Advance Directive, when to insist it comes into play?

Discussion in 'End of life care' started by Banjomansmate, Jul 4, 2019.

  1. Banjomansmate

    Banjomansmate Registered User

    Jan 13, 2019
    1,094
    Female
    Dorset
    #1 Banjomansmate, Jul 4, 2019
    Last edited: Jul 4, 2019
    The Banjoman is currently in hospital “recovering” from the operation to pin the break in his femur after he fell in his room in the Care Home a fortnight ago. As expected, his physical and mental abilities have deteriorated, to such an extent that he struggles with eating and drinking, needing assistance with both, which he persistently resists. Because he is consuming so little the staff have tried to fix him up with a cannula for a saline drip but he continually pulls it out. They want to do blood tests but cannot get near him because he fights them off quite violently. He also objects to any personal and medical care.
    Visitors have managed to feed him a few times with ice cream & jelly or some soft foods and he has accepted some form of liquid food syringed into his mouth by a nurse (possibly because he had visitors and decided not to make a fuss in front of them?) but most of the time he just wants to be left alone.
    His cognition is such that the physiotherapist has not been able to get him out of bed because, as the nurse told me, “He cannot engage with them”. I know that he cannot understand the simplest of instructions so I think he is going to be bed ridden for the rest of his life.
    His speech is indistinct, before hospitalisation he was perfectly understandable though not always talking sense.
    I have told the ward that an Advance Directive is in their possession and personally I am beginning to feel that if he is refusing sustenance most of the time, and there is very little chance of him improving, that maybe they should be taking the AD into consideration because the only thing happening is that his life is being extended while he is suffering mentally and physically for no good reason and, I believe, against his wishes.
    Has anybody else dealt with this situation please? I think the problem is how the medical staff interpret the conditions of the AD, especially if he accepts some food from visiting family but fights off medical staff.
    I should say that I have LPA for H & W (his original choice) along with family members who I insisted should be on there for just this type of situation as I felt they should be the ones to decide ( and I wouldn’t get a load of come back if they didn’t agree with me).
     
  2. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,935
    Yorkshire
    hi @Banjomansmate
    I don't have any experience of such a situation, but want to send my best wishes to you and the Banjoman at this difficult time
     
  3. northumbrian_k

    northumbrian_k Registered User

    Mar 2, 2017
    757
    Male
    Newcastle
    I can't help either but wish you the very best in what is an awful situation. Others may be able to help with experience of how people have or have not rallied. But I know that your question is about the point of hoping for some temporary improvement to a situation that will never really improve, except perhaps with final release. Wishing you the strength you will need whatever happens.
     
  4. Palerider

    Palerider Registered User

    Aug 9, 2015
    538
    Male
    North West
    Sorry to hear your news - a difficult time

    It depends what is contained in the AD, but the hospital need to be made aware of it and apply any of the AD that applies. Depending on what is stipulated in the AD it should be stopped immediately i.e. antibiotics. AD's take presedence and must be followed. The hopsital may run it by their legal team first, but this is to check that the AD is legally valid before withdrawal of treatment/interventions. Its usually straight forward.

    Make sure you let them know about it or if need be prompt them, things often don't get communicated across teams. Take care
     
  5. canary

    canary Registered User

    Feb 25, 2014
    10,284
    Female
    South coast
    I had an almost identical scenatio with my mum.

    She fell and broke her femur and had it pinned under general anaesthesia and following this she stopped eating and drinking. She had already been referred back to her care home before the carers discovered this. She was found to have high calcium levels, so she was sent back to the hospital for them to check her. While she was in the hospital she was put on a drip to rehydrate her, but she still wouldnt eat or drink anything. I was stood right next to the consultant when he did his round and mum was in terrific hostess mode and swore she was eating and drinking, passed urine and opened her bowels - all untrue. I was severely shushed when I tried to correct this. Mum was discharged back to her care home so I asked to speak to her GP. I said that I wasnt happy that mum had gone to the hospital and that all they did was hydrate her and I asked him if he felt that further intervention was appropriate considering her dementia. The GP agreed with me, she was placed on palliative care and just over a fortnight later she passed away.

    I dont know if any of this helps you and Banjoman might bounce back, but I do at least understand where you are coming from. Have you had the chance to speak to the consultant - they are often more understanding about such things than the junior staff.
     
