Why do we (as a society) do this?

[Zoopet]

So I've just visited my Mum.(stage 4 Parkinsons)
She's in a very good care home and the staff are great.
She had another collapse during the week and was taken to hospital but tests revealed nothing and she was discharged back to the Care Home.
When I visited this morning she asked for the toilet and after the hoist was used and she had to be completely washed and reclothed due to horrendous diarrhoea I was asking myself why do we do this?
It's a miserable existence for her and due to her Parkinsons she has zero quality of life.
She's still convinced that her partner has gone off with someone else( he died from covid last year)
and we have the same conversations every visit.

No dignity just a terrible physical and mental decline.
I just feel utterly depressed.
I hate visiting but will continue to do so but God it is truly awful.
Just wanted to vent.

I am so grateful to live in Canada, where we have MAID (medical assistance in dying) and you can choose to pass at home.
.
I am so sorry for the struggle your family and you face, it's heartbreaking

We too can get support in dying at home, but there’s a difference in the support required in dying eg from cancer, and the support required where “death” is merely the end stage in a decline lasting years.

We thought we had set everything up for MIL, 89 and recently diagnosed with dementia. She had a POA for health and welfare which was quite specific about not prolonging her life, and a DNR. What actually happened was this.

MIL fell at home and was admitted to hospital. At this point she was mobile and continent. After two weeks in hospital, she was neither. They tried to discharge her like that, even though she had been living alone with minimal support prior to admission. We refused to take her as there was no offer of equipment or a care package and she was then sent to a care home for rehabilitation.

In the care home, she received very little care and no rehabilitation. We were initially discouraged from visiting so she would settle, but were assured on the phone that she was fine. DH went to see her after a few days and found her very unwell. The home staff were evasive about how long this had been going on and whether she had received any medical attention and in the end DH called an ambulance himself. The manager of the care home said MIL needed to go to hospital, in contravention of what it said in her POA, as the care home did not do end of life care! Paramedics said MIL would die on the journey. In their view she was that close to death.

After a stand off, MIL was bluelighted to hospital, where she was resuscitated, contrary to both her POA and DNR and lived another ten days, only receiving proper palliative/end of life care in the last 12 hours. During this time she was on a glucose drip and there were repeated attempts to feed her, although she was only semi conscious at best and had lost her swallow reflex. Staff would not discuss her care with us until we confronted them.

I don't think DH will ever recover from this and I have seen enough to know that I will need, as far as possible, to have control over my own death.

DeedIDo I'm so sorry you all had to go through that, and it's outrageous.

I experienced similar with my mum.

HRTWT. I totally empathize with you OP. I work in A&E. We not uncommonly get patients who’s end of life form says ‘do not take to hospital’ but there they are. Most commonly though we have family members who still want us to treat the patient with antibiotics and fluids as a minimum…..in my opinion this is just prolonging the downward trajectory of misery. Why anyone would want a relative in a care home with severe dementia and doubly incontinent treated to live a bit longer is totally beyond my understanding, and in my opinion, ethically questionable. In 20 years I’ve only had 3 families ask that I keep their relative comfortable and let nature take its course.

Agreed. As a civilised society, we need to legalise assisted suicide as a good starting point. My biggest fear is living "too long".

Agreed. However I'm not sure all HCPs feel the same. MIL's consultant seemed incredulous that we wanted to do exactly that, even though she was effectively dead already! He made DH feel as if he was asking him to kill his mother.

We had to to fight my mum's oncologist who wanted to perform extremely invasive surgery with a low chance of success when it was very very evident it was absolutely the wrong thing to do. Thank god my brother who is a specialist too was able to argue with her but she made it incredibly horrible and stressful for us. Made us wait all day for the paper work, told us in no uncertain terms that we were doing the wrong thing and basically laid a massive guilt trip on us. Then we had to persuade the ambulance to get her to the hospice because they thought she'd die en route. It was utterly horrible and traumatic.

The hospice OTOH were brilliant. Thank god we got her out of that hellhole of a hospital.

Some shocking experiences here, though I'm too aware of them.

I agree with having assisted dying amd generally am rather ragey about what the medical profession do to preserve life and how the ignore DNRs!

