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).

My friends baby was born at 22 weeks. He is a wheelchair user but other than that he is perfectly healthy. He’s 10 now and an absolute joy. He’s the happiest little guy. He brings so much joy to his parents, siblings and the world at large with his relentless positive energy. I think suggesting that babies like him should be left to die is abhorrent. Just because he needed intensive care for the start of his life doesn’t mean he should’ve been left to die. What a wonderful human the world would not have known. And my own brother was born premature with a complex heart condition. He’s now almost 50 years old, married for 25 years with 2 children in their early 20’s. So, if he’d been left to die because of his complex medical condition we would have lost not only him but my two wonderful nephews too.

yes exactly! and how on earth would you apply it ? would all premature babies just be left to die and what cut off of gestation? What if they didn't conveniently do so at that point ? What if after a year or 2 it is obvious they are going to need long term care? Do you kill them then ? Who decides whether they die or not ?
What happens to children ( and adults ) that become incapacitated through accident or injury and require long term care? Do we do it then?
And so on and so forth !
A slippery slope indeed.

Why should anyone with these diseases feel pressured to end their life?

Why should they feel pressured to endure these terminal diseases until the bitter end?

There seems to be two arguments going on here.

One about needing to have full and frank discussions about end of life care - yes, important.

And one about the OP processing her grief by fixating on the financial side, which is not appropriate for everyone and shouldn't be factored into assisted dying.

Deleted

I agree with you OP and others in this thread who have mentioned similar conversations need to be had about very premature or very disabled babies.

It is all very well talking about eugenics and how it's a slippery slope but ultimately it isn't necessarily a morally superior position to try and prolong life this too can be inherently selfish and have little regard for the individual you are keeping alive. A terminally ill person that is clearly in a lot of pain and unable to advocate for themselves should not be kept alive I had relatives that were able to vocalise the fact they wanted to die at the end of their lives and nothing was done to help them end their lives in a dignified way. It is inhumane!

The cost is of course also relevant. It's all very well saying that it shouldn't be brought into conversations or this nature but we don't live in a world of infinite resource. Treating one extremely premature baby will cost the NHS a lot of money. This can impact other families receiving important life saving drugs or treatment. It may be unpalatable but it's true. We have to decide where we devoted our limited resources and where they will make the most difference to the most people.

We have to decide where we devoted our limited resources

Well, we don't actually have to do this when it comes to the most vulnerable in society, but I'm aware people have been taught to believe this.

A relative of mine had a very premature baby with extremely complex needs. He was blind, had profound learning difficulties and needed assistance with everything, he was absolutely helpless. Family life was centred around my poor unfortunate nephew. Multiple hospital admissions, their home was like a hospital ward with all the equipment that was needed to enable to sustain him etc. Years after he died my sister said that she had wished she had let him die as a very small premature baby. She said that the thought of letting him die, as he would have done in a less well resourced country was not even suggested to her, the prevailing attitude was to preserve his life at all costs.
I'm not saying whether or not I agree with that position but just giving a different perspective.

Of course we do! This is ludicrous. We don't have infinite resource. This is an objective fact.

Completely disagree with this - finance is NOT relevant.

Given the last govt wasted half a billion on the Rwanda scheme, do you really want some incompetent politician in charge telling you who is and isn’t deserving of medical care? And how much can be spent per baby?

My mum died of cancer a few months ago. Her last few weeks were challenging and it was distressing to see her suffer and at times I wished for her suffering to end. I am only just starting to recover from the flashbacks following her death. However, at no point did I wish she had been euthanised. She was on her own journey and I respected her wish to hold on to life for as long as she could. It was not for me or anyone else to have decided when she should have died. This is my experience only and is in no way a judgement on others who have have had a different experience.

Saying that, I do think we need a conversation about care for the dying. What pained me about my mum's experience was how hard it was to get her into the hospice; as a family we felt largely abandoned until in desperation we begged for help and managed to get her a bed. The hospice staff were amazing but there just isn't enough capacity to help dying people and their families - that requires urgent attention in my opinion.

