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.

@dontsaythj it's not something I've looked into the statistics of personally, just that was the main take home statement from my medical ethics teaching of my undergraduate degree in regards to human euthanasia.

It's a shame that there are such unscrupulous people that would encourage someone for personal benefit but of course there are.

I am sorry for OP having to watch the decline of there parent. It's very hard to find any solace in such situation.

I would absolutely hate to be in that situation,I said to my family let me go.
Don't let me live the remainder of my life in pain and confused.

My mam died at 57,and I read posts like this and I'm glad she didn't live out her remaining years in pain.

I totally agree, OP. It's fine to say just bump me off if I get like that but it's not that easy in reality. Living wills with the option of deciding in advance on a point of euthanasia would be my choice.

@Longingforatikihut

I see. It's clearly a concern, but nevertheless I believe that rather than prohibiting euthanasia due to that, the onus should be on designing a system with appropriate safeguards so that no one has to endure prolonged suffering and loss of dignity.

[quote Longingforatikihut]@dontsaythj it's not something I've looked into the statistics of personally, just that was the main take home statement from my medical ethics teaching of my undergraduate degree in regards to human euthanasia.

It's a shame that there are such unscrupulous people that would encourage someone for personal benefit but of course there are.

I am sorry for OP having to watch the decline of there parent. It's very hard to find any solace in such situation.[/quote]
But that's a bit like saying abortion should be illegal to protect against coerced abortions. Which is an argument that used to be made against changing the law.

It doesn't stand up to scrutiny and it's an immoral position to take.

I think it is also important to note that this idea about euthanasia being abused is not evidence-based and is pushed by people holding a very particular ideological stance. One of those is the hospice movement (which is ideological) which pushes back against assisted dying because it sees it as a threat to the success/continuation its own movement! Truly disturbing - to torture people for your ideology.

It is such a contrived "ethical" position to take this black and white view that anything that hastens death must be avoided in all circumstances and that life must preserved until the last miserable moment regardless of cost.

There is nothing ethical about that, it simply reflects a particular ideology born from western medicine and our culture's fear of mortality.

I hope that future generations re-discover their humanity so that they look back at such so-called medical ethics in bafflement.

I couldn't agree with you more. I think anyone against or on the fence should go and work in a dementia ward for a week

@WhoWants2Know

I know it's possible to make advance decisions about care, and to refuse treatment, but I'm not sure how far it extends.

That's literally as far as it extends. You have the right to refuse treatment, nothing more.

There are always people on threads like this who seem genuinely surprised to learn that no, consensual euthanasia is not an option for them. No, they their doctor can't give them anything to speed their death along. Yes, their relatives will be investigated for murder if they assist.

I do wonder how much of the population understands the true position or the current level of barbarity being inflicted on people every day at the end of their lives due to our laws and so-called medical ethics.

I suspect if that was better understood there would be more vocal support for a legal change.

Two of my sisters are nurses. Mum developed dementia, lived at home for years with care. I remember going to see her - one of the conversations went:
Her: Who are you?
Me: I'm your daughter, mum.
Her: Are you sure?
She came downstairs one morning, must have had a UTI, legs stopped working, and within two days she was in a care home. She was 88. My sisters very specifically said: yes to painkillers, yes to oral antibiotics; no, you will not admit her to hospital and no, we do not consent to intravenous antibiotics. She died after 16 weeks there, she was okay for a couple of months, health diminished, and I suppose it took her 3 weeks to fade away. So death by omission, I'd have preferred her to have something to hasten her path. The care home staff were generally sweet and caring, but it wouldn't be the way I'd choose to go, if I could.

As the saying goes, we wouldn't treat a dog like this.

Sounds awful. I agree with a previous poster that we have become obsessed with the quantity of life, rather than maintaining quality of life. When it comes to medical care in old age, we need to be mindful that just because something can be done, does not mean it should be done.

My DGD had a car accident in his early nineties and the health professionals moved heaven and earth to keep him going. After the accident he had no quality of life although he did stay at home and lived until 99. It would have been a kindness to let him pass away in hospital.
Wasn't pneumonia meant to be an old person's friend ? Now it seems we want people to be immortal, and ironically because we're all living so much longer, the non retirees have to work to late 60s to pay for the costs of funding the retired generation.

I have 1 remaining Grandparent, other 3 (1 only 60, 1 72 and 1 83 but not insanely old) all died very suddenly and unexpectedly from either a heart attack or brain aneurysm. I tell myself that I'm glad they died this way rather than suffered for a long time.
I work as a carer, currently as a home carer but used to work in a home for residents with dementia.
We had an 83 year old lady who had no grasp of reality whatsoever, she'd walk around the building crying and taking her clothes off, trying to get out of fire exits, found her stroking the wallpaper in her room, conversation was totally nonsensical and sometimes it was hard not to laugh at what she said, but it was also very sad.
Had some other residents the same, no grasp of reality.
I currently look after some people who are 100% reliant on carers to get them out of bed, wash, eat etc.
It is sad but I don't know what the answer is. I do think those with mental capacity should be given the option of assisted suicide if they desire it.

I agree OP it’s heartbreaking. My mum is in a care home and has been for the last 5 years. For the last 9 months she had been totally bed bound, incontinent and spends all her time asleep. She has zero quality of life and most of the time doesn’t even wake up when I visit. It is so so cruel, I wish every day she would peacefully slip away, she is alive but not living, it’s so upsetting.

If you want to avoid this for yourself put an advance decision in place with your wishes clearly stated. Compassion In Dying have a good free version you can use.

