How long can people live like this?

I believe people should have the choice to end their lives when they want to, though assisted dying and euthanasia remain illegal in the UK.

“Then we need to have a good hard look at our priorities.”

My priorities will always be putting my children first, keeping a roof over our heads and providing for them. My elderly parents don’t come before them.

Can you not accuse me of something I didn't do and still make your point?

At no point did I "shame" anyone. I asked questions for clarification in order to assist with my understanding and responses.

You should be shamed for your conduct towards me. Do better.

My mil (90) passed away two weeks ago - her last two years were a complete misery - we did what we could but what a way to go. She wanted to die didn't tell family though. Everytime I have visited my mother in a care home or hospital or rehab unit I have left in despair - they have no life, waiting to die - it's terrifying and I certainly don't want to be in the same position. There is no dignity in being doubly incontinent, not being able to speak, having no control over your body, no appetite, no interest in the world around you. We don't talk about it and only those who have cared for the elderly are aware and even then look what happens when you do you get people like @FashionPassion rocking up shaming you into silence.

My grandfather very sensibly started to refuse things like flu vaccines that care homes will give automatically. He wanted to go.

Care homes perpetuate this problem. They are kept very sterile which reduces infections, hover over patients ensuring medication is taken regularly, provide pureed food etc to keep getting calories in etc. Better to stay at home and allow the decline - outside a care home lots of older people will quit eating, avoid taking meds, avoid vaccines & quickly get lots of utis, chest infections etc.

Families need to have the conversation with medical staff about the Treatment Escalation Plan. Late DH and I discussed it and he decided he didn’t want anything done. No CPR, no artificial feeding, no treatment of chest infections. He did allow them to give him antibiotics for a UTI but that was six weeks before he died. I kept our copy of the TEP, all in red. I appreciate it's not possible where someone doesn't have capacity.

Goodness me. Your compassion is astounding. The work shy are also ‘bankrupting’ the country.

Yes, where would it end, these burdens we should just dispose of?

Homeless people, asylum seekers, disabled people, stupid people and under class people are all quite the burden on society and the state aren't they?

So can disabled or ill people of any age - should they do us all a favour and die too?

Yes In my admittedly limited experience, unable to do anything herself and doesn’t recognise anyone doesn't automatically mean 'no life'. Each of my parents, in their different ways, entered a kind of dream world made up of memories, fantasy and snippets of present perception. It was rather lovely once you let go of expectations.

And this hits the nail on the head. Their bodies aren't able to go on existing. The only reason they're still here is because of medical intervention.

My dad died in 1995. He was admitted to a nursing home at the beginning of the January and passed away at the end of the February. When he was admitted our family doctor asked what form of medical intervention. We agreed for comfort. This meant he didn't get any antibiotics for a chest infection. This infection developed into something more serious, he slipped into unconsciousness, basically died in his sleep with family beside him. Excellent care at the nursing home, not skin and bones, not deaf, not blind, still able to eat. But he was ready. He said he was ready.

By 2015 the whole approach to nursing care had changed. One of my team at work, mother late 80s, went to hell and back. Constant medical intervention. Multiple hospital admissions from the home. Mum begging to die. Eventually, she did, deaf, blind, totally immobile, and what actually killed her was starvation. Despite the feeding tubes and drips and god knows what else, her body had shut down and she couldn't process anything being pumped into her. Watching her mum, in constant distress, slowly starve to death nearly destroyed my colleague.

I do not understand how the principle of 'do no harm' changed so drastically 20 years.

This is why I’m all for assisted dying. Mil has dementia and has done for at least 8 years. She’s in a home and unable to do anything herself and doesn’t recognise anyone. What kind of life is that? DH and I have both said we would hate to be like that. We should be able to choose to live when we reach that that point.
As a relative you’re stuck in a grief limbo. They’re still there but in body but that’s literally it.

Profoundly disabled children with incurable medical conditions can also become a significant burden on their families.

Life is much stronger than people think.

My mother lived to 104 and her last couple of years were like this. She was lost in a fog of timelessness. No illness carried her off. Eventually her whole biological system had simply had enough, and gradually shut down. It was very peaceful, and we were happy for her.

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.

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

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

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

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.

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

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.

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.

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.

Is this a joke?

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

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.