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).

At the end dad was not talking or communicating. He went from having a view to being curled up in pain in a ball. There’s a difference between a year before death and the 3 weeks beforehand with cancer!

It's still not up to doctors to decide to put someone down.

It sounds like his care was not well managed, that does not mean someone hastening his death - especially when he didn't ask for that - is ok.

If vulnerable people think their death may be hastened in ways they didn’t ask for by doctors some will avoid seeking medical treatment.

I probably was on the fence about euthanasia before seeing my father die of terminal cancer recently and two grandparents with dementia. It was truly horrific. My dad was in awful pain. We had to beg for morphine, and wait for the sign offs to be done, which took a long while as staff told us they were too busy. He was screaming in pain, thrashing about, sick, blood coming out of his mask. We were traumatised for a long time afterwards. It wasn't a good death, pain wasn't managed, and it's really awful watching someone you love in such pain and confusion. It was terminal, he was never going to get better, and he had told the doctor he wanted to die and had signed a DNR. I would have given anything for extra morphine to stop it for him.

My grandparents both had dementia, my grandma for many years. She in particular was terrified, didn't recognise anyone, and spent a lot of her last years very fearful, confused, no enjoyment in life. She eventually took over a week to die in hospital, where they withdrew food and drink, and she basically starved. Like a PP she was tiny, so thin, like a little bag of bones. The nurses didn't want to give more morphine, she was crying in pain, and also because she didn't recognise the people in her room. She would never have wanted to end up like that.

With my grandad, he had several co-morbidities as well as dementia. He had said several times he wanted to die, didn't want to have advanced dementia, didn't want to go to a home. He should have had the right to choose. Instead he could enjoy nothing by the end, couldn't recognise anyone, couldn't converse, read a book, follow tv or a football match which previously he'd loved. Had to drink out of a baby's sippy cup, and eat small amounts of blended food because the swallow reflex goes. He had several bouts of pneumonia, heart problems etc, and each time was rushed to hospital and treated, with the dementia worsening after each bout. There was no benefit to him at all in keeping him alive.

I'm now so in favour of assisted dying. I would want to choose that for myself. We should respect people's right to choose. For all those saying kill yourself before, this isn't the point. People deserve a pain free death with the appropriate drugs. Not having to hang themselves or slit their wrists etc, with the worry about family members having to find you. And having to worry about doing it far too early while you're physically capable

Maybe the starting point is saying, terminally ill adults without medical capacity to authorise treatment shouldn't receive it.

Actually withdrawing food and water is a kindness.
Ketones provide the sensation of satiation. It is heartening to know that as ketones are produced, simultaneously dynorphins are produced through the breakdown of proteins. These dynorphins are a type of endogenous opiate that is 6–10 times more potent than morphine and also provides an analgesic and anesthetic action (they are known as kappa agonists) (28). An anesthetic effect is different from an analgesic effect (pain relief). Anesthesia blunts feeling and causes drowsiness and apathy. This drowsiness and apathy allow for relaxation and an indifference to what is happening (28, 29). To a healthy person, this is distressing to imagine, but it comforts an individual at the end of the long process of starvation. When we withdraw or withhold ANH from a patient, the starvation process does not cause the patient’s death unless he is already near starvation due to being in the late stages of the disease process (i.e.; Cancer with cachexia

This is not an uncommon approach really. Often people who have a terminal illness, or even who are just old and frail and nearing end of life, will refuse treatments to extend life (as opposed to treatments to provide comfort.) Even improving quality of life can be a trade off if it's an invasive treatment.

A good GP should really help their patients navigate these kinds of decisions, and many do.

Where the patient does not have capacity usually the family member or whoever is in charge of the person's medical decisions can be guided in the same way.

So sorry for your cousin. His life must be horrible. I don't agree with the financial aspect though.

I have mixed feelings in cases like this. I agree wholeheartedly if it were me I'd not want to live, But he has never had nor ever will have capacity to make a reasoned decision.

We then have the issue of his illness being resistant to treatment today. But could an entirely new and succesful treatment come in 5 years time. Equally he could live another 40 years with the same lifestyle as now.

For things like dementia, cancer etc. The physical damage is already done by the time most are at the end of life stage. With mental illness and the right treatment we could improve. I'm not sure even a team of medical professionals could make an ethical call in situations like your brothers.

Absolutely, I agree with how much people really try not to dwell too much on the awful reality of death, be it from dementia, cancer, or another horrid way to die. After all my DB went through before he passed away aged 34 from bowel cancer, I think it was actually a good thing that I witnessed it. Not obviously as I wanted to see him suffer or die of course, but because my experience of someone seriously ill had been (thankfully) very minimal before that point. Of course, it was absolutely heartbreaking to see him suffer and how dreadfully ill he was wasted away with cachexia of late stage cancer, 💔 But I needed to get a real experience of seeing a loved one with that rather than the "safe", sanitised version my parents would probably have preferred me to see (such as with my grandma when she was ill near the end). That was so I didn't see the awful result and reality, so my memories wouldn't be tarnished by such awful reality. But I needed to say goodbye properly to my brother, as terrible, terrifying and heartbreaking the true illness was.

