welfare POA. I don't want to sound heartless, but should I talk to someone at the care home about this? Or how do I go about it? If he were fit and healthy and living a good life I wouldn't even think about it, but I feel they are prolonging his life to no ultimate purpose.
    Part of me feels bad for even thinking about it and if I'm honest I probably won't do anything about it, but if I felt strongly enough about it, is there anything I can do?
    Thanks for listening
    Hi
    I am surprised that the home has not asked what your views are on this...My mother in law reached a point rather like your Dad and when she had a chest infection we all agreed that only comfort and care would be given - no meds. It seems very cruel to prolong such an existence - for not really a life - by trying to cure an infection. I would talk to them. Hugs

  4. #4
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    hi

    my husband has just died in an hospice 26.12.16. he went in there for end of life
    because he had sepsis and antibiotics wasnt working.
    so all meds were stopped, then on day 5 in hospice they gave him oral antibiotics for urine infection, i queried this because i have POA and requested no further meds. the hospice people said he had to have these antibiotics to stop him being in pain.
    hope this helps.

  5. #5
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    Hello there Madge. Far from sounding heartless you sound loving and caring and just wanting your Dad to have a peaceful end to this evil journey. My mum is now bed ridden, doubly incontient, barely opens eyes, doesn't speak, hasn't known me for years, cant chew..... you get the picture? When, again, she was given yet another course of antibiotics for a UTI I asked the Doctor"Why? She has no quality of life. If I kept my animals like this I would be done for cruelty. Why cant we let my mum find peace?" he just lowered his eyes and looked away bless him.

    I love my mum with all my heart. We have always been so close and I miss "my mum" every waking moment - and in my dreams. Its her birthday tomorrow and I pray that it will be her last. Like you part of me feels bad BUT I know in my heart I wish this for the right reasons. I just want her - and if Im honest myself - to find a peaceful end to this evil wicked journey called Dimentia.

    Easy to say but so hard to do but stay strong and be kind to yourself - you are a loving daughter to your Dad - hugs xx

  6. #6
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    i meant to come back here yesterday but I got distracted. I had a long chat with my husband on Wednesday night and we have decided to go and see the care home manager next week as my husband is not working and he can come with me then. I know I'm probably going to cry!
    Thanks for everyone's comments. Much appreciated x

  7. #7
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    It is something to talk about Madge. But to be honest about it, as long as your dad is still able to get up and eat, he is not considered at "end of life". Now, however, is the time to be thinking and making decisions. My husband was taken to hospital at the end of May 2015 with pneumonia (aspiration pneumonia), where he stayed a week, was given IV antibiotics and then sent back to his nursing home. His swallowing reflex was more or less gone - so he was aspirating particles of food/liquid and even saliva. That's why he got the pneumonia at that point - but he had been getting one chest infection after another for a couple of years. At that point, he could no longer eat apart from small amounts of yogurt/mousse - the nursing home gave him as much as he wanted to take for as long as he wanted. He could no longer stand. I made the decision - in consultation with the nursing home, his GP and the hospital - that he would not be treated again. He remained in his own bed, in his own room, surrounded by familiar staff that he loved and died peacefully there at the beginning of August. The pneumonia hadn't really cleared up with the antibiotics.

  8. #8
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    Hi Madge
    i did exactly as you are doing last week, I went to see the care manager and asked if we could discuss end of life care. My mother is 99 and getting very feeble. Over antibiotics, she said they are often given to ease someone's discomfort. The other thing I said was if possible I didn't want her to have to go into hospital again. She said that was fine, but if she had a fall she would have to, for x rays, as they would need to treat a break to prevent pain, again,

    But overall, talking through end of life care felt a really good thing to do. I did also feel a bit like I sounded like I was hastening Mum's end but I know she was strongly against being kept going for the sake of it, and it felt good to confirm that the manager and myself were looking at things in the same way. So please don't feel guilty about it, it's a good thing to discuss with them, better now than during a crisis. I hope your talk goes well.

    By the way, I thought my Mum was heading for end of life but was also told no, she is a 'tough old bird', not end of life yet. I think she is hanging on for her 100th birthday...

