Advance Care Plan

[Misslovely]

I have a parent who was diagnosed with Alzheimer’s at the beginning of the year. Her GP wants to complete an advance care plan.

From what I understand of this it is about my parent’s wishes if she had any physical or mental health issues. It is not a legal or binding document.

I don’t see the point of this plan. For example, my parent may say she would like to stay at home if she had a fall and had to take medication. I don’t know if there would be funds to get a Carer to see her more than once a day.

Another worry is that my parent hasn’t got any concept of covid and may say she would prefer to go into hospital than stay at home.

I think the advance care plan is something the GP just needs to get done. Am I able to refuse it? I don’t have LPA for health. Or could it say on the plan to consult next of kin first.

I don’t think my parent has the capacity to understand the implications of her decisions.

Any advice or comments would be welcome. Thanks

 

[nitram]

There are two distinct types of advanced care planning documents.
Both can be very useful in different ways.

Advanced Statement
A guide to record what the patient does wish to happen, not legally binding.

Advanced Decision (to refuse treatment) (ADTR)
A legally binding refusal of specific treatments in line with the Mental Capacity Act (2015)
This records what the patient does not wish to happen

Have a read through

Dementia, advance decisions and advance statements

When you have dementia, planning ahead may include writing an advance decision or advance statement. You can use these to make decisions about care and treatment in the future.

www.alzheimers.org.uk

 

[lollyc]

We set up an Advanced Decision early on in Mum's dementia - about 4 years ago. She was adamant she didn't want her life extended, so it gave her the option to refuse ventilation, tube feeding etc. She was also able to say why she had made these choices. Although my sister and I would also have made these choices, it has given us the reassurance that we would be carrying out Mum's wishes. Knowing that, as her dementia progressed, Mum would have less and less input into decisions about her life, we felt it was important for her to be able to make choices about the end of her life.
Just because your mum has a diagnosis of Alzheimers doesn't automatically mean she doesn't have the capacity to make choices about her health. Capacity is a very variable thing, and you will find many posts about it on here.
I wonder if her GP is trying to ascertain what your mother might want to do in the future, when she does not have capacity? For example, would she want to undergo tests / investigations for something that might be curable. Your mother may say no, because she doesn't want to prolong her life , but there will be some people who will insist on all treatments, regardless of whether they would result in a poor quality of life.
Mum has recently developed a health problem which, potentially, could be further investigated with scans etc. However, we have decided not to pursue this option. Mum would find the whole process very distressing, would worry even if nothing was found, and we would not put her through treatment anyway. As this is in line with her Advanced Decision, her GP his happy with that choice.

 

[Jaded'n'faded]

My mum made a Living Will years ago which is pretty much the same as the Advanced Decision that you can do now. (i.e. it was legally binding.)

When it came to it, I was the one who had to make decisions, but I did so waving the LW in one hand. Even so I was given a lot of dirty looks and told, 'Don't you care about your mother?' on a few occasions

Then there's the Broken Hip Scenario. Mum was pushed over (in her CH) and broke her hip so she was taken to hospital to get it fixed. I didn't object and have no idea what would have happened if I had. I imagine I would have been overruled and she would have been treated 'in her best interests'. I don't know if I could have challenged that legally. (Mum's LW stated that if she lost capacity or was compromised to the extent she needed to rely on care for the rest of her life, she did not wish to receive any further treatment, even if that meant she would die. It was explicit.)

The trouble with asking people if they would like to stay in their own home or go into a care home is that no one ever says, 'I want to go to a care home!' Neither do people have any understanding of how bad they might get or why professional care from a full team of carers might become necessary.

I do agree that the Care Plan suggested by the doc is probably not worth much, other than taking a DNR decision if that's what your mum would want. I arranged a (separate) care plan for mum - with her GP - along the lines of 'No More Hospital!' and was happy with that decision. (No idea what I would have done if she'd had another bad fall or cut her head open or something...) But it might help you to have a discussion about these things with your mum, so you have a better idea of what her wishes are. A lot of people refuse to discuss end of life/death till it's too late.

 

[Lemondrizzle]

I had to complete an Advance Care Plan for my aunt at the start of the year and it clearly states it is not an advance directive.. This had her next of kin details, her wishes for care and post death instructions. Under the section for her care wishes I simply put to be treated with dignity and care and not to be returned to hospital, no pointless investigations/treatments, to be pain free.

 

[Misslovely]

Thanks for your comments. It’s a bit difficult because my parent doesn’t like me being in consultations with her and the memory nurse or GP. I also don’t want to influence her wishes.

I think I should find out more about what the advance care plan entails. It is a document which is going to have to be reviewed and updated anyway.

There is already a DNR/DNAR for her.