End of life without cognitive decline?

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.

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

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

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.

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.

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.

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.

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.

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.

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.

I'm curious. How would intense physio benefit a patient with D&V.

OH that's a different kind of poorly. It seems like the hospital haven't given up on her. You should ask on Monday if a hospice wouldn't be a better place for her. Their response might clarify things for you.

This is such a personal thing of course op. My parents have both had lots of serious health issues this year, both new and old. They are 89 & 90.

It's maybe easy for me to say as they are not currently right at this moment going through crises but I've had the dnr conversation with a hospital dr this year and it made me ask point blank about likelihood of dad coming out of hospital and the dr was honest with me (I also needed to pass this on to mum).

The only thing I have been able to do (again this just me saying what I have tried to do) to give me some solace is to try to make peace with myself that I might not be there at the right time for them.

My neighbour was clear of mind. Insisted that she wanted to go home and was discharging herself. She did have a carer of ten years standing.

A hospital bed was put in downstairs and home she came. There were nurses/carers calling in. She was happy and alert. She did pass away within the fortnight, but on her terms

@Magnificentkitteh I have found you need to be really direct with the doctors. I found the approach of “I know my parent may die very soon but no one can predict when.” Then ask questions.

I found medical staff visibly relaxed when I said that as they didn’t have to break bad news so to speak.

i am sorry you are going through this and I know the lack of information doesn’t help. 💐