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 don’t want to die because my palliative care is very likely to be poor or I can’t afford a carer, that would be a choice borne out of societal neglect. I want good palliative care, more research and a properly funded social care system. Once that is in place then I’ll be happy to talk about assisted dying.

If the average life expectancy is around 80. I'd quite happily take my circa 15 years of old age in good health and a reasonable ability to enjoy most activities. I don't want to be wearing a nappy and relying on people to feed and wash me. I really don't get why some people feel the need to say my desire is wrong.

I agree with you. Can’t imagine anything worse than being completely dependent on someone for the very basics of life. I’d hate the indignity of it all.

I don't think most supporters of euthanasia are in any way saying you shouldn't get that, if you want to take palliative care until the end that should be your right and a fair expectation.

But equally I should have the right to say I no longer want to suffer in pain with eg cancer, because the pain relief isn't working. If I make that decision to go early, that will free up palliative care for others who do wish to die 'naturally'.

Well that would offer some improvement even if just stopping the last 14 odd days

Training, discussion & vetting those who would be carrying out these procedures would be imperative.

As you say it is incredibly difficult to emotionally detatch if a person is saying 'no don't do that'.

To my mind I'd be considering it in a similar way to a person in a mental health crisis. They may make suggestions of self harm. They may behave in incredibly dangerous ways. They may carry out sexually innapropriate acts. etc etc. But you then ask them once they are stabilised did they want to do any of those things, and of course the answer is no.

The person with dementia is similar but there is no long term stabilising for them. So we look towards when they were of sound mind for their wishes.

Are there other conditions similar to dementia where an advance directive would be undoable?

I don’t think that good palliative care is a thing. Death is painful and if it goes on for weeks
and weeks, more so. Death can be frankly gruesome especially with cancer. Your body is just rotting away and becoming a friable pulp. Your body also lets off a smell which is repugnant to those more sensitive to it.

Dementia it’s traumatic more in the middle as they get scared about no longer being who they are. The thing that troubles me with dementia is they can’t vocalise pain so if they have excruciating tooth ache ( and many have rotten teeth) they can’t express that. I worry about other aches and pains all over the body - my friends mum has a broken shoulder and they never re set it - they just left it for a year before she died.

The ideal death is an unexpected shot to the head from the rear with no illness beforehand.

I just wonder how many commentating have actually worked closely with people who are dying. I mean there is a difference in seeing someone in a sanitised way and actually cleaning the body and helping to the commode or wiping the blood etc. I think that when cancers grow into the head it’s pretty awful as they eat through the eye and into the brain.

Care homes try to present the person with a blanket popped over newly cleaned etc and maybe a bandage or eye patch over the rotten eye.

We understand more about coercive control and also what has been termed elder abuse. I am not sure that the proposals being discussed at present will avoid this.

I do expect though that euthanasia will be discussed in this Parliament and voted on.

My DF died of cancer. I sat by his bedside for his final week. He could talk to me for the first few days then he had a driver to ease swallowing and breathing, he didn’t seem in pain. The worst part was when he was coming to terms with being terminally ill. I don’t remember a smell.

My DM seemed fine but didn’t ever go to the doctor. She was found dead alone on in the floor, probable heart attack. She hadn’t seemed ill. I’ll never know how long she was there for before she died, hopefully it was relatively quickly and she wasn’t scared but I don’t know. Maybe it was like your shot in the head or maybe it was a few days. I’ve just had to learn to stop thinking about it.

For me there are just too many questions about how we look after and fund the care of vulnerable people at the current time for this to be something I am comfortable with.

Yes many degenerative diseases eventually end in cognitive decline. Parkinson’s, MND, some cancers, strokes, even MS sometimes. Late life infections can also cause loss of cognition but that’s usually temporary with treatment.

From experience, most people who live a long life will experience some form of lack of lucidity in their final weeks. Part of me sometimes thinks it’s the brain protecting itself from knowing what’s happening. It’s often a mercy as long as it’s peaceful, which it isn’t always. The worst is when the confusion is new to the patient in the final weeks and it brings about torment. I once cared for a lady who was absolutely haunted in her confusion and would just howl for her daughter. She only had 3 sons as far as we knew at the time. After she died, a few of us went to the funeral and met her family. It turned out she lost a baby girl during the war and never told anyone. Her living children were born over 10 years later. It was her sister who finally told the family to answer the mystery of her confusion after the lady had died. Absolutely awful.

There’s a smell all right. Nurses usually use grapefruit oil diffusers that don’t work.

The cancer sufferer is breaking down physically before the heart stops.

Good time to end details, I think, which is annoying cos reticence won’t help people who don’t die before this happens.

Noras I know from the posts that you have shared that you found the deaths of your parents deeply traumatic. Is your experience something you have talked through with an experienced bereavement counsellor? And if not is it something that you would consider now?

