Best interest meeting for elderly mother ....help.

[Tolkienista]

My mother is 96 , lives in a care home.
Her mobility is in decline and she's in cognitive decline too.
Has she got dementia? It's hard to say she is often muddled and confused.

Anyway to the issue.....she had vaginal bleeding, a ring pessary was taken out which immediately stopped the bleeding but she was referred for a scan which picked up something in her endometrial cavity. The gynaecologist said "its a mass ,could be a polyp, small chance it could be cancer."
He wants to refer her for a Hysteroscopy which would need to be done under LA.
He said that we as a family would need to discuss it, which we did and we have decided it's too much for a 96 year old woman to go through, she's not in any pain and there's no more bleeding.
We have power of attorney.

This morning I received a phone call from a gynae oncology nurse about this procedure, I told her of our decision. She asked about power of attorney & said they'd have to set up a "best interest meeting" on teams.
Is this straightforward or am I right in feeling concerned?
I did explain my mother's cognitive decline, and hearing problems too.

Desperate for advice, going forward.
A lot of this is falling on me and I'm struggling with it to be honest.

There are 2 types of LPA-one for finances and one for health and welfare. Do you have the one for health and welfare?

I suppose they have to be certain what treatment is in her best interest, yours is one strong voice, but there may be other clinical opinions to take into account. I would see what happens in the meeting, if you don't agree with the outcome take it from there. I'm sure everyone has her best interests at heart.

Yes we have both.

Ok so in that case the decision is with you as the attorneys regarding her medical treatments. The only way the doctors can override this is for them to take your mother’s case through the court of protection. It is very unlikely they would do this save for a few limited scenarios.

Thanks for your reply.
The nurse I spoke to was lovely and said you sound like a family who have thought this through logically.
It seems to me that they want to cover themselves (if anything happened to her).
The gynaecologist we saw on Sunday didn't mention any of this, so it came as a bit of a surprise today.
Unfortunately I'm pretty much dealing with all of this and it's really impacting on me.
Really grateful for this forum!

That's really interesting, never thought of it that way.
We've had P of A in place for around eight.months.
Didn't feel that she was against our decision, I felt more of a procedural process needed to be enacted.

Don't worry @Tolkienista it's standard process. LPA doesn't kick in until someone is deemd not to have capacity to decide for themselves www.gov.uk/use-lasting-power-attorney/health-welfare

They will need to consider if your mum could be considered to have capacity to understand the situation/ make a decision herself (it sounds as though that isn't the case, but it needs to be considered and documented).

It may also be an opportunity make sure that you (on behalf of your mum) understand the possible risks and are making an informed decision and to show that the various health care professionals agree with you.

It's very very unlikely they will disagree with your decision not to put your mum though this.

I think so often they like to put people on treatment pathways even if won’t do them much good. I think people are concerned that if they don’t do their best to prolong life then they will be seen as failing to do their job.

We’ve had to as a family put our foot down before and say no more for a frail, ill, confused woman who was in her late 80s and found every hospital appointment exhausting and painful. Transport, wheelchair, hanging around waiting.

She was dying of something else but they were keen to do all the checks and scans. District nurses were quite po faced about it but her GP agreed and then it was quite straightforward.

Ah, thanks for your reply.....much appreciated. My siblings are all working, so it's going to fall to me to be there. I just hate these situations, but I fully appreciate that protocol has to be followed.
I feel better informed.

I think you've hit the nail on the head with your comments. At 96, she hasn't really got a clue what's going on and repeatedly says why can't we go back to my doctor at the brook. She hasn't been with them since last August.
It's exhausting for me at the moment , but everyone's input today is really invaluable.

I'm surprised they are even asking for a Best Interests meeting, as LPOA for Health and Welfare the decision is yours to make.

However it's good practice to do so to formalise the decision not to investigate further as being in her best interests and will 100% be about covering themselves rather than disputing your decision.

The difficulty usually comes when e.g. 2 siblings both with LPOA disagree with each other about what they feel is best, or family disagree with medical professionals.