Also make someone your POA for health and brief them clearly and in writing.

To be really useful it needs to be detailed and quite harsh. Mine says words to the effect of if no quality of life/cannot recognise children/husband then withdraw all care, even for reversible causes, other than palliative care/pain alleviation. Comfort at the expense of extension of life. I’m hoping for a swift bout of pneumonia to carry me off.

It doesn't have to be euthanasia though - you could have more pragmatic decisions made about how to manage infections and other illnesses in those towards the end of their lifespan with very low quality of life.

@MasterGland

Sounds awful. I agree with a previous poster that we have become obsessed with the quantity of life, rather than maintaining quality of life. When it comes to medical care in old age, we need to be mindful that just because something can be done, does not mean it should be done.

I think Covid was the ultimate example of this. Essentially imprisoning people in care homes and denying them any contact so that they could live those shut-in, miserable lives for a few months longer just seems so fundamentally wrong.

Whenever bills come up in Parliament about assisted dying our MPs (who are supposed to represent us) invariably vote them down.

There is great public support for assisted dying, and other European countries have this and the system works very well. What is even worse here is that if you have, for example, a parent who has expressed a well-thought out and well-reasoned wish to die, and for whom their is no prospect of recovery and a poor quality of life, for you to take them to, say, Switzerland so they can end their life peacefully and with dignity lays you open to being arrested and prosecuted on your return.

The problem - as so often - is that MPs are not representing their constituents wishes when such bills come up.

I only recently had experience of the end of life programme in hospitals and it was truly awful. I also read a few posts from others that went through a similar experience. Why just wait for someone to starve to death when you could end it sooner.

To add to this, and to echo a poster above, when my own father was at end of life, he had had cancer which had gone into remission then returned and there wasn't a great deal of treatment available to him. He had a fairly miserable quality of life and so, by extension, did my mother.

He was taken into hospital with pneumonia and when I was by his bed he caught my eye and he was clearly terrified. My own opinion is that he was frightened he was not going to be allowed to go. When I was talking to the registrar in ICU about the situation, my exact words were "I don't expect, or want, you to try too hard - I think it's best if nature takes it's course as long as he is not suffering". They agreed, thankfully, and he died overnight. Of course, I was very upset, but he'd had a good life and at the end of the day I think that's all any of us can hope for.

This is a really good point OP.
Why are we so backwards compared to Switzerland?

@Turquoisesea

I agree OP it’s heartbreaking. My mum is in a care home and has been for the last 5 years. For the last 9 months she had been totally bed bound, incontinent and spends all her time asleep. She has zero quality of life and most of the time doesn’t even wake up when I visit. It is so so cruel, I wish every day she would peacefully slip away, she is alive but not living, it’s so upsetting.

I'm truly so sorry to anyone in this sort of situation. It is utterly heartbreaking

If you feel strongly about this issue, please consider joining Dignity in Dying www.dignityindying.org.uk/

Dignity in Dying also give free advice on Advance Decisions to Refuse Treatment. www.dignityindying.org.uk/

It's a very very delicate matter - it's hard enough getting older relatives to accept care and set up LPAs and generally trust the younger generation to help - and paranoia in dementia ("they're POISONING ME / stealing my money!!") is already horrific to deal with.
Imagine what a poorly drafted assisted suicide law would do... aaargh.
The worst cases are where people lose capacity and I'm not sure you could have any legal assisted suicide in that case - how on earth would it work?

It's hideous and awful and I wouldn't necessarily say no to some sort of change, but I would ALSO like to see some sort of German-style compulsory care insurance (copied from an already existing, more or less functioning system, rather than a square reinvented wheel).

Agreed. My mum's a dementia carer and this is how they describe it at her work: Imagine you're on a coach trip with all your family and friends, but every time you look around, you notice one of your family/friends has been replaced by a stranger and is insisting they're that person. Then the coach takes an unfamiliar road and suddenly you don't have a clue where you're going and recognise nothing, but everyone is just smiling and saying it's fine.

My grandma's been living in a care home since covid began, and with great compassion I don't mind saying that I don't know why they put so many barbaric restrictions on them covid-wise. It's not a lifestyle I'd want to prolong.

@MysterOfWomanY

It's a very very delicate matter - it's hard enough getting older relatives to accept care and set up LPAs and generally trust the younger generation to help - and paranoia in dementia ("they're POISONING ME / stealing my money!!") is already horrific to deal with. Imagine what a poorly drafted assisted suicide law would do... aaargh. The worst cases are where people lose capacity and I'm not sure you could have any legal assisted suicide in that case - how on earth would it work?

It's hideous and awful and I wouldn't necessarily say no to some sort of change, but I would ALSO like to see some sort of German-style compulsory care insurance (copied from an already existing, more or less functioning system, rather than a square reinvented wheel).

People can express their wishes in advance.

That would be one way.

Of course a poorly drafted assisted dying law is not what anyone wants but other countries have assisted dying and it works well so there's nothing to say we can't basically copy their template. It is also referred to as assisted dying, not assisted suicide.

For myself, I would say that if I am lucid but in a poor situation either physically or mentally, and there is no prospect of recovery, I would want things to be ended. If I am not lucid then I would want instructions that preserved my dignity. I've spent my adult life being able to look after myself and I view with horror being in a situation where someone has to push the food in at one end and wipe up at the other because I'm incapable of doing this for myself.

It's a case of quality over quantity. If you don't want it, fine, don't have it - but don't push your choices onto other people.