Medication refusal

[FiniteSagacity]

We’ve been asked to agree to medication being given by care home to our relative in food and drink due to behaviour changes that include refusal of important medication like diabetes and blood pressure.

Relative is declining without medication, we have seen the refusal first hand and so we agree this is worth trying.

Any tips on managing this? I know they’re having to prioritise the most important medication.

First step would be to assess what of this medication is really really esssential:
If your relative is eating less and losing weight then generally their blood pressure will naturally reduce
Similarly blood sugars naturally reduce when you are eating less and losing weight.

There are people who are exceptions to this, but not many.

I'd also ask your relative's GP to think about what medications are actively making your relative feel better day to day - anything not in this category can be binned. Medications that are to prevent some sort of complication in a few years are no longer important - it's about comfort now.

Next is can anything be given by a different route - for example pain killers as patches instead of tablets.

Sadly your relative is likely declining because of the dementia, not because of missing blood pressure or diabetes medications. Even given covertly, most meds do taste disgusting and are hard to hide and so patients can still spit them out.

Am so sorry you and your relative are facing this.

The care home have to ask this because they can't make the decision not to give your relative their prescribed medication. But you can. As the PP says, speak to GP about anything that is not aimed at making them more comfortable and happier in the here-and-now. Or just decide for yourself whether its worth carrying on with medications that cause distress (because GPs can also be reluctant to stop "doing things by the book" sometimes.)

Thank you @AnnaMagnani and @AudiobookListener - it’s helpful to frame it as prioritising comfort, lightening the medication load, and focusing on what is best for right now.

I was worried that tasting medication in food and drink will put them off eating and damage trust with the staff but I’m not sure how much sense of taste is left - and it’s hard to take in sweet treats if they’re refusing insulin but maybe quality and enjoyment of life should be prioritised.

Either the GP or the pharmacist may need a nudge with helping the care home with the switch. The home say they are waiting for details of the medication delivery advice - they have had some but not all - perhaps it needs to be clearer that they don’t need to give all medication any more.

I have provided the LPA to GP and the home so I will check no one needs any further permission from us to go ahead.

Has your relative been deemed to no longer have capacity to make decisions around their health? If not, then the care home is on very dodgy ground giving them any meds against their wishes.

@FiniteSagacity it is great that you have LPOA. Have you been able to speak to the GP yourself? As posted above healthcare professionals can be really worried about doing something that will end up with angry relatives - if you can be very clear with the GP that your goal is prioritising comfort it will help them a lot, rather than messages always going through different care home staff.

It is hard to get anyone to write that down - but I take relative to various appointments and he can no longer answer questions coherently or give consent to treatment. All the attorneys are in agreement.

@AnnaMagnani thank you for that insight - I will contact the GP directly to see what they might need. I have previously had direct contact although there is no ‘moment’ where anyone has confirmed I now act unanimously - we’ve been taking it decision by decision and involving him but he cannot process things now.

I do wonder if the refusal is partly because he wants things to end on his terms.

For Health and Welfare, the person needs to be deemed not to have capacity by a medical professional.
https://www.gov.uk/make-decisions-for-someone/assessing-mental-capacity

I appreciate the caution @Soontobe60 but as many on this board find, a capacity/no capacity ‘moment’ where the H+W LPA is ‘turned on’ is rare and medical professionals are cautious about writing down that there is no capacity any more. There is some capacity for simple decisions but refusing medication is making them more and more confused - if anything, complying might restore some degree of capacity.

As LPAs and next of kin, we are still working decision by decision in their best interests - the type of Dementia is recently diagnosed but quite advanced and they’ve been in 24 hour care for almost 2 years (and visiting care before that). Many HCPs have been very involved - GP, Consultant, Mental Health service - when refusal started lots of strategies were tried before we arrived here. Even the favourite nurse has no luck now.

The medication they are refusing is also what they have been prescribed for decades and they previously understood that it was in their best interests to prevent a stroke, mitigate the effects of diabetes, high blood pressure etc.

If your pre-dementia relative could see themselves now, what would they say?

