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 doubt they did, morphine and controlled drugs are strictly counted and measured x

I tell you what @Noras why don't you go on to this thread

Daughter locked-in syndrome

and just tell the OP that she should authorise the doctors caring for her DD to kill her? After all, she's apparently locked-in, will probably never recover, and she's taking up an expensive ICU bed when there are far more deserving people who need it.

FFS. You are inhuman.

I find this very disturbing. I believe taking one's life isn't morally right. I'm in my 30s but if I live to be elderly then I would not like to be on my 80/90s and feel guilty for living and being an expensive burden.

There are also cases where people have severe dementia and QOL but doctors still keep them on all their meds and keep treating infections instead of letting nature take its course.
My dad had cancer and dementia and spent the last 3 months of life in a care home barely eating and losing weight continuously. His weight was down to 7st and he caught a chest infection. The GP prescribed antibiotics which didn't work. The care home contacted surgery and a GP called me to say they were prescribing another antibiotic. I queried whether it was in my dad's best interests based on his QOL. Gp said he's not end of life yet. He died 10 days later after vomiting blood and was nearly taken to hospital which we had told the home not to do.

I agree. Be careful what you wish for.

So are you for not seeing the other side of the argument!

Tony Nicklinson, a man with locked-in syndrome who fought for the right to legally end his life, has died.
The 58-year-old was paralysed from the neck down after suffering a stroke in 2005 and described his life as a "living nightmare".
Last week Mr Nicklinson, from Melksham, Wiltshire, lost his High Court case to allow doctors to end his life.
Mr Nicklinson's family solicitor said that he had refused food from last week.
Lawyers for another man, 47, who lost his High Court case alongside Mr Nickinson, are to appeal against the decision.

Why can't we at least have the option for clearly terminal and horrific disease such as MND, cancer, COPD and the situation that the OP described?

I'm sure professionals could come up with a definitive list of diseases that there is no coming back from.

Why should anyone have to suffer with these horrible illnesses?

I would suggest that you look at how many people with that condition have had to go to court to argue for the right to take their lives. What right have we to insist they live like that?

However these people could communicate and also were not terminal.

As stated I am talking about people with terminal cancer and dementia who are about to most likely face a terrible end because so many people do.

My FIL has advanced dementia.

For the last two years he has been bedbound. He cannot walk nor sit up on his own. He is doubly incontinent and needs two carers to turn him twice a day so he doesn’t get bed sores. On the rare occasions he’s moved from his bed it is done with the aid of a hoist. He cannot eat solid food, it all has to be puréed. He can barely talk and only occasionally manages random words. They don’t make sense because he has no capacity to reason. He cannot communicate with anyone around him. He can’t tell people when he’s thirsty, too cold or too hot, when he’s hungry, when he’s tired, or that he doesn’t like the food or he wants the same as he had yesterday. The tv is on in his room constantly and he can’t ask someone to change channels, turn it up or turn it off. If he has a headache he can’t communicate this and ask for some quiet time. He doesn’t recognise any of his family so we have no idea if he feels loved or lonely. He just lies in bed all day staring at the ceiling with the tv on, but unable to turn his head to watch it.

Everything happens to him, he has no say in any of it.

He has a permanent catheter which causes frequent urinary infections. We have been told that his kidneys are beginning to fail and at some point he will go on end of life care. MIL can’t cope with the thought of him dying, so every infection she calls an ambulance or 111 and he gets referred to the emergency doctor and prescribed antibiotics. Each time he sinks deeper into the dementia and loses more of the few words he still has. Kidney and urinary problems can exacerbate loss of cognition in the elderly. Each time he’s pumped full of drugs and treated to live a little longer.

We don’t know how he feels about this. His wishes are now irrelevant because he can’t articulate them.

Aside from the urinary infections he’s still pretty robust. If his kidneys hold out he could live another 5 or more years in this state. Eventually though, the dementia will win. Dementia isn’t just a memory issue, it’s a disease of the brain, and over time the brain loses its ability to function properly. That means no feedback mechanisms, no regulation of the processes the brain normally controls. Eventually his body will shut down and his organs die.

It will be a horrible death.

