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GP is ignoring my wishes as HW PoA.......where do I go next?

prittlewell

Registered User
Jan 28, 2020
33
Mum is in a care home, and has been for two and a half years. She has had dementia for 8 years, and has been on Donepezil for 7 years.
I have HW PoA with the ability to make life decisions. I spoke to Mums last GP in December, and he agreed with me that the Donepezil was having little effect, and should be stopped.
The Home changed GP in January, and the new GP is agreeing with the Home, who do not want the Donepezil stopped, as they say that Mum will deteriorate faster without it. In my opinion it is because, along with the sleeping tablets they give her, it keeps her in a comatose state and she is easier to manage!

Mum has little quality of life. She cannot walk and has to be hoisted continually which she finds painful. She is also doubly incontinent. The wording on the HW PoA form which my Mother signed states:

I give my attorneys authority to give or refuse consent to life-sustaining treatment on my behalf.

It also states:

If you choose this option, your attorneys can speak to doctors on your behalf as if they were you.

I know my Mother. She would not wish to be in this state. Her own Mother went through the same journey 40 years ago, and Mum made me promise that I would never let her go the same way. Whilst I cannot follow this wish to the letter and speed up her demise, I feel I should be able, as PoA, stop the GP and care home prolonging it. I have asked for her to be transferred onto the palliative care team, but again, the GP has refused.

The new GP has not visited Mum, but has sent in the Community Dementia Nurse to carry out a review. This was done without me being present due to covid, and the CMD nurse has (unsurprisingl) agreed with the home that she should continue on Donepezil, and therefore the GP refuses to stop it, which is against my wishes.

The GMC guidelines state that where a PoA exists:

The doctor should offer support to the legal proxy in making the decision, but must not pressurise them to accept a particular recommendation.

I feel I am having my wishes, as the only person would really knows what my Mum would have wanted, ignored.
 

Jaded'n'faded

Registered User
Jan 23, 2019
889
High Peak
Tricky. Firstly, I would be as livid as you are about the doctor overruling you. However... Donepezil is not life-prolonging.

When the care home and doc say without it she would deteriorate faster, I would question this. I think - as you do - that this has more to do with managing her behaviour. Having said that, your mother's history - 8 years dementia, move to a care home 2 and a half years ago - would suggest it ain't doing her much good as she has clearly deteriorated considerably in that time! Also, as she has been on it so long, how can they (GP and CH staff) possibly know how she would be without it?

My mum had made a Living Will stating much the same - that if she lost capacity and became dependent on carers for the rest of her life, she did not wish to receive further treatment/meds. And like you, her mum went through it and mum made it very clear to me what her wishes were. But she was otherwise healthy so I didn't get much chance to 'refuse treatment' on her behalf! There were occasions when she got a UTI and was prescribed antibiotics. I agonised about this - should she have them or not? She became very confused and difficult when she had a UTI though didn't appear to suffer much pain/discomfort. (Or never said she did. But she also thought the pills were making her pee all the time and refused to take them some days.)

If she'd been in pain, the decision would be easy - give her the pills. But should I insist she has pills so that she is less trouble for the staff? It's a real dilemma. I also wondered, if I said no to ABs, would she get more ill, develop further infections and maybe die? And would that be 'nature taking its course' or me allowing her to suffer unnecessarily?

In the end my decision (i.e. my interpretation of mum's wishes) was that I said yes to ABs for a UTI but would have said no if she developed a chest infection or similar that might 'finish her off'. A bit of a subtle distinction really, but it was partly based on mum's difficult behaviour during a UTI - my fear was that if she got too difficult she might be asked to move and that was something I wanted to avoid at all costs.

Have a think about what you would do in various scenarios for meds. Sometimes it's about keeping them comfortable rather than being life-prolonging.
 

Canadian Joanne

Volunteer Moderator
Apr 8, 2005
16,657
66
Toronto, Canada
As @Jaded'n'faded says, donepezil does not prolong life. It can make a person's moods and frame of mind better. If a person feels better, that's a good thing in my opinion.

The only way to find out about the effects of stopping the med is to do so. This happened to a friend's mother and she declined with frightening rapidity in a month and a half. She was put back on and recovered, but did not get back to the level she had been prior to the stoppage.

We kept my mother on donepezil right till the week before she died. My sister and I did not want to risk any fast decline.

As for your mother being in a comatose state, I would first have the sleeping pills and any other anti-depressants or anti-psychotics stopped. My mother also became rather sleeping so we gradually got rid of her other meds first. At the end, all she was taking was the donepezil and her blood thinner. These did not render her comatose.
 

angelict

Registered User
Jan 16, 2020
32
Such a shame your wishes are being over ruled by professionals. Have you considered speaking to the CQC about this ?
 

