Yet another "the oldie has capacity" discussion

[BeaTwix]

The oldie is back in hospital. Not been answering phone or messaging family. I initially tried to ring the ward every day but it's hard as you can never speak to the right nurse and they never phone you back. I asked my siblings to help out but they felt it was unnecessary.

Ergo as I've been busy with work this week (I did a couple of on calls and a day in our basement operating theatre with crap phone reception) it dropped off and I hadn't spoken to the nursing team for about 5 days.

Finally got hold of her nurse to be told the oldies discharge planning is well underway. When I queried why no-one had contacted me I was told there was no need as they had spoken to the oldie.

I am SO frustrated I've raised TWO complaints with the same trust about her last two discharges when they did this and I spoke to the nurses on admission about how important it was to keep me in the loop.

Oldie has a good social facade but there is very little cognitive action behind the scenes. I'm doing all finances, grocery shopping etc. these days. We are still waiting for a cognitive assessment because there is a two year waiting list that oldie only joined 6 months after I raised concerns as the GP dismissed me initially.

I've also messaged the oldie daily to remind them to get the staff to loop me into the discussions so I can sort groceries etc and make sure their discharge medication isn't going to be a shit show again. Nurse looking after her didn't even know I exist - this is a recurrent sore point when they ask her about her family she always tells them she has none as her parents and husband are dead. Those of us who are living and involved albeit more distant relations apparently aren't even worth mentioning!

Hilariously 2 hours after my rather pointed conversation I got another call from the nursing team - they had just worked out the Oldie has no shoes in hospital as she had forgotten to take any with her. I was coincidentally in town when she went into hospital and went to her house to collect other stuff I knew she was missing (thanks AirTags) before visiting. I asked her if she needed anything. No mention of missing shoes.

So I only discovered that she had no shoes after I got to the hospital. Sadly this was only 8 hours before I got a train 400 miles home and I had no time to go rectify the situation. I didn't rush to sort this out as I was kind of hoping she could just go home in slippers. But apparently the physio team needed her in shoes.

So I persuaded one of my friend's very helpful teenagers to go to her house and collect the shoes. When I asked the oldie if she needed anything else brought in to the hospital from her house she then gave me a full on shopping list including two ready meals and a punnet of strawberries! It transpired she was disorientated to time and place ( thought it was Saturday and she was at home hence needing groceries). Teenager then told me she didn't know who he was. He has been her tech support for the past year and has seen her at least once a month, sometimes more. He is a lovely lad and always stops to have tea, cake and a chat.

Honestly, how do the staff keep missing how confused she is??

@MissMoneyFairy not sure what your role is but believe me I am the PoA and the hospital have seen multiple copies of the document!! The person I care for will also confirm if they ask that I hold PoA.

The reason the hospital are excluding me isn’t because they don’t recognise the PoA it’s because they don’t recognise her lack of capacity and my stated concerns and concrete examples of problems keep getting lost in the notes/handovers.

It does seem that once you become an adult with capacity, there is no acceptance that when you become in many ways, as dependent, say, as a ten year old again, because you still have capacity to a degree, to be able to make some decisions, there is more of a push to exclude rather than include information from relatives.

To what extent is an elderly person being supported, propped up and by whom, for them to be able to present themselves as fully functioning and reporting to the world that they are independent? I think this should be explored routinely and not taken at face value.

She clearly needs an increased package of care, whether at home or in a residential home, if she doesn't know wnere she is, or who people are and has no memory of whats going on and can't look after herself then she's not safe, it's not about groceries, who cooks, cleans, monitors her through the day and night if she falls, goes out, leaves the house in an unsafe state.

Do you have POA? If not they actually aren’t allowed to have these conversations with you.

That's frustrating,they can undertake a capacity assessment in hospital.

If you have POA then contact PALS and make formal complaint the minute things start to fall. Not 5 days later.

@CapitalAtRisk because when I took on PoA I took on a responsibility to act in her best interests and in accordance with her wishes.

She wants to stay at home. It’s not patently unsafe/impossible for this to happen currently so I work to facilitate.

She also has longstanding objections to DNAR which directly oppose my own views. This came fo light in relation to my grandparent as she and the rest of the family (one of whom held PoA) disagreed over it. In that situation we ignored her wishes and a DNAR/ no escalation plan was in place when he died.

In relation to her own health I will respect her views and communicate them to the medical team.

@Riaanna not in England & Wales. No PALS.

@ Zanzara
“Utterly appalling thread title and she's carried on with term. Not worth bothering to help, I'm afraid. Perhaps she should have the thread deleted and then repost after a suitable period of reflection.”

Sanctimonious much? OP, living 400 miles away from an elderly rellie, is doing her best to help, and all you can do is gripe about her being called “the oldie”? It wouldn’t worry me a scrap were my DC to refer to me thus. Get over yourself. I wish I were able to offer some assistance to the OP other than sympathy.

Sadly this sort of scenario is not uncommon.

Relatives need to make absolutely sure in such circs, that the person has no house keys with them (and if they do, remove them!) so that they cannot be returned home without relatives’ prior agreement.

@BeaTwix But if she has capacity, then the Health and Welfare part of the PoA cannot be applied and you cannot make health and welfare decisions on her behalf. That's in law - that's not the hospital "being awkward", that is simply how it works. The financial part is different, she can consent to you acting on her behalf financially if she has capacity, because the law recognises that the bar for capacity and the ability to successfully manage complex adult finances are quite a way apart.

If you believe she doesn't have capacity, you can request the hospital social work team undertake a capacity assessment and take it from there. But the threshold for capacity is surprisingly low....

