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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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

722 replies

Noras · 18/08/2024 17:41

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).

OP posts:
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Noras · 18/08/2024 19:54

VickyEadieofThigh · 18/08/2024 19:52

Are they? All of them? I worked for a time in a local authorise thst took me into special schools that looked after the most severely disabled children and many of them seemed quite distressed at times. The "cost" of those schools was very high.

Since you are the one who brought cost into it - why not them in your 'some humans cost too much to care for' world?

Aa I said I’m not forming a view but saying we need a debate.

To be honest I was reflecting on my future pathway given my age and parental history,

OP posts:
BeanCountingContinues · 18/08/2024 19:55

VickyEadieofThigh · 18/08/2024 19:54

Yes, they had tight criteria in Canada to start with. Then it got lobbied into something terrifyingly different.

Then that is the fault of their politicians for not holding firm and sticking to the original law.
That is not a good argument for never having any euthanasia law.

ATenShun · 18/08/2024 19:56

Starlingexpress · 18/08/2024 19:48

Life support withdrawal does not apply solely to cases of brain stem death. See Alfie Evans and Charlie Gard cases.

Archie Battersbee too. But weren't all those cases eventually found to be legal to withdraw care after many court cases. Encouraged by a bunch of self serving 'christians' from the 'christian legal centre'.

All the more reason to have legislation properly in place.

NeedToChangeName · 18/08/2024 19:56

Whothefuckdoesthat · 18/08/2024 17:55

I think it’s a slippery slope. Once we start equating costs of end of life care, are we asking those who don’t want to be euthanised to justify why we should spend the money on keeping them alive, compared to June down the road who decided to euthanise at an early stage? Will the govt go on a cost cutting mission and start closing down palliative care facilities on the basis that if people want end of life care, they need to agree to be euthanised at a certain point? Or will families be expected to fund it if they want end of life care for their relative?

It sounds utterly ridiculous but so many utterly ridiculous things have happened that I wouldn’t rule anything out.

@Whothefuckdoesthat

It's not ridiculous. Absolutely, there would be a slippery slope. I have no doubt about that

Abortion is quite a good parallel. Initially, was only in very limited circumstances. Now, available on demand. This may be a good thing, but illustrates how limitations are watered down over time

If assisted suicide / euthanasia becomes legal, then I fully anticipate robust safeguards at first, then watered down so anyone who (1) is poor, (2) has no family to advocate for them, (3) has greedy relatives with one eye on their inheritance, should be very concerned

I hate to think of people suffering, but IMHO the solution is to invest in better palliative care, not kill people off

cupcaske123 · 18/08/2024 19:58

BeanCountingContinues · 18/08/2024 19:55

Then that is the fault of their politicians for not holding firm and sticking to the original law.
That is not a good argument for never having any euthanasia law.

It's a very good argument for not having any euthanasia law as it clearly demonstrates what a slippery slope it is.

noctilucentcloud · 18/08/2024 19:59

Noras · 18/08/2024 19:47

How are the treatment burdens too high when the person is in a vegetative state and unaware of their body or pain in other words brain stem dead.

Brain stem death is different to a vegitative state.

When someone is brain stem dead, they are dead so treatment is futile and it is undignified to the person to continue. Plus the body will gradually shut down and deterioate even on life support.

When someone is in a vegative state, which I think is now called a minimally conscious state, they are still alive. However, they are not going to get better and the treatment, such as suctioning an airway, can cause pain. The patient may not feel pain the same way as we do, but pain is still there. You can read anomynised court of protection judgements to see how the evidence is weighed up.

Starlingexpress · 18/08/2024 20:00

Noras · 18/08/2024 19:44

Don’t we to a certain degree already do some debatable things by allowing people to have really late abortions after amniocentesis?

How is that morally not objectionable as that person could have enjoyed life?

Again I have no ability to determine that especially in my circumstances. My instinct is that I would have kept the baby but I don’t know as I have never been in that situation

So how do people make decisions about euthanasia? When they’ve never been in that situation before?

