Potentially upsetting question about death.

[Chocchops72]

I’m not sure how to word this so I’m just going to come out with it.

how do frail, elderly people in nursing homes eventually die? When every ‘natural’ cause of death is denied to them?

My MIL is 85, aged advanced Parkinson’s, dementia and osteoporosis. She is immobile, very frail, doubly incontinent. Any time she is ill, a dr is called - most recently for a chest infection where she was prescribed antibiotics. Is this what happens now? She is just kept alive (existing) at all costs?

i don’t have much experience of the end of life, I don’t know how it happens.

@PermanentTemporary you mentioned that you're a speech therapist, so I wondered if you have any experience of 'feeding at risk'?
DM is in a nursing home after a hip operation (there's a long backstory). She was in hospital for 5 weeks where the SALT team decided she also had oropharyngeal dysphagia, so has been on a level 4 (I think) diet ever since. I don't understand how having a hip op can result in sudden-onset swallowing difficulties? The food is not too bad but the thickened drinks are disgusting and DM is hating them. She has been dehydrated as a result. We have challenged this with the hospital and they said we could perhaps move to 'feeding at risk', after fully discussing all the risks. We have POA and the only pleasure DM has left is eating and drinking. We have been trying for a Parkinson's assessment, but the hospital seem unwilling to give a diagnosis - they admit she has Parkinsonism (probably vascular) but won't prescribe any medication. I assume the swallowing difficulties are due to the Parkinson's/ism. If they would give medication, could it improve the swallowing function?
We can't bear her having to 'drink' this thickened gloop, and it's always clogging up her mouth whenever we visit, despite the home saying they are on top of mouth hygiene. I have sneakily and very carefully given her sips of pure water on various occasions, and she swallowed it well (and very gratefully!) in my opinion (admittedly I'm not a professional, just a very concerned daughter). I know I shouldn't have, but I couldn't bear to see her desperate for a cool drink of thin normal water.
SALT team are visiting DM in the home in a few days time to reassess (but I don't hold out any hope of them changing their opinion), and then there'll be some sort of meeting to discuss the 'feeding at risk' protocol. They have already warned me that if I insist on an unthickened diet, they wouldn't admit DM to hospital if she gets a chest infection, which seems very harsh. They have also discussed choking risks etc. I'm in such a dilemma as I want her to eat and drink as normally as possible to improve her limited quality of life, but I feel as though the medical team are trying to put all the risk onto the family. I understand they need to cover themselves, but if the nursing home supervise (as they should, and she already needs full assistance with eating and drinking), then surely the risks can be greatly reduced?
Could you offer any insights/advice please?

Yes and no! Very happy to give general views based on what you've said, though obviously no specific advice. Am sending you a pm.

Or quite a lot of PMs. Feel like I've hardly scratched the surface! Do feel free to ask more.

www.resus.org.uk/respect/respect-patients-and-carers

I'd be mildly surprised if there was absolutely nothing on her files at all - most areas have had a big drive on advance care planning since Covid, and the ReSPECT process I've linked you to above is the purple form that's talked of. Round here nobody over the age of 75 gets out of hospital without one, and most GPs and care homes make sure there is one done anyway.

They are about more than DNACPR - they are also about ceiling of care.

One of the big decisions that has to be made is what/when the person should go to hospital, and when not - taking into account that hospital may or may not be able to treat the infection but also may be massively debilitating for the patient. Some people's final months are a series of increasingly short bounces in and out of hospital; it can be very hard to be the one to say "no more".

Try using the phrase "allow a natural death" rather than just thinking of it as a denial of care.

Thanks PermanentTemporary that's really helpful. I'll DM you again after Thursday's SALT assessment if that's OK, and I'll also post on this thread in case it's useful for anyone else in a similar situation. I'm certainly learning to challenge the accepted wisdom of various medical professionals after the past year's events.

Also if anyone has any experience and/or advice of Parkinsonism and swallowing, especially if any medication can potentially help, that would be much appreciated.
In addition, any positive stories of swallowing potentially improving (even just a bit) after recovering from, say delirium acquired during a hospital stay?

Look on Instagram at "HOSPICE NURSE JULIE" she does brilliant videos about end of life care and what happens at the end

Your MIL most likely does have a DNR in place - most people in her situation do. But giving antibiotics isnt resuscitation. A DNR involves using CPR if a person’s heart or breathing has stopped. Family dont have to give consent to this; its a medical decision. Of course one would expect the decision to be shared with family members though.

Thanks for this thread OP.
It's very important to discuss these things.

Whilst I understand your anger, a gastrointestinal bleed is a catastrophic event that is practically untreatable. My own FIL died of one. He collapsed at home, was admitted to hospital, and died within 2 hours. It was only the post mortem that found the bleed. Th hospital did what they could, but even if they had known he’d had a bleed when he was admitted he most likely would have died.
You could write to PALS to ask for his medical records and then arrange to speak to his hospital doctor to help you understand what happened.

