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).

I think we, as a country, do need a conversation about keeping very premature babies alive at all costs.

And this is completely ridiculous. You are literally putting a price on a human life. Outrageous.

I had this very discussion/argument with a neghbour of mind nearly 30 years ago. Her mother was mid stage with dementia. She would regularly mistake me of her estranged son. I would play along and the old dear was perfectly happy. She would go to bed thinking her son lived next door. Her daughter said this was a bad thing and I should always put her right. To this day I still believe it better she was away with the fairies feeling happy.

What you and your family went through was shocking, but surely the fault lies with your father? My DF would never in a million years have wanted me to care for him. He actually died in hospital, but if he hadn't he would have chosen to have gone to hospice care rather than expect me to look after him. My DM died while in a care home, but she would haven't wanted me to be her carer either.

My grandad died in 1983 at home. The doctor was called, he told my gran and her kids to say goodbye then went into the room. When he came out he was gone..

It happened often back then my gran said

Have you seen people in the last stages of dementia, unable to swallow, too weak to sit or stand?

The frequency of comments about dementia patients not knowing who people are, or not recognising family members, makes me wonder if the relatives feel their elders are pointless once they forget who their grandchildren are!

@Needanewname42, I'm sorry your grandmother wasn't given adequate nutrition. Surely she should have been? 😢

Personally I don't think it is thinking our family are pointless due to forgetting who we are or names. If that's the case I suspect most parents never mind grandparents need help, given the amount of names I have heard shouted before they land on the correct one.

I think it is more a consideration of empathy. We look to them and consider how we would feel in the same circumstance.

Thankfully, @ATenShun, dementia care has caught up with your compassionate common sense. Sounds like you gave comfort to a confused old lady.

I can see why the daughter was uneasy about you "impersonating" her brother but ... it's more like playing along with a child's make-believe, isn't it?

This! Beautifully put thank you.

I do think a major hurdle is religion/taking ones own life into ones own hand goes against most faiths. So much for living in a secular state.

There is a (an Australian) podcast I listened to as Australian states were struggling with legalising VAD. I was in awe at one lady's hurdles to access VAD (voluntary assisted dying) she was in her 40s absolutely riddled with stage 4 cancer and she need her oncologist to sign off on VAD. He wouldn't, she flat out asked why not and his response was because that would mean he had failed as her oncologist. It wasn't about the pain his patient was in or the pain she'd face as she deteriorated but all about him and is ego.

The PP doesn’t mean financial cost in this case, she means keeping babies alive regardless of the likelihood of disabilities caused by their prematurity.

I completely agree

People concerned about dementia occuring in their future should really bone up on dementia prevention. There is a lot that can be done, via lifestyle and diet and exercise - addressing modifiable risk factors.

I am all for voluntary euthanasia

Not sure why people aren't really?

Religious reasons?

Well yes. But there’s stages to that also. And there are people who live fulfilled lives who are unable to stand/ support themselves. Also people who are mentally sound but suffering dysphagia yet still wish to carry on.

One of the gentlemen I know well is now chair bound, requires modified food for dysphagia, and is pretty much locked in. So he’s certainly nearing end of life but not at end of life stage yet.

Last week they were trialling his own iPod tracklist and he was ‘unlocked’ for periods. Could communicate / animate again (not stand but just have facial / eye awareness). Had what appeared to be joy.

Whether that’s just joy at the relief of being freed from a prison of sorts for a temporary minor respite of hell I have no idea. Or he might be quite enjoying himself in there listening to his family, the birds, the sun on his face. Who knows?! It’s a massive issue. I have no idea and I think anyone who says they do is projecting. Some people really do want to cling to any semblance of life. Others don’t and wish to die quite early on when they are physically and mentally going to go on for a good decade - but then they might just be depressed?! I have seen that too. Absolutely miserable ill tempered residents just turn incredible corners and become so joyful and at peace.

And this is completely ridiculous. You are literally putting a price on a human life. Outrageous.

^

Same could be said for the elderly??

How do they do that when she could no longer swallow ?

I can't remember if she had a spell on drips but dementia is evil.

It's not just about not knowing DGC it's thinking DD was her mother, DH was a complete stranger.
Her first 3/4 years in the home she had some sort of quality of life even if she would talk nonsense, But she was happy in her world, would listen to music etc
But the last 2/3 of years of her life she had zero clue, could barely talk, not even nonsense, and didn't seem to get anything from music any more.

I suspect we both have the same thoughts on dementia care (or any other end of life care). While that old lady still had control of her bladder and bowels (for the most part) playing along with whatever she was thinking at the time to make her happy was no hardship to her or me.

While she was able to feed herself, remember to chew, remember to swallow. Of course her life has merit.

Once those abilities have gone, well I'd be looking at it with empathy and asking, would I want that for myself.

