How long can people live like this?

[HoppityBun]

This might seem callous, but I don’t mean it to be. The thing is, I’m bewildered about how long elderly, bedbound people in their 90s can continue to exist. I’ve got several relatives in this situation. One I know wishes that she had died several years ago: I know because she says so when her children aren’t around. One of the other others, actually it’s hard to tell but she focusses on the next meal, or tea, or sweets, and seems ok. Has a few UTIs and once had a very low breathing rate but was revived. The other, seems to be ok, but at other time seems to be sad and has twice commented that they “just wanted to be all over“.

They’re all in nursing homes, all mid 90s, all bedbound and I just don’t understand how it is that they continue to survive when they are not eating much and not getting any exercise. This has been going on since 2020 for one of them and 2-4 years for the other two.

It seems extraordinary to me and, to be honest, it’s getting family members down. I suppose it’s anticipatory grief, which we’re all warned against.

I’d be interested to know because the way things are going they could all live for another five or six years it seems to me. Gradually declining and getting thinner and paler, but just sort of existing. I don’t want that for myself and I hardly recognise them when I look at them, for the people they used to be. Has anybody else come across this? It’s particularly extraordinary because they’ve lived lives that I would have thought are contrary to all we told about healthy living. Granted, none of them ever drank or smoked, but none took any exercise that I remember. Yet still they are here.

How can the body go on existing?

We have to focus on quality, not longevity.

You can refuse to let them have antibiotics and put them on a 'pain reducing' path, so with a UTI - they just get pain reduction.

I honestly think we keep people alive, and I do wonder if it is for profit, it is certainly not for life quality.

Poster has their own agenda, don’t worry about it too much.

My dad asked me on more than one occasion to help him end his life, it isn’t about wanting to make it easier for people around them, or about us waiting for them to die…these are people who want to die. They’re old, frail, in pain…they’re basically dying an incredibly slow death, often trapped in their own minds at the end (my dad was). It is really sad and unfair that they have to live that way when they don’t want to.

Killing them without their consent is not the answer to that. If society starts saying it's fine to kill people once they're perceived as a burden, where does it end?

(And I know you didn't say we should kill them, it's just difficult to see where else the conversation could lead, once people start talking in terms of people being burdens who live too long.)

That's an interesting comment. You seem to be saying that nasty people should be prevented from spending their own money on their own healthcare.

Does this mean you'd like to see an old woman forced to die early and painfully, so the children she failed as a mother can get their hands on her money? Seems like a twisted idea of justice to me. What's the price of a good mother, and how would blood money have improved their long-gone childhoods?

If that is the reasoning, I'm curious as to how you feel the adult children of abusive mothers without money should be treated.

We don’t talk about medical interventions, quality of life, withdrawing treatment, advanced health documents (?) enough. The legal documentation is too lengthy, and too expensive.

There should be regular programmes, The One Show and breakfast tv etc should have bits every six months, get people talking about it like it’s normal, not an ‘unpleasant’ thing to talk about. When interviewing celebrities, ask them what they think, let it become something in everyday conversations.

Otherwise it’ll carry on, elderly people with no quality of life just suffering.

And people saying ‘ooh look at Margaret, isn’t she wonderful?’ And Margaret cannot see enough to read or watch tv, cannot hear enough to listen to anyone, is lonely, no children, husband died, niece too busy, nephew far away, and she just wants to close her eyes and fade away. And we are falling over ourselves to ensure she lives as long as possible. Why? It’s cruel.

I knew a person who suffered very bad health and was put on tbe pain reduction pathway which was basically doses increased daily with no food or water until she lost consciousness and died.

I also knew a person with terminal cancer who made all the necessary arrangements and accidentally took a fatal overdose of morphine when it got too bad.

It is quite normal for people to want to die in their own homes while they still can. Sadly this option is often taken from them.

Except you've just described two cases where this option was exercised.

I recognise that it is more difficult than it used to be, for which we may thank Harold Shipman and a few subsequent 'healthcare' professionals who took on the power of death rather too willingly. I know this is under Parliamentary review and very much hope they'll arrive at a set of workable but safe protocols. There's still some compassionate scope for doctors, though, as evidenced by many people's experiences including my own mother's.

It should be noted that the vast majority of patients 'put out of their misery' by doctors acting illegally are older women. It looks like an unused vagina makes us even more worthless than a redundant penis. Plus ça change ...

"It should be noted that the vast majority of patients 'put out of their misery' by doctors acting illegally are older women."

You don't think it's because men habitually pop their clogs at a younger age?

No, they pop their clogs in similar fashion.

Of course not. But we can avoid suggesting that the lives of those doing the support work - who are indeed affected - are more valuable than those who need the support.

What about the ones who are in constant pain, discomfort or just plain bored, unable to move, sore from existing. Some want to go, I know I will. I wouldn’t want to spend a decade in that condition.
My aunt is in relatively good health, married, she’s 90 but she’s said she’s had enough, she’s tired and waiting to go. I think people should be able to choose, not kept alive because it’s more palatable.

With apologies for my bluntness, your aunt could deal with this herself if she was deeply serious about it.

I may as well add that, 20 years ago, I'd have said the life I lead now would be intolerable and would've entertained the thought that I'd rather not live like 'that'. Turns out it's okay. Objectively, I don't like it. But I am living it - and would rather this than have no more tomorrows, ever.

No flippin' idea why my reply was hidden!

I can't be bothered to submit a query - will wait and see whether it reappears. It says something, though, if fellow posters are offended by the idea that choosing death for someone else may not be morally desirable.

Have you any idea how horrific being starved to death is? Because that's what happens on these end of life pathways.

