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.

I’m don't think this is the case - a chest infection absolutely could kill an elderly person.

@RidingMyBike

I’ve read that quite recently, and have just started Rachel Cooke’s ‘dear life’. Both are very interesting.

@MereDintofPandiculation
FIL is spectacularly selfish in other aspects of life, so my annoyance at that is probably spilling over. You know what his biggest regret about MILs unexpected decline is? That he now has to cook for and generally look after himself. According to him, SIL does her best for him “but she can’t be here 24/7, you know.” 🙄

'Able to swallow' isn't a black or white situation (I'm a speech therapist, this is my field). The swallow deteriorates a bit over time but can still be very functional at a great age. However, conditions like Parkinsons or dementia affect the swallow very much. The person becomes more and more likely to have food/drink go to the chest (aspiration). They will also aspirate saliva. This is particularly likely in Parkinsons as they will swallow much less often than you or I.

Everybody aspirates from time to time, and if you are moving around a lot which clears the chest, if you can cough strongly to clear, and if you're cleaning your mouth, it doesn't matter that much. If you're less mobile and independent though, or if a condition makes your cough weak and if it's happening much more often, it's much more of a big deal. That's when people start having repeated chest infections.

Some conditions also make it harder to eat different types of food. Someone with cognitive impairment may lose the ability to organise chewing and swallowing lumps. You might see them literally rotating the same mouthful for minutes at a time. Obviously that's risky for choking and also hard to get enough calories. That's why we sometimes move to less lumpy food.

I personally don't see the ability to notice food and still eat a bit as an adequate quality of life, nor that it represents a drive to survive. But that's my personal view. It's also true that people who really are getting closer to death will eat and drink less and need less as the body shuts down.

If you can see that your MIL still enjoys her food, it is what it is. In my view it doesn't have huge meaning beyond just that - that she enjoys her food and that's something you can share and enjoy together.

That's not my experience op.

My mum died this year. She suffered from dementia, but had only been in a care home for one month. She died suddenly of a gastrointestinal bleed. She was taken to hospital, but no life saving interventions were made.

In fact I'm gearing myself up to contact PALs because I think the hospital actually failed her at the end. They misdiagnosed her entirely and I need to know what happened. That's a whole other story though.

Short courses of antibiotics are a grey area between active treatment to cure and treatment of symptoms (palliation). Infdctions do cause unpleasant symptoms so it's difficult to tease apart. In my view at present teams just give them much much too often and without any thought. If they're told to give them only for urine infections (unpleasant with extreme confusion which can make the patient difficult to care for, but not often lethal in themselves) they will simply put '?UTI' in the notes even if the symptoms are obviously in the chest as well.

The last time my dad went into hospital (from the care home ) with another chest infection , we were told, the drug / medication was having no effect, so was being stopped, if that was ok?
They were lovely.
Dad died peacefully in his sleep, in fact he'd been asleep near on 10 days by then - he was late 70ties

Check out Katie Costello Soul Midwife on FB. She talks about this exact subject and might have some advice for you xxx

From experience, it’s likely a doctor would decide a DNR notice is needed, and wouldn’t need agreement from next of kin.
When we lost my mum, the doctor gently explained that the risks were too great as she was too frail. He did go through other things with us to ask if we wanted them, eg treatment for renal failure. The only thing we had no say on was DNR. It was awful to hear at the time, but I can understand why.
(We did have power of attorney - I’m not sure what happens to the other decisions if you don’t have it.)

I should have said that I don't think family members have much power over keeping their relatives alive or not in care homes. It seems to be mostly the staff and attending doctors who make the immediate decisions about what care they needed. With my mum and mil we tended to hear about it after the event.

I am very sorry my beloved f'n'law had dementia and parkinsons. Just when you think things can't get worse in terms of his quality of life they did. He spent 2 years in a severe dementia unit - sadly eventually dying of Covid without access to medical help the same weekend Boris was receiving first class care for his covid. There was a point when he first entered the home where his neurologist told us things would get worse and recommended not giving him antibiotics so if he ever got an infection he would go more quickly for his own sake. But the reality is if he ever looked like he needed antibiotics we did not want to withhold it because we didn't want to risk him being in pain. He was double incontinent but mobile though - just very confused.
I am guessing if your husband wants to he can speak to the nurses about the question you have posed us. She would have a right to refuse something like antibiotics but with dementia she would not have this capacity to make this decision.

so as long as she is accepting food, and able to swallow, that means she still has some kind of drive to be alive? And we should be keeping her comfortable as long as that is the case?

Yes, this was what happened with my mum. Interventions were for comfort/pain relief as opposed to actively trying to prolong life. At this point a DNR, or your FIL’s wishes to the contrary, are probably moot - it’s likely your MIL’s condition will naturally progress regardless.

I know some people have distressing experiences with loved ones in end of life care, but my own was very positive once I understood the process.

My biggest fear was that she would starve or dehydrate (as I’d read most people in care homes do) and be in terrible distress, but it was explained that this is a perfectly natural process. The body shuts down gently; the desire to eat or drink dissipates so the person is not aware of hunger or thirst. This prevents choking, which would be highly stressful.

My mum was periodically aware of us being there, so we tried to spend as much time with her as we could. And the staff had so much knowledge and experience of dealing with all this, and their kindness and the calmness of the environment meant the whole thing in the end was very peaceful.