First, people saying we should consider euthanasia prem babies can fuck right off, then fuck off some more. Noone knows what path they will take. Dd8 was born very early, unexpectedly, and came out blue. Cue incubator, then CPAP, then oxygen 24/7 for 9 months, tubefeeding, then when she was eventually allowed home (on her due date, still on oxygen, remaining so for months) she was repeatedly hospitalised with bronchiolitis. Looking at her now, she is no different to any other 8 year old and in fact far less of a fragile little waif then most of her peers. Functioning in every way absolutely as a typical 8 year old with zero back history.

Same message to those discussing young children with SEN...DS11 was clearly very badly delayed from a few weeks old. We have had SO much intervention and support from so many services. The paed told us clearly at 2, when still unable to sit, roll, babble, stand etc that they had absolutely no idea whether he would ever be able to do those things. He is now the oldest in his mainstream school, having delayed his start by one year, and other than dyspraxia, a slight issue with some sound pronunciation, and ASD traits, is functioning as any other child in his class.

Except in very sad and specific circumstances, noone knows how littlies will progress or what they will go on to achieve. That's before we even get onto medical breakthroughs, gene therapy etc.

We need to completely separate those issues from euthanasia and assisted dying. I actually think it should come to be allowed but with incredibly stringent criteria - and SEN or prematurity should be nowhere near the list! But it's terrifying reading how some would like it to be. This for example:

" First opportunity 40 (maybe), repeat after 10 years, again after 5 years times 3, and then offered the chance to update annually after that."

What a massive, massive form of insidious coercion and pressuring! By the age of 65, you have been asked five times if you want to be euthanized (in certain situations) and then asked again annually. So by 80, you have now had to consider your demise twenty times - surely that's going to make you feel like you should say yes, and that it's the right thing to do, and also now maybe people will stop hassling you about it.

The more I read the thread, the more I agree with an early poster who said something along the lines of she agrees in principle but doesn't think we can be trusted.

We already have some elderly people who don't feel deserving of some of the newer expensive treatments - purely based on age. Asking about euthanasia repeatedly will just drive that message home .....very slippery slope indeed. Needs very careful consideration and contemplation. And always from the perspective of the sufferer, not through the lens of those who may feel uncomfortable from watching real or imagined suffering

Yeah, I don't think that goes far enough. Refusing treatment isn't the same as taking an action. I want to be able to say I want to end my life (active action) if I am ever at a stage which I believe does not allow me to live with dignity. That is solely my measure for myself. I don't care what others think is ok or that care staff do xyz activity every day or that I could live for years in that state. I do not want to live like that. I should be able to choose, for me.

Did both your parents die at home, OP, that's the only way I can understand how much hands on care you personally provided for very extended periods.

Most people in countries like UK don't have that extensive caring at home experience for parents in terminal illness health.

OP's story reads like her dad emotionally blackmailed her into caring for him.

Thing is, if you're thrust unexpectedly into that predicament, you will be quite unwell in hospital. Refusing all life-sustaining treatment should see you off pretty quick.

If you've developed an illness that will likely result in your unwanted predicament, you've got time to do the job yourself before it gets that bad.

Euthanasia is a very slippery slope. The poor, vulnerable and those with no family support will have no where else potentially.

I think the whole argument around this is a bit back to front.

Dementia is the main cause of death in this country.

In 1920 life expectancy was 56 for men and 59 for women. Thanks to the advances in medical science it’s increased by about 25 years. That’s made possible in part by the in geriatric medicine which keep people “alive” in the sense they’re still breathing.

We should be questioning those who profit from this - the pharmaceutical companies and the care homes. What is the point of this kind of advanced care? People have to sell their homes to pay for it but how does it help them? Should we keep people alive just because we can?

I also think everyone in the country should be sent clear information about advance directives on their 60th birthday. Once dementia sets in you can no longer sign an advanced directive. (
compassion in dying ) You can specify that you will accept pain relief but nothing more in an advance directive.

It should be part of health lessons at school that the doctors do not tell you what to do. They advise you. Your body, your choice. Patients should thoroughly interrogate their doctor at consultation as to the side effects of any drugs, the downsides and risks of any operation and what, if any, alternative treatments are possible. Death is the only certainty in life and we should teach people not to be scared of it.

Due to my own health, I do support assisted dying. It’s not fair that people have to go abroad to do it.

I hate the thought of being kept alive long past the day I want to be here.

But, it should never be based on cost.

It should be about choice, after discussions with family and doctors. There would need to be many safeguards.

If we go down the cost route, then, eventually, someone would want to apply it to babies born very disabled, who are likely to need a lot of expensive interventions etc.

There is a new assisted dying private MPs proposal in the offing - and it should be debated calmly.