If you're used to the paediatric environment, then it might be helpful to see the parallels between capacity and Gillick competence - that same right to make "poor" decisions, if the patient can understand the consequences.

Is this in Scotland, which hospital trust. I'd contact social services and reiterate you think this is an unsafe discharge and she needs a higher level of supervision, who looks after her say to say. She may have had a capacity assessment to decide she has capacity so no need to use the health poa.

As someone who is living aspects of this I see nothing wrong in the title, and only care and compassion in the OP's frustration and a desire to respect their relative's wishes whilst battling the system.

I certainly didn’t take offence at the ‘oldie’. Many people have affectionate nicknames for relatives.

My parents were affectionately known as the APs (Aged Parents), dating from a way back TV Great Expectations, in which a character called his father Aged Parent. The likes of birthday cards were addressed to AP (M) and AP (F).

Later, after she was widowed, my DM was known as the OW (Old Woman) which she didn’t mind at all. E.g, ‘Old Woman, would you like a cup of tea?’

I should add that she’d never been ‘Mum’ - she hated it, thought it sounded fat!

@roundaboutthehillsareshining yet another person refusing to believe that I know what I’m talking about!

it really is incredible. I’m actually quite concerned that a lot of you work in this sector

I’ve been back to the specific PoA document for my relative and re-read it. Both the health & welfare sections are active in the current circumstances. This document does not need a capacity assessment for welfare. To paraphrase it kicks in if “my attorneys believe I no longer have capacity”

As I’m sure you know capacity is decision specific and depends on a persons ability to retain information and weigh consequences.

I don’t think my relative has this in relation to hospital discharge as her short term memory is so poor she can’t retain the information and she doesn’t recognise the risks of going home to a house with no food. Nor does she accept that she is no longer doing online shopping or accurately communicating to me her shopping needs. Instead I guess or her cleaner tells me what she needs and I order. In extremes her cleaner (who is a superstar) pops to Tesco (obv I pay her).

@BeaTwix I'm sorry, you are mistaken. The rules on Health and Welfare are clear. To quote the relevant guidance:

"Health and welfare lasting power of attorney
Use this LPA to give an attorney the power to make decisions about things like:

• your daily routine, for example washing, dressing, eating
• medical care
• moving into a care home
• life-sustaining treatment

It can only be used when you’re unable to make your own decisions." Source (https://www.gov.uk/power-of-attorney#:~:text=Health%20and%20welfare%20lasting%20power,life%2Dsustaining%20treatment)

If the patient is deemed to be able to make their decisions, as it sounds like your patient is, then the health and welfare part of the Lasting Power of Attorney does not apply.

If you hold an Enduring Power of Attorney, (that was signed before 2007), then this cannot be used to make Health and Welfare decisions on the part of the donor.

@roundaboutthehillsareshining

This Is not an English PoA and even if it were I don’t believe she has capacity.

The test for capacity is an ability to retain information and weigh consequences. She can’t do that for the decisions around discharge planning. She will simply agree with whichever professional is in front of her and the plan they are putting forwards.

In my experience many staff simply accept a patient/clients seeming acquiescence as capacity without probing what they have understood/retained and if the definition of capacity is truly met.

I understand why - it’s much easier to work with the compliant elderly person and get them out of hospital fast but in this case it has put the person I care for at risk twice previously and as another poster on the thread shared contributed to her mother’s death. We need better training around this. The capacity to decide on long term care needs is by nature much more involved than the capacity to chose lunch. I’m not sure everyone understands this.

https://www.publicguardian-scotland.gov.uk/adults-with-incapacity-(scotland)-act/definition-of-incapacity

She had capacity when she and the certificate provider signed the form, even if it says it starts when her attorneys believe she lacks capacity does that mean she needs an assessment or do they just rely on one attorneys belief.

Hi OP, whilst I agree with "the oldie" not being the language I'd like to see I wonder if I can help a bit. I regularly do mental capacity assessments as a part of my role- you need to speak to staff and tell them which decision it is that you feel she may lack capacity for. (Mental capacity is decision-specific; someone might not be able to make an informed decision about where they live, but for example would be able to make an informed decision about whether they want tea or coffee to drink).

It is worth mentioning to staff that you feel this lady gives good surface answers but isn't able to demonstrate reasoning or weighing up beyond that - a good capacity assessment doesn't take a superficial response at face value. I am sorry you're going through this as I know how scary and frustrating it can feel when you have a different point of view around someone's cognition compared to the people caring for them.

Is your relative in Scotland or England, where do you live, are the hospital aware of the differences

I couldn't get past all the people ignoring the point of the OP and instead attempting to police her writing. So rude and infuriating.

If there's conflicting thoughts about her capacity would it be best to contact the opg for their advice on the best and safest way forward

I agree.

a good capacity assessment doesn't take a superficial response at face value.

Oh I'm laughing hard at that.

I don’t think the hospital gave done a formal capacity assessment.

They just take the pleasant polite woman in front of them at face value.

The frustrating bit for me is that I keep reiterating her confusion, I give concrete examples of issues and then it doesn’t get handed on.

I really think stuff like this needs to become a routine part of handover for older adult patients. It may be that all that needs said is “capacious”

I’m not opposing the discharge plan at all. I just want to be included so I can get the house prepped and head off issues with medication. I think I’m actually helpful!!

On a practical level I also know the keysafe code and she left her door keys at home too… it won’t surprise you to know that she can’t remember it or remember I’ve texted it to her previously so she could read back old chats to find it.