End of life without cognitive decline?

[Magnificentkitteh]

My DM seems to have a lot of signs that she is approaching end of life from decompensated heart failure - lack of appetite, sleeping a lot, reduced body temperature, v low blood pressure, incontinence, dry mouth, milky eyes, I could go on. She is currently in hospital with flu and pneumonia but she also has acute kidney injury, anaemia, low minerals of various kinds a broken arm, osteoporosis. In short she's in a bad way. But mentally she is still pretty well when not asleep, and getting really fed up with them keeping finding new things wrong and treating one thing that makes another thing worse. My head is all over the place. I feel like she's in the final days of life if I'm honest, but no doctors have said this, they're treating her with antibiotics, infusions of various kinds, a bear hug blanket thing filled with air, and talking about intensive physio at a rehab hospital.

Can someone help me understand what to expect? I'm currently with her but don't know whether to go home to London (2 hours away on train) and come back next weekend, or if we really are at the end stage. I've posted similar threads before and got helpful advice but things have moved on a bit so thought I'd start a new one.

Hi OP. I work in palliative care and have gone through similar myself recently. Doctors in hospitals are often not very good at recognising when someone is approaching the end of their life. All they know how to do is keep treating the next thing and the next. You probably won’t get much done this weekend but on Monday I would ask if you can have a meeting with her consultant. They are often happy to get the palliative care team involved as they can support with those difficult conversations. Your mum should absolutely be involved in those as well.

Well they're saying she needs to be medically stable before she goes so they are "just" treating the infection before transferring her. But I'm not convinced the D and V isn't heart failure/kidney disease related rather than infection related myself.

My grandma died earlier this year at the age of 100. She was at home in a hospital bed with nurses coming in 4 times a day. I had worked at a GP surgery and was aware of the “active dying” process and could tell that this was what was happening with her. She had no cognitive decline, in fact one of my last conversations with her was her telling me that we had to insist on finding out what was wrong with her - I said the “thing” is that you’re 100 years old!! In the end she just didn’t wake up, it was very peaceful.

Please tell your mum that she does not have to accept all these investigations and treatments that are being offered to her, she may be 80, but she has capacity and she has a right to say enough and NO, and be listened to if this is her wish.

Many doctors in the nhs look at each cause of decline individually and see them at "reversible", eg. Antibiotics for an infection, but the entire process of ageing and dying isn't reversible.

Bless her, i hope she can be made comfortable.

In my experience the hospital were very clear with me. My mum was admitted thsre was a discussion around the fact that they would not send her to HDU if she deteriorated. We were also referred to Palliative care nurse who was lovely and explained it all.

Thanks, they were clear about DNAR but that is only really one specific intervention they've ruled out

Yes, my dad died from heart failure in hospital during 2020.
He'd been in and out of hospital that year for longer periods each time (where he managed to fall getting out of bed and break a rib). He also had a couple of falls at home too.

The main problem was that because of COVID all the useful things like heart failure nurses, who could have seen him and made adjustments to medication or sent him to hospital earlier had become phone calls rather than in person and we couldn't visit the hospital to get a fuller picture of what was going on while he was there. You just got an update from a busy nurse.
I'm still pretty grumpy about the whole thing to be honest.

Is this general feeling that I'm not wrong to think we are close to the end then, given the symptoms I've mentioned? She did seem a little brighter after the antibiotics but it's relative.

My mil has Parkinson’s and after a fall was taken to hospital where she deteriorated due to a uti. The senior registrar told us they would not resuscitate her and we should prepare to let her go. Dh told them he had power of attorney, wanted treatment for the uti and a comprehensive plan to get her out. He really did feel she was just being written off.

We’ve just had a lovely meal out with her and she’s still enjoying life. We know she won’t have very long but didn’t feel it was their call to decide when her time was up.

When they still have cognition, sometimes it makes it harder that they’re so aware of what’s happening. Thinking of you op.

Exactly the same situation with my dm. She had chronic lung problems but was being treated for an infection. It was clear to all family members that she was dying. She was cognitively fine but physically declining. She was assessed by a different doctor each day and it was impossible trying to speak to one. A nurse told us she didn't meet the criteria for palliative care as she was being treated for an infection. In the end after a severe incident of hospital neglect and a complaint they accepted she needed palliative care. She died weeks later. Her experience has caused me to lose all faith in hospitals.

I would say trust your gut on your mums condition. We did and we were right.

If you're NOK they will talk to you - but if you're not, then they won't.

Do you have Power of Attorney for her health and welfare?

Thanks, I am NOK but she doesn't like me doing things on her behalf. I don't have poa for health, only for money. But she has capacity at the moment (she lost it briefly when she had delirium for 24 hours).

I lost my Dad to heart failure last year. He had no cognitive decline either and was sitting up in bed doing a crossword with me was than 48 hours before he died which I still look back on in disbelief. He was in hospital for 4 weeks before he died. They actively tried to treat him for 2.5 of those weeks then had a pretty clear cut conversation with us that he was dying and they wanted to get palliative care involved. However, they then continued to actively treat him alongside palliative care which confused us no end. It was only in the last 5 days before he died that they withdrew treatment and palliative care took over completely.

I found the palliative care team much more informative and open with us about what we were looking at.

I think it would be worth asking if they think palliative care should get involved for your DM at this stage. They were clear that even if my Dad recovered, palliative care could help support us and him in the longer term as it was about keeping him comfortable.

I’m sorry your DM is so unwell and you are having to try to juggle all of this. Sending you strength as you navigate this.

Thank you. This sounds like the way to go, and I am sorry that you and other PPs had to go through similar.

I think the fact she's only 81 and has no cognitive decline may be a confounding factor. By today's standards it's quite young, and there is likely to be an expectation that she can bounce back from this whereas a 90-year-old with dementia wouldn't.

Yes I think you're right. They've barely mentioned the heart failure really except like you might mention a bit of eczema.....Even though to my eyes it is end stage. She doesn't eat so has all sorts of deficiencies and her blood pressure and blood sugars drop dangerously low - this is her 3rd admission in 2 months. Her kidneys are wrecked (though they call them "a bit dry").. Her blood pressure and blood sugars drop dangerously low.

Just wanted to update the thread. My mum is now on end of life care. She finally moved from the acute care ward to the complex care for the elderly ward and things moved quite quickly after that. My sister and I are here and will stay as long as we need to. Thank you all x

I'm glad you are in a better place knowledge wise and hope the staff can clarify things for you both.

Thinking of you xx

I'm sorry you're losing your mum OP, but glad you've got a bit more clarity. It sounds like you had an inkling before the doctors did.

We had a relative died recently and I was clear as soon as I arrived at hospital that he wasn't coming out but the doctors seemed to think it was 50-50. There were more and more last ditch attempts to treat him until eventually they decided it was time to let him pass peacefully without further intervention.

So sorry to hear this. Praying for you all

Thinking of you and glad you can be there with her.

My DF had no signs of cognitive decline until the very last day when he seemed a little confused - it coincided with an increase in his pain meds as it was also the first day he complained if any pain. We left him at 7pm and he passed a few hours later. His greatest fear was dementia so in many ways I’m grateful for how his last months played out. Wishing you strength for what’s to come x

I’m so sorry Magnificent. It seems to have all moved pretty quickly. I hope you can take some comfort from the fact that you’re able to be with her