GP seems to be pushing dad to give the response he wants?!

[looviloo]

Aaargh!!!

I'm SO frustrated at the moment with dad's GP.

This is a follow-on from my thread about anticoagulants & dementia:
https://forum.alzheimers.org.uk/showthread.php?88937-Anticoagulants-and-dementia

Here's a quick summary;

Dad moved to a care home 2 years ago, following a fall/hospitalisation/delusions and was diagnosed with vascular dementia. He's now at the stage where his speech is largely unintelligible, on a mashed diet, gets angry/moody, very short attention span, has obsessions/paranoia, and (importantly) gets 'yes' confused with 'no' and often can't make a decision or answer a question.

His new GP has raised the topic of anticoagulants again (apixiban) and wants dad to go on them (alongside numerous other heart related drugs). He asked dad about this, in the presence of the care home manager, and dad apparently waved his hands and was dismissive about it. So the GP called me into the surgery and asked me. Having read the pros and cons I said I'd be reluctant to go ahead with the new drug, but I'd attempt to ask dad (again!). Which I did. Eventually dad understood and more or less said 'no'.

Today I found out that the GP has once more asked dad about it, in my absence but with the CH manager there... (not the manager's fault, it was sprung on her during one of the GP's rounds). Apparently dad got confused, answered yes to everything, and only said 'no' once the manager calmly and quietly explained what the GP was asking.

Now the GP has decided he's going to ask dad about it again in 2 months time!

What is going on? Dad has dementia, and I've been acting as POA for 2 years... but it feels like the GP is a) ignoring me, and b) has no understanding of dad's illness. All he's doing is making dad agitated, revisiting the same question over and over. Plus the GP told dad that he's spoken to me about it, which means I've had angry phonecalls from dad, because (obviously) it's all my fault!

Don't even get me started about the GP asking dad about DNAR every 6 months. Every 6 months!!!

Maybe I'm being unreasonable (and I do understand that safe-guarding works both ways) but I'm not sure how to handle this any more :-(

Sorry for the long post, but I'd appreciate any suggestions.

 

[AlsoConfused]

The relationship's obviously not working.

As next of kin and PoA holder could you ask for a formal appointment with the GP to discuss your Dad's care, the GP's thinking about how best to treat him and also to advise on the approaches to be taken to minimise any distress and agitation in your Dad? Prepare for it by listing in writing (copy to the GP) what approaches your Dad responds to; what he doesn't; and what makes life really difficult for relatives and the home.

If the GP is a decent one - just perhaps lacking insight into the best ways of helping your Dad - then hopefully this approach will stop the relationship getting even more difficult.

If the GP is unresponsive then I think you have to ask the home how much leeway there is over your Dad seeing a different GP. Some homes have several GP practices visiting.

 

[looviloo]

The relationship's obviously not working.

As next of kin and PoA holder could you ask for a formal appointment with the GP to discuss your Dad's care, the GP's thinking about how best to treat him and also to advise on the approaches to be taken to minimise any distress and agitation in your Dad? Prepare for it by listing in writing (copy to the GP) what approaches your Dad responds to; what he doesn't; and what makes life really difficult for relatives and the home.

If the GP is a decent one - just perhaps lacking insight into the best ways of helping your Dad - then hopefully this approach will stop the relationship getting even more difficult.

If the GP is unresponsive then I think you have to ask the home how much leeway there is over your Dad seeing a different GP. Some homes have several GP practices visiting.

Thank you... your suggestions are all good ones .

I did have a long appointment with the GP about a month ago to discuss dad's care, but I probably need another consultation to go through these issues. Even the CH manager was annoyed/worried about the way the GP approached dad on his last visit.

It may be possible to change GP, although it could be tricky because it's a small rural care home linked to a small GP surgery. But it's definitely something to keep in mind.

 

[nitram]

Agreed you need to have a serious talk with the GP.

From your other thread you were concerned that the tablet had to be swallowed whole and not chewed.

The SPC has details of how to administer the medication to patients who cannot swallow.