Currently it’s a horrible life. My FIL used to be very active, he loved sports - sailing, walking, windsurfing. Now he rarely goes outside. The windows are away from his bed. He can’t feel the sun on his face, nor the breeze across his skin. When he does go out it’s a major event to get him into his wheelchair via the hoist. He cannot say if he wants to go out at that time, more frequently, earlier or later or round a different route.

Dementia has taken his world away from him.

Before he became bedbound he had regular appointments with his GP which he would attend with MIL. He was aware he had dementia and was beginning to forget things - events, the names for items and how to complete tasks. The GP asked if he had suicidal thoughts. He said yes. MIL was shaken. It hadn’t occurred to her that he might not want to end up as he has done.

But now, he’s completely trapped.

If he still wanted to take his own life he has no means to do so. He can’t even ask someone to help or do it for him.

I think if he knew exactly how he would end up he wouldn’t want to be kept alive. But, even if he had expressed a wish to be euthanised whilst he still had a capacity to give informed consent, because we do not have assisted suicide in this country he would have slowly declined knowing that his suffering was not allowed to end on his terms.

What does prolonging his life as it is achieve?

Is he really the one that’s benefitting from the medical intervention every time he has an infection?

Would YOU want to live this life?

If not, why do you think he does?

I agree OP, there should be a sensible non-emotional conversation about this topic.

I believe there are too many elderly people suffering because the focus is on prolonging life not quality. It shouldn't be about cost.

I say this having visited many care homes and indirectly working in the care home sector.

Have you nursed anyone dying of cancer or dementia - that’s pretty disturbing. Trust me I can never ever eradicate the images out of my head.

My father was like some horror movie as he wept tears of blood. My hands were covered in his blood, the carpet was drenched in his blood and oh my god the small of the tumour!

I genuinely don't know the answer but I didn't want to contribute to this discussion with the username "KidsDr" and have people assume my opinions about over-treatment were mostly about palliative care in children or premature babies. I think over treatment is a much more pressing issue for adults. Not necessarily ITU level care but things like hospital admission, antibiotics, IV fluids etc in an adult in the end stages of a terminal illness whose quality of life deteriorates further with every medical intervention is a major issue we have to tackle culturally, imo.

When it comes to very sick children, I don't want to to talk in detail about something that is so sensitive, so nuanced and so difficult to generalise. Only to say that in my (albeit fairly limited) experience of children with life limiting conditions I have generally only had admiration for their parents endurance, loving care and advocacy for their children and I have not witnessed (myself, personally) much of a phenomenon of the pushy parent demanding aggressive, unpleasant and futile treatments against their child's best interests. The families I have known have been very bravely and compassionately preparing for their child's death for weeks, months or years - perhaps even since their child's birth and they are very realistic because they are living it day in day out and have become literal experts in their child's (often rare / unique) condition. I think some of the very tragic high profile cases where it seems parents have struggled to face the reality of their child's situation, have given a distorted impression of how most families cope with decisions around end of life care.

Likewise, the care of very sick and/or premature babies is hugely complex and I think many people do speak from ignorance. The very sad decision that enough is enough, this baby is too sick and it's time to stop happens often in the neonatal unit. For parents to push against that persistently is in my experience actually very rare. Processes exist and a great deal of consideration is already given to the ethics of these situations and what is in the babies' best interests. For various reasons it is often very hard to predict outcomes exactly until the baby is already out of the woods / stabilised as it were, and that really adds to the difficulty. Some extremely premature babies do very well with minor deficits for example, even though early on things were very hairy. It can take days (during which intensive treatment continues) for prognostic factors to become apparent. Those interventions which tend to reduce mortality (death) are all the same things that tend to reduce morbidity (illness and disability in survivors) as well. So by that I mean, utilising method X to optimise very sick and/or premature babies means baby A ends up far less disabled and with an easier life at the very same time as baby B ends up living with a very profound, life limiting consequences instead of dying. Only you can't tell the difference between baby A and B when you are doing the optimisation and by the time you have it figured out, what's done is done. It's an ever evolving field, and worth remembering that pushing the limits has saved many many lives.

