Advance Directive, when to insist it comes into play?

[Banjomansmate]

I went to see The Banjoman at his Care Home on Wednesday, having been told he ate a full English breakfast (with assistance) on Tuesday morning! He is restless and fidgety and trying to get out of his bed which now has bars for his safety. He objected to a member of staff feeding him cake but when it was just the two of us he managed to hold an ordinary glass to drink some ginger beer and a two handled cup to have a cup of tea. Then he ate a biscuit by himself. He has obviously turned the corner again for the second time this year, third time in twelve months.
Earlier the staff got him out of bed and sitting in a chair while they changed his bed and apparently he suddenly pushed up with his hands and was standing there rather wobbly so they daren’t leave him sitting out in a chair incase he tries that again and falls. A physiotherapist visited him but he couldn’t engage with her to learn how to try to walk.
Somehow I th8nk this saga might run and run!

 

[Trekker]

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).

Th first time my mother was very ill in hospital with delirium she too refused food and pulled and drips and the only thing that pulled her through was me there day and night pushing oral fluids. With everything that has happened since I now consider that a mistske. On the latest admission I left this side to nurses- 3 of them couldn’t stop her ripping it out with her teeth. She rallied enough to be sent home late Wednesday only yo become aggressively delusional within 24 hours, thr3atening to kill my father. By the time psych nurse visited she was watching Wimbledon, so after increasing her risperidone they left. I am 500 miles asy and maybe that is best as inevitable crisis may come that bit quicker, which sadly is what I now think needs to happen. My conclusion is that the powers to be will never acknowledge what the true situation is if continue to keep things just afloat by killing ourselves. Anxiety levels sky high and tearful or withdrawn much of time but trying to stay strong. I wish you strength from the bottom of my heart x

 

[Witzend]

My instructions in the Health and Welfare part of my LPA state that in the event of my being unable both to care for myself, and speak - with full mental capacity - for myself, then with the exception of fractures I categorically do not want any medical,or surgical interventions, to keep me alive when I might otherwise die. I ask for palliative care only.
My husband has identical instructions in his.

Personally I think it verging on cruelty to 'strive to keep alive' someone with anything like advanced dementia, whose dignity has been entirely stripped away and who is no longer enjoying life at all.

As for badgering and pestering this sort of person to eat and drink when they no longer want to, I have witnessed this in my mother's care home. It was done I'm sure with the best of intentions, but it was very distressing to see someone crying and whimpering and repeatedly turning their head away.

 

[Jaded'n'faded]

My instructions in the Health and Welfare part of my LPA state that in the event of my being unable both to care for myself, and speak - with full mental capacity - for myself, then with the exception of fractures I categorically do not want any medical,or surgical interventions, to keep me alive when I might otherwise die. I ask for palliative care only.
My husband has identical instructions in his.

Personally I think it verging on cruelty to 'strive to keep alive' someone with anything like advanced dementia, whose dignity has been entirely stripped away and who is no longer enjoying life at all.

As for badgering and pestering this sort of person to eat and drink when they no longer want to, I have witnessed this in my mother's care home. It was done I'm sure with the best of intentions, but it was very distressing to see someone crying and whimpering and repeatedly turning their head away.

I agree. I'm happy to let my mum decide if she wants to eat or not. She has little appetite and admits she gets no pleasure from food anymore. She's offered food and drink at regular intervals (in the CH) and that's fine with me. The staff do encourage her and will always offer her something else if she doesn't want her meal but ultimately it is her choice. I don't think people with dementia deliberately starve themselves (if prompted) and in some ways it's the last bit of 'control' they have.

Whenever I've been ill or really tired or just not hungry and I have been badgered - 'Come on, you must eat something, keep your strength up!' - I've just wanted to slap the person

 

[Banjomansmate]

The Banjoman seems to be eating at the Care Home although sometimes he needs help, he is good at misjudging distance and throwing his food on the floor or knocking anything over! However he cannot stand or get out of bed by himself and though not incontinent has to wear a pad because he cannot get to the toilet by himself. He has no idea how to work TV, DVD player or CD player and is basically just the way he did not want to be, reliant on other people for virtually everything. So much for having an Advance Directive!