  6. Banjomansmate

    Banjomansmate Registered User

    Jan 13, 2019
    1,094
    Female
    Dorset
    Thank you for your replies and kind thoughts.
    I spoke with a Dr. on the ward on Monday, mentioned the DNAR and the AD and he said they were aware of the DNAR and changed the subject so I wasn’t sure if he picked up on the AD.
    I spoke with the other LPAs by phone that evening , one wanted to discuss it with family another was immediately bloody minded, saying that he was eating, it was just dreadful hospital food that was putting him off. After further antagonistic comments we stopped speaking to each other. I was told today that she has come round to my way of thinking!
    I have also spoken with his Care Home Manager who has spoken with the GP and they seem to think that hydration is acceptable but any other type of feeding is not if he refuses it. Of course his visitors are just following the hospital staff requests to encourage him to eat and drink, which is just prolonging the inevitable as far as I can see.
    I think we are in a grey area here, all the while he will eat something occasionally.
    Unfortunately I cannot get to the hospital until next week as I had a stomach upset yesterday and they don’t want anybody going in with anything like that for 48 hours after symptoms are finished and I have other commitments over the weekend. Even then I doubt it will be easy to speak with the consultant, you have to be there on the ward as they are doing their rounds and usually that isn’t during visiting hours.

    Thank you again for your input.
    C.
     
  7. Lawson58

    Lawson58 Registered User

    I have done an Advanced care directive a few months ago and I don't know how different it is to doing it in the UK.

    But here goes. In my Advanced care directive, I named two decision makers, my children with their agreement and consent. They are the ones who can make the important decisions. But I also put in place certain conditions and parameters as to what might was permissible and when they could withhold medications, treatment etc. and provided they abide by my instructions the doctors cannot over ride them. The hospital, my GP and my children all hold copies which are signed and witnessed and have the full weight of the law to support it.

    I think you need to read the Advanced Care for yourself and see what is required.
     
  8. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,401
    Kent
    My Advance Directive says I do not want to be kept alive artificially if there is no chance of physical and mental recovery. This includes being kept hydrated on a saline drip.

    My son and GP have copies of this and I hope they would be listened to when the time comes.
     
  9. Jaded'n'faded

    Jaded'n'faded Registered User

    Jan 23, 2019
    427
    Female
    High Peak
    This is so difficult. My mother has a Living Will which preceded the current Advance Directive (but still counts!) Hers states various scenarios where she would wish not to receive further treatment. These include if she were to lose mental capacity and if she were to be so physically/mentally disabled that she would need care/be dependent on others for the rest of her life. Both these conditions have been met, unfortunately.

    Just over a year ago she fell (in the CH) and broke her hip. So - what to do? I didn't feel I could wave the LW in the faces of the hospital doctors and insist they didn't treat her, just to give pain relief only. So her hip got fixed and she is now able to walk with a frame. There isn't much else wrong with her, i.e. she isn't dying, though her dementia is late stage 6.

    Each time something happens - a UTI for example - I wonder whether I should insist treatment is withheld. What would happen if I did? Would the UTI gradually become a worse infection if untreated? Would she then die a 'natural' death? I just don't know. Is it fair to withhold AB treatment if she is suffering discomfort? (Actually she is never aware when she has a UTI - I can spot it a mile off! When asked she says she has no pain on urination.)

    The whole thing is a flippin' minefield! At this point I am taking a pragmatic approach. When mum has a UTI her confusion goes through the roof and she gets aggressive, causes problems at night, etc. She is settled in the CH and I'm happy with her care so I don't want her moved because they can't cope. (Unlikely but you never know.) So she gets ABs for UTIs. If she gets any other infections or illnesses, or progresses to stage 7, I really don't know what I will do.
     
  10. Banjomansmate

    Banjomansmate Registered User

    Jan 13, 2019
    1,094
    Female
    Dorset
    Exactly J’n’f, I felt the Dr’s had to take the risk of the op. when the anaesthetist phoned me, I could hardly leave him lying there with a broken leg, although the way things have turned out I might just as well have done so as there seems to be little to no chance of him getting back onto his feet and his dementia has worsened considerably. I believe they are now using pain patches for him.
    It sounds like they both have a standard version of the AD which sounds good but seems open to interpretation. I feel the medics should be making the decisions/ discussing it with family first, not me having to suggest to them that they have a copy of the AD and shouldn’t they be using it?
     
  11. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,490
    My dad has alzheimers and cancer. He is on palliative care only which means that he is not having any treatment to prolong his life but he will have treatment that will alleviate any symptoms and make him comfortable. If he has an infection then he will have antibiotics and if he needed a transfusion then he would have one. Anything required to keep him comfortable is fine with me. His consultant made the decision not to treat his cancer and I think she made the right decision.

    He has a DNAR in place at home and we are to avoid hospital admissions but like you, if I were to find dad on the floor with anything broken or even unable to get up due to pneumonia again then I could not just leave him there and hospital it would be.

    Dad is still quiet well at the moment but I understand what you are saying about eating or not. I feel that if food is accepted then it should be given it but if it is refused then it should be offered but not forced.

    A very difficult time for you @Banjomansmate and I feel for you.
     
