Health and Welfare POA - what happens if I don't have it?

[FionaOD]

Hi everyone,

My mum has a condition called Primary Progressive Aphasia which is a form of Frontal Temporal Lobe Dementia. It's an unusual illness, insofar as she has lost all power of speech and also struggles to communicate more than a few words in writing, but her ability to reason and make decisions is relatively unaffected and she can still drive (just) and lives independently with a partner who is there rather sporadically.

My question relates to Health and Welfare POA.
​

When my mum was diagnosed, she gave my sister and I financial POA, but didn’t want to do the health and welfare one. I think she was worried because her own mum ended up unhappy in a care home. A few years later on, I think she still has capacity, just, and I would obviously like her to do the H&W one, so we can do our best to carry out her wishes. I’ve tried in various ways to get her to communicate those wishes, but she has dismissed me so far and we are in the last chance saloon as far as her communication skills and capacity are concerned. I’m working on a picture-based conversation about future living arrangements and care and haven’t given up hope yet, but here’s the question....if I fail to get H&W POA, what are the implications? She’s just turned 80, so part of me is hoping that it’s unlikely that doctors would enforce unpleasant life-sustaining treatment on her? She has good financial resources, so we should hopefully be able to keep her at home with live-in care if that’s what she chooses.....what’s the worst I can expect if I can’t pull this off??

Thanks in advance for any advice you have for me.

F

 

[canary]

Hello @FionaOD
I didnt have any sort of POA for my mum as she wouldnt agree to it and then lost capacity, so I had to go through the Court of Protection for deputyship,. Unfortunately they very, very rarely give H&W deputyship, only finances.
I never found it to be a problem, though. Doctors and hospital staff asked me about what she would have wanted and fortunately, there was never any disagreement. I agreed to a Do Not Resuscitate (DNR) form, but if your mum can do this herself it would be helpful. When mum got to last stages of her dementia she had a stroke and I spoke to her consultant about treatment. I think he was relieved when I said that I didnt want her to have stents inserted and and we agreed that she wouldnt even have a doppler scan as she would find it too distressing. After this I talked to her GP and we agreed that it would not be in her best interest to have further invasive treatment and that she would only go to hospital for broken bones (to make sure that she was not in pain). In fact, she fell and broke her hip and this propelled her into End of Life. She passed away 4 weeks after braking her hip, in her lovely care home, tended by people she knew and trusted.

 

[FionaOD]

Hello @FionaOD
I didnt have any sort of POA for my mum as she wouldnt agree to it and then lost capacity, so I had to go through the Court of Protection for deputyship,. Unfortunately they very, very rarely give H&W deputyship, only finances.
I never found it to be a problem, though. Doctors and hospital staff asked me about what she would have wanted and fortunately, there was never any disagreement. I agreed to a Do Not Resuscitate (DNR) form, but if your mum can do this herself it would be helpful. When mum got to last stages of her dementia she had a stroke and I spoke to her consultant about treatment. I think he was relieved when I said that I didnt want her to have stents inserted and and we agreed that she wouldnt even have a doppler scan as she would find it too distressing. After this I talked to her GP and we agreed that it would not be in her best interest to have further invasive treatment and that she would only go to hospital for broken bones (to make sure that she was not in pain). In fact, she fell and broke her hip and this propelled her into End of Life. She passed away 4 weeks after braking her hip, in her lovely care home, tended by people she knew and trusted.

Thanks very much for taking the time to respond and I’m sorry for your loss. Your experience is reassuring for me though - I can’t imagine what sort of dispute we could get into, because, like you, we don’t want mum to go through nasty treatments unnecessarily and any sensible doctor would agree.... hopefully!. May I ask how old your mum was?

 

[canary]

My mum was 92 years old when she died. She had Alzheimers rather than PPA, and I know that people with PPA are generally younger than people with Alzheimers, but I dont think it is an age thing. My OH has an undiagnosed neurological condition with symptoms very similar to bvFTD and is 63 yrs old, but when he was in hospital recently with sepsis I was asked if I would consent to a DNR. I have H&W POA for him , but I feel that it is unlikely that I will need to use it. Mostly is is of use if you want doctors to do something that they dont want to do.

