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).

Yes it is cold - but it’s not me being cold.

You're the one who said care costs can be solved with an injection.

It’s not that easy as suicide can go wrong and end horribly. Also it requires another element of bravery to actually plan and execute.

It's almost a derailment (but not quite) - how do you know what's going on in this woman's mind?

My mother and I have often talked about the idea of a life "with no point". She's in her mid-nineties, physically limited by age-related ailments. I have a very restricted, isolated life due to a chronic health condition. Both of us are in states we would, when younger, have deemed "not worth living". Both of us are happy. We had underestimated human adaptability, and overestimated the importance of vitality.

A friend of mine has a daughter, born with multiple severe issues including microcephaly, who's now in her teens. She cannot walk or speak and has hardly any control of her movements. She's always in and out of hospital. She's very much loved, knows she is, and it's clear that she's interested in the world around her and that she takes pleasure in many things. When they're out, strangers often remark (in front of her) she'd be better off dead. I'm glad no stranger has the authority to put that thought into practice.

You are against the LCP which was intended to be a way to avoid Drs from over treating people who were dying but also against them being given anti biotics and therefore saved.

Drs can't do right for doing wrong. People say they don't want their relatives treated but then they get angry when they therefore die.

Similarly in Covid. People got angry about having lock downs to save old and vulnerable people but then also got angry that old and vulnerable people died in care homes because not enough was done to save them. So what did they want? People to be left to die or sacrifices made to save them?

Society needs to be a whole lot clearer about these issues.

Your focus on the cost of care is exactly WHY ‘assisted dying’ is a slippery slope. We live in a country where millions of pounds in welfare benefits are fraudulently claimed every year. Money and freed are powerful motivators for many people.

We live in a society where elderly and disabled people require protection in law to ensure that they are not financially abused by family members.

You are naive if you fail to recognise the lives still being well lived that are at risk on this slippery slope.

Until costs, fees and money are removed from the argument it's a non starter for me. I don't trust the government enough and there would be too many unscrupulous individuals with pound signs in front of them.

I'm also in favour, however it should never be due to cost.
The reason your parents end of life care was so bad was because of costs and that's heartbreaking. I think you would've probably been left more traumatised if you ended up being forced to use euthanasia on them due to costs.
It is indeed a very slippery slope, but I do agree that in this area we tend to give animals more dignity.

It would be something that needed looked into and addressed before legislation allowing it was passed.

A person with advanced dementia will often say and do all manner of things as we all know. They may have forgotten their own name or their family. They may see family members and think it is her/his own mother and start crying when told she is no longer with us. A lot of the symptoms in advanced dementia are cruel on a person. I'd suggest their wishes when they had capacity should be respected.

We live in a world of finite resources,

Perhaps I was mentally pleading and rehearsing my own case. Please one day let me die because it would be cheaper for my children and the State,

I have a SEN son I don’t want my money taken by care costs and leave little for him to live on.

I think there should conversations held at the gp, about what you would want to happen to you if you were to lose capacity. I briefly worked in a neuro/spine injury care home, and there were people in vegetative states, their bowels and bladders had to be manually evacuated, and they had to have chest sections every few hours as they couldn't bring up phlegm, yet they were conscious. If I couldn't move or couldn't talk, I'd want to be dead. Or if I lost who I was, couldn't make decision for myself, needed to be supervised 24/7, I'd want to be dead.

Similar for cases of life limiting or life changing illnesses. Having conversations about what dying will be like with the particular disease, or what suffering from the illness could be like as it progresses and discussing how to come to the decision when enough is enough, e.g when unable to care for themselves or when pain prevents you from getting any joy from life. It would be much more dignified and far less traumatic.

I'm really hoping euthanasia is legalised soon.

"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."

From your OP @Noras

If you want an honest discussion about the morality of extending life beyond the bounds the dying person should be expected to tolerate, don't bring money into it, or start going on about you 17 year olds A level results being affected.