Noras · 18/08/2024 20:00

NeedToChangeName · 18/08/2024 19:56

@Whothefuckdoesthat

It's not ridiculous. Absolutely, there would be a slippery slope. I have no doubt about that

Abortion is quite a good parallel. Initially, was only in very limited circumstances. Now, available on demand. This may be a good thing, but illustrates how limitations are watered down over time

If assisted suicide / euthanasia becomes legal, then I fully anticipate robust safeguards at first, then watered down so anyone who (1) is poor, (2) has no family to advocate for them, (3) has greedy relatives with one eye on their inheritance, should be very concerned

I hate to think of people suffering, but IMHO the solution is to invest in better palliative care, not kill people off

But what is this golden chalice of decent palliative care.

That’s a thing that scares me and in the meantime my money may in future fund my possible painful life and not going to my son. Yes money would be a factor then for me.

Why can’t I decide now and not in the next 15 or so years to protect him and me from this? My brother has recently had a TIA given my mother’s death that’s petrifying.

Why can’t I as an individual have free will to determine what I want from my life and not be forced to go abroad whilst I still can if I get diagnosed with TIA and dementia etc.

OP posts:
Noras · 18/08/2024 20:03

Starlingexpress · 18/08/2024 20:00

So how do people make decisions about euthanasia? When they’ve never been in that situation before?

So many people have watched love ones die and they have all that wealth of knowledge. Ultimately it’s for the legislations and medical profession to form a view.

OP posts:
Starlingexpress · 18/08/2024 20:03

Noras · 18/08/2024 19:50

But it has applied to brain stem death though. so what burden of treatment was there?

Brain stem death is death. Interventions are futile.

MeinKraft · 18/08/2024 20:03

I think you are right in that a debate should be had, although I don't think when someone has potentially got years of life left that euthanasia should be an option really. End of life care needs to be improved though, so that rather than go through weeks of lying in a hospital bed with pneumonia and starving slowly to death like so many dementia patients, elderly people and very unwell people at their end of life should be allowed to slip away with the help of medication.

WowIlikereallyhateyou · 18/08/2024 20:04

lovelysunshine22 · 18/08/2024 18:01

We absolutely need euthanasia legalised in the Uk. The way we expect people to exist in the last few weeks/months of their lives is nothing short of cruelty. I have a relative with dementia and they are simply existing and would be absolutely horrified if they could understand what has become of them. I wouldn't let one of my animals suffer like it but im expected to watch a relative suffer until the bitter end!

Totally agree

Octomingo · 18/08/2024 20:05

I hope it's around for me. If I can't'live', then I really don't want to just exist on until my body finally gives up.

abracadabra1980 · 18/08/2024 20:05

Hatty65 · 18/08/2024 17:57

Having watched my MIL spend over a decade with Alzheimer's in a care home I would agree. I do not want to live like that, and would choose death. She was 96 when she finally died and was blind, non verbal and doubly incontinent. I wouldnt keep an animal like that.

This. I've been through similar and I would have had no problem assisting my loved ones death, and doing a prison sentence for it if I had to, but it shouldn't be this way for anybody. I pray that assisted dying shall be legal very soon. Labour promised they would enact upon this, did they not?

Lizzie67384 · 18/08/2024 20:08

Noras · 18/08/2024 18:03

Yes the discussion should be on quality of life not on cost.

I think there is this irrational though not to want to let go because you cling to those you love so much. Gosh, I was virtually clinging to my dad’s coffin when it was about to be lowered.

I don’t want my kids to go through that and think that a quick exit is preferable.

However the cost of all this care is crazy. How many more teachers or nurses could be employed to look after the younger generation? In the meantime the nursing homes are full of people who are the living death. I helped with a party at one last Christmas - it was so sad and painful to see people just sitting there confused. I actually think that all these health techniques to make us live longer have just fuelled a care home gold bonanza.

Perhaps if all people had to write a care plan or care wish at aged 70 for future events ?????

Yes but you’re suggesting that because someone is, in your opinion, like ‘the living dead’ and costing the state a lot of money, they should be euthanised to fund other state services?!!!

sommerjade · 18/08/2024 20:09

As I said all my grandparents had dementia plus I've cared for patients with various kinds of dementia during my working life.

If family can't help care for patients then it's time that in order to get good quality dementia care, we should think as a society about paying employed dementia carers more than minimum wage & giving them better training??