My granny has moderate, and acceptable, quality of life, until she was about 91. She had refused to go to the doctor for quite a long time, she she had sometimes had out the doctors to her house but she hadn't had hospital referrals or anything like that. She was housebound, but had nice food made by her daughter, could watch telly, and had her marbles. She was in pain but relatively independent.

When she eventually woke up one day struggling to breathe at the start of her death she was clear she didn't understand ambulance want an ambulance. We didn't call one. But then we went round and round the system and basically we couldn't get a doctor to come out and see her from her practice and they said they wouldn't come without doing an ECG. And they said they couldn't do an ECG without an ambulance. So then the ambulance came out, and the ambulance immediately wanted to admit her to hospital.

We tried to have a discussion about this but were made to essentially seem like we were trying to behave completely immorally by not wanting her to go to hospital or I worrying that she was going to go to hospital and then be stuck there for weeks and weeks. They were extremely negative about what would happen to her if she stayed at home. So off to hospital we went.

Then we got there and she was stuck in hospital for weeks exactly as we forecast. When she came out she was discharged to a nursing home. There she was pretty close to bed bound and after a few weeks became actually bed bound, after a fall.

She was begging us to take her to dignitas but it was obviously too late by then. The care home were utterly baffled why she didn't want to live. They said they couldn't understand why she was so depressed and kept suggesting she needs to go on anti-depressants. No if you're almost deaf, you're going now blind as well and your bedbound, it's not exactly a surprise that you're going to be miserable. No, you don't need antidepressants. What you need is to no longer be alive.

She was very clear on that and made a decision to stop eating. But that was also very unpleasant for us and for her because she actually had to do that for some time before she died and it wasn't the sort of stopping eating at the end when you're already actively dying. It was stopping eating before that point to get to the point of actively dying.

Then even then it was a struggle to get painkillers and to get you know a situation that made her life a bit more bearable. I was really surprised how difficult it was to get a decent pain killer regime for her. The doctors were worried that the drugs would be too much for her.

We got lucky, that whole process only took a few months. So she didn't suffer terribly for long. But they were quite ready to keep treating her. They were talking about pacemakers and all sorts while we were in hospital.

For another elderly relative they lived in a dementia based hell for 5 years, and will have cost the state probably £400k to enable them to endure an immense amount of suffering. I hear people saying it's distasteful to discuss the cost of this, but that is an exorbitant amount of money to essentially torture someone by keeping them alive when they didn't know where they were, who they were, who their kids were, who their partner was, who screamed regularly and constantly due to their distress, whose skin was so fragile the sores went down to the bone.

There has to be a different answer from this. I was amazed how, when we were behaving in the way all the NHS staff I know say they want relatives to (accepting their relative is elderly, taking constantly about quality of life over quantity, asking if additional treatment was the best thing for her) how we were strongly implied to be behaving inappropriately because of that, and how instead we should be Treating Her More. If that's what's happening to us, presumably it's happening all over the country.

Dying patients usually refuse food. It shouldn't be withdrawn, however - simply not forced on them. Hydration's another matter. It's complicated, but .. "Panel members, lay and clinical, felt that removal of hydration inappropriately was a terrifying prospect"

For anyone interested, this is a detailed review of the Liverpool Pathway. Pages 27-29 deal specifically with nutrition & hydration.
https://assets.publishing.service.gov.uk/media/5a75153340f0b6397f35d87d/Liverpool_Care_Pathway.pdf

Is this a joke?

Yes it’s awful. And the ones with dementia suffer even more. Every time I’ve visited people in hospital there’s someone there with dementia and some kind of infection. Their body isn’t really compatible with life but they’re being artificially kept alive with antibiotics and medical care. It’s also a natural process with old people who are at that stage to refuse food as part of the process of dying but we artificially feed them against their will. Just because some of us don’t like the thought of death and want to keep people alive past their time as a result.

I think it’s cruel. Even my cat stopped eating and the vet kept wanting to treat her but it was her time and she was ready to go.

Obviously you don’t leave someone in pain and discomfort but if they refuse food or don’t want medication they should be left comfortable with pain relief and sedation until the natural process of death occurs. Anything else is really unkind and selfish. And no it’s nothing to do with being a burden or disabled children. It’s to do with accepting the natural process of dying at a time when the person wishes that and not artificially prolonging life.

Unfortunately OP this stage can go on for many years. Especially if you have a family member like Fashion who demands aggressive treatment and feeding against their will.

This thread is why the assisted dying bill can never go through. I’m not sure if you’re all worried about your inheritance or feel put out by having to pause your busy lives to spend time tending to the parents who cared for you all your lives.

Eye opening indeed. Watch your backs elderly parents, your children sound incredibly resentful at you being alive still.

No it’s about people being forced to live against their will. This isn’t people wishing life, this is people wanting to die at a time when their bodies are ready to die. If you haven’t seen it you have zero idea. It’s harrowing.

It’s not without their consent though. In many cases it’s forcibly keeping them alive without their consent.

I'd like to hear from some experienced palliative, hospice and nursing home carers on their view of patients whose families view them as 'ready to die'.

I'm not assuming anything here. I'm saying it would be good to get a perspective from HCPs. My experience is limited to my parents, both of whom were well cared for and understood by the professionals. They did not hasten death but knew when it was coming, and changed the treatments accordingly. I'm open to hearing this doesn't always happen and/or is done wrongly. So far, though, all I'm hearing is frazzled family members wishing their elders would die sooner.

DNR, respect forms, refuse medication, refuse annual vaccinations.

It’s what I’ll be doing, when appropriate.

Nope it’s.about quality of life and not existence! Too much intervention when life is naturally coming to an end.

Deciding not to administer fluids to a person who is actively dying so as not to interfere with the natural process of the body shutting down is morally very different to refusing to give fluids to older people because they're old and someone thinks they'd be better off dead.