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 have considered it, and I strongly disagree that it's the moral choice to end a life for financial reasons when the person involved would choose to live otherwise. Even if it's your own life. And doubly so in the situation I explicitly mentioned, where the relatives are actively begging the person not to do it.

They were suggesting this for people who were just disabled with ASD / learning issues. There is a World of difference between someone with and without quality of life.

There are clever people who can define this. We all know it when we see it, At the very least my dad should have gone a week or so earlier.

'Most of that could be avoided with an injection'

No offence but with that one single sentence you sound like Hitler. Because if you read your history about Aktion T4 and the other Nazi medical horrors - your economic justifications for euthanasia in particular are exactly what they used.

I don’t think I want to meet the clinician who is happy to restrain the patient who now lacks capacity but is struggling against a euthanasia they had previously agreed to. Arguably they are not the same person they were before and so that person does not have the right to make decisions for the person they are now.

i have delivered a lot of high quality palliative care (I hope!) and whilst I’ve seen some very sad stories I have seen a lot of patients and loved ones have good quality times within hours and sometimes minutes of death. Prioritising comfort over prolonging life happens now, patients can express advanced wishes re this and is very different to euthanasia.

@Noras I really feel for you. A couple of thoughts. Please don’t allow anyone to make you feel bad for decisions you made while caring for your dad - it’s clear reading this you were trying to do your best in a horribly difficult situation balancing the needs of all your family. I wish there had been more support for you all. Second thought - you say you’d want your son to benefit from your money. Is it worth seeking legal advice to see how this might be possible? Perhaps through setting up a trust for him ahead of time? Whilst I disagree with you re euthanasia it’s clear to me reading your posts you are a very caring person who has experienced very traumatic times - sending hugs.

Harold Shipman and Jane Barton - just good doctors ahead of their time?

And who exactly is to define who has 'quality of life'

I understand entirely. It is very much a dilemma and something I'm not sure I could do if asked either. In that instance I'd suggest two independent trained Dr's assess if the person now has sufficient capacity to make an informed decision based on some form of awareness test.

For me personally, if I was the ill person I'd want my wishes respected in terms of what I had said while I did have capacity.

Of course euthanasia should be legal, it's an obscenity that we force people to live in abject misery because we're too scared to have the necessary mature debate.

Painkillers can help relieve pain, but not the million other unbearable miseries, discomforts and indignities the human body can inflict on us.

I'm just recovering from a heavy cold. On the worst day, I basically wanted to remove my own head. If it was permanent and incurable then no amount of morphine etc would make my life livable.

I've had bad luck with my teeth over the years and nothing prescribable removes severe dental pain. Who knows what other joys the body can come up with that are similarly resistant to relief. If the only option is the kind of medication that renders you insensible then what's the point? That isn't living.

Btw OP I've recently lost my mum to cancer & 4 grandparents to dementia

I immediately thought of Hitler too

‘They were suggesting this for people who were just disabled with ASD / learning issues. There is a World of difference between someone with and without quality of life’

These decisions were being made in nursing homes with people severely impacted by a range of physical and mental health issues. It was NOT solely relating to people with ASD and learning difficulties’

Yet there was outrage.

But tell me how we define QOL, particularly for somebody who is able to communicate their thoughts and feelings, either through illness or disability? Who decides what MY QOL is if I’m physically disabled by a stroke and can’t speak?

I have a SEN son so that is offensive and the concept of Nazism petrifies me. They killed disabled kids like my son.

I have also suffered 2 awful deaths of parents I loved very much whom I nursed constantly. I even sudo creamed my mother’s bottom the day before she died and lifted my dad on a commode and wiped his bottom the days before he died.

My mother had shock and was bleeding from the bottom before she died as her bowels were not managed.

The Nazis had a completely different concept to this. I have studied the era and the fundamental thoughts were about the Super Race.

I myself cost the NHS a lot in mental health & neurology treatment as I have Schizoaffective Disorder & epilepsy.
Recent events in Canada shows what a slippery slope euthanasia can be - they are offering euthanasia to younger disabled & mentally ill people now.
If we were in Nazi Germany I'd be dead.

Exactly, and that’s why the decision can’t be made for anyone else because everyone has a different idea of quality of life.

I support a rigid system whereby those who can make an informed decision are supported to do so but that decision should never be in the hands of anyone but the person whose life it is.

What is the difference between euthanising older people with dementia, and euthanising disabled people? Do you advocate euthanasia for people with physical disabilities who are constantly in pain, and / or people with mental disabilities who cannot talk or laugh? If not, why is one OK and not the other?

(TW for paragraph below.)

I worry so much that the path you are talking about leads to forced abortion of disabled foetuses. I am not sure I want to live in a society like that.

My mum suffered too @noras I'm sorry, and I cared for her, she also had bowel cancer but she did not believe in euthanasia although she was ready to go.

Yes and my son would be too and tens of people I know and care about as well as maybe their parents for giving birth to them and not being a super race person ( including me).

This is not the same - it’s about watching people die horribly.

I'm giving 24/7 care to my (second) husband who is bedbound and have been applying cream to his bottom and helping him empty his bowels for 2 solid years now, not a few days or "even" about it. Lots of other stuff too.

Be very, very careful what you wish for, because some (and I am sorry to say this) will not see your son as any more worthy of support than a person with dementia.

They can't consent.

If I, right now, with all my faculties, could sign a plan that stated how I would/wouldnt want to live if I lost said faculties, I'd sign it with joy in my heart.

I wouldn't want to live in the conditions I've seen family exist in until their painful and drawn out deaths.

Godwin's Law.
The first person to mention Hitler has lost the argument.

The treatments we use in palliative care are massively different to those available to someone with a cold. Or even severe dental pain. Palliative medicine is an entire speciality with consultants who have years and years of specialist training. With respect, I don’t think you are able to accurately comment on what’s available and what side effects it has - being rendered insensible is absolutely not an inevitable side effect of effective pain relief.

Now, not all patients receive high quality palliative care and we definitely need to try and fix that. But evidence suggests that legalising euthanasia may well do the opposite.

But your own argument is also about someone else deciding who is worth keeping alive and who isn’t

I have specifically studied the trials of Nazi doctors who sent their patients to be killed, they mostly honestly believed they were in the right and doing them a favour.
Most of these doctors got away with it and had long careers.

I have no idea.

But that’s why medical expertise might help.

Perhaps there should be more liberal use of morphine in the last few days of cancer as a start.

I could not do it but perhaps GP should be allowed to do it. I was scared to give more morphine - it’s a heck of a responsibility is it not!

I don’t know what the answer is. I just know how my dad’s slow death impacted us as a family at the time and this includes my niece snd nephew. Maybe if he had died in a hospice it might have been better but he wanted to be at home.

Why shouldn't people be allowed to die if that's what they wish? None of us ask to be born. It's up to us when we go.