Method of administration
Oral use
Eliquis should be swallowed with water, with or without food.
For patients who are unable to swallow whole tablets, Eliquis tablets may be crushed and suspended in water, or 5% dextrose in water (D5W), or apple juice or mixed with apple puree and immediately administered orally (see section 5.2). Alternatively, Eliquis tablets may be crushed and suspended in 60 mL of water or D5W and immediately delivered through a nasogastric tube (see section 5.2).
Crushed Eliquis tablets are stable in water, D5W, apple juice, and apple puree for up to 4 hours.
https://www.medicines.org.uk/emc/medicine/24988

 

[looviloo]

Thank nitram, for your comment and the helpful link. I've calmed down now . Not sure why I'm in such a tizz about it. Maybe because I feel I know dad best and always do everything with dad's best interests, but feel like the GP is in some way questioning that? I thought I'd left behind any conflicts and misunderstandings with authorities, and thought/hoped I'd be involved & informed about decisions from now on.

Anyway, I've bookmarked your link and plan to visit dad's GP again. Poor dad. He'd hate to think this was all going on. It's ironic that he's always hated being the centre of attention :-/.

 

[looviloo]

Another thought - last time I saw dad's GP, he mentioned that he felt dad has 'capacity'. I think this is what's bothering me most. Dad has never had a formal capacity test, never needed to although we've come close several times. It's obvious to anyone who knows him that dad's decision making is impaired... but with a question mark over capacity then I guess dad is free to make decisions, even unwise ones.

Sorry, just thinking out loud...

 

[Relm]

I had a situation which is similar to yours. My Mum has carers visit her at home but prompt her with leading questions into choices she would not normally have made.

For example, once were were told she wanted fish fingers and the visitor were preparing some for her. My Mum has never eaten a fish finger in her life because she hates the very idea of them.

Similarly, we were told she wanted a cup of tea. She hates tea. Nevertheless the carer went and made the cup of tea. Of course she didn't drink it.

With the right (by which I mean wrong) sort of prompt and the right (by which I again mean wrong) interpretation of an ambiguous response - you can come to almost any conclusion even if it is obviously inappropriate. I often deal with this by being present and offering my own prompts which lead to the alleged choices being contradicted. It shouldn't be necessary.

Your case is more serious than choice of food. There are decision checklists for more important decisions on behalf of people who lack capacity but it involves seeking the views of several parties and, if filled completely, would be quite a lot of admin.

 

[Lawson58]

Aaargh!!!

I'm SO frustrated at the moment with dad's GP.

This is a follow-on from my thread about anticoagulants & dementia:
https://forum.alzheimers.org.uk/showthread.php?88937-Anticoagulants-and-dementia

Here's a quick summary;

Dad moved to a care home 2 years ago, following a fall/hospitalisation/delusions and was diagnosed with vascular dementia. He's now at the stage where his speech is largely unintelligible, on a mashed diet, gets angry/moody, very short attention span, has obsessions/paranoia, and (importantly) gets 'yes' confused with 'no' and often can't make a decision or answer a question.

His new GP has raised the topic of anticoagulants again (apixiban) and wants dad to go on them (alongside numerous other heart related drugs). He asked dad about this, in the presence of the care home manager, and dad apparently waved his hands and was dismissive about it. So the GP called me into the surgery and asked me. Having read the pros and cons I said I'd be reluctant to go ahead with the new drug, but I'd attempt to ask dad (again!). Which I did. Eventually dad understood and more or less said 'no'.

Today I found out that the GP has once more asked dad about it, in my absence but with the CH manager there... (not the manager's fault, it was sprung on her during one of the GP's rounds). Apparently dad got confused, answered yes to everything, and only said 'no' once the manager calmly and quietly explained what the GP was asking.

Now the GP has decided he's going to ask dad about it again in 2 months time!

What is going on? Dad has dementia, and I've been acting as POA for 2 years... but it feels like the GP is a) ignoring me, and b) has no understanding of dad's illness. All he's doing is making dad agitated, revisiting the same question over and over. Plus the GP told dad that he's spoken to me about it, which means I've had angry phonecalls from dad, because (obviously) it's all my fault!

Don't even get me started about the GP asking dad about DNAR every 6 months. Every 6 months!!!

Maybe I'm being unreasonable (and I do understand that safe-guarding works both ways) but I'm not sure how to handle this any more :-(

Sorry for the long post, but I'd appreciate any suggestions.

Your GP sounds to me as if he is super enthusiastic and as if he is trying to do the best thing for your dad but perhaps not going about it the right way.

