To want to know how they know he has less than 2 weeks to live? NHS Euthanasia?

[EOLQ]

Evening all.

We've been told today my dad has less than 2 weeks to live.

He has a rare neuro-degenerative condition that's been worsening for a number of years. So while we've known it's coming and is what he's wanted for the last couple of years hearing this news today was still a shock.

But what myself and family can't quite figure out is what caused today to be the day we were told it's so close to the end.

As to me he seems similar to a couple of weeks ago. Maybe even a bit brighter than some of the worse days.

Anyone with end of life knowledge able to help me out?

He has had a lot of fluid on his lungs which has worsened a lot the last week or two. He doesn't for have the strength or muscle capacity to clear it. But is on a medication (a patch behind his ear) which has really helped that.

So is the fluid, even though it's being managed a sign?

He has a bad UTI which won't respond to ABs. Is that the reason?

Or - today he was fitted with a syringe driver to have his morphine and now midazolam (?) administered 24/7.

So I guess I'm wondering do they know once that medication starts so does the clock? A family member said to me that it's the NHS version of euthanasia.

But can that really be the case?

@sillysmiles

Hopefully his passing is peaceful.

]]

I listened to this book as an audiobook after the passing of a close family and found it interesting and reassuring in a way.

I was just going to post recommending this book. I read it while my best friend was dying of cancer and found it extremely comforting. The author explains very clearly about the symptoms of dying, and explains clearly why although they can appear distressing to those watching, they are not to the person dying. It's beautifully written. You'll probably find it pretty painful to read, but if you can bear it I think it will bring you a lot of comfort.

Sending love to you and your family and wishing for a peaceful passing for your lovely Dad x

My dad was in a coma for about a month before he died from cancer. Mum was caring for him at home with twice daily visits from MacMillan nurses to do the things mum couldn't manage.

Three days before he died mum and I were having a takeaway pizza in his bedroom when he woke up and asked for some. He ate a slice, drank a glass of wine and then lay down again. He was a very fit, sporty man who watched his diet and barely drank so it's ironic that his last words were to ask for pizza and wine! We were so hopeful that it was a good sign but it was obviously the last minute perking up people have described. It's still a very happy memory though.

The post I quoted didn't work - the book is "With the end in mind" by Kathryn Mannix

With the End in Mind: Dying, Death and Wisdom in an Age of Denial www.amazon.co.uk/dp/B0752X79CK/ref=cm_sw_r_apan_glt_EJSR363YTKAFG0Y6D06H?tag=mumsnetforu03-21

Hi I'm sorry you're all going through this.

When my Mum was nearing the end, she'd been up and down for a quite a long while. She was also affected by fluid on lungs, different cause but same effect. I had a feeling she was starting to really go downhill, but I don't think my Dad or the rest of the family had realised.

Slightly different situation in that she was at home, with us and carers doing everything, community nurses popping in when needed.

Community nurse who flagged up that she thought it was now time, was absolutely right - and she put things into motion very quickly so that Mum could have morphine etc etc if needed.

Thing is, they've seen this time and time before so they know what to look for, and they know when to step in and say that this is going to happen.

We all felt hugely supported, and it meant Mum got all the care she needed and was able to slip away peacefully just a few days later.

Virtual hugs to you and your family.

@GETTINGLIKEMYMOTHER

Re the food and drink refusal* (happened with an aunt of mine) some doctor put it very well:

‘They are not dying because they are not eating and drinking. They are not eating and drinking because they are dying.’

But from all I hear, relatives often still get very upset and want tube or PEG feeding, because they think the medics are callously trying to starve their loved one to death.

*she was still offered both regularly, but would just close her mouth and turn her head away.

I agree with this Dr 100% they aren't eating and drinking and as such don't need it, because they are dying, their body is shutting down, its a process.

Sending you love and strength OP

My lovely Dad died of cancer at home last year. In his last week he barely spoke, apart from an agitated half hour when he tried to get out of bed to 'go home'.

On Marie Curie's website there's a brilliant short film that helped me prepare for changes during his last few days.

Keep talking to him. Xx

‘ NHS version of euthanasia’

This is so damaging, please educate your family member. Because of people that think like this, lots of people end up dying in pain when they refuse to let their dying relative be given such medicines. The meds make the patient comfortable, they don’t kill the patient or speed up their death.

I’m sorry to hear about your dad.

Isn’t it based on worse case scenario, medics have seen hundreds of people in the same situation presenting the same symptoms and the majority would have died within 2 weeks
Is like end of care when a nurse can tell the patient will die within a few hours so calls immediate family to be with the person. Did that at 3am to my mother when stepdad had lung cancer and he died at 6am

So much helpful information on this thread and lots I wish I'd known when going through this with DGP's. I hope it's helped you too OP, thinking of you and your family

My MiL died earlier this year after a lengthy illness. She also developed fluid on the lungs and this seemed to be the thing that the HcPs caring for her felt showed the end was near. She too was immobile and unable to clear the fluid herself. She was given 24-48 hours but lasted four days. She was also on a syringe driver and we all thank god she was, her passing was peaceful and gentle and although she stopped communicating she could clearly understand and respond to voices and smiled when she hear her grandchildren. She is so missed but as a family we thank god that the HCPs recognised her condition, communicated that clearly to us so we could respond appropriately (ie drop everything to be with her) and provided all the pain relief she needed to make her death such a positive experience for all. I hope you and your family are able to experience the same for your father.

My sympathies that you are going through this OP. It is hard for us left behind & watching & waiting.

I'm interested to hear all the stories of people perking up - the Guardian ran an article earlier this year on the phenomenon of 'terminal lucidity'
www.theguardian.com/society/2021/feb/23/the-clouds-cleared-what-terminal-lucidity-teaches-us-about-life-death-and-dementia

Of course it's not euthanasia! It's giving a terminally ill patient the means to control the amount of pain they are in. What does your FM think should happen instead?

It sounds as if you could do with speaking to your dad's consultant, as they should be able to answer your questions and clear up any misunderstandings.

Sending you best wishes, and peace to your dad.

Thanks all.

Just to clear something.

The family member who said what they did said it in a hopeful tone. There's been no questioning of what's been given or advised by the various doctors etc.

They know it was dads wish anyway and I think maybe the thought he'll be done suffering soon is comforting them (while of course also breaking their heart.)

There's been no accusation that anyone involved has ever done anything other than do whatever they can to make this easier for everyone involved. Most of all dad.

So please don't think they're angry or upset at the treatment he's getting. Quite the opposite.

No one is angry or disappointed in anything that's been done.

I’m so sorry about your dad. Mine died three years ago today. He also had a rare neurological condition. His was PSP.
He had a water infection ( one of many) and was getting antibiotics but they weren’t doing much. He got a driver for pain with the stuff to reduce secretions too. The 24 hospice staff turned up. He looked the same or a little better to me, but some how they knew this was it. It was about a Week for him. He passed very gently with us all around him.