To think that we need to have an honest conversation about euthanasia and care costs

[Noras]

So there are some interesting stats published by the Gov about the cost of cares the end of life and whatever way you look at it, it’s expensive. Obviously the most expensive is hospital care at about £400 to £500 per day but also care in care homes is high.Most of that could be avoided with an injection.

I have watched both my parents die and I have been left traumatised by it. My mother died from starving to death due to dementia in a non nursing bed with no pay relief other than paracetamol. She was clutching the sheets and morning for 14 days. My father died of the most gruesome cancer. We nursed him at home but we still had one 24 hour carer at the end paid for by CHC ( he was plus 2 for eg the commode and washing hence we still did it).

Whilst my parents were dying I could not bear to let them go but now after several years I think ‘What on Earth was that?’ With the benefit of hindsight I regret every mouthful of food that I fed my mother. She did not even know who I was and was in a different World but yet she was my beautiful mother.

I regret every time that I carefully measured morphine for my dad because I did not want to give him an overdose

I am haunted by the prospect of getting dementia. I am scared sick of cancer and dying from it as the pain meds never kept uo with the pain. When we just had the pain patches they were always too weak and we were always behind the race to keep up with the pain. When we got the end of life kit, as a relative I was always too scared to give ( I think ) enough morphine to top up the pain patches so my dad would he in agony. I could not bear to let my dad go - it was so painful,

So this is the question; Do we need to grow up and really think about euthanasia?

Over two years of my life were consumed by the impending death of my parents ( I still visited and cared for my mum in a care home despite it costing my dad several hundred pounds weekly as I wanted to care for her).

This lingering is a new phenomenon due to medical advances. I wonder how many of the parents of the people dying from dementia now, popped their clogs in their 60's or younger? Medical advances are also resulting in premature babies surviving, but often with life limiting conditions. It's a really tough one as the fallout isn't on the medical/pharmaceutical complex but on ordinary people in both emotional and financial costs.

My Dad had a tumour that broke his back .He had a tumour in his sinus that grew into his mouth and eye. At the end, his mouth flooded with blood as he ate so that the food mixed with blood. His eyes streamed with tears of blood. He insisted that me and my brothers looked after him. We just about got him to agree to engage with CHC carers after a battle. There were constant puddles of blood on the carpet that I scrubbed up. His nose would haemorrhage blood so the nurse taught me how to pack the nose to stop his having shock

The last few days the catheter had to be taken out as it was blocked - the urine was full of brown blood and the tubes blocked. He could not urinate and was blocked up.

Through all this my daughter would collect my SEN son after school and take him home. When he was difficult she took my place and emptied his catheter and mopped his blood. She was 17. It messed up her A Levels as her mocks were immediately after his death and the funeral after the mocks. They were used to give her her scores and she had a 5 mm kidney stone from the stress when she sat the exams in October. My niece and nephew were also traumatised. No employer is ever going to understand really why the expected A levels she should have got went from A* AA to AAB ( she took another self taught A level after in about 5 months and got an A) The impact it had on her is reflected in her academic dip from excellent GCSES and her First in her degree from a RG.

So again the whole thing was crazy and awful

The trouble is that dementia takes away decision making capacity so you are not going to be able to ask for euthanasia for dementia by the time you need it. It's very hard to write an advanced directive that covers all bases adequately. It's difficult

I fear for my dad. He's 75 and healthy right now but hasn't been the same emotionally since mum died 4 years ago. In many ways he does want to join her although he is not suicidal and still enjoys his life at a basic level. If he gets dementia though I know it will tip him over the edge as both his parents had it and he is terrified of getting it. I think he'd seriously want to end his life then. You can get very reliable diagnosis of Alzheimer's with a lumbar puncture these days. If I ever think he is showing signs he has promised me to tell him early so he can get tested.

I support assisted dying. But fuck me, this is cold:

£400 to £500 per day but also care in care homes is high.Most of that could be avoided with an injection.

Had assisted dying been legal, you already said you didn't want them to die, so would you actually have used it to euthanise your parents? or does it just boil down to cost now it'll be other people's relatives?

I wouldn't support euthanasia if one of the justifications could be saving on care home costs!

You shouldn't have put your daughter in that position.

I have 2 of those ' babies ' and this is exactly what i am talking about. Already this debate has progressed to whether these children even have a right to life. Who are you to decide what a child's life is worth ?

No, we do not " need to grow up and really think about euthanasia", because you think care is too expensive.

Should we just let premature babies die then? What's your cut off for saving them?

To add mine were nor premature but v complex medical needs.

I totally agree. DGM lasted for 5 years seemingly content and healthy except the dementia diagnosis. She literally sat in a chair all day, getting up only to eat at the table, go to bed,,or to have her soiled nappy changed. She didn't do anything or go anywhere, she didn't know who anyone was. She didn't take part in any of the forced entertainment and would absolutely have hated it. Visiting this 'shell' every day was soul destroying for everyone. Had we been able to give her one life ending injection we absolutely would have. She self funded to the tune of over £200k. We know she would much rather that money went to DM but truth be told, we would have given it all to Charity if it would have ending those 5 years at least 4 years earlier. The only winners are the nursing homes in all this.

I think we, as a country, do need a conversation about keeping very premature babies alive at all costs. They often can spend their first year of life in hospital and then remain heavily reliant on extensive care, both physical and medical, for the rest of their lives. We have a mentality where we place quantity of life far above quality. Sometimes it would be far better to let these babies go.

This is why I am opposed to euthanasia. This and the pp talking about people who change their minds towards the end.

Where does it end? Would we allow assisted dying in cases of depression? Long term but not fatal diseases? Disability? Neuro diversity? Poverty?