As for dignity in dying; yes there should be conversation but it should never be based on costs because we could end up a situation with people trying to justify why they should be kept alive. I also worry that if as a society we don't value certain groups of people (eg the elderly or disabled) could we then end up in a situation where euthanasia is brought in sooner because of our intolerance for others or because they're deemed to be a strain on resources. It is a chilling thought.

My father had 2 bouts of cancer before he died. After both significant operations, given the location of the melanoma, he wax released to my home to convalesce as I was at home due to SEN son. After the second more extensive surgery that went as far as his optic nerve, he had a haemorrhage all over my spare room, spare room bathroom and everywhere. it took an hour for an ambulance to appear and they rushed up the stairs with resuscitation equipment. That’s why I should I have been taught to pack the wound.

After he was terminal he was insistent on dying at home. I begged him to consider a care home or hospice but he refused. He was on funded care via CHC but he still refused. He felt that care homes and hospices were terrible places. Also he felt that he could conquer it, By now he had names and personified the cancer and referred to it getting excited in sunlight, My lovely brothers shared shifts with me because CHC care was just 3 short visits at bizarre times eg breakfast at 6 and lunch at 11. I would do the am shift until 2 and then fetch my son but inevitably it all went wrong. My brother would call because dad had fallen, could I get there. Once he let himself out on the driveway, collapsed and some neighbors kids were traumatised alerted their parent who got him back in. My oldest brother simply struggled with anything other than keeping him company etc. He was not able to mop blood etc. He was better used to fetch the pain control from some out of hours chemist miles away after we managed to get hospice of a GP out to agree to increase pain patches etc. My other brother did the late evening shift. however we all rotated as required and we all needed time off .As things progressed the care intensified and changed in nature from taking dad for a coffee and prayers in the church next door and a short walk to being in a wheel chair etc. As the carers turned up at 6am they left him in bed with congealed breakfast cereal. So I had the job to wash him all over and get him dressed. when I cleaned his personal areas I joked and said ‘clean your bits and pieces yourself dad’. At the early stage there were therapists sent in eg even OT and a whole load of equipment to try to stop falls before he lost mobility. So we did his exercises. Until 2 months before he died we also tried to get him out in a wheel chair to places eg the Zoo, Museums etc I carried the relief morphine in my handbag. We would call everywhere to facilitate him getting out and about easier. There is a lot of administration dealing with the care agency ( begging them for better hours visits) the CHC people, hospice, oncologists etc. Also radiotherapy still continued when terminal in an attempt to shrink the tumour in the back that was breaking his back bone, Getting dad out was overall challenging and was a plus 2 but we wanted him to get out a bit. Through all this period we were always chasing the pain, So we ended up frantically trying to get hospice on a weekend to get the next lot of pain patches. also the pain patches come off when being washed sometimes by care agencies - not me, Things were also so traumatic thst my DH insisted I going into the house first when dropping me off to check the state of things ( at that stage we were not doing overnight cover), We seemed to have been running around all the time. CHC are a pain in the arse as they insisted on a full meeting in December to assess needs when obviously needs were high , By now dad was unable to sit and slipped sideways, At this point agency care was put in but it was understood that they could not do transfers so if dad wanted to continue to use a commode we had to facilitate that etc. Also we had to allow the 1:1 time off etc. So I was still going in as did my brothers as she could not cope alone. The agency also could not cover all shifts, Over the Chrismas week we had to cover so the gaps. Brother covered dad from 7 to 1 on Christmas dad, we brought him to our home from 1 to 8 and then other brother stayed overnight, DH got up at 6 am Boxing Day to cover as brother had to go to work etc. Even when the agency worker was there we often got calls eg your dad is haemorrhaging etc. CHC brought in a live in carer but again that was in the understanding that dad was plus 2 for transfers and also that we needed to give her time off etc. At least we did not have all the issues with shifts being covered by the agency. After Christmas it became a blur. for some reason the live in carer was replaced with an agency but they were completely different - I think a nurse as they seemed really professional. We had a lady snd then a guy ( who was able to manage dad on the commode himself). By this stage, my dad looked like a complete horror show with visible blood coming from his orifices at all times. My dad still insisted on ambulating to toilet even though he was using a catheter for urine, There were issues with catheters and his urethra was blocked etc. In February I saw him and sat with him as he was curled in a ball in pain. He no longer engaged with me. I then went to see a consultant who finally told me that my son was ASD ( along with all the other issues he has). We came back to dad and I sat in the bed with him. I left him at 8 pm to get back to my daughter and son. At 9 pm we got the call to say that he had insisted on using the commode. He had died after sitting in it, his heart gave up.