But again, your argument is based purely on costs. There should be far more support for SEN adults and your wishes shouldn't be based around the fact your end of life care will mean your sons basic needs aren't met because you took too long to die.
Your resources will also be finite, where does that leave your son even if you do die quickly and leave him lots? It's not a solution to your problem.
This argument should never be about costs. We don't euthanise animals just because their care is too expensive, we do it because it would be cruel to let them suffer. That should be the same with humans.

I don’t really know how psychologically it would have played out.

At the end of my mum’s life I was the one who agreed to no feeding tube. That freaked me out enough to speak to a priest. It was the advice of a GP.

I don’t think thst relatives can make that decisions not because of greed but because of love. It would have to be made by doctors,

I am in favour. We are currently watching my mother in law die. She's suffering and she's in pain. We don't put our pets through that so why is it ok for humans?

Thanks for answering ATenShun

I personally don't believe there is legislation that can be clear enough for a situation like the one I've outlined and I was not personally willing to even vaccinate someone who was actively resisting me far less to kill them.

People with dementia certainly do behave very irrationally and sometimes aggressively and not in accordance with their previous wishes and values. I can't see many Drs restraining someone for euthanasia honestly I can't and who is going to actually do it if we won't.

I have a SEN son

You realise there are a lot of people who believe he should receive "assisted dying"? Their arguments sound as cogent as others on this thread.

But realistically there will never be optimal care for my son unless I provide it.

People on mums net even begrudged paying for a PA to take him to the cinema when we paid for his ticket and costs

People want to see SEN people living in boxes.

It makes no sense to talk of a 'duty to die' in the context of euthanasia, because that implies the person has capacity to understand the concept of duty. If they have understanding, they should have choice. Assisted dying or the choice to die is not euthanasia. You are muddling up the two concepts.

Euthanasia for elderly people with end-stage dementia (and similar conditions) MUST be brought in, because the alternative is abhorrent and has no place in a civilised society.

It’s always about money.

If assisted dying is made legal then there is the risk that greedy relatives will bump off their parents to grab the inheritance or that poor people will choose the easy way out of poverty.

As things are, there’s lots of money to be made by pumping people so full of drugs they’re practically pickled and kept alive many years beyond the date at which they’d naturally die. Fees for care homes, doctors, pharmaceutical companies… You name it, there’s money to be made from prolonging pain & suffering.

I’m so sorry, that you experienced that.

Just looking at your Dad’s situation, what do you think could/should be different?

I absolutely agree with you.

I know some compassionate, lovely NHS workers with excellent bedside manner and none of them would be volunteering to do this. There's a reason that you have to drink the drink yourself at Dignitas.

It’s an interesting question, end of life care is very expensive, we probably do keep people alive for no reason other than we feel we should. I think when someone is mentally sound they can decide to turn down treatment. It’s those with dementia or Alzheimers who are left to suffer because they can’t consent.

I think families also struggle with this, when it happened in my family , many members insisted that care was continued despite the fact there was no improvement and continued medical treatment was causing extreme distress and the doctors were so exasperated they pointed out that they needed the hospital bed back and that family member was not about to make a miraculous recovery (not so bluntly). In an effort to do the right thing my family very much did the wrong thing.

I actually think if someone has dementia or Alzheimers and no real quality of life they should be put on a palliative pathway as first resort. This is because I think it is kinder than someone living for an extended time in confusion and distress.

I also think on an individual level some of us would want to spare our children the burden of care or for them to have a reduced inheritance. BUT I think that must remain a personal motive, not one for the state to judge. Life is very precious and I would worry that anyone felt obliged to end theres sooner than they would like.

For anyone interested Atul Gawande (surgeon) wrote an amazing book about the end of life, from the perspective of a medic and as a son.

But do you not see how your arguments could sadly be applied to him? Where is the line drawn?

And yet when drs made decisions about resuscitation they were pilloried by the likes of the Daily Mail and we now have this crazy situation where family members claim the right to over rule the best interest decisions that drs have bern making for years.

There was OUTRAGE when DNACPR documents were widely used during covid yet now a few years later there are calls for death on demand. Which is it to be?

There has to be a way of differentiating between the ability to have a happy life and the extreme pain or lack of meaningful quality of life .

I’m not a doctor so can’t phrase it but there are enough clever people to legislate.

We can determine this in pets.