Which obviously costs but I think it's worth it because people living with dementia are people just like us and should have the right to a decent life.

Why should they face euthanasia just because it's convenient or because we can't imagine living their lives.

VickyEadieofThigh · 18/08/2024 20:09

BeanCountingContinues · 18/08/2024 19:55

Then that is the fault of their politicians for not holding firm and sticking to the original law.
That is not a good argument for never having any euthanasia law.

And you trust UK politicians, do you?

itsgettingweird · 18/08/2024 20:10

Absolutely we need a discussion about EOL care.

I watched my mum suffer at the end stages of cancer too.

But it needs to be separated from care costs and from being enough staff.

It's about the latent, what they want and what's best for them.

cupcaske123 · 18/08/2024 20:11

sommerjade · 18/08/2024 20:09

As I said all my grandparents had dementia plus I've cared for patients with various kinds of dementia during my working life.

If family can't help care for patients then it's time that in order to get good quality dementia care, we should think as a society about paying employed dementia carers more than minimum wage & giving them better training??

Which obviously costs but I think it's worth it because people living with dementia are people just like us and should have the right to a decent life.

Why should they face euthanasia just because it's convenient or because we can't imagine living their lives.

Why should they face euthanasia just because it's convenient or because we can't imagine living their lives.

Because a lot of people don't want to pay care home fees and see their inheritance dwindle.

mothsandgoths · 18/08/2024 20:12

You would be reported to the RSPA if you let your dog live on in terrible pain! Yet we do it to humans. I had an elderly aunt in a care home, she lost her hearing, her sight and the use of her legs. She cried and said to me "I can't even watch coronation street anymore". Her mind was perfectly clear but her body failed, she was desperate to die but she lived for two years. So cruel

Lovetotravel123 · 18/08/2024 20:13

I agree. Both my parents died from cancer and whilst pain relief was given well at the end, they did suffer before that could be arranged.

When the doctor asked my mother if there is anything else he could do for her, her response was ‘nothing that’s legal in the UK’.

When my dad was dying, he kept asking the staff to ‘make it all as quick as possible’.

Both of them had no hope left, were of sound mind, and just wanted it done. It tells us a lot. Dogs are treated more humanely. The staff were incredible but have to work within the law.

CascaChan · 18/08/2024 20:15

Violetmouse · 18/08/2024 18:01

From what you describe neither your mum or dad had a good standard of palliative care and that is absolutely wrong and heartbreaking. Good palliative care can improve things a lot and I believe this should be everyone’s right.
Legalised euthanasia, especially in the situation where a patient lacks the capacity to decide is terrifying to me - who decides whose quality of life is good enough / bad enough to live or die? On what basis? What about children born with significant disabilities? Even where the patient does have capacity to decide there’s evidence that patients can feel pressured into euthanasia. Even more so if keeping costs down is a primary concern. I’ve no desire to prosecute people who decide to travel overseas in search of euthanasia type options as long as they aren’t pressured into this but the practical consequences of legal euthanasia are very frightening. I’d much rather fund palliative care better to ensure that both patients and their loved ones are treated appropriately when curative options aren’t available.

I have watched both my parents die horribly, and an absolutely terrified of death, but I agree with this 100%

Lizzie67384 · 18/08/2024 20:15

cupcaske123 · 18/08/2024 20:11

Why should they face euthanasia just because it's convenient or because we can't imagine living their lives.

Because a lot of people don't want to pay care home fees and see their inheritance dwindle.

What so they’d rather die than pay care home fees? Lol

Witchlite · 18/08/2024 20:16

I think as a first option, we could give those who are able to state their wishes the right to decide ahead of time.

So I could state that if I ever reached stage 6 of Alzheimer’s/dementia I wish to die. There must be many who would live more comfortably knowing that was in place. others might choose different criteria to trigger death.

it would be opt in only, with perhaps a doctor, psychiatrist and solicitors having to sign it off to set it up. Then 2 doctors agreeing the trigger level had been met.

Icanthinkformyselfthanks · 18/08/2024 20:18

When my dad was dying we had to wait for the nurses to come and change his syringe driver. I didn’t know you could administer your own relative’s medication in the U.K.?
I absolutely disagree with relatives taking the decision to end the life of someone.

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