That's not really the point. The problem was that my siblings were told she was dying of septicemia which they had given her antibiotics for, but she didn't have that at all. Her death was caused by a massive bleed which the hospital either hadn't diagnosed or didn't disclose. Even if nothing can be done relatives deserve to know the truth. We would all have been fine if they had said it was untreatable. Lots of things are in very old age. We aren't unreasonable.

My mum also had camera investigations two weeks before she died due to suspected bowel cancer, which she didn't have. They didn't see the advanced ulcers that she had? Didn't connect this with her death? I think some kind of explanation would help in this case.

Sorry if that sounded a bit snippy, but I wouldn't be bothering hard working NHS staff if I didn't think it needed doing. I have huge respect for the NHS and have had good experiences in the past.

The oncologist who will refuse all medical treatment after 75 (even for cancer)

www.thetimes.co.uk/article/48336a68-8d1c-11ed-b24e-c1aaebfbdb8d?shareToken=6cf980ba4912bd3b1515b6745e043b5e

interesting article here about non intervention. Not sure if there is a pay wall for this though

When we entered into end of life care for DH the palliative care consultant at the hospital said if DH had picked up an infection that he would still be treated with oral antibiotics as a comfort measure but he wouldn't be admitted and treated with IVs.

@lazymum99 I pretty much exactly agree with that article but it definitely will be interesting to see if he and also I change our minds as age 75 approaches (age 60 for me).

Interesting article. My parents just turned 75. I think he might find it’s not as old as he thinks when her gets there! My mum has just been told she’s no longer ‘priority’ for mammograms though, having had breast cancer in the past and just turned 75. She’s very pissed off about this and definitely not ready to let nature take its course at this stage.

They don’t stop screening for Brest cancer at 75 because they’re happy for nature to take its course. It’s more that the benefit isn’t there for the patient. There is over diagnosis after 70 (or 75 for those who have previously had breast cancer).

Wonder if he'll go through with it though? My Mum had spent years going through how she didn't want us running round after her, would go into a home when she needed to, no need for us to worry about anything...

Now she's in her late 70s and becoming very demanding!

One can make an Advance Decision while one still has capacity. It covers several scenarios, is legally valid and gets put on your medical record. I recently looked into this for a relative, and found this website beta.compassionindying.org.uk/

Like setting up POA, I guess making an Advance Decision is something we all should do...

I’m reading Being Mortal right now and find it extremely engaging. We are not good at dealing with the inevitable in western society.

What i feel about the Rahm article is that it's not that he wants to die at 75, quite the opposite. He's just saying that he wants the maximum quality of life and not to bugger up his later years with medical treatment, particularly the full strength USA high tech version . I feel the same. I think it can be difficult to understand what losing mental capacity and real frailty actually look like, when you've barely been ill a day in your life. My mum was on no medication at all when she had her stroke at 86 and in my view had never really understood how powerless and impaired she might become, while still being kept alive.

I think my MIL genuinely believed that getting frail and confused was down to lack of discipline 🙄 and it would never happen to her. She wasn’t on any medication at age 75, partly because she never, ever went to the dr. She was always very scathing about her severely disabled, elderly neighbour, who had lost most of his sight and one leg from the knee down . ‘He just sits at home all day, no wonder he’s depressed, he needs to get out’. 🙄

One down side was that she refused to talk about getting older, and what her wishes might be. They were always ‘not there yet’. It was a massive shock to them all when she did get ill and declined rapidly, and absolutely nothing was in place or even anticipated.

My mum had dementia. Went into hospital late 2021 having had a stroke and we thought she would die then. After a couple of days she rallied, and I had a meeting with her consultant who said she should be sent home with a Peace Plan, which is a document that says she shouldn't have any more hospital admissions and should instead be kept comfortable until her death. I agreed and she was returned home with carers and the district nurses visiting every day to dress her ulcerated legs. From then on she just faded away over a period of 3 months. At the end she was like a little bird taking sips of warm tea. On the last day I think she probably had a stroke and became unresponsive and died a few hours later. It was a peaceful end.

My Dad has just moved from a hospice to a nursing home for palliative care (liver cancer). He filled a RESPECT form in and that expresses that he doesn't want to be given resuscitation, or any form of antibiotics to treat infection and that he doesn't want hospital admission under any circumstances. Luckily he filled this is fairly early on.

He's now barely drinking or eating, is sleeping more and is gently fading although we're having issues with the home reacting to med changes that are needed. It's heart breaking to watch someone go through a slow and draining end of life... but it's also a natural process and in some people, can take a really long time.

Will come back to this thread another time but @PermanentTemporary is very good on this. Sums up the chief difference though - in my experience with my late elderly mum with Parkinson's in a care home, no nudging was needed to kill her off and I felt that Surrey were trying to bump her off via dehydration. Despite her being up for life very much so, and us wanting her to live. Seems you're up against the British State which is frankly nuts, whatever you want, they won't deliver, it's the only way they can feel in control, which is the main thing.

I mean, it was like a game of chess where you were the knight in The Seventh Seal duelling with Death, who would show up in different guises. You felt like these parents who have kids in care settings which are trying to take away their life support, all tricks and tactics and smears will be utilised by the Trust.