  12. Palerider

    Palerider Registered User

    Aug 9, 2015
    538
    Male
    North West

    The AD takes legal presedence, they can't ignore it so long as it is valid, if they don't they can be taken to court,. It depends also what is contained in the AD itself as to whether anything applies currently. You do need to speak to someone senior about it, often juniors will have little experience of AD's. I would suggest you request a meeting with the consultant when you are next available and when they are on the ward and raise it. Sorry I'm tired just in from work -hope that makes sense
     
  13. Banjomansmate

    Banjomansmate Registered User

    Jan 13, 2019
    1,094
    Female
    Dorset
    Visitors have told me he is to be returned to his Care Home on Monday, after they assessed him yesterday.

    Thank you for your replies, the saga will continue........
     
  14. Jaded'n'faded

    Jaded'n'faded Registered User

    Jan 23, 2019
    427
    Female
    High Peak
    Because I do not trust doctors and medics to have accessed mum's records, I actually carry a copy of mum's Living Will in my handbag! I've already had a run-in with a well-meaning but ignorant paramedic (it said 'trainee' on his back) who insisted he didn't have to look at it and had to stick to his own protocols. That was when mum had a fall a month after her hip op. and he insisted she must go to hospital. After that I had a long discussion with mum's GP and he agreed it was appropriate to put 'no hospital' on her care notes.

    The trouble is, the LW is a legal document. It represents mum's stated wishes and MUST be followed. But in reality they ask me. That makes me uneasy!

    I have this absolute dread of being in a crisis situation, me insisting the Living Will is adhered to and some doctor saying, 'Well, let's just ask your mother what she thinks, shall we?' Aaaaaarrrrgh! What would I do? I hate it that medics think I am an evil daughter wanting to bump off my mum asap. She wrote the Living Will, not me!

    I will never forget the nurse in the hospital who heard me discussing the LW with the paramedic. When I explained the situation to her she said, 'Awww, but she seems so nice!' Well, she isn't actually, but that's completely irrelevant! What was she implying? That 'no treatment' was OK if mum was a horrible old woman but should be ignored if mum was nice??? For heaven's sake!
     
  15. canary

    canary Registered User

    Feb 25, 2014
    10,284
    Female
    South coast
    Once he is back go and talk to the care home GP
     
  16. Palerider

    Palerider Registered User

    Aug 9, 2015
    538
    Male
    North West

    Mmm it must be frustrating -I know I am just reading this. I wonder sometimes if it is complete ignorance, a lack of knowledge perhaps on what an LW or AD is and what it means. Part of the problem with so many protocols as you described with the paramedic scenario is that they are about managing risk and meeting external targets, rather than thinking about the patients wishes. There was a time when the patient was the most important person, placed at the centre of everything -but that was a long time ago.

    I don't understand how professionals can't not have awareness of what an LW/AD is and that it should be followed, but then things have changed considerably in the last 10 years, and I am an older generation trained and taught in a different way to the now. Its a sad day when people can't even have their wishes upheld in what is ultimately a disease that leaves someone unable to make those wishes known as they become increasingly frail, unwell and endure loss of capacity.
     
  17. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,401
    Kent
    When my husband was returned to his care home it was for palliative care. The care home was unable to offer intravenous hydration and could only offer fluid in a syringe.

    Perhaps this is what will happen now.
     
  18. Bree

    Bree Registered User

    Oct 16, 2013
    241
    I have just found this thread and can't believe how much this applies to us. MOH fractured his femur, had it pinned, then contracted three different infections, one being ESBL. He is at present in a community hospital but has weakened significantly in recent days, refusing food, only drinking when he's being pushed, and then only a little.

    Today I could hardly hear what he was saying, which wasn't much, he was up in a chair slumped to one side looking so ill. I asked that they don't get him up again, as it's too much for him. Today I am trying to arrange 'hospital at home' as I think now we are on a downward spiral, and he should be in his own home. He is unable to stand at all now, so we are not looking for physio, just TLC.

    Why the refusal to eat or drink ? Is it the last action of making their own decisions, controlling their own end of life care ? Just a thought. It's a horrible road to travel, it's good to know I'm not alone.
     
  19. Lawson58

    Lawson58 Registered User

    I think that doctors would not consider a UTI as a potentially life threatening illness. It usually responds to antibiotics and fluids. As I see it, an Advanced care directive is about illnesses that require MAJOR intervention and things like massive strokes, renal failure, severe heart attack and aggressive cancers. Giving someone radiation or chemotherapy, CPR is different to giving antibiotics for a UTI. In my directive , my children are my decision makers but any decision must be made in honest consultation with the doctors.

    My kids know what I would find acceptable and I know that they will find it hard to make those final steps without affirmation from medicos.
     

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