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).

Well it would be debate about what the legal position should be. At the moment we aren't allowed to make our own choices unless we end our life without help. Assisted dying involves other people (medics, family etc) it has wider impact.

If you had the courtesy to read the thread it’s widely duscussed. Capacity, informed consent, coercian, QOL judgements and who makes them, value judgements about human life, the legislative impact and the financial get out clauses regarding properly funding health and social care, slippery slope, vulnerability, Canadian experiences, the people required to carry out euthanasia -All there for debate.

It very much does still happen, my experience is in community nursing environments mostly. I am no longer in the profession, but I witnessed it 5 years ago with the death of my father in law. A wonderful community palliative team (GP and cancer nurse) arrived, administered his pain relief and he was at rest 30 minutes later after 4 days of gradual but very distressing decline. I also saw it in a hospital environment 3 months ago when my uncle was dying of liver mets. He began rattling at 1pm, we asked for pain relief for him and he was dead 15 minutes later.

Syringe drivers are used BECAUSE people are approaching the end of their lives ( as well as being used for effective symptom management in non terminal situations)

Sub cut requirements increase BECAUSE people are approaching the last days snd hours of life.

Time and time again we hear people say ‘The syringe driver went up and two days/a day/6 hours later he was gone’

The syringe driver was needed BECAUSE a patient was dying and NOT to cause death.

Whilst people rush to share these examples, no thought is given to patients or their family members who are already apprehensive and unsure of the role of palliative care and are terrified of their deaths being hastened.

I do not intend to use up any money that could enhance my children's/their children's lives merely to keep me limping on when I have no quality of life.
I would rather die a little bit earlier, with dignity, than carry on in pain, discomfort, embarrassed that someone has to wipe my arse. Absolutely no thank you. So yeah, I am keen for them to pass the euth law here, the sooner the better.

My mum was very "take me out the back and shoot me" about the idea of getting dementia, having cared for my dad who got it in his early sixties.

Now she's got dementia and although she's lost a lot of capacity she isn't often unhappy, and although it's not much of a life from my perspective, she can't walk or go to the toilet, feed herself, doesn't really know me nor can she hold a coherent conversation but she is still mostly having an okay time, and seems to appreciate aspects of her life, like food and she fucking loves cartoons so I'm conflicted when it comes to people with dementia, although I reckon that's the illness that would encourage most healthy people to the clinic.

This is exactly my point - it’s not suicide because you’re not causing the death, it’s assisted dying because death is assisted to come with as little pain as possible.

in our current system and for the administration of pain relief, it is understood pain relief is administered in order to relieve pain, on the understanding that the secondary impact will likely be the suppression of breathing and the hastening of death. This is (or should be) communicated to the family if they are present and patient if they are conscious (which they very often are not at this point). I have never once heard of a family refusing to allow pain relief in order to prolong their loved ones suffering in this circumstance.

My grandma was a nurse and we discussed her career often into her late 80’s. She said it was far more common to die at home than in a hospital when she was nursing, and she said when a patient was understood to be end of life, she regularly used to get a call from families to tell her they’d all said their goodbyes and could she send the doctor round. The understanding here was the doctor would euthanise the dying person once the family were ready to end suffering for all. She said it was quite common for nurses to attend alongside the doctor for these visits so they could do last offices straight away, there was no question the doctor was there and the patient would be dead soon after that visit. Doctors new patients in their community and had often treated them for decades. They knew families. This dignity in death is lost now and we are all poorer for it, I think. We have lost the ability to leave things unspoken and unseen for the greater good. We all feel the need to uncover and legislate at the expense of compassion and nuance. Sadly, I don’t think we will ever return to the personal nature of care and therefore the system which enabled dignity in death in that unspoken way.

The only route I see now is to set criteria as we do for DNAR’s and allow doctors to discuss dignified death with the patient and family. This route means it is never a layman’s choice to die, but rather a clinicians choice to offer the option that when the time comes and suffering becomes too great, it is possible for the family or the patient themselves to choose to quicken death that is sure to come soon. We also already do this to an extent - doctors talk about the withdrawal of life prolonging care with families all the time. This is just an extension to say instead of letting suffering consume the final days, being about a peaceful end already bound to come.

It sounds like she is still at a stage where she has some sort of quality of life. In a few years when she is beyond being able to a follow a cartoon and laugh that's when it gets more questionable.

What eventually happened to your Dad? Did he get to the forget how to eat stage?

‘This is exactly my point - it’s not suicide because you’re not causing the death, it’s assisted dying because death is assisted to come with as little pain as possible’

There is so much wrong with this I truly don’t know where to begin.

They shouldn’t. But you can’t envision how this could be abused? That some people will look around and say ‘who next?’ That we will start to put a value on individual lives and what we perceive individual people to be worth? Do you have anyone in your family with a disability or other condition which costs a fortune from an NHS perspective? I am guessing not.

I watched my mum die with dementia. It was fucking awful. I wish it could have been different and I would sign up now to be euthanised if dementia happens to me. First in the queue. But I have a child with type 1 diabetes - he’s expensive to keep alive. He can expect to live an average life span and be a productive member of society. But unless he’s a millionaire, he’s never going to cover his health costs. And he may well become more expensive as the years go on what with the possibility of kidney disease, problems with his eyesight, thyroid problems, heart disease, etc etc. I can envisage how the OP’s question - should we have an honest discussion about euthanasia and care costs - could be used against him and others like him. Imagine being that person, living your best life, friends and family, when someone says ‘people like you are just not cost-effective’.