Eddie your story in particular struck me. My friend's father is dying of cancer and has refused further treatment. He gave up on chemo as it made him so ill.

His wife and daughter are not happy with his decision and I felt bad for him as he was simply refusing treatment, which he has the right to do, and they were pressuring him to do all sorts.

He takes the view he has had a good life and doesn't want to prolong the agony.

My father refused to let go - it was horrendous. I think my friend's dad, while making the decision for himself of course, is relieved that his family won't endure what mine did.

It's hard to explain how awful this "life at all costs" philosophy is for someone who hasn't seen it so I rarely talk about it. But then it becomes a taboo subject if none of us will speak up. It's complicated.

Hi DeedIDo I'm sorry to hear this. My finding is that this is the first time many of us get to encounter 'the State' - handing parents over to them - and it's a rude awakening.

It seems as if control is everything. If somebody wants a quick exit and DNR, the State seems keen to deny it. If another wants to live and have a chance - as my mother with Parkinson's certainly did - the State will be hell bent on killing them off, by stealth it seemed to me, via deliberate dehydration in the care home.

I know of someone who had your experience, in this case they had DNR but the notes weren't with her when she went into a care home for respite for a fortnight. So they were forced to resuscitate and it was a bad trauma - from what I understand, the hospital basically had to finish her off with a load of drugs, but that is off the record so to speak. The hospital chaplain stepped into ensure it happened, as a mercy.

On the other hand you have my Mum, who had advanced Parkinson's like the OP. Nearly died via care home neglect on several occasions, nobody gets into any trouble ever, put the incidents in the local press and national press, again no heads roll. Came to realise she was on so-called 'end of life' care aka ending life care, via dehydration. Very sinister, care homes had back up via Social Services who seem to be the Gestapo. Saw my local MP Chris Grayling three times over the course of the year, he was all charm but later I suspected he was carrying out surveillance on behalf of Surrey County Council - he's not denied it. Yet Mum was okay mostly, on fork mashable, we could take her out to the pub etc That's why it took a while to catch on that any neglect was deliberate, a variation on the now illegal Liverpool Care Pathway.

Tonight's repeat of Yes Prime Minister made the point - smoking takes 100K lives a year, but think of the money they save in pensions and adult social care. Well, we don't smoke any more so we live longer - the old aren't economically viable unless they get put in a care home for the usual two years, money going to some businessmen who bung it in an off shore shell account and fund the Conservative party.

Eventually Mum died in Oct 2017. For the previous few years my sister and I had to visit her daily to see she was alright, mainly to give her drink. After that, you never trust the State again - not the police, not your local MP, not the Council, not the press who can't run the whole story you find, not the regulators who are actually acting on behalf of the people they're meant to be regulating.

I should add that the old lady who was DNR in the care home did I understand have fairly extreme dementia and was doubly incontinent and in her early 90s I think, so in her case - though I hate to type this glibly or seem to be - her family were ready for her to go when she had a massive heart attack.

It was not the case of someone who had been generally alright at home suddenly taking a nosedive in their health.

I would like doctors and journalists who intone 'we need to talk more about dying' to role-play conversations between relatives and HCPs where the relatives are desperately trying to prevent more treatment and the HCPs are desperately trying to manage impossible situations. Imo it's pointless talking more about dying if you're not talking specifics.

I didn't want to prolong my mum's life. But I could not manage her at home, she was repeatedly falling in pools of her own urine. She ended up going into hospital and is still in a frankly miserable existence 4 months later despite at least some written attempt to stop people 'saving' her. I've now had to have the same conversation about avoiding treatment with a string of doctors and still feel I need to protect her from it. And yet she survived that incident and is not imminently dying; she might live for years in a life which isn't a persistent vegetative state or anything but is still miles short of anything she would previously have regarded as acceptable. And I do not accept it for her. I can't actually do anything except look for opportunities to advocate for her wishes.

