Do Not Resuscitate -advice needed

Discussion in 'End of life care' started by nellen, Sep 26, 2015.

  1. nellen

    nellen Registered User

    Mar 17, 2009
    96
    Derbyshire
    Hi has anyone any experience of drawing up a plan for end of life care for their relative? I don't know what to call it but I'm guessing that this is what is happening to my mum. my mum has had a rapid decline after a 3 month stay in hospital and a bad bout of shingles. She is now in a nursing home and sleeping a lot and not eating much. She is in bed most of the time now. I spoke to her gp who has a specialism in the elderly and dementia and she told me how shocked she was to see my mum since she's come out of hospita.

    We talked about having do not resuscitate on her notes as the hospital had asked me to agree to this and I wanted to know if it had been carried over on her medical notes (not!)
    I asked if I could have a clause about no intrusive medical intervention included on her notes and the doctor said she welcomed this approach of talking about it and has asked me to meet with her to draw a plan of what we as a family feel is in the best interests for my mum.
    it's quite a big responsibility and something of a minefield and I'm trying to do the best for my mum who can no longer tell me or anyone else what she wants and doesn't want
    Can anyone give advice and things to consider eg if she got pneumonia would I want her to be given antibiotics or if she's in pain what sort of treatment would she need etc so I can be prepared for our meeting. thanks in advance
     
  2. Pickles53

    Pickles53 Registered User

    Feb 25, 2014
    2,482
    Radcliffe on Trent
    It's one of the hardest things to do, but it is another way in which you are caring. I would think about whether you would want your mum taken to hospital and if so in what circumstances. After discussion with the home staff and her GP, I agreed that mum would not be taken to hospital except for something like a fracture. Antibiotics to be considered on a 'case by case' basis eg OK for minor infections like UTIs. Pain relief - we agree whatever was needed to ensure she was comfortable. GP prescribed 'just in case' pain relief to be kept at care home, though this was never actually used.

    My mum was hardly eating or drinking either in her last few weeks of life and was bed bound because of her frailty. Slept most of the time and pretty much helpless. Almost no communication or apparent response to visitors. We agreed she should be offered food and drink regularly but not pressured at all. Also no intravenous or other artificial (PEG) feeding.

    It helped me that long before she got ill my mum had made her views on end of life very clear; she did not want to be 'kept going' with no quality of life. So I was able to feel we were still following her wishes.
     
  3. canary

    canary Registered User

    Feb 25, 2014
    10,525
    Female
    South coast
    Hi nellen.
    I really feel for you. I was asked to do this for my mum after she got taken to hospital with a "funny turn" although it turned out to be a false alarm in mums case
    I know mum would not have wanted to have "heroic" efforts to prolong her life once she reached the end so I was happy to consider end of life care, although it came as a shock.

    I can only say what I had decided (and, as I said, at that stage I really thought it was the end), but everyone has to make up their own minds.

    I started off by agreeing to DNR. Its quite a brutal procedure, often results in broken ribs and is frequently not successful. If mums heart stopped beating that would be a good way to go IMO. The doctor then talked about artificial feeding - PEG and tube feeding which we agreed would not be appropriate, although I agreed to syringe feeding so long as she was still able to swallow. Where it came to antibiotics we agreed that oral anti-biotics is fine, but if they didnt work they would not give IV anti-biotics.

    When she went back to her CH there was further discussion and it was agreed that unless there was something like a broken bone, which should be treated, or planned hospital appointments (she has glaucoma and is also on the waiting list for cataract op) everything else should be managed in her CH and she would not be sent for investigations. Then, at the end, pain relief would be provided so that she is kept comfortable.

    Obviously, this can be flexible and just because I have signed this doesnt mean that it is set in stone. Ultimately, it is the doctors decision, but it helps them to know my wishes.

    I hope this is helpful.
     
  4. cragmaid

    cragmaid Registered User

    Oct 18, 2010
    7,963
    North East England
    For my late Mum we went with a DNAR and an ECHP...Do not attempt resuscitation due to patient frailty and likelyhood of injury if CPR attempted and an Emergency Care Health Plan which we decided between us would cover things such as fall injuries,pain relief, dressings and stitches at her CH and x rays if absolutely necessary but NO Invasive Treatment. If she needed antibiotics, it was fine if she could take oral but not IV as she would have had to become an NHS in patient. Her CH was residential not nursing. All other needs would be discussed on an As and When Basis. When she became End of Life, her normal medications were dropped because they ceased to help her.
     
  5. LYN T

    LYN T Registered User

    Aug 30, 2012
    6,968
    Brixham Devon
    My Husband was 64 when I was asked to consider a DNAR-I just couldn't do it as I was so shocked. Due to his age I thought to myself he had plenty of living to do-I just hadn't had time to consider his QUALITY of life-which even at that time was not particularly good. I was more prepared a year later and I remembered Pete saying to me 'just shoot me if I get Alzheimer's'-his Mum had early onset, his Dad had Dementia in his eighties. I was more prepared the second time and agreed. Like the other responders I didn't want Pete to go to Hospital for invasive treatment but I wanted AB's to be given for his back to back infections-but even then he had become resistant to a couple.

    The thing is we want our loved ones to go on forever, I didn't want Pete to die, but I didn't want him to live the way he was.That's the dilemma. We are pulled one way and then the next. It's a hard decision but from my point of view, and more importantly Pete's point of view, the correct decision was made. It's one of the few things I have no doubt about.

    Love

    Lyn T XX
     
  6. nellen

    nellen Registered User

    Mar 17, 2009
    96
    Derbyshire
    Thanks everyone who replied there's good suggestions here. it's not an easy thing to have to do and reading your replies it helps me to see that I'm not on my own and that I'm doing the right thing.
    I'm meeting the doctor this Friday and will take a list of things to think about. I'm hoping the doctor can give me some idea of where my mum is on the continuum between life and death too so I know what to expect if that's at all possible as I find this state of being in limbo very hard.
     
  7. Emily M

    Emily M Registered User

    Jan 20, 2015
    178
    Hello nellen

    Reading your original comment and the replies and knowing that you saw the doctor recently I hope you managed to come to a decision that you feel comfortable with. A little late, but for what it is worth I will relate my story.

    We have come across the same issue recently. Mum broke her hip and had to have an operation only to go back to the nursing home and get a sickness bug. It does concentrate the thoughts when the subject comes up. When the home phoned her husband saying that she was ill and asked about resuscitation he misunderstood and thought that she had been resuscitated. We arrived home one evening with an answerphone message from him saying this had happened, which it hadn't.

    We always felt that resuscitation was not the right thing to do and she wouldn't have wanted it herself. She always used to say, "Don't let me get like those people in nursing homes." All the family agree and though her husband seemed slow to accept this at first, I think it was all part of him coming to terms with the situation and he does agree with the rest of the family.

    People think it is like the TV programmes and that people get up and run around a few minutes later. It may be more successful with, for example, younger, fit, drowning victims that have not been submerged for long, however, it is a different case with the elderly and unfit. It is correct that resuscitation is a brutal process, particularly on a frail old lady who is very likely to suffer broken ribs causing more pain and distress for what quality of life? I have heard that resuscitation in frail people in their 80s is only about 3% successful.

    Our opinion is everything must be done to make Mum comfortable, alleviate pain and manage her care in the home rather than in hospital, but do not resuscitate. Poor Mum. I know it would be her wish.

    Wishing you all the best. EM
     

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