  9. #9
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    We didn't go and see the care manager for various reasons, but I had a call at the weekend to say Dad had had 2 falls in 24 hours so they had to call 999 and paramedics took him to hospital to be checked over. He hadn't had an "acute attack", it is just the dementia progressing.
    So Monday we met with a dementia nurse at the hospital. He said he thought Dad would need nursing care, rather than a care home very soon but hoped he could go back to the care home while we looked around as he had been deemed medically fit to be discharged.
    Yesterday we met with one of the staff from the home who came to assess Dad, but he said they can't take Dad back because he is too much at risk of falls. He can just about stand unaided, but cannot walk without the help of two people and they do not have the staff to help him.
    The dementia nurse (who was lovely) is going to try and get him a bed in a geriatric ward while we look around.
    I did ask him about medical treatment. He said I should arrange a meeting with Dad's GP and discuss it. I think he called it an advanced medical directive? The GP will explain what can and can't be done and if Dad should come into hospital it will come with him.
    But for now we have to look at nursing homes and get Dad settled in...

  10. #10
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    I didn't believe my Dad could go downhill anymore, but I am amazed at the decline in the last two weeks.
    I went to stay with my 84 yr old mother in law last week, and came home to find lots of calls from the hospital about Dad. He had developed pneumonia while I was away and had virtually stopped swallowing. The nurse I saw on Saturday said that although he had had quite a good breakfast that morning, he was not eating enough to keep himself alive.
    She arranged for me to talk to one of the Drs on Monday. He said they had tried to put a tube down Dad's throat to feed him, but he kept pulling it out. He said that now the pneumonia has cleared up he is able to swallow a little and basically they will keep him on a liquid diet until the liquid stops going into his stomach and goes down his windpipe instead. He did say Dad is not a candidate for end of life care , but he did want us to see his GP and draw up an advanced medical directive so he doesn't get into a cycle of coming and going from hospital.
    He was assessed and accepted by a nursing home before the pneumonia, but now they want to assess him again. They were supposed to come yesterday but rang and delayed it until today, but when I rang this afternoon the hospital said they hadn't turned up but they would chase them up tomorrow.
    I sat with him yesterday, talked to him and stroked his hair. He opened his eyes once but showed no other reaction. He can't see, can't hear, can't communicate, can't move. He's propped up on pillows and being turned regularly. How can he not be a candidate for end of life care? I wish I had spoken to the Dr more about it.
    I thought I was ready for Dad to die, but this has upset me so much. I don't know which is worse, having him die or seeing him living like this.

  11. #11
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    Oh Madge, how heartbreaking for you

  12. #12
    Registered User Angie1996's Avatar
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    I recently went through this, they get so bad you want them not to suffer no more, and on the other hand you don't want to lose them either! its so so hard to watch them suffer so much and it becomes about "quality of life" poor fellow does sound very poorly.

    The infections are terrible and really makes a person deline so fast.

    Stay strong x
    Regards
    Angie


  13. #13
    Registered User Merrymaid's Avatar
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    Mum's just tipping into this stage now

    I have just read through all the posts on this thread and recognise the agonising decisions being made by loving caring relatives. Following a fall and resultant hip replacement my Mother has deteriorated swiftly to the point of severely reduced and often non existent food intake. She is also only taking small amounts of fluids. Her mobility has never recovered since her fall and her increasing frailness means she can only stay out of bed until lunch time as she is then too tired to sit up. The CH staff are generally being really helpful and so I made the decision to approach the manager to discuss Mum's wishes for her end of life care. He was very understanding & knows I have LPA for Mum. I have also had a chat with the Doctor about how things may further deteriorate & what Mum wants. These were difficult conversations to have as was the original talk Mum and I had many years ago when this disease first took hold. We cried so much then but at least I know the hard decisions I now make on her behalf are what she wanted. I too still struggle with not wanting her to pass, but also not wanting to watch her struggle against this devastating disease any more. My Mum lived with me for 30 years before she entered the CH 2 years ago when her needs became more than I could manage. Although I know the decision was the right one and all the subsequent decisions are made with her best interests at heart; I fear I too will always be dogged by guilt, as I have to accept this is something I cannot 'fix' for her I have no control over the progress of the illness. I take some small comfort knowing that I can at least be her voice.
    Random acts of kindness & senseless acts of beauty

  14. #14
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    acting on advanced directive

    My dad on an assessment unit and rapid decline. He states in his advanced directive that if he becomes severely mentally disabled and totally dependent on others that he would like medical treatment stopped if it prolong his life needlessly.

    Asking for advice because I know he wouldn't want to be alive anymore.

    Can all medication be stopped and nature allowed to take it's course?

    He would like treatment to preserve dignity, make comfortable, relieve pain and oral food.

    I am reading this as meaning the anti psychotics, donepezil, memantine, vitamins, blood pressure etc etc could all be stopped.

    Taking legal advice, any one acted on an advanced directive? dad still has some quality of life but was adamant he wouldn't go into a nursing home etc

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