OH has had a valve repair (difficult and almost fatal)' has atrial fibrillation, has had a cardiac arrest, has an implanted defibrillator and suffers with heart failure. He has been on warfarin for many years and aspirin for almost four years and was diagnosed with AD three years ago.

During these years, he has had several surgeries for hernias and prostate and has had an internal bleed. He has to have his INR checked regularly which is no problem but the hassles start when he has to have surgery as he had to come off his warfarin and has to start daily injections of a different type of anticoagulant, one that can be controlled on a 24 hour basis. Following his surgery, he has to go through a follow up program so that he can get back on to the warfarin again.

The internal bleed was an absolute nightmare and he was in hospital for days while they tried to get him sorted out whilst managing his heart condition at the same time. It is not feasible for OH to switch but I think I can understand that the GP is trying to get your dad into a better place should he require some unexpected or emergency treatment.

I find this issue about capacity very questionable. It is often said on this site that so long as someone 'understands at the time of signing' eg. for a POA, then it is valid but that surely raises moral and ethical values. OH can appear to be quite with it, plays bridge but I know I could manipulate any discussion so that he sounded as if he had capacity but I know full well that he doesn't. If you know that your dad doesn't really and truly have capacity then the GP shouldn't be asking him to make these decisions. You obviously need to have a chat with the GP about this.

 

[looviloo]

Relm, thank you... you've pretty much expressed what I'm thinking. Dad often changes his mind, so how do we know what his 'real' decision is? So hard, isn't it? I've never heard of a decision checklist and will look into that, although it does sound a bit arduous!

Lawson58, I'm sorry to hear about the problems your OH has had, it's such a worry. Dad isn't on an anticoagulant at the moment. I sometimes wonder why it hasn't been suggested before now (at this relatively late stage). The biggest pro as I see it, of dad starting apixiban, is the lower risk of a major stroke. The cons include a potential bleed (would he recognise the pain?), and any fall would lead to a trip to hospital as a precaution (some distance away).

As for for the capacity issue, I also find it confusing. The GP mentioned he thought dad has capacity to make this decision, yet was seeking my approval to go ahead and prescribe it? How does that work? Dad, when asked, is at best ambivalent about taking the new drug... so is dad's ambivalence a 'no' or a 'yes'? I take it as a 'no'. And presumably the GP does too, or he'd go ahead and prescribe it...

I think you're right that the GP is maybe just over enthusiastic, and in the end we're all trying to do what's best. I will talk to the GP and give him more background about dad and his temperament etc. Hopefully we can start to work together a little better .

 

[merky587]

We found it diifuclt to get the correct care for our friend. You have to be firm with medical staff tpo get anywhere.

 

[Lawson58]

Hi again,

When OH had his internal bleed, he didn't experience any pain or discomfort at all. They never discovered where the bleed was coming from even though he had a colonoscopy and an endoscopy. They thought it was coming from the area where they didn't reach and decided against further investigation as the bleed had stopped. It is two and a half years since he had the bleed and experiences the usual bleeding from a scratch and bruises easily but has not had a repeat episode.

It would seem to me that if it the medication was going to reduce the risk of a major stroke, it is worth considering and perhaps it would be helpful to express your concerns to the GP. I think if you explain the issues you are having that it can only help your dad.

I hope you get things sorted out soon.

 

[Nut]

In my humble opinion (and experience) assessing decision specific capacity is dastardly difficult. The Mental Capacity Act Code of Practice (can be found online) talks about giving people every chance to make their own decision and helping someone make a decision when at their 'best' if they have fluctuating capacity. Maybe this is what the GP is aiming for, but in my experience they have poor knowledge and understanding of the MCA, capacity issues and best interest decision making.
Assessing capacity should involve talking to you, the person who knows him best as well as your Dad.
And if you have registered health and welfare LPA you are the 'decision maker' once your Dad loses capacity to make his own decision on this issue.
For best interest decision making 'checklist' see p64 of the MCA Code of Practice. It is quite straightforward and designed to put a full understanding of the person (with their own values, beliefs, wishes and feelings respected as far as possible) at the heart of the decision. People who know the person well must be fully consulted.

