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?

I suspect the medication my DM was taking at the end of her life may have slightly hastened her death but they didn't cause it. She had terminal cancer and was always going to die. The most important thing was that she died without pain and distress to the extent possible.

take care of yourself

Thanks so much everyone.

You've really settled any concerns I had.

I know dad actually has been desperate for assisted suicide but when my relative said about the euthanasia I started to question how I felt if that were the case.

So I'm very calmed by your thoughtful and thorough responses.

He's at home, all the support we've received is amazing. He has a hospital bed and carers all night so that mum and I don't need to worry if something happens at night.

I'm off to the chemist shortly to collect the next prescription for the driver in time for the nurse to come today.

I'm going to assume as and when the dose increases he will be less awake so will take the next few days to make sure he's in no doubt I'm grateful for what he's done for all of us.

Been years coming but seems so sudden. I e been carrying a lot of anger for him but that's lifted now and just wishing this hadn't happened. He's been gone a while really but the finality of not having him to see is worse than I expected.

I’m so sorry.

There are many subtle signs that someone is dying, from clinical signs like breathing, heart rate and blood pressure changing, bloods showing worsening abnormalities, circulation slowing, antibiotics not working etc… to behavioural signs like increased restlessness or sleepiness (often alternating), the patient feeling increasingly short of breath, episodes of confusion. 2 weeks doesn’t mean exactly 2 weeks, it implies 2 weeks is the max time he has left. 💐

Say everything you want to say to him now OP. He will start to sleep more as the pain medication is increased. 💐

Your family member is an idiot.

It sounds like you Dad is slowly shutting down and the care he is getting is making him for comfortable. This is what I would want for a loved one, care and comfort.

@Disfordarkchocolate

Your family member is an idiot.

It sounds like you Dad is slowly shutting down and the care he is getting is making him for comfortable. This is what I would want for a loved one, care and comfort.

Maybe a bit harsh.

They are just trying to make sense of what's happening. They love him and a lot and hate seeing him suffer.

I'm sorry for your situation op but if I we're you I'd ask for the title of this thread to be changed. There is an unpleasant tone to it and it sounds like you are accusing people of trying to kill your dad.

@Disfordarkchocolate

Your family member is an idiot.

It sounds like you Dad is slowly shutting down and the care he is getting is making him for comfortable. This is what I would want for a loved one, care and comfort.

Agreed. You’re family member is a clown. What a ridiculous thing to say to someone in your situation. As if that’s going to make you feel better.

I’m sorry to hear about your dad OP. I’ve no experience in end of life care, but my understanding is they try to keep people alive as long as possible (sometimes when it would be kinder to let them slip away in peace, instead of getting pumped full of drugs to keep them awake at best, but that’s a different thread…)

I’m sure they’ve done all they can for you dad, so don’t think that they could have done more but chose not to (as your family member inferred)

Take care. X

Hopefully his passing is peaceful.

With the end in mind

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

www.nursingtimes.net/clinical-archive/end-of-life-and-palliative-care/ethical-issues-around-continuous-deep-sedation-without-hydration-14-09-2012/

This tends to be what people are talking about rw:Ns euthanasia, but it doesn't sound like what us happening to your dad.

@PermanentTemporary Shipman was nothing remotely to do with euthanasia. He was a straight out murderer who got himself into wills. Please don't conflate the situations/issues.

Could it possibly have been that someone misspoke 'two weeks' when they meant 'short weeks'.

I'm not in the UK. However, in Ireland, on several occasions, I've been told it's a matter of 'days' or 'weeks'. When pressed, they have said, maybe 'a week or 10 days'. And that's been accurate, broadly speaking.

I've never heard, either personally or from someone else, that they were told 'short weeks'. I'm not doubting your own experience but 'short weeks' doesn't even make linguistic sense 🤔

OP you have got excellent comments / advice here. I'm so sorry for you, and your dad.

In my case, my dad had a similar neurological, degenerative condition but became unwell quite suddenly. Like you, I remember being really shocked when the doctor's told us he had about a week to live. There was no apparent marker from one day to the next.

In his case, he had a variety of things happening to his poor body that couldn't be controlled or fixed, essentially. He was in horrendous pain too 💔

We were relieved to an extent as proper pain relief could be put in place & he died a few days later. Like PP, once the morphine & palliative measures are in place, it's the start of a journey to the end

Thinking of you. 💐 even when you 'expect' death, it's shocking & heartbreaking when it happens.

As someone who works in end of life care. The patch behind his ear will likely be hyoscine as it sounds like he is unable to manage his own secretions which is then causing aspiration (when food / drinks / saliva) goes into the lungs rather than being swallowed. If your father has declined a PEG then this will likely continue to happen if he eats or drinks. If not responding to treatment for the chest infection plus the uti then this sadly is likely that he is entering the last few weeks. The syringe driver is there to ensure he is not in pain at any stage. Definitely not NHS euthanasia which is a be try unhelpful comment from your friend. In fact it’s actually good quality end of life care.
I hope that reassures you a little.

@Jobseeker19

This tends to be what people are talking about rw:Ns euthanasia, but it doesn't sound like what us happening to your dad.

That paper was written in 2012! it is dated, even when the LCP (as it was known) fluids were never withheld!