Louise7

Registered User
Mar 25, 2016
2,375
@prittlewell As has already been posted, Donepezil does not prolong life. It helps to manage the symptoms of dementia but does not slow down the progression of the disease. Mum was on Donepezil for 4 years before it was stopped suddenly by the hospital. They asked the GP to restart it a few days later but due to communication failings this didn't happen. Mum did deteriorate and unfortunately it was then deemed too late to restart the Donepezil however she is still going strong 3 years later, on no medication other than paracetamol.

A decision on stopping Donepezil is not about stopping life sustaining treatment, it is about your mum's quality of life. As above, Donezepil can improve someone's moods/behaviour and could make your mum more comfortable. Her current quality of life will not improve if the Donepezil is stopped but it may be worse. Even with H&W LPA a doctor can still disagree with your decision to stop medication if they don't feel that it is in your mum's best interests.

You don't say if you have had a proper discussion with the new GP about their decision? You need to have a conversation with them to discuss what impact stopping the Donezepil is likely to have on your mum's quality of life. It's worth asking for the sleeping tablets to be reviewed too if you feel that they are causing her to be 'comatose'. If you still disagree with the medical advice then you can request a second opinion and ultimately go to the CoP if you still feel that the GP is not acting in your mum's best interests.
 

prittlewell

Registered User
Jan 28, 2020
33
Thanks all.

I appreciate the comments and thoughts. I think my main issue is that the wording on the HW PoA that my Mother signed and had witnessed, clearly states......

If you choose this option, your attorneys can speak to doctors on your behalf as if they were you.

On this basis, it clearly states that I can speak as if I was Mum. If my Mother was compos mentis, and the GP told her it was in her interests to take a certain medication, obviously she could refuse, and this would be accepted.
Based on the above HWPoA wording, I should be able to refuse any medication on my Mothers behalf, and that too should be accepted.

I would love a GP’s opinion if there are any on this board 😊
 

Louise7

Registered User
Mar 25, 2016
2,375
I think my main issue is that the wording on the HW PoA that my Mother signed and had witnessed, clearly states......

If you choose this option, your attorneys can speak to doctors on your behalf as if they were you.
Mum's got exactly the same wording in her H&W LPA. It's in Section 5 - Life-Sustaining Treatment - which is described as "care, medicine or other help from doctors that's needed to keep you alive". Stopping Donepezil wouldn't fall into that category.

Does the new GP know that you hold H&W LPA and that the previous GP agreed to stop the Donepezil, as presumably that should be recorded somewhere in your mum's medical notes? If you haven’t already done so, discuss your concerns with them and ask them to explain their decision making process.
 

imthedaughter

Registered User
Apr 3, 2019
475
There were occasions when she got a UTI and was prescribed antibiotics. I agonised about this - should she have them or not? She became very confused and difficult when she had a UTI though didn't appear to suffer much pain/discomfort. (Or never said she did. But she also thought the pills were making her pee all the time and refused to take them some days.)
Appreciate this is off topic but I have had UTIs and they are bloody agony: it's like peeing ground glass and the pain constant, for me at least. Maybe some people have them differently but I would not recommend withholding antibiotics for a UTI. I collapsed after the infection reached my kidneys once. Anyway enough about my waterworks...

I like to research any drug dad is prescribed. He's off the donepezil now and on mematine, but if anything it made him more aggro and certainly didn't sedate him. If you're concerned I suggest you speak with the prescriber yourself - dad's care home manage his medication because they care for him and see him every day but they do it with the memory team who prescribe the drugs, so they make the decision really. If I had a problem with it I would speak with the memory team myself and ask them to liaise with me.
 

MrsV

Registered User
Apr 16, 2018
187
Northamptonshire
Mum is in a care home, and has been for two and a half years. She has had dementia for 8 years, and has been on Donepezil for 7 years.
I have HW PoA with the ability to make life decisions. I spoke to Mums last GP in December, and he agreed with me that the Donepezil was having little effect, and should be stopped.
The Home changed GP in January, and the new GP is agreeing with the Home, who do not want the Donepezil stopped, as they say that Mum will deteriorate faster without it. In my opinion it is because, along with the sleeping tablets they give her, it keeps her in a comatose state and she is easier to manage!

Mum has little quality of life. She cannot walk and has to be hoisted continually which she finds painful. She is also doubly incontinent. The wording on the HW PoA form which my Mother signed states:

I give my attorneys authority to give or refuse consent to life-sustaining treatment on my behalf.

It also states:

If you choose this option, your attorneys can speak to doctors on your behalf as if they were you.