Hope this helps. My Mum's GP when she was living at home was diabolical, but sh adored him. With a diagnosis of dementia on record no-one at the practice spotted a two month gap in her re-ordering of levothyroxine. I know systems are not set up like that, but Mum ended up in a right mess. I took over remote ordering of prescriptions and the GP surgery refused to tell me what they were. Her local chemist however knew instantly who she was and what she needed and told me fully. Just ridiculous. Now Mum is in a care home I have her new GP phoning up and consulting me about possible health problems and treatments. A very very welcome change. Having said that though she really wasn't complying with the MCA either as she had not assessed Mum's capacity over a DNAR decision. I didn't challenge though as overall she was correct -Mumjust would not understand the ins and outs of it all.




Sent from my iPad using Talking Point

 

[looviloo]

You have to be firm with medical staff tpo get anywhere.

Sorry to hear about your friend . Unfortunately I've found it necessary to be firm sometimes too, which doesn't come naturally to me!

When OH had his internal bleed, he didn't experience any pain or discomfort at all.

Thanks Lawson58 - what a horrible thing to go through, I hope this never repeats itself. It's useful to know that there isn't always any pain... and means that any kind of fall would need investigation/observation, to make sure there isn't bleeding. Dad bruises easily already, when I think about it. He constantly has bruises on the backs of his hands and has been like this for years. They heal up fairly quickly but can look terrible at the time.

In my humble opinion (and experience) assessing decision specific capacity is dastardly difficult.

Thank you, Nut! The whole capacity issue does seem like a minefield to me, and although I understand the need for all of the safeguarding and regulations, sometimes it just seems to need a little common sense? Or is that just me?!

I'll investigate the checklist you've pointed me to, and I've have written down a few bullet points about dad's current state of mind, personality etc., so hopefully the GP and myself can find a middle road. I also plan to mention the DNAR issue to the GP. I'm thinking that dad may need formal capacity assessments with regards to these repeated medical questions. I'm glad you have a good relationship with your mum's latest GP... it's easy to forgive the occasional transgression if everything else is mostly ok. Sadly, dad also worshipped his previous GP, who it turned out was very little help when we reached crisis point. I really don't want to go through all that again.

 

[looviloo]

Update

I spoke to dad's GP this week, and took him a summary of dad's behaviour (from our perspective), recent medical history etc which he seemed grateful for.

The upshot is:
- the GP didn't realise dad had a heart valve replacement, which rules out the use of the anticoagulants (NOACs) he wanted dad to take. The GP didn't say this during my consultation but spoke to the care home manager later, who then told me!
- So warfarin is the only option. The care home manager is happier with this, she has more experience of it. She thinks dad has some capacity on the issue so will attempt to ask dad for his thoughts at a suitable moment over the next few days. She knows dad well so I trust her whatever the outcome.
- on the other hand, the GP said (to me) that since his last meeting with dad, he didn't feel dad has capacity to make this particular decision and that it comes down to 'best interest'. It's so confusing! If dad says 'no' to the care manager (as he has indicated to me already), what then?!

So, I'm sort of relieved, and happier to go ahead with warfarin if that's what it comes to. The falls risk is still there, but the care home is about as safe as anywhere can be.

But I'm annoyed that it's taken over a year to get to this point, going round in circles, just because neither of the two GPs who have wanted dad to take the NOAC had actually read his notes and therefore realised that NOACs aren't suitable for him!

 

[Walking]

My wife does not answer the question that is asked, but the thought that the question causes in her head. So she will often answer 'yes' when I know she means 'no' to the way I worded the question, as further investigation makes clear.

 

[LadyA]

My wife does not answer the question that is asked, but the thought that the question causes in her head. So she will often answer 'yes' when I know she means 'no' to the way I worded the question, as further investigation makes clear.

Hello Walking, and welcome to Talking point.

It's so hard sometimes, when dementia makes clear communication difficult. It can be very frustrating, particularly I'm sure for the person with dementia, when they know what they want to say!

Have a browse around the Forum, and join in any discussions you like, and if you would like, start your own thread, where others can better respond, and it's easier to keep track. It's also a good way of looking back over how things have progressed over time.
To start your own discussion:

1. Find a forum that is relevant for you [e.g. I care for a person with dementia ]

2. At the top, you'll see a button called 'Post New Thread' - click or tap on this.

3. Add a discussion title and below, add your message. Then click or tap the [Submit thread] OR [Create Thread] button. But before you do, don't forget to check the "subscritions" box, so you will be notified of replies.