I agree Noras. Something has to change doesn’t it. I have my own plan because I want to be in control of this. And I know I won’t be able to afford Dignitas or make the journey.

Heartbreaking.

Who by the sounds of it had no capacity to agree to medical treatment for his cancer. Which is gruelling at the best of times. Would getting rid of the cancer actually improve his life?

That's not what assisted dying means though. Assisted dying means deliberately bringing about death.

Agreed. And I also think it's easy to say you'd want to be helped to die when you're still relatively young and healthy, but you may feel differently when the time comes....it's human nature to cling to life. None of us know how we'll feel at the time

I don't know about anyone else, but for me it was seeing what happened during COVID. People were essentially kidnapped and kept against their will.

It doesn't matter how nice a place it is, I would be very wary of going into a place where that could happen.

Some of the care homes where I am do have a pretty awful reputation, and it's justtified.

Usually it stays buried and on a day to day basis I’m fine. I helped a close friend when her mother was dying this year and it did re surface a bit.

I’m writing graphically because people don’t often see death. They hear words like ‘someone passed peacefully in their sleep.’ We literally bury people into nursing homes and see few very elderly people at the end of their lives. I think the this is the issue. We want things sanitised/ tucked away and if people speak out as I have done it makes people uncomfortable. The Royal Family was a case in point - we could all see the black bruising on the queen’s arms and we all saw her wear gloves for a year or so behind. At least now the RF realise that they can speak out and say ‘yep we are not well and need to have time out’. I just think that a bit of honesty is good and really very few people ‘die in their sleep.’ That’s the Holy Grail of a death not likely to happen to the majority of people. The reality is that it will be a cancer, a brain disease like dementia or an infections ( that makes your organs go into shock with sepsis) that will kill you unless you happen to have a weak heart etc.

Frankly it’s up there with the secret woman once carried about childbirth. Woman did not like to go into too much detail with that either. At least with child birth you get a baby out of it.

It should absolutely be about quality of life not quantity. As regards those with dementia if that person as made a legal declaration when they had mental capacity (in a highly regulated notarised interview) that they be given a life ending dose of something when they reach X point in their deterioration then I think it can be managed - but should apply in very controlled circumstances.

The difficulty is there’s creep - look at Canada, started off very restricted now young people with poor mental health are agitating for right to die. I don’t know how it works in Switzerland or if there are other countries with legalised euthanasia doing better at it.

Also, doctors carrying out invasive life prolonging treatments when there’s no hope of any quality of life without high levels of pain and suffering - why? I get that sometimes it’s upset relatives pushing to keep their loved one hanging on for their own feelings, but there needs to be more dialogue about realistic outcomes.

I can’t fault the level of palliative care my dad had in the last three months of his life following a terminal cancer diagnosis. He has a good death with no pain, should be that way for everyone.

Yeah people don't want to hear it-even on here they'll be like "have you had counselling" when what you are feeling is entirely NORMAL. Who would feel ok about it?

I hope those intending to cling on to the bitter end in agony are going to at least spare their kids from having to watch it. It will mess them up. We put in the paper my dad passed away peacefully as well-technically the end might've been peaceful (he went unconscious) but it was preceded by 18 months of horrific suffering. People don't wanna hear about negative things in life, they'd rather you told all that to a therapist so they can keep burying their heads in the sand pretending we have actual palliative care in this country. I also believe that's not enough-unless they're going to start giving people fentanyl or heroin.

I’m not going to push the issue further because it’s very personal to you but I think it’s important to acknowledge that your experiences of death has clearly impacted you significantly. I know posters have previously suggested to you that there seemed to be a lot of issues around the choices your father made about his end of life care that mat not have been appropriate, given his diagnosis and the presenting symptoms. I can’t recommend strongly enough that you think about where you are at as a bereaved daughter, and how that is impacting your life even periodically now.

Your experiences, although sadly not unique, are also not typical and I think it’s important on a thread where people are talking about euthanasia to counter the idea that every death is horrific and traumatic. Death is not comfortable, death is not talked about enough but it important that those of us who have also experienced deaths of loved ones AND in a professional capacity are allowed to share our experiences of ‘good’ deaths without being shouted down repeatedly.

As I’ve repeatedly said on this thread we need better and more universally available specialist palliative care for those who need it, and more support, training and education for those who support people with palliative cate needs in other health and care settings.

But to continue to suggest that everybody dies in distress is untrue and unfair to the many, many HCPs who work hard every day to deliver symptom control and end of life care. It also creates fear and distress amongst people who are facing a life limiting illness, as well as their families and carers. If as you and others suggest, everybody dies in distress, then lets close hospices and cut palliative care funding and education completely, cut all palliative care consultants and specialist nurse roles and stop the use of anticipatory prescribing and medications titration. By your assertions we have nothing to lose.