She too, will end up smiling and nodding at people, whilst being cared for by strangers. That's not a life

It might not be a life from your perspective, but if she is content why is it "not a life?". My DM spent a few years in a rest home, she had mild dementia so I was lucky as she still knew who people were, and you could still talk to her. There were others there who were worse than her, but in the main they seemed happy, and the care was excellent. I for one would far rather be "cared for by strangers" when I got to that stage than put the burden on family, and the thought of being in a rest home does not fill me with dismay.

@SquirrelG I see this as about different combinations.

Content/stable and no mental capacity: assisted dying never likely to be appropriate.

Sudden medical deterioration and no capacity, but previously expressed wishes not to prolong life: why do HCPs automatically start antibiotics and IV fluids? For what?

My dad is in the last stages of cancer. He has is in pain, doubly incontinent, bed bound and totally doolally for months. In rare moments of lucidity he begs to be allowed to die. My brother and mother goad him into eating and drinking even when he doesn't want to. I hope each time they call me it is to day he has died just so he is no longer in such distress.

@Unescorted

My dad is in the last stages of cancer. He has is in pain, doubly incontinent, bed bound and totally doolally for months. In rare moments of lucidity he begs to be allowed to die. My brother and mother goad him into eating and drinking even when he doesn't want to. I hope each time they call me it is to day he has died just so he is no longer in such distress.

Oh god, I feel for you both.

I've worked in a care home for many years now and I am fully for euthanasia.

I would hope in 40+ years time when I am elderly this is an option.

I would hate to be in that situation. Many don't have any quality of life and just exist. So I try my hardest to make their last few months/ years as comfortable and fun (if possible) as I can.

Some notice at times others don't even know I'm there. It's such a shame

I agree with almost everyone here, but what strikes me as mad is that in some cases it's clear care home residents are just left to live for an eternity even when in pain, distress and so on, even significant dementia, while others it is clear get 'fast-tracked for the morgue' and die unnecessarily early to the consternation of families. There seems to be no rhyme or reason to it.

When officials talk about a 'contestation about death' what they mean is, I think, look it's costing way too much to keep someone alive for the hell of it. It's like they're hoping we start the awkward conversation first - a classic State trick, like holding out on lockdown until the papers, Opposition, health officials and unions are screaming for it, so it doesn't seem arbitrarily imposed - so we have stories of relatives broaching the subject of euthanasia themselves. It almost seems deliberate to ensure that happens, while some families are demonised for taking relatives to Dignitas, or the narrative framed that they'll be pressurising Grandad into making the trip into the great yonder. In my experience it's misdirection - I found care homes - not all, but more than one I experienced - are just killing them off with State approval. This is in Surrey - the Conservative-led flagship Council. Perhaps that's how they keep taxes down.

Sorry, 'conversation about death' I meant.

I cared for my mother in law, with help, who had Parkinsons, so she was able to stay in her own home. It was very sad but I had great respect for how she made the most of what was left of her life, when her world became smaller.

I suspect that those countries would have an incredible system in place. Well that’s what I learnt about how it works in Switzerland. I know that no system is fool proof but it really was incredibly difficult to get the final agreement to go ahead with the procedure. Either way it’s an awful situation to be in. I really feel for you.

Just had a very upsetting visit to mum, she was being moreorless pulled down the corridor by two carers so I could see her in her room. She could barely walk and looked terrified. I wish with all my heart she could be at peace.

Update
My mum passed away on Sunday.
The care home staff were fantastic,
She was unconscious and hopefully not in pain.
Feel a bit numb but glad that she is now at peace.

My MIL has been in a care home for over eight years. She went in aged 90. All of it in a specialist dementia section of the home. She is now bed bound, non verbal and incontinent. She's been in that state for two or three years.

When we visit they say she's doing very well. Such rubbish. She has no life.

DH says to me that they look after her too well. She is in paracetamol and vit D only. We persuaded the Dr to discontinue the statins. She didn't catch Covid.

@Zoopet condolences for your loss although you are right she is at peace now. I hope you have family and friends around you IRL. You will feel numb for a bit. It’s a shock even if you were expecting it. Just let yourself feel whatever you are feeling and don’t be surprised or feel guilty if you feel a little bit of relief that it’s now over. In time you’ll be able to remember more than just the memories of her illness but it can take a while. Sending virtual hugs from someone who has been through similar 💐