Insofar as my mother was concerned my dad had been her primary carer as I was living in another city. My DH got offered partnership in a prestigious law firm ( top 20) but we were going to be too far away from my parents and luckily a firm in my parents city offered him partnership. I realised thst I needed to be near mum. Unbeknown to me my mother had been suffering a series of TIA and had severe heart failure. Dad had never managed to get her diagnosed with anything. I staged a sit in at the GP to get her diagnosed. That GP was later suspended for failure to show proper care to elderly with conditions like heart failure. He gave my mother antibiotics for her chesty cough! Thst was quite sick as can be seen. One day I get told that mum was having a funny turn, I went around and could see that mum was weakened on one side but dad refused to call an ambulance and said it would pass. I called my brothers and we had to literally beg dad to get 999 support. At that point we get told that mum had terminal heart failure as well as dementia. We brought mum home. at the time my sister was also helping so we split shifts with more people. My mum began to scream about pains in her legs at 1 am etc. She would not eat and slumped into her food. An ambulance was called. She was in hospital for several weeks and they stabilised her food intake by giving her sodium valproate. I was told by the specialist registrar that the mistake we made was calling the ambulance. We could not cope any longer so we placed her in a home. however dad was distraught and wanted her to eat. I was really still relatively young at the time with really young children one of whom was still having lengthy convulsions and his own issues. My dad wanted me to come to the care home with him to try to get mum to eat. I went hun every day to see mum for the next 7 months as he wanted me there.

We stupidly had placed her in a care home bed and it was not a nursing home, we did this because it was all new, sumptuous with an en suite and cost a lot at the time. On balance I regret that but we had been assured thst all her needs would be met. As the months went by, the efficacy of the sodium valproate wore off, mum could not eat or wanted to eat. She was starving to death. I begged dad to move mum to a nursing home but he refused. He accused me of making things difficult for him etc. The care home only gave my mother paracetamol as she thrashed and clutched at the sheets. They told the GP that they did not perceive pain. She was bringing her knees up to her stomach and grimacing. The week before she died she suffered blood loss from her bottom and shock. I think thst someone had tried to induce a poo using their fingers. The advice was to keep her situ. We had another week of intermittent calm and then the tossing and clutching at sheets with sickness. The GP did give her an antiemeretic. After she died, the care home manager left that care home. 2 weeks before my mother died I made the decisions with my dad not to use a feeding tube. After my mother died I found out that all the times I had looked after mum to give dad time off and put my son into nursery that I paid for to have the privilege of caring for mum, he had been seeing a mistress of 37 years.

Rwanda is a red herring!

The amount of money we would need to give our aging and unhealthy population optimal healthcare is completely unaffordable even if all public money was devoted to this. You are completely downplaying the scale of the issue. Rwanda would be a mere drop in the ocean. If you have ever had to fund a week in a nursing home then you would know this!

From the Guardian article shared earlier, of 13,102 Canadians who died under the Canadian system, more than one-third of respondents said their decision was, in part, informed by a feeling they were a perceived burden on family, friends or caregivers.

They probably were a burden though. I don't mean that in an unkind way because it comes to us all in the end and I would absolutely hate to be a burden on my kids. That is my fully informed view and one that I feel shouldn't be dismissed.

Nursing homes cost £800 to £1500 pr more a week. There are 500,000 people in nursing homes at present, Much is private funded so that’s huge amounts of family money being spent on privately funded care homes, Care homes are cross subsidised by private payers as the Council pays about 2/3 the amount of private payers. This figure will hugely increase as time goes by.