 

[SarahC30]

This all sounds very hard Banjomansmate. In case there's anything useful to you, or others, I thought I'd share a link about ADs which will take you to lots of information, but haven't got enough posts to be allowed to put a link in! It's on the Compassion in Dying website - should be easy to find. Also, if you happen to be on Twitter then Celia Kitzinger is an expert on all this and very active there (Twitter handle is @KitzingerCelia).

 

[Lawson58]

I wonder if the problem with this sort of discussion is the question of intervention, how you define it and then how you apply it.

Some people might consider hydration an intervention but others might just see it as part of keeping a person comfortable. I would think it would be a difficult case to make that offering food and drink is a medical or surgical intervention. And the same could be said of antibiotics, flu vaccines etc. When I completed my ACD, such things didn't rate a mention.

I believe that too many times heroic efforts are made pointlessly to keep someone living but I also believe that there is a time to let go for all of us. And I am pleased that my children will have a large degree of control over that.

I am also pleased that our local health authority is a prime mover in helping people arrange these documents, and that this is part of the ethos of our hospital.

 

[Trekker]

Advance directives can cover refusal to have assisted nutrition and hydration (what used to be called artificial n & h) but cannot include simple eating and drinking. It is part of the duty of care of those providing the care to offer food and drinks. In other words, while we can make a decision, while we have capacity, to refuse iv fluids, feeding directly into the stomach, eg via Peg, we can’t decide that our future, thirsty hungry self is refused food.

 

[Witzend]

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.

It was a UTI - the umpteenth - that finally brought the end for an aunt of mine - late 80s with pretty bad dementia. She had begun to refuse food, drink and medication, and although there was AFAIK no advance care directive, we were given the choice of sending her to hospital for drips etc., or letting nature take its course.
Especially given that hospital,is often a terrible place for anyone with dementia, and that given her history of UTIs it was almost certainly going to happen again fairly soon, it was agreed with the GP that it would be kinder to give palliative care only.
I did first ask him what he'd do if it were his much-loved relative.
I did find the decision difficult at the time, but never regretted it later - I'm quite sure it's what she'd have wanted.
The care home staff kept her comfortable, while continuing to offer food and drink - I was sitting with her a lot - but she continued to turn her head away and finally drifted away quite peacefully after about a week.

IMO, in the circumstances, it would have been verging on cruelty to keep her going just for the sake of it, and just because it was possible to do so.

 

[Lawson58]

Absolutely. When infections do not respond to treatment, then it becomes a chronic health problem which can have a huge impact on kidney function and will inevitably undermine the possibility of continuing to give a reasonable quality of life.

I cannot imagine how awful your aunt must have felt trying to battle such a debilitating condition and I am glad that she was able to come to the end of her life so peacefully.

 

[Banjomansmate]

Another problem yesterday when The Banjoman had another fall while alone in his room, managing to fall sideways thus totally missing the pressure mat on the floor in front of him. He banged his head on the bed frame and was found with a cut bleeding over his eye. The senior carer on duty called an ambulance because she thought the cut might need stitches and because he had banged his head he ought to be checked out. She phoned me to inform me and I agreed with her decision. Then she phoned again when the ambulance crew arrived because they queried the Advance Directive. I said if he might need stitches then he had to go to hospital but to make sure a copy of the AD went with him and that everybody knew about it!
She phoned back five hours later to say that he was being discharged having refused to cooperate with having a head scan but they believe there is nothing seriously wrong. I will be phoning later this morning to see how he is.
Decisions, decisions, every time things seem to quieten down I breathe a sigh of relief only for a new problem to rear its head. Apparently when the physiotherapist went to see him last week to try to encourage him up onto his feet and try walking he refused all help, especially the use of a walking frame. I suspect he doesn’t have the ability to coordinate his movements to use one now anyway.