I'm off to update my own Advance Decision to explicitly state that if I have lost capacity and start refusing medication then my refusal should be honoured, other than for medication for palliative care or for short term quality of life such as pain relief.

"I do wonder if the refusal is partly because he wants things to end on his terms". Why do you say this? If this is true it implies he does have capacity to make the decision (although of course if he can't communicate this thinking you're no further forwards).

Such a good post, it is everything that I would have wanted to say.

Sending kind thoughts to you OP it's a very difficult place to be

Thanks @rainbowruthie it is hard going being the maker of hard decisions where there are no pleasant or even obvious options to choose. But I agreed to be LPA so I’m having the hard conversations.

@olderbutwiser I have started my Advance Decision too - despite still having school age DC - I’ve learned how important it is to plan before I can’t!

Pre-dementia feels a long time ago but it feels wrong to just stop all his medication - he has been taking it for decades and announced a wish to live to 100 last year!

In terms of quality of life, he can speak and even has limited mobility but couldn’t engage when we have tried to discuss the medication with him - he loses the thread of what he’s thinking mid sentence - we can’t figure out what triggered the refusing or why it’s persisted for weeks now. It’s a vicious circle of no medication making it harder for him to function.

I really appreciate people posting - being able to ask impossible questions anonymously here helps me know what questions to ask next.

Its really hard, but I decided for my mum that her medication should reduce to only what made a difference for her day to day. So she had insulin to stop her blood sugar being sky high and making her feel ill, but not statins, blood pressure drugs, or metformin. We (ie her GP and I) agreed on no special diet restrictions and an emphasis on quality of life for her.
It really sounds like for your relative there is more to be lost by concealing medication than discontinuing it

@CMOTDibbler thank you for sharing your experience, it’s so helpful to know this happens and there are different approaches. I read that hospital will sometimes stop statins while people are eating hospital food - because those in particular can make over 75s confused. You never know if you can believe what you read (and when I asked about that I was looked at as if I had 2 heads) but it is a long term medication that could be stopped.

This sums up how I feel: there is more to be lost by concealing medication than discontinuing it - you are right, thank you.

I really can’t see the point of forcing statins down an elderly person with dementia.

This is what I did in a similar situation. Essentially anything life prolonging but not vital to her daily wellbeing was withdrawn. I was very ‘fortunate’ that during a hospital admission a consultant agreed to write a letter confirming lack of capacity and that my POA should be active.

What a helpful post. So true that at a certain point in dementia, priorities need to change. May I ask if you are speaking from a professional perspective or your own experience?

My father in law at the end stages of his dementia started refusing medication. This was followed some weeks later with food refusal including the meal replacement drinks he’d previously enjoyed. The end came a fortnight later. Apparently this was an end stage pattern that’s fairly common.

sorry to you all - it’s a very hard process

Thank you @lifeisgoodrightnow, no idea where we are in our journey but I appreciate you sharing 💐

We definitely feel we’re at a significant change/step down but on the latest visit, insulin had been accepted (that day) and the nurse said they will keep trying early in the day. They are prioritising.

Does anybody have any experience of this in relation to antidepressants?

My DGF is now refusing food and meds. He can’t face swallowing them, I think. I was concerned most of all about his ADs but actually at his late stage perhaps it is not the priority I imagine?

Are you sure it is that he can't face swallowing them? In end stage dementia people forget how to swallow. Or how to be hungry and thirsty.

In very late stage disease the priority is comfort and the antidepressants are probably not doing that much anyway.

I don’t think he’s quite there yet with swallowing, although he does not get hungry. We’re trying to get to the bottom of it as every time he swallows he will cough violently after and then start spitting back up a lot of phlegm. So it’s probably very off putting for him.

I spoke to an out of hours GP yesterday who said as all his meds are for treating symptoms rather than any condition directly it will be alright to just wait and see how he gets on without them at this point.

If he coughs every time he swallows then he is losing his swallow unfortunately.

Thank you, that’s upsetting but useful to know. Because of the lack any joined up approach in his care, he’s getting called for x rays and all sorts instead of anyone seeing in relation to the dementia.

Sorry to derail your thread OP.