Advanced Care Planning

[IthinkIsawahairbrushbackthere]

DM is currently in hospital on antibiotics. It's her second visit in two weeks. The first time she had two nights on a trolley in A&E. She had a brain scan but no diagnosis and no treatment beyond evidence of an historic stroke and vascular dementia. This time she has had two nights in A&E and has been moved to a ward. She was treated with fluids and potassium and is on antibiotics. She has to wait for transport to take her back to the home.

The Staff at the home and I are in agreement that hospital admissions are not really in her best interests. The dementia is advanced, she has no mobility, very little language, she's nearly completely blind. I have been in touch with a service who help with advanced care planning in cases like this and I will be meeting with a member of their staff and mum to discuss ACP.

My question is - how much of the family should I involve? I am an only child. I have a cousin that I am very close to who visits mum every week with me. Her DF, DM's brother in law, also visits every week. DM's brother is very elderly but makes the trip to see her as often as he can and I keep in touch with him. My DD who lives locally has always been involved in DM's care. If she was ill DD would stay with her. She would sit on the floor of her bedroom to do her homework so she wasn't alone etc. Those are the family who are most involved. Should any of them other than me be with her when the forms are completed?

Oh your poor Mum.

Do you have LPA?

Wr were in a similar situation and were adamant that our Mum should not make any more pointless long uncomfortable journeys to hospital, to languish on a trolley. However the GP was very reluctant to let us refuse for her to go.

Her brother is her next closest relative. Do you think any of the people who are close to her would object to your decision? Would they be if emotional strength and clarity to you? Legally you are her closest relative, but an objecting GP might be better convinced with an additional relative backing you up.

I would explain to all who care about her (and how lovely that they do) that you cannot bear to see her bundled into an ambulance into unfamiliar surroundings to spend 2 nights on a trolley, and they Care Home have advised that there is no benefit.

I am sure they will agree and support you.

I’m sorry you’re going through this, it’s a hard hard time, I’ve been there.

For an if it were me I’d involve as few people as possible, probably only your (presumably adult daughter), which is more about support for you.

ACP can be very polarising, and some people can be quite horrified by the idea, they’d want CPR carried out on an elderly person etc, and generally the less close they are to the person, the more vocal they can be with their opinion. I’d go so far as to say I’d not even discuss it with anyone else, it’s no one’s business, she’s your mum, and as long as you’re comfortable with the decision, which sounds like the right one for her, that’s all that matters

I would involve just her brother. It is so hard when this stage is reached.

We were recently asked about having a DNAR note on my Mum's records.
I agreed with the Drs and don't want her resuscitated; I don't know what my StepFather & sibling's decision was. I spoke to them about my thoughts, they didn't say what theirs were but I do know there is now a DNAR in place.

The Dr said he would speak to them also but he did tell me when he tried initially, SF in particular was rather avoidant of having the conversation.

If you can involve as few people as possible, then do so, otherwise it potentially opens up a huge disparity in opinions...

I agree with keeping it to yourself and the professionals.
My stepfather is under a DOLS and I have Deputyship, but I’m not allowed to ask for an ACP! He was sent to A+E a few weeks ago because the care home thought he was unwell, called 999 and the paramedic said he needed to go in because he couldn’t find anything wrong apart from high blood pressure. SF can’t communicate. He has a DNR in place. The doctor in A+E asked me if I wanted him to stay there on a ward so they could monitor him, or return him to his care home where he could be in familiar surroundings. As the likely hood would be that he would die alone in hospital I wanted him to go back.

Thank you everyone. We went to see her in hospital. She seems to be struggling and was whispering "Just want to close my eyes and go to sleep." My cousin and I talked about who should be involved. She would come along to support me but might not be able to because of work hours. She felt my uncles shouldn't be involved because it would be too much pressure on them and talking with her I think it would be too much for my daughter as well although she is handling it all very well. She is an adult but I want to protect her because it is not her place to be responsible for my emotions. That was something my mum never did - I was the one she would cry to so I want to protect my daughter from that. I am pretty sure that her brother would not push for treatment. When my grandmother was very ill he supported her in her wish to stay at home in her own bed and I think he would be the same about my mum.

Depending on when mum gets back to the home and when we can talk to the counsellor either my husband or my friend will come with me just for support.

My uncle just phoned for a chat and he said he will back whatever I think is best for mum. I've had to promise that if I need a lift to the hospital I will let him know and he will pick me up - he's in his 80's and it's a 40 minute drive! I have assured him I will keep him in touch and told him not to rush to see her because she won't know him anyway. Last time she saw him she talked about him - told him what a wonderful man UncleHairbrush is, how proud she is of him, everyone respects him. When he said "That's me!" she wouldn't believe him!

But I know he is happy with whatever I feel is best for mum so I am pleased to have talked to him. I won't discuss it with my other uncle. But her brother he is happy with whatever I feel is best. He's a lovely man!

I'm guessing they are talking about something like ReSPECT https://www.resus.org.uk/respect - you can have a look at it in advance. With my mum we talked about what might happen if she got a UTI or a chest infection that did not respond to oral antibiotics; what might happen if she fractured her hip.

Is her home a nursing home? Do you know if they can manage her palliative/end of life care?

Yes, thankfully it is a nursing home. The counsellor sent me a copy of the form that they complete - along with an assessment of mum's capacity. Wales hasn't adopted ReSPECT but the plan sounds very similar. I think it is probably the NHS Wales' own version. The counsellor will help lead the discussion about what is important to mum so far as mum is able to contribute and make her feelings known. They sent me a copy of the form and it is very thorough in the details it requires.

Thinking of you @IthinkIsawahairbrushbackthere . You made a good choice of care home. The team there will want to support you, too.