 

[FionaOD]

My mum was 92 years old when she died. She had Alzheimers rather than PPA, and I know that people with PPA are generally younger than people with Alzheimers, but I dont think it is an age thing. My OH has an undiagnosed neurological condition with symptoms very similar to bvFTD and is 63 yrs old, but when he was in hospital recently with sepsis I was asked if I would consent to a DNR. I have H&W POA for him , but I feel that it is unlikely that I will need to use it. Mostly is is of use if you want doctors to do something that they dont want to do.

Thanks again - that's really reassuring. All the best with your OH. Fx

 

[ebas]

My mum was 94 when she died last February in a nursing home.She had COPD & dementia(although not officially diagnosed) I was consulted throughout by doctors, social workers & hospital staff & I didn't have POA

 

[FionaOD]

My mum was 94 when she died last February in a nursing home.She had COPD & dementia(although not officially diagnosed) I was consulted throughout by doctors, social workers & hospital staff & I didn't have POA

Thank you - that's really reassuring.

 

[witts1973]

Hi everyone,

My mum has a condition called Primary Progressive Aphasia which is a form of Frontal Temporal Lobe Dementia. It's an unusual illness, insofar as she has lost all power of speech and also struggles to communicate more than a few words in writing, but her ability to reason and make decisions is relatively unaffected and she can still drive (just) and lives independently with a partner who is there rather sporadically.

My question relates to Health and Welfare POA.
​

When my mum was diagnosed, she gave my sister and I financial POA, but didn’t want to do the health and welfare one. I think she was worried because her own mum ended up unhappy in a care home. A few years later on, I think she still has capacity, just, and I would obviously like her to do the H&W one, so we can do our best to carry out her wishes. I’ve tried in various ways to get her to communicate those wishes, but she has dismissed me so far and we are in the last chance saloon as far as her communication skills and capacity are concerned. I’m working on a picture-based conversation about future living arrangements and care and haven’t given up hope yet, but here’s the question....if I fail to get H&W POA, what are the implications? She’s just turned 80, so part of me is hoping that it’s unlikely that doctors would enforce unpleasant life-sustaining treatment on her? She has good financial resources, so we should hopefully be able to keep her at home with live-in care if that’s what she chooses.....what’s the worst I can expect if I can’t pull this off??

Thanks in advance for any advice you have for me.

Hi,I haven't got H&W LPA and look after my mother at home,I haven't had any problems so far as everyone talks to me,I have worried about not having it but as I say I have been included in conversations,they need my help so I think common sense prevails,also with regards to RESPECT forms that are filled in to establish wishes about end of life care,I sat with the Nurse that helped do that and it was filled in with thoughts of what I considered were the best outcomes as my mum didn't understand and they were happy with that and it was signed off,I felt bad at the time,but it's been long forgotten about now.

 

[Sirena]

I had a similar experience to Canary. My mother did a finance LPA (years ago, pre dementia) so I have that - and IME that is the important one. It means I can organise her finances and pay for her care. I don't know why she didn't do a H&W, it was never mentioned - at the time I didn't realise there were two different types so I never asked.

I've been organising her care for 4 years and she's been in a care home since early 2018. She's 84 now, the care home manager asked me if I'd agree to a DNaR and I said yes, and her GP authorised it. The CH manager and I agree that people with dementia are best kept out of hospital unless it's an emergency like a broken limb. Obviously I don't know what will happen later on, but at least the CH and I are on the same page.

 

[mancmum]

It was a problem not having health and welfare because I could not when the time came independently choose where my father should live. We had to have a social services best interest meeting who did then recommend my choice. In order to make social services do so within a reasonable time and not to lose the place I had to say I would be evicting my father which was very very upsetting for me. My father had felt he should move back to his old home time despite this being 5 hours journey away and all the available homes being ranked poor or in special measures. And on other issues one of the fellow residents has proposed marriage to another resident and been accepted ...probably the asker still has capacity but I would doubt his fiancee has capacity to accept. My advice would be to do both while you are able ... preferably when you are in your 50s and dont have any doubts about your capacity. Treatment for cateracts also needed a best interests meeting.