Where do you draw the line? Why not instead press the government to improve palliative care so that everyone has the support they need to die well?

We've had the usual "lessons will be learnt" when teens die in MH units. In places with assisted dying, teens with depression have been allowed to die. There have been places that haven't followed the law. I'm not convinced that it would be implemented with the supposed safeguards in place, in our shit-show NHS. As the Mother of a adult child with LDs and ASD, I'm worried about asdisted dying. We struggle to keep mothers and babies alive by giving them proper care, because of failures. We can't run our police, fire service etc without extreme bigotry. We slapped DNR on young people while clapping 80+ year olds leaving the hospital during Covid. My experiences of end of life care has been good, we need that nationally.

@Noras your situation was partly caused by you not being willing to let go.

Obviously the most expensive is hospital care at about £400 to £500 per day but also care in care homes is high.Most of that could be avoided with an injection.

Absolutely not and the above quote is one of the reasons why. We shouldn't be killing people because of costs. Where do we draw the line?

I'm sorry your parents suffered but there's no way we should have state sanctioned murder. It's the thin end of the wedge.

I can tell you never had a premature baby.

Fucking sick.

The title of this thread is why people will fight back against euthanasia.

End of life care and the right to euthanasia in certain circumstances is one topic of conversation

The cost and quality of care is a totally separate topic of conversation.

No-one should be able to push someone towards euthanasia to protect their inheritance, its morally and ethically wrong.

One of the problems with dementia (& similar) is the issue of consent - how can a person give consent if they have dementia?

I am in favour of euthanasia. Dementia is a cruel cruel way to go.

This does sound hugely difficult and sad.

For your daughter, I think employers will care about her 1st class degree, not a minor slip in A level grades.

My own daughter did worse in her A levels than suspected after I had a mental health admission under section. Would euthanasia earlier have been a better option so this didn’t happen when she was taking A levels? I hope not.

The other issue is that nowhere in this post do you discuss your dad wanting euthanasia. I cannot believe that euthanasia to prevent someone needing more than a certain acceptable level of care is ok.

This is a very valid point too, and is something we all should be asking of ourselves. Would we be happy remaining in a vegetative state with no hope of recovery. Incredibly sad a baby being born to have a life completely shut inside it's mind being fed artificially and doubly incontinent for years. I'd argue that is cruel.

Quality of life is a far more important thing to me than quantity. Having a grown up discussion with your next of kin and stating this would be a good thing. Not leaving them making awful decisions if you no longer had capacity.

"Where does it end? Would we allow assisted dying in cases of depression? Long term but not fatal diseases? Disability? Neuro diversity? Poverty"
A woman in her 50's opted for assisted dying because she was homeless with health issues and there wasn't housing for her. She just gave up because of social/environmental issues.

https://www.google.com/amp/s/www.spiked-online.com/2024/01/15/canada-has-revealed-the-horror-of-assisted-dying/amp/

My dad died with excellent hospice care and masses of pain relief. I'm really sorry your dad didn't get that. It sounds like you were all let down.

Such an incredibly complex topic and infinitely emotional. I think about this a lot as my DM ages as do me and DH. However, I saw my DFIL deteriorate and ultimately die in our home as he couldn't look after himself. Although the weeks and months preceding that were horrendous and so so difficult for DH, I'm not sure he would have been able to make the decision to end his dad's life, even if legal and humane.

I think it's easy and understandable for us to say if we get to a certain stage then please let us go, however if loved ones still have to authorize that, I'm not sure how many of us could? Even if it's the kindest and most rational decision?

So then it would require another authority, based on someone's wishes they'd made, which I also can't imagine. But then maybe that would be easier. I don't know, I'm rambling!

Cost cutting measure? So this is what a human life is worth?

Terry Pratchett went to Dignitas because he was planning to avoid the end stages of dementia, yet he didn't go through with it. Possibly he put things off as he kept working on his books, then it was too late. How do you decide when it is 'time' if you have dementia? Should other people be allowed do that? Seems like a dangerous step to take.

I am nearly 70 with chronic illness. I don't think it's possible to draw up a 'plan' to include all future possibilities. I think one should have access to proper pain management, for sure. The problem is for those on their own, or with no available family to care for them, won't the time come when they feel pressured to 'do the right thing' for society? It is a long way from 'the right thing'.

Yes it is cold - but it’s not me being cold.

The Government and the auditors did an assessment of the cost of death. It’s in the gov website if you look.

I was horrified to read this a few months after my mother died but now I’m more sanguine and reflective.

The natural tendency of a relative is to want that person to never die but really is that best for the relative?

I mean what was I thinking when I was spooning food into my mother’s mouth and frantically looking around the supermarket for food thst she might eat eg all sorts of breakfast cereal type stuff. I even cooked every dish she ever made me to try to get her to eat. I could not bear to lear her go - how selfish was that on my part? I wanted her to live because I selfishly did not want her to die.

So relatives can’t make that decision,

i genuinely do not believe that the World is full of scheming relatives after an inheritance or indeed nurse / carers wanting to save money,

However rational caring people in a care role eg doctors and nurses can see how futile and traumatic end of life is.

There are dogs snd cats who avoid all this. That is perverse.

Care costs should never be a reason for euthanasia.

Never.

Someone feeling their quality of life is so bad and without hope of improvement that they want to die on their terms I 100% support. I want that for myself tbh.

But hey, you don't half cost a lot, why don't we just give you this and save a fortune...
No.

That's chilling.

As much as I'm ok with euthanasia, it's very unlikely that it'll ever be an appriopriate for Alzheimer patients, who are not in a state to give their consent.

Also, it should never be an adequate response for the lavk or the cost of palliative care. Both should co-exist.
I think for now we should focus on improving quality of life