Im not saying this with a view on this debate, I’m just stating the facts.

Also I was lucky in that as we predominantly cared for my parents we had low care home costs ( my mum for 6 months ). I might add that I would rather have paid care home costs for them but life is not that simple.

However with things continuing as they are the tax rate is going to have to increase sharply and at present the low middle and middle earners are the ones paying less tax than in Europe. There is no magic money tree.

Absolutely. I live with a terminal illness and to be honest it makes me kind of hate my doctors knowing they hold all the cards and are essentially box ticking me on my way to the grave. I'm alright at the minute but when I stop and think about it properly, It's like being on a conveyor belt to pain & suffering and nothing I can do about it.

The choice should be MINE. (That choice and others but that's a whole other conversation!)

Also, much of my care and the restrictions around meds are to do with saving costs even if they'd give me a better QOL, yet it's fine for me to languish and rack up expenses at the end when I'm no good to anyone - makes no sense.

This is part of mature debate. I have every right to not want to burden my loved ones. My gran spent ten years caring for her demented aunt and she was utterly determined that no relative of hers would ever face such a responsibility. It shouldn't be the main reason for choosing an early death but of course it's going to form part of the bigger picture. And that's fine.

Sorry having RTFT but I agree with you OP. My grandmother was basically starved and left to die the last two weeks of her life, it was horrible to watch. It was the Dr recommendation, which was basically euthanasia. Much kinder to give an injection

I agree about the fact that lifestyle has a huge impact on the risk factors of dementia. I am personally terrified of my brain being more at risk though, given that I had a mild TBI, and was injured permanently an off label antipsychotic and now have a neurological involuntary movement disorder called tardive dyskinesia. I know there is a lot I can do to mitigate the risks but it's still a worry.

When I went through the initial stages of post concussion syndrome, I remember at one point, I had what I call my "Alzheimer's moment", when I went out and didn't recognise the street a couple of blocks away. At one point, I couldn't read properly either, which was equally crappy and terrifying. I said to my DM at the time that if dementia was anything like that, I'd happily say to them to help me end my suffering earlier.

Well if people cannot advocate for themselves what qualifies you to say whether their life is worth anything or not ? Euthanasia for someone who can ask.for it and understand it is one thing but allowing babies, disabled children and adults to be killed ( because that is what would have to happen if they didn't die on demand to suit your agenda ) because they are an economic inconvenience is appalling .
And as others have pointed out why are we preserving the lives of prisoners and serial offenders then ? Should we start to.save the cost of housing these people ? Not to mention the rehabilitation and other costs involved in the penal system. Think how much money could be saved there.

See where does it end ? And people think.it is an overreaction to say it but that is the Nazi ideology of Hitler and Co.
He didn't just kill Jews for economic reasons but in the end anyone who didn't look sufficiently Germanic was fair game . So people were gassed for having large noses and looking a bit Jewish etc . And of course disabled were as well because anyone that wasn't perfect and didn't fit his agenda was in the firing line. And a whole nation went along with it ! People say it couldn't happen again but I only have to read a post like yours to see how it v easily could.

So that is why we talk about the slippery.slope! As soon as you decide one group of peoples lives are more important than another you are on v dodgy ground.

Dementia death isn’t comparable to
murdering premature babies or the disabled, so shriekers can’t get anywhere with that. I wonder why they do think
it’s similar, ew.

The key symptoms of dementia are fear and pain - the physical deterioration is a distant second.

Palliative care is only given to the dying. Dementia sufferers don’t get it cos they have to wait till their brain fails so badly the automatic triggers for heart and lungs stop.

Watching someone die of dementia is memorable and not in a good way.

Cruelty care must stop.

The care costs should be part of the NHS. I totally disagree with the idea of private care homes making profit from elderly people.

I can totally see the frustration that people who have worked hard, spent wisely, saved, bought a house in the hope of passing something to their kids end up paying their own care and actually not a penny better off than people who have kept up with the latest fashions, or been on benefits for most of their lives.

The super rich pass money on when in good health the working classes can only do it when they no longer need the house.

Not funding care almost feels like a way of keeping working people down.