I cannot exaggerate what I saw as my dad died. The tumour was growing into his eye and his brain. It was disturbing really disturbing. As a human I could not bear to watch it but as his daughter I could not bear to lose him. The whole thing about melanoma is it is a big mass of bloody tumour but his was partly on the outside whereas usually it’s going on inside the body.

The worse thing was feeding him and seeing the food mixed with the blood that release from the top of this mouth. He was eating his own blood and that blood also came out in his urine as the tumour had spread to all his organ eg kidneys and lungs.

A crucifixion would have been easier to watch.

And when you are having to watch this awful sight you are also wanting to be there and let them know that you love them so much.

So anyone who thinks my thoughts evil walk in those shoes.

I would happily say don’t ever let my kids see me like that as I knew they nothing will eradicate the images of dying from my head. It’s nothing like tv or film. It’s not all peaceful and sanitised.

I also agree. Having worked in elderly care for 40 years, watching someone dying over days, weeks, months, even years, is harrowing. This, in a professional sense, obviously does not even come anywhere close to how it feels to watch a loved one disappear into their own distorted, tortured minds and their twisted, failing, pain wracked bodies. It's utterly barbaric. We have made huge scientific and medical leaps in enabling pregnancy and birth in many scenarios regarding infertility, now we need to look at enabling death in certain circumstances.

I was at Warwick Castle and they talked about how they broke bones as torture.

A tumour gets into the bones - the worse pain ever / but added to that it weakens the bones and then breaks the back - I mean it’s gruesome.
How much morphine is needed to stop that pain?
But it’s not one site its in the kidneys, the lungs the brain and oh my God destroying the eye:

You just want it to end but you dread it ending as that means death.

So you are forced to watch this horror show day by day get yourself there. A whole year spent waiting for someone to die in terrible pain.

As is common, the most vocal on here are in the minority.

At the time of my typing 78% are in favour of assisted dying (where the situation warrants it) and only 22% are against.

I am definitely in favour and have been for many, many years. I'm 69 now and would end my (very healthy) life tomorrow if I knew I was going to die in agony or live years with dementia.

30+ years ago, my elder sister died (10 years older than me and she was 45). She had skin cancer, with secondaries and she was definitely terminal. She asked me then, and I agreed, to help her end her own life at a time of her choosing. She did not want to die in pain or live her last weeks/months in pain but her biggest fear was brain secondaries, and NOT being her.

In the end it wasn't necessary. She died, in hospital, 3 days after the doctor had suggested 3 months. BUT I would have helped her if necessary. If it came to it I would have more than supported her, whatever the consequences to me.

I have 2 adult children. They both know my wishes. If there comes a time when their opinion is asked, it will be out of love, that they say 'let her go', not greed.

Not wanting to be a burden is a valid reason, if, like me, you don't think 'life is sacred at all costs'.

Financial reasons are also valid if, like me, you believe in quality not quantity. There comes a time, for some of us, where we do believe the financial burden of keeping a body (which no longer represents the person they were) breathing (not living because that isn't life) is really really not worth it and actually counter productive to valuing human life.

People who do not agree with euthanasia are perfectly entitled to that view - for themselves. Their views are not mine. Why should they dictate to me. Their view is NOT more valid than mine.

We should be encouraged (not forced) to state our view on what we would like for ourselves. First opportunity 40 (maybe), repeat after 10 years, again after 5 years times 3, and then offered the chance to update annually after that. (There should also be opportunity to update at any time if required). Consistent views over the years suggests that the person is confident their choice is right for them. (inconsistent should take others views into consideration)

The avoidance of euthanising someone against their better wishes would then be very much negated.

Slippery slope - I don't think so. If we go on as we are, human (homo sapian) years are numbered anyway.

(We are not ruining the planet. The planet existed for millions of years before us and will do so for millions after. Homo sapian is a blip in the timeline)

I think you are letting your personal experiences cloud your judgement; your father’s death sounds horrific and I’m sorry you had to go through that but your personal experience of poor care is not a reason to suggest that euthanasia be legalised - particularly as you seem to equate the financial burden of state funded care for the elderly with euthanasia?

As PPs have said - your son has ASD, would you be comfortable with people suggesting that the cost of dealing with this is too much of a burden on the state and therefore euthanasia comes onto the table?