It's nothing to be worried about. I wish more families would get these things in order before it's too late and be realistic about how disorientating investigations/ treatments etc can be for cognitively impaired older people.

Obviously if there is going to be a significant improvement in quality of life then it's worth it but for something that may only extend life by a few months and those months will often be spent more confused and immobilised following surgery - its just not kind.

You may need to have her condition diagnosed regardless of the treatment pathways.

If cancer, she will at the very least need pain relief and more (possibly specialized) nursing care than she has at the moment.

Thank you for your really helpful message.
We're all in agreement, so there's no issue there. We'll just have to see how it goes.
I'm going to speak to the care home when I go in later this week, they must have had these sort of meetings before.

This may be useful

https://www.gov.uk/use-lasting-power-attorney/health-welfare

I imagine they’re covering their backs and making sure they’ve got it documented that you completely understand possible consequences of this.

It does sound like a very sensible and kind decision to take though. I had these investigations last year, as a fit and healthy middle-aged woman. It was traumatic, painful and entailed several
days off work to recover. Fortunately nothing untoward was found. And I understood what I was consenting to. But the thought of putting someone that elderly and confused through the experience would be awful. It’s really invasive.

You do not need a formal
diagnosis to treat symptoms like pain . It’s perfectly reasonable not to investigate someone or admit to hospital if they / their LPA have decided that it will not change clinical management.
You may need to have all individuals who have LPA present at the meeting.
Please confirm that she has been assessed not to have capacity in relation to this decision
It might be helpful to have a ceiling of care documented prohibiting further admissions to hospital as palliative care could be given in the nursing home.

I had a Geratitic Welfare Unit try to persuade me to admit elderly uncle who I cared for on an infusion programme for calcium to strengthen bones . Treatment involved regular blood tests plus infusions that took hours . They told me that it would last 3 years. But by then he would have 100 ! And certainly wanted to avoid hospital at all costs.

I think all the different departments just see symptoms= treatment. I do think older people possibly could do with some sort of care manager who considers the needs and what is best for them overall. I found even although relative was dying they wanted to carry on treating for other stuff although it wouldn’t prolong life or help in the short term. She found attending hospital really distressing but there is an assumption that treatment is always a good thing.

LPOA only kicks in if a person is deemed (formally) to lack capacity for health and welfare. Has your mum had a capacity assessment? I would want to know who is chairing this best interests meeting. I presume your mum has a social worker?

@EmotionalBlackmail Thanks for your really helpful message, that's exactly the word my sister used ....."invasive" she's had one and said from her experience there's no way my very elderly mother should be subject to such a procedure.

Oh gosh, I've no idea .
It was a hospital that phoned me this morning. She doesn't have a social worker and she's not had a capacity assessment.
This is all get really tricky.
We're suddenly caught up in a system we know nothing about.

As an aside do you have a DNR in place ? It may be prudent to add this to conversation now while your mum has some albeit limited understanding

@Hairyfairy01 I was in with her for the gynaecologist appointment on Sunday. He said we siblings needed to decide together if we wanted her to go ahead with the procedure, it was very straightforward in the way he described it.

Yes that's been in place for well over a year.

Capacity is always presumed until proven otherwise. Doctors are notorious at not doing proper capacity assessments (or forgetting about capacity fiull stop) which then opens up a whole legal loophole. Unless your mum has had a formal capacity assessment completed around such decision making it should be presumed that she can make her own choice regarding this. If you / medics feel she does not have the cognitive ability to make such decisions you need a formal capacity assessment (not just a few words in some medical notes, there is formal paperwork for an MCA). The same goes for finances. Your LPOA is great, but it only starts when it has been formally shown that your mum no longer has the mental capacity to manage certain aspects of her life. This does not mean every aspect, ie she may still have the capacity to pick what clothes she wants to wear, or what food she wants to eat but not where to invest 250,000 or if she wants an operation for example. You may find she does have MCA paperwork, but no one has actually informed you, so do ask the question. It’s a relatively straightforward assessment of it hasn’t been done.