I am pro assisted dying for people who currently have the mental capacity to make an informed decision.

Those who think it’s ok to sign a form aged 50 saying “euthanise me if I have dementia”. At what stage? Who makes that decision? It’s impossible to legislate and open to enormous abuse.

Do you have anyone in your family with a disability or other condition which costs a fortune from an NHS perspective? I am guessing not.

Actually I am that person, thanks for the assumption that I’m not. I have suffered chronic pain half of my life, I’ve had my fair share of lifesaving hospital visits, have expensive fortnightly injections, years of genetic therapy and my prescription medication is in double figures. Weirdly dementia is a disease the NHS already couldn’t be less bothered by, despite it being the biggest killer of women. It’s diagnose and fuck off, if you’re lucky you might get a yearly GP check up, if your symptoms are severe mental health might get involved but will still be reluctant to prescribe enough medication to actually work. The cost of dementia care is mainly picked up by families and local authorities. Consequently councils are going bankrupt. Meanwhile the NHS pretends dementia is a purely social problem. So no I am not worried at all that if euthanasia becomes legal I won’t be able to get my life saving medication. Not at all. I am worried that I will end up demented and in pain with no way to articulate it and get any relief, for years, self funded. That sounds like a fate worse than death to me.

I remember this song and it's video when it first came out. It does exemplify very much what those of us who do support euthanasia feel and worry about.

As a PP said, Imagine lying in a bed with dementia or any other medical issue. Unable to communicate with those around you. Unable to look out the window. Dependent on somebody coming when you soil yourself. Somebody left the TV on and it's driving you round the twist, unable to tell them to turn it off.

That is torture in my book and something that terrifies me.

I don't live in the UK, but why is life in a care home always portrayed as being a fate worse than death? Care homes here have their share of those who are not exactly living the dream, but there are also many people who are living quite happy lives, free of the burden of trying to care for themselves at home. My mother, who didn't want to go into one, adjusted from the first day and was quite happy. She was living exactly the way she did in her own home, but without having to do housework, cook meals etc. I will be more than happy to move into one when the time comes that I can no longer manage at home - I would certainly far rather be in one than dead!

He had a different type of dementia that progressed really quickly. My mum has Alzheimer's but also has another health condition that'll probably get her first

I have seen three dogs and six cats put to sleep by injection and have NEVER seen a really horrible bit just before they go under. It's always been extremely quick and they just close their eyes and that's it. It couldn't have been more peaceful.

Try and find a beginning - this is a discussion and it’s ok for us to disagree agreeably. Comments like this one contribute nothing to the discourse, why not use the space to share your different views instead of disparaging others? I’m completely comfortable being disagreed with if you can articulate why?

I can’t answer for others but for my Nan (technically my great grandma) it was fear of being forgotten. She didn’t start with dementia until she was 90, she lived to 102. She went into a care home at her insistence aged 93 because she felt unsafe at home after locking herself inside and losing her keys (she’d posted them through the letter box to the outside).

We visited her a few times a week as a family, she saw more of us while she was in the care home than she did when she was in her own home. She’d forget we’d been though and when she was sunsetting (a phenomenon where dementia patients become more confused at dusk) she would walk up and down the same corridor screaming for help because she thought she’d been left at a hotel by her parents. Nothing could distract or calm her so eventually, the staff stopped trying. Nan was completely tormented for hours on end every single night for just under 6 months. In the day time she was quite lucid but unfortunately always remembered the feeling of lost and forgotten even in her lucid hours and was constantly filled with terrible anxiety. It’s not that care homes are inherently bad places, they’re just not places conducive to a good death.

Eventually, my mum decided Nan could live with us and she did for 8 years. She slept in a bed in our dining room until the day she died. For the first few years you’d not have known she had dementia until the night time, she shuffled when she walked but could hold a conversation. She got gradually worse but without the anxiety. She knew she was safe I think even when she didn’t know anything else. She had a brilliant death. Riddled with dementia but happy as a clam, went to sleep watching corrie and didn’t wake up again.

You suggest that nurses are systematically going around carrying out ‘assisted suicide’ and you expect reasonable discussion? You’re not worth it.

There are care homes where people live and nursing homes where people wait to die.

This isn’t correct. Many people with dementia never require nursing care and therefore, live and die in residential care homes. Also, there are homes who have dual registration so people can either receive residential care or nursing care.

Well that sounds sad, but the point I was trying to make is that not everyone in care homes has severe dementia. Here, if you have severe dementia you go to a home which specialises in that type of care. However, there are the rest of the ordinary care home residents, who have mild dementia, or no dementia at all but just can't look after themselves for one reason or another. Why, on MN, is it assumed that if you are in a care home you have dementia and are living a hell on earth life?

Well, that doesn't really answer my question

@ForGreyKoala

There are residential care homes and nursing homes and in my experience, most have a dementia unit or floor. In the other areas of the nursing or resi homes, people may be there because they need 24 hour specialist care for physical health needs, for example. They may need hoisting and personal care and for various reasons, it’s not possible in a home environment- sometimes because they need 2 to 1 care at night for hoisting or repositioning. So, there will be plenty of people in care homes who don’t have dementia or any cognitive impairment.

But why is it that so many on MN have this idea that living in a care home is a miserable experience? That was my question.