I know my Mother. She would not wish to be in this state. Her own Mother went through the same journey 40 years ago, and Mum made me promise that I would never let her go the same way. Whilst I cannot follow this wish to the letter and speed up her demise, I feel I should be able, as PoA, stop the GP and care home prolonging it. I have asked for her to be transferred onto the palliative care team, but again, the GP has refused.

The new GP has not visited Mum, but has sent in the Community Dementia Nurse to carry out a review. This was done without me being present due to covid, and the CMD nurse has (unsurprisingl) agreed with the home that she should continue on Donepezil, and therefore the GP refuses to stop it, which is against my wishes.

The GMC guidelines state that where a PoA exists:

The doctor should offer support to the legal proxy in making the decision, but must not pressurise them to accept a particular recommendation.

I feel I am having my wishes, as the only person would really knows what my Mum would have wanted, ignored.
Hi there,
we have a similar situation. The home changed mums GP, we have no idea to whom, when we ask for an update, on meds, on how mum is coping generally, we do t get a straight answer. The response is usually I’ve only just come on shift, I’ll ask someone to ring you etc. Mum strolled into the CH in April ( she was admitted due to wandering and da get to herself). 4 months later she can’t walk unless aided, Has to be spoon fed, Incontinent, lost so much weight, can’t speak, just nods. Rapid detioration in only 4 months. She looks drugged up and falls asleep when we talk to her. The CH lost her hearing aid a S her teeth and now she’s deaf too, My brother and I have POA for HW and Financial. She doesn’t have a clue who we are, but this isn’t new. It’s no quality of life at all. Mum wouldnt want t to live like this. It’s very sad.
 

Louise7

Registered User
Mar 25, 2016
2,375
The home changed mums GP, we have no idea to whom, when we ask for an update, on meds, on how mum is coping generally, we do t get a straight answer. The response is usually I’ve only just come on shift, I’ll ask someone to ring you etc.
I also had problems with getting medical information from the care staff. Best thing to do is to speak with the care home manager directly. Request that you are informed any time your mum's medication is changed, and ask for a copy of her current medication chart and the name of the GP. You can then drop a copy of the H&W LPA off at the surgery and request a medication review if you have any concerns.
 

Canadian Joanne

Volunteer Moderator
Apr 8, 2005
16,657
66
Toronto, Canada
I would love a GP’s opinion if there are any on this board 😊
One of the conditions of DTP is that people do not post in a professional manner., as this is a peer-to-peer support group, not a medical forum. If you would like such advice, I think it would be best to approach the new GP and, as @Louise7 suggested, discuss your concerns with him and ask him to explain why he made the decision.
 

MrsV

Registered User
Apr 16, 2018
187
Northamptonshire
I also had problems with getting medical information from the care staff. Best thing to do is to speak with the care home manager directly. Request that you are informed any time your mum's medication is changed, and ask for a copy of her current medication chart and the name of the GP. You can then drop a copy of the H&W LPA off at the surgery and request a medication review if you have any concerns.
That would be great, but the problem is the CH Manager never calls us back.
 

MrsV

Registered User
Apr 16, 2018
187
Northamptonshire
One of the conditions of DTP is that people do not post in a professional manner., as this is a peer-to-peer support group, not a medical forum. If you would like such advice, I think it would be best to approach the new GP and, as @Louise7 suggested, discuss your concerns with him and ask him to explain why he made the decision.
Hello Canadian Joanne,
That's a bit difficult, as the CH Manager is always busy and doesn't call us back. We are not allowed inside the CH either. The CH Manager changed Mums GP because the other one was too far away. Plus we have no idea which GP or Surgery it is - after several requests.
 

Jaded'n'faded

Registered User
Jan 23, 2019
889
High Peak
I don't know what it's like where you live but here, a couple of the larger GP group surgeries deal with all the care homes in the area. Could you phone the local surgeries and ask if their GPs deal with XX Home? If you tell them your mother lives there and you need to know who her GP is now as you have information you need to pass on, I'm sure they'd tell you.
 

northumbrian_k

Registered User
Mar 2, 2017
1,038
Newcastle
A new GP taking on a patient may take account of a decision made by the previous GP but is not bound by it. My layman's understanding is that Donepezil may help to slow the progression of dementia ,but it is difficult to show for certain whether it has or not. It is said to be more suited to the earlier stages and may be stopped or substituted by something else if medical advice is to do so. I am not sure why the original poster feels so strongly that the Donepezil should be stopped. The issue about prolonging life is not relevant to that decision. The best way forward would be to make an arrangement to speak to the GP, indicating that LPA is held if this is questioned, and discussing the best options in terms of care and medication. The care home might help to arrange such a meeting or, at the very least, should supply details of the GP. Ultimately an attorney's wishes may be over ridden if medical advice is that they are not in fact in the patients best interests.
 

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