I hope your family’s experience is the same 💐

In my DF case - with Parkinson’s and dementia:

he had a DNR, and a living will with his wishes for end of life care.

in the end he faded over a few weeks from talking and eating to refusing to get up. One morning he had a fit or stroke of some kind and carers found him choking. They called ambulance and us.

because of DNR and end of life wishes they knew he didn’t want to be given fluids or food . When we arrived they told us he could go any moment and he wa so not really able to make eye contact over the next few hours. Me and DM sat by the bed all day listening to his breath and waiting for the ‘death rattle’. DM stayed overnight at nursing home (bless them they were so nice to her).

in the event even with no food or fluids he lasted ten days. I had no idea he could go on this long. I’ve since found out that the slower the metabolism the longer you last without fluids :-(

the whole of that time he wasn’t conscious and was really the living dead - because he was in a continuous pump of morphine, some kind of ant- anxiety drug and a muscle relaxant (I think - it’s a standard trio they give at end of life). But he looked horrendous. When he died we were relieved. I was encouraged on here to see him after as he had looked so haunting at the end, and I’m glad I did as he looked less haunting.

im really not sure what would have happened without the DNR - he may have been taken to hospital- but I’m really not sure how much longer he would have lasted. Also medics are able to make decisions and they can decide to end fluids and pointless efforts to prolong things.

I wish you all well - it’s not easy

Genuine question and I am sorry if it is offensive in any way. If your mother had dementia severe enough to be in a home, why did you want her to have life saving treat?

www.parkinsons.org.uk/professionals/resources/occupational-therapy-people-parkinsons-best-practice-guide
This document is a good overview of the challenges of living with PD.
The changes to the brain are profound and quality of life is very much changed.

My dad had a stroke and was in a care home. They were both blind. So although my mums dementia wasn't that bad she needed to go in to the home too. She was still with us mentally most of the time and still had a sense of humour. You might not agree, but it was too soon for her to die.

Obviously I've seen people in care homes with advanced dementia and I wouldn't wish it on my worst enemy. It's undignified and no quality of life. I expect that there's a perfect time for someone with dementia to go - before their minds and personality has disappeared completely. My mum wasn't there yet and they treated her for something she didn't have. She died of something they hadn't diagnosed. I don't think that's acceptable, do you?

My mum had a DNR with early onset Alzheimer's
She stopped eating/drinking and had a chest infection
Antibiotics didn't work and she got sepsis and died from that

It's also possible that her death was the right thing to happen, but the cockups make me uncomfortable. The hospital said she was dying of septicemia. She wasn't.

I'm very pro the NHS and worked in the hospital concerned for a number of years. All my experiences have been positive up till this happened. I just feel the need to go through the events with a medical professional as I wasn't able to be there when she died.

I’m very sorry for all the stories of loss, thank you for sharing them.

Who would be likely to raise the subject of DNR etc with FIL? Does this happen as a matter of course at any point?

I don’t think it has been discussed at all, certainly DH heard anything. MIL did have an elderly medicine consultant (who was key in diagnosing her with Parkinson’s and dementia in the first place) but since she has been in the home there hasn’t been any ongoing contact with him. Her GP is just the one the home works with - no one in the family knows the GP.

When the consultant broke the news of the diagnosis to FIL and suggested that they might need to start looking at alternative living arrangements, FIL apparently reacted very strongly / aggressively against the suggestion that he couldn’t cope with her at home. I can’t imagine he’ll react any differently if someone raises end-of-life care with him. He’s already told me he’s dreading her death, when it comes. I don’t think he’d see it as any kind of blessing for MIL (but I also suspect he’s not thinking about her).

@knittingaddict Thank you for responding and I am sorry for your loss. I hope you get your answers.

My grandmother passed away in a care home recently, she was 102. She wasn't eating, or communicating and just sleeping all day. Doctors put her on end of life care, so they just checked on her, did the necessary care and she passed peacefully one afternoon. Her death certificate said old age, 102 is an amazing age to get to but at 102 giving antibiotics etc to keep people alive is fruitless in my opinion.

At this stage an untreated chest infection could finish someone off pretty quickly. As a carer I’m involved with a family who have put in a complaint with the CQC against the district nurses/doctor who was looking after a service user. I’d reported repeatedly for a week and a half that he had an obvious chest infection, the nurses ignored me and the doctor that eventually came out gave him the all clear. I ended up phoning him an ambulance within hours of the doctor leaving. Within 48 hours of him being taken to hospital he had been diagnosed with pneumonia and passed away. A lot of patients die by next of kin agreeing to withdraw treatment.

Who would be likely to raise the subject of DNR etc with FIL? Does this happen as a matter of course at any point?
When my mother first went into her care home both the head of care/nursing and the GP that they see checked her wishes about end of life and being treated.
I have POA for both finance and health but She has capacity. She was asked about DNR and confirmed that she did not want to be ‘brought back’ but that she wanted to have treatment for any acute issue.
This conversation should be had with your FIL who has POA for health and welfare.

MIL went into hospital then into the nursing home during peak Covid lockdowns, I don’t think anyone was with her when she was moved and it was weeks before FIL was able to visit. When he did go, he was on his own as it was one named visitor only for weeks. There’s no way he would have understood or taken in discussions of this type. It would have to have been done with SIL and it was weeks and weeks before she was able to visit the home. So I think it probably hasn’t happened, but I will enquire gently with DH.

The discussion about the DNACPR happened between my DM (who had capacity) and her GP, and then with the Drs in charge of her care whenever she was in hospital. They all referred to it as "the purple form".

I did have several conversations with her about what it meant - that it was only about CPR (which is not often needed anyway, and frequently doesn't work, and is brutal) and otherwise she would be treated for infections etc. - because she found it frightening. Obviously.

The care home will know whether she already has one, but they may not talk to you. They will probably listen to you though.

@WiseUpJanetWeiss

I’m literally reading about the purple form in Rachel Clarkes book! I’m going to try and get DH to read it.

i don’t think any of these conversations have taken place.