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'd suggest the person themself makes that decision while they still have capacity. If I decide that if I become ill, I want to go once i'm unable to control my bowels and recognise my family. That should be respected. If when making my directive I want to remain until i can no longer eat, again respect my wishes. If I wish to carry on to the bitter end and die effectively from malnutrition then again that is my decision to make.

I stated a fact taken from the Gov website. I began with that only as I had just read the Gov report. When I first read it I was shocked that some accountants had worked out the cost per death for the Gov with detailed stats. So I began my post with factual statement and n9 expression or argument

Also this week I was having long thoughts about my future as I approach an important birthday. I then reflected on my parents awful death and the impact it had on my family.

I then suggested that we needed a debate.

During this debate I have clearly expressed what I would like for myself only.

Can I just say, that as difficult and emotive as this thread is, especially for the OP and those who are sharing personal experiences, I think it’s an amazingly respectful thread and I hope it’s giving loads of food for thought for people about the complexities of this issue.

And what if, when that time comes, you resist all attempts to sedate and euthanise you, what happens next?

One grandmother existed with dementia for seven years. She was wealthy, not that it matters, but the care home ate all that up whilst she was in a nappy unaware of her first name. She would absolutely have chosen Dignitas or the like. Another grandparent had a dying process that spanned 10 days and her own son who is a vet had to step out in tears saying he would not leave a dog or cat, horse or hamster to just suffer indignity like that.

and how would you feel if one day your child's SEN was deemed a drain on society and his life wasn't worth preserving? Some people think.that already applies to mine apparently !
This is the slippery slope we are embarking upon .

I'm so sorry for your experiences. Yes, often euthanasia would be less cruel, I agree.

A lot of it is hindsight though, as you say you only look back now and think these things, you didn't at the time.

I work in social care and relatives are always wanting their family to live longer. They worry they will overdose on meds, or that their diet isn't healthy enough, or they will fall and hit their head and not be found..when most of the time none of this really matters for an extremely elderly person who has no quality of life. It's very difficult, mostly impossible and would be entirely unprofessional of me to say "they are old, they are going to be dead soon, it doesn't matter".

I have spoken to many older people who are utterly miserable. It's very sad.

The same question was put to me a few pages back. My personal feelings are that my wishes when I did have capacity should be respected.

You regret feeding your mum and regret being careful with morphine for your dad, the implication being that you now feel should have acted in ways that would hasten their deaths. Without their active consent. That is a huge leap from assisted suicide and very dangerous territory.

I can see there being a place for assisted suicide, the right to die. I have so much sympathy for people with terminal, painful, severely limiting, degenerative conditions. The thing that makes me nervous about getting wholeheartedly behind the campaign for assisted suicide is the fear that it would normalise thinking and talking, as you have above, about making a choice to end someone else’s life due to how it is perceived from the outside. That kind of argument is too easily subverted for selfish, abusive purposes - though I can also tell from your post that you loved your parents deeply and, for you, this is all coming from a desire to reduce their suffering. Just as I don’t want to be forced to live in pain, I also don’t want someone else deciding that my life isn’t worth continuing when I’m not able to express that choice for myself. I’m especially concerned about any argument that links euthanasia and cost of care.

I think we are all so well informed that were we to see a GP and they tell us bad news eg you have stage 4 cancer or you have the early stages of mixed dementia and you know what the future holds. It’s petrifying.

We then think of our families. I would not want my DD to be a carer ever again that’s for sure.

Also in my case I was petrified when I realised that my mother’s dementia was partly frontal temporal lobe hence my current reflections. …so that’s out there for you GPs to understand my thought processes and no I care not a fig about saving the state money I just want the state to give me rights and in my head I’m bargaining with the state. Give me the right …it saves you money. Coupled with that my brother’s illness for for me this is a real debate,

I have also been looking up treatment for dementia but nothing much for VD.

And actually to be frank when someone says I have a disability ( not life or intellect threatening) and don’t want euthanasia to be legalised I feel not anger but frustration as I’m thinking that ok but equally I don’t want my mothers fate - she had dementia from when I was in my 20’s. Many of the years were awful as she cried infornt of mirrors and was convinced I was her sister.

So that’s my honest thoughts.

And who would you expect to carry out your wishes if you were resisting sedation/euthanasia? Your family? Nurses or doctors? Care assistants? Specialist euthanasia teams?

Yanbu OP.......I can't think how much I'm damaging my 8yo every time we go to see "Nanny"......(80, dementia)......it's evil xx

It would be significantly cheaper to recruit and train teams to administer euthanasia drugs than it would be to invest in palliative and end of care care.

And my reply a few pages back to that question was, it is something that would need to be legislated for and staff trained to do it. If sedation was required just the same as if i was becoming aggressive due to mental health issues, prior to the last jag, I could accept that as part of my 'living will' or whatever you wish to call it.

I have seen alot of death recently and am quite vocal that I want to go over the Rainbow Bridge even with a bit of a nudge when the time comes. Some people want to hold on for ever , for me nah ,not if I have already gone mentality or am in living hell .

What type of staff do you feel would be suited to this role?

Do we need to grow up and really think about euthanasia? 100% yes. Similarly I nursed both my parents until they passed....I will never put my son through that.

Me too. First sign of decline or impacted quality of life I'll be outta here.

Not everyone gets a hospice. Not everyone gets a lovely death. I’d rather decide now, whilst I’m fit, healthy and sound of mind. There’s the odd, almost romanticised anecdote of a beautiful death- I’ve never experienced it. My father was sent home to die and it was excruciating. I’m glad your parents had a ‘good death’. But equally I’ve known people enter a hospice and beg to die- a good death isn’t guaranteed, not all pain can be managed.

I hope euthanasia is an option in the U.K. soon, I’ll gladly sign up. Better a day too soon, than too late. What is the point of starving to death, losing your mind, screaming, with no control over your bodily functions- what is the point, an extra few days or weeks of torture.

If you think it's having a negative affect on your son, then please don't take him any more. Maybe ask if he wants to draw her a picture or write her a card or pick her out some flowers or something instead.

I think before addressing euthanasia there is the matter of what we already, currently do to aggressively (and incidentally, very expensively) extend life in ever more hopeless and cruel situations, in people who lack capacity (and will never regain it) and are living desolate lives.

Though there have been some very high profile cases I don't think this is a massive issue in paediatrics. I think it is a massive problem in dementia.

As you have hit upon, it is patient's families who are often unwilling to accept the end of life. This can only be addressed through openness, communication, emotional and social support, awareness and education. It's not something that can be legislated for.

Well trained ones with the empathy and understanding of peoples wishes.

And what if we can’t recruit those staff? How do we measure their empathy? Who does it fall to then if we can’t fulfill that job spec?