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’m not arguing one way or another …I said we need to have a debate.

Im not an expert and the debate needs to be held by experts.

I can only relay my experiences.

This is the problem. Most of us think of situations like the OP's and it seems so right, so humane. That's so heartbreaking for her and I would be the same, and have been pro assisted dying for that reason.
But it's a can of worms that doesn't end with those in OP's situation as Canada has found out.
There ARE grown up conversations happening, but with the greatest of respect to OP, they have to happen amongst people who can look at this objectively in terms of far reaching long term consequences.
There was an interesting documentary exploring this with Prue Leith and her son, at opposite ends of the debate in which they travelled to Canada. Her son (conservative MP, against) said this had been roundly discussed in parliament, but they couldn't get round the possibility of the problems Canada is having.

The documentary did make me think, as an avid pro-assisted dying person. It seems so simple, so obvious, but it really isn't and it isn't just about the human need to cling on to loved ones.

I'm totally in favour but the real problem is once you start to get dementia you can no longer legally consent so assisted dying then is really killing someone and it is just a hop skip and a jump to Nazi-styleeuthanasia

As others have said we need to change our ideas about death and doctors clinging helping us to cling on to the bitter end so we accept the need to die ourselves before we lose the capacity to decide.

It’s been asked multiple times already. Who decides on behalf of those who cannot communicate their wishes? Either because of illness, disability or capacity ( children) ?

People pointed out very early on why cjst shouldn't enter into the discussion and yet you immediately returned to it.

So once again: the cost of caring for severely disabled children is massive - should they be part of your discussion?

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

When life support is turned off in the UK it is an ethical decision - when continuing treatment is futile and when the treatment burden greatly out balances any possible benefit. The only decision is the patients best interests, money does not come in to it.

The difference is thst those kids are out and about seemingly enjoying life at times. The people I’m thinking of in care homes look confused snd scared no matter how much care they have.

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.

How do you know they’re enjoying life?

Is everybody in a nursing home miserable and suffering?

To all those saying 'where do you draw the line', or 'how do you decide',
it is not impossible.
Just have a law which lists clear criteria, e.g. the patient must have/be all the following:
Doubly incontinent
Have dementia or otherwise have no concept of who they are or who anyone else is
Have no hope of recovery or significant improvement in their condition
Immobile and unable to roll over in bed for themselves
Over 70 years old (to rule out babies or younger disabled people)
In the opinion of three independent doctors the patient is likely to be suffering severe pain (whether or not they able to communicate this)

This is just an example, I am not a medical expert, but it is not impossible for the law to define a list of criteria to be met.

You may think the cost is crazy but some of these people in nursing homes would rather die naturally than be assisted. And who gets to decide their life is not worth it? As most people have said - it is important to separate cost from the discussion.

Teachers and nurses are important for the next generation but the elderly also birthed and nurtured the next generation - that is just as valuable and as a society we cannot afford to put a cost on that. We value all life - young and old. And discussions of a quick and painful exit should be had with the affected front and centre and finance completely out of it

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

Clearly there are lots of people in a care home having a great life,

There are also people who are in end stage life, not eating or drinking and having to go through the 3 weeks of hell it takes to die.

I looked at thst and I don’t want those 3 or 4 weeks I want to avoid that for sure

I used to agree with this train of thought but having seen it in action (Canada) it is too vulnerable to abuse. It’s not the good thing I thought it was.

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

For assisted dying it would be only for those who have capacity to consent (as in other countries). For those, eg with dementia, they would have to consent and die while they still had capacity.

But as an aside (and I'm not suggesting this for assisted dying) we have the Court of Protection system to decide treatment when there is uncertainty to what's in a patients best interests and the patient doesn't have capacity.

So if somebody has no concept of what is happening around them, why would double incontinence be an issue for them?
You realise that incontinence can be managed with urinary catheters and effective continence products?

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?

So imagine someone tells me that I have dementia what should I do?

I know how it will end as I have seen it and it’s horrible. I know that unless pneumonia gets me I’m going to have those final 3 or 4 weeks of active dying process and it literally scares the pants off me.

If I could bargain my way out of it I would and say please give me an injection it’s cheaper for you.

I am scared really scared about those last weeks if not the months beforehand

All this never mind family putting pressure on relatives to ‘do the decent thing.’ Palliative care should be better and more money put into it. It is patchy at best at the moment.

And how would the role of the court of protection change if euthanasia was legalised?

I don't understand what you're saying here. Brain stem dead = legally dead. We don't keep corpses on life support.

I said the list was just an example. The details would be thrashed out by the experts in medical law.

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