Like you I suspect it was the pain relief as much as the cancer that took my Father. I am eternally grateful for that. We were fortunate that he and my Mother previously did get good end of life care.

But I have also witnessed people have drawn out painful deaths. Some of the pain and discomfort the side effect of medications supposed to help them.

Would it be more comforting for the public to become fully aware of the prognosis in things like dementia, altzheimers, parkinsons. To know at the very start the life expectancy and what deterioration will likely happen along the way. To start looking at these as a terminal illness. I'm not sure everyone does.

Another reminder that some people are talking garbage about lack of agency over their own lives.

People with ASD choosing to end their own life in countries where it’s legal ...
Having to order lethal drugs over the dark web to end one's own life ...

It is legal to end your own life in the UK. Whether you have ASD, depression, an incurable illness or are just totally fucked off with everything: doesn't matter, you enjoy the unconditional right to terminate yourself.

It's not even difficult, and doesn't require illegal substances. Drugs are a very unreliable method, as they can not work as anticipated or you can be rescued.

If you reach the point of suffering advanced dementia, cancer, MND, etc, it is safe to assume you didn't actually want to avoid this because you didn't off yourself when you could have.

Before you ask, I do have a plan, thanks. I'm already in my final ten years and there's a fair chance I'll get That Diagnosis before the decade's up.

I've also prepared for sudden events (bad stroke, fall, etc) with an Advance Decision. You can already choose how much life-saving treatment to have.

Now, what about the aunts & granddads you think should be fatally poisoned instead of living "intolerably" (for whom?) They saw a doctor, didn't they? The doctor told them, sadly, they had Alzheimers or their cancer treatment had failed. What did they NOT then do? They didn't wind up their affairs and "go off into the woods", did they? They didn't have advanced decisions or even, it seems, DNRs.

So your complacent beliefs that they would not have wanted this are faulty, aren't they? They were prepared to risk it, knowing the possible outcomes.

I don’t believe in the idea of a soul. I don’t have one. You may take comfort from myth and magic but don’t presume to expect others to do the same.

If, at the end of my life I cry out for help to end it all with dignity and you refuse because you believe the soul needs to suffer, you would be imposing pain and a torturous death on me for the benefit of your beliefs.

That isn’t kind or compassionate, it’s unbelievably cruel. Your god should judge you harshly for that.

I mean we do need to talk about it - but we are, so I don’t understand the comment about growing up - it’s a pretty live debate.

You aren’t helping yourself by putting costs into the equation. It’s about quality of life. If someone at the end of their life needs care but is still enjoying life then they should get it. They have worked and paid taxes. Etc.

I would suggest that you look at how many people with that condition have had to go to court to argue for the right to take their lives. What right have we to insist they live like that?

The obvious difference @Noras is that these people fought for themselves.

They were not killed on the say-so of someone else.

My step dad developed Alzheimer’s at 56, it was the most horrific thing we’ve been through as a family.
My mum wanted him to keep going but it was awful and he would have hated the life he had at the end.
He developed pneumonia and was taken to hospital and I spoke to the dr about refusing treatment and letting him go, he agreed with me and a very lovely nurse came and sat with my mum and went through all the options for treatment and she agreed to let nature take its course.
He died very peacefully that evening, he was 64.

We need to have a frank conversation about death, it’s going to happen to every one of us eventually regardless of what we feel about it. I truly believe everyone is entitled to a good death, no one should suffer as they die, it’s cruel and we should be ashamed as a society that we let it happen.

Yes - this too.

So you are basically giving people the choice of 'got told you have dementia today' so off you pop and commit suicide while you still are able. Or to wait it out and all the pain and suffering that goes with it.

Could there not be a third choice, a middle ground where you make the decision at the start of your illness of how far you are willing to deteriorate before you die. For many it will be the point where they would be physically unable to do anything about it themselves.

What about your advanced directive not to take medical treatment to save your life due to eg a stroke. What if you suffer a serious stroke that doesn't kill you. One where you are left in a vegetative state but aware of your surroundings.

Then factor in the distress and possible mess depending on your choice of departure with suicide. Jump from a high building, some poor bugger has to clean it up.