I'm so sorry to hear about your cousin too. It sounds dreadful that he is in so much distress and so his quality of life isn't good 😢 I hope you don't mind me asking, but you mentioned the side effects of the meds that he finds embarrassing and distressing - are those side effects things like akathisia, tardive dyskinesia and Parkinsonism type symptoms? If so, I have personal experience of these (and I have had the misfortune to have the movement disorder tardive dyskinesia now for a decade after I was injured permanently by an off label antipsychotic prescribed for severe insomnia and anxiety after a head injury and post concussion syndrome). Living with these drugs' side effects are very difficult so understand totally how your cousin would be very distressed. (Forgive me if this isn't what he has, I hope that I've not got the totally wrong end of the stick 🤦)

I think before we start talking about euthanasia we need to have grown up conversations about end of life and death and dying. In this culture we like to pretend it doesn’t happen and we hold onto people until the bitter end. So many people haven’t been to a funeral until they are middle aged.

Many older people live with a terrible quality of life these days when in previous generations they’d have died years before. If someone living in a care home with dementia gets pneumonia we treat them for that and they may live a few more months. We give vaccinations to prevent older people getting flu, pneumonia, covid etc all of which would have carried people off previously. As a result they live longer lives but those extra years are poor quality and as you’ve seen, often expensive.

Its a total contradiction as family members say to me at work exactly what you are saying, that their mum wouldn’t have wanted to live like this and that you wouldn’t treat a pet like this but at the same time they’d be horrified if it was suggested that maybe they could stop all their preventative medicines and we didn’t treat their latest infection.
You’ve been saying throughout this thread that you were desperate to hold onto your parents so it seems unlikely that at the time you’d have decided to euthanise them so would the doctors have had to decide it was time (most likely against your wishes?) That seems a bit of a slippery slope to me and awful for staff.

There is constant vaccination for flu/pneumonia/Covid in care homes God forbid you disagree with this as it’s seen as putting other residents at risk. We are actually making it harder for sick people to die.

How is it controversial or unreasonable (or whatever else you're trying to suggest) to not want to suffer unbearable pain? Or have to watch someone else suffer that? I didn't sign up for that. If that's really what life is then they really should stop calling it "beautiful" and a "gift". No I know life sucks at times, but I don't expect utter trauma and to have to go to a therapist just to deal with it. It's partly about OP because she's the one that has to live with the memories for decades.

Yeah when you think about it. It makes little sense to vaccinated terminally ill people.
I can kind of understand if it's people who still have some enjoyment in life, even if their body is a bit goosed, as long as they are able to consent to the vaccine.

But I'd bet they'll be people vaccinated who are completely unable to consent to it.

I was discussing this with a friend of mine who is a doctor (hospital) a while ago and he said something that stayed with me:
"I don't want to euthanise people. I also don't want to be pressured into attempting CPR on people in their 80s. And I sure as hell don't want to be doing both on the same day!"

I just remember waiting all day for a prescription from hospice and then trying to work out what to do with it on a Friday evening at 6 pm when the immediate out of hours chemists did not even stock the particular medicine and the only one that did was several miles away.

But I'd bet they'll be people vaccinated who are completely unable to consent to it.

@Needanewname42 In that case, a best interests discussion should be made with the family, about what is in the resident’s best interests. The discussion should consider what the resident would have wanted, if they had capacity, although that is only part of the decision, not the over-riding factor. The family should sign a consent form for vaccinations. Doctors have the right to make the clinical decision, after listening to the family, but they don’t have to do what the family wants. If there is dispute about a medical decision, ultimately it should go to the Court of Protection for it to decide. It operates 24/7 in emergencies.

I think this is a very good description of the challenges for the medical profession

It would take a brave doctor to say to a family - Granny is terminally ill, I think we should skip the flu jag this year, and see if flu will naturally end her suffering.

It would make more sense to say the person needs to have capacity to sign. And let nature take its course.

I think their is a huge amount of pressure to vaccinate because the NHS can't deal with an influx of elderly people every year.

Even when they first introduced flu vaccine for under 5s 10-12 years ago. The wording was basically we think preschoolers spread viruses so vaccinating them will help prevent spread in more vulnerable people.
I cannot remember the exact wording but it wasn't about protecting little people.

However remember the back lash

Sorry hit post too soon.
Remember the back lash when covid infected people were moved from hospitals to care homes.

It would make more sense to say the person needs to have capacity to sign. And let nature take its course.

It’s just as much a can of worms. There cannot be blanket policies, it has to be done on an individual basis. There are many more people, who don’t have capacity than just the elderly with dementia - those of working age with severe mental health problems, learning disabilities, and neurodegenerative diseases (like Huntingdons I guess). That would be euthanasia by default in the case say of a virus, that can kill, like Covid.

People talk about dying from covid as if it’s some sort of easy option. Covid deaths were some of the most symptomatically complex I’ve ever faced.