What people don't understand is that when the body is dying and is in its final days, it slows down and pushing in fluids/food can do more harm and the body has to digest it etc, when all its wants to do is slow down.

We didn't have a timescale for my mum battling a horrendous cancer at 59. But it was obvious that she was slipping away. But I'm glad people have shared about the pre death burst of energy. I've read many theories but none really make sense. But my beautiful adored mum had hardly spoken or opened her eyes for days. Then the evening she died she sat up and started talking- she asked for some music she loved and (and people find this hard to believe but its true) she asked for and drank a small glass of wine. She laughed and stroked our hands and heads as we all took turns on the bed (she died at home). This lasted about 45 minutes and is a memory I will treasure. She then dozed off and died an hour later.

I'm sorry you are losing your dad. I'm sure he knows how loved he is.

@Disfordarkchocolate

Your family member is an idiot.

It sounds like you Dad is slowly shutting down and the care he is getting is making him for comfortable. This is what I would want for a loved one, care and comfort.

I agree, they are deliberately using inflammatory language to get a rise from you and to make you doubt and question the Dr - I am not not saying the NHS is above being questioned - this is good end of life care

I’m sorry for you OP at what you’re about to go through. Although it’s not the same, but my brother had cancer and it was very obvious that he was a couple of weeks away. He had two syringe drivers - one for pain relief and one for nausea and to help keep his chest clear. He actually spent most of the last two weeks sleeping but when he was awake he wasn’t really with it, which was a direct effect of all his meds. He had a very lucid period the day before he died. He was able to move around and speak coherently.

It is very common with end of life for the patient to be talking about needing to go somewhere. We were also watching for signs of the body gradually shutting down so weakness when the end was really close.

What you’re about to go through is very distressing for everyone. Please all take time to yourselves if you’re able, even if it’s just something as simple as taking a bath. You’ll be glad of the headspace.

Sorry, I got a bit carried away there. As time goes on there may be tweaks to his meds - new meds or different doses but it is all with one aim - to keep your dad as comfortable as possible

I'm so sorry OP

My MIL died this summer. She had alzheimers and in the end caught a chest infection that she didn't recover from. She had been on end of life care for a few weeks but one day the carers in her care home called DH to say that she only had a week or so left.

There are a number of markers or signs they look out for. Loss of swallow is one thing, another was lack of eating- she didn't need to eat anything for most of the last week which the nursing staff said was typical towards the end of life. Breathing changes as well, this was more towards the last few hours though.

Essentially, the experience of the medical and caring staff meant they knew signs to look out for and could make sure DH, SIL and FIL could spend time with MIL.

I good way of thinking about this stage of someone’s life is, symptom control gives a short death rather than shortening life, I hope that helps you understand what might be happening x

@MobyDicksTinyCanoe

The perking up is really common......I remember a friend of my brother in laws who died really young from cancer. He'd been unconscious for days, family and friends were at his bedside waiting for him to die when he suddenly got up like nothing was wrong with him. Tried to use the bathroom and made himself something to eat.

It was heartbreaking and lovely all at the same time.

The main thing at the moment is that your dad isnt in any pain, it's in everyones interests that that's managed well.

Yeah, my friend's 17yo son died of cancer and a week before he died he was well enough - after spending most of his time mobile but very very tired - to go to Pizza Hut with his friends. They knew it was goodbye and so did he, but it was absolutely wonderful that he got the chance to do that. After that he went to bed and didn't get out of it again.

What I didn't realise is that death is a process as well as an event, so the process starts quite a long time before you actually go into active dying; basically the normal functions (such as fighting off infections and clearing lungs) are not there any more, and the body will essentially run down over time. That's usually when the palliative team step in and put in place their own protocols so no more active treatment, no more medications unless they are for pain relief/symptom relief- they let the body do what it's been often trying to do for a while, which is shut down. This can be distressing to the person, if their breathing/pain increases, which is why they then introduce medications to help with this.

Your dad is in a safe place, and this is a natural process. They are just giving meds to relieve the pain and to stop restlessness/agitation- my husband became agitated at times and tried to throw himself from the bed, so the drugs against that were very helpful. In the end he didn't need much pain meds, so they won't always give what's allowed. They are not helping him die, they are allowing that natural process to occur, but without the pain and agitation that often accompanies it.

Hugs to you OP, this is a hard path for us to tread, and give your dad lots of hugs and talk to him at this time.,

Our experience of palliative care was nothing short of amazing and it would be wonderful if everyone had home hospice or hospice care, or just great palliative care in hospital- so many do not and to have it is a blessing Op even if it doesn't feel like that!

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 work in EOL care, we don't euthanise patients, ever, it's illegal. If someone is in pain (for example) we can give analgesia and titrate the dose up until effective, but we can only act on symptoms, EOL drugs are strong and a side effect of this is they can shorten life further, but it is that and a good death (as much as it can be) or a drawn out death with no symptom control.

Yes the fluid build up is usually a sign that someone is very poorly and may well be what sparked the conversation.

bless you all its so hard you dont want to let go of course but you dont want them to suffer

they said my mum had 18 months and she died in 6-they dont know for sure but seeing as they see it alot it seems this is end of life care

love to you