DNR

[ButSpringDidNotKnow]

Thinking about when I become an elderly parent... Is this the right forum to discuss DNR?

The biggest favour you can do yourself/DCs/NHS is complete a respect form while you are fully able to.

What do I need to think about? Wording? How to describe my condition? Anything else? That's why I want to talk to somebody about it first.

This might be useful

https://www.resus.org.uk/respect

My neighbour who is a consultant gastroenterologist has one in place and he’s 40. He wouldn’t put himself through it. I have poa for my mum and should have put this in place much earlier but dad wasn’t sure (he doesn’t have poa for this reason) but it’s in place now.

If you have a DNR you need to pin it on your kitchen notice board. I was told this by paramedics who came to my mother’s house. Her DNR was with the GP and we had to phone them and they took ages to find it. All the while the paramedics were insisting she had to go back to hospital when I knew she didn’t want to. In the event the GP confirmed the DNR and my mother was able to die peacefully a few days later at home. My DC have POA so they will be able to speak for me.

Having an advance directive (so not just DNR, but wider interventions) is so helpful to the person who is left trying to do the right thing for you. In my experience it was awful having to tell a Dr that I only wanted my mum to have medication and procedures that had a very immediate effect on her wellbeing- so yes to an iron infusion (when she was well enough to cooperate) but no to investigations as to why she was so anemic for instance.
You can make changes over time, or put in clauses to say when you’d like or not things to happen

I have recently done an advance directive for myself. I used the forms from Compassion in Dying which were very helpful and came with explanatory notes. No solicitor needed but your signature needs to be witnessed.

You put a sticker on the inside of your front door and another (same) sticker on the front of the fridge. (Everyone has a fridge so that’s why it’s used). You put a little canister with the details in the door of the fridge so when the paramedics come in, they check the back of the front door and take it from there. I also told the GP and family that I have one in place.

This is very helpful - thank you.

I don't want a DNR at this point. It's if I reach a certain state, but I'm not sure how to define that state.

@notthe1Parrot I was told that you also need DNR red form via your GP as ambulance crews would not necessarily recognise and act on an advance directive.

@Rocknrollstar when the ambulance came out to my mother after a fall (no CPR needed), I got the impression that their online records showed that she has a DNR in place.

Every medic I’ve ever known (friends, family GP) has had a DNR in place at a relatively young age. They’ve all said resuscitation is beyond brutal and it failing isn’t the worst thing - it’s surviving but with life changing complications.

The most helpful thing you can do is tell your nearest and dearest that you don't want CPR or heroic measures to keep you alive when you reach the elderly parent stage.

If you had a heart attack tomorrow, you might well want CPR if you had a life threatening arrythmia while on coronary care.

But you probably feel very differently about what you would want if you were frail and elderly.

The biggest issue with DNACPR is patients or their families being unrealistic about it's chances of success, followed by family members who just can't bear to feel they have given up on their mum/dad.

Being very clear with your family about what you would or wouldn't want is more important than any paperwork - my elderly mum has made it very clear to me that she wouldn't want cancer treatment for example and has her DNACPR. I can see she's found the last few years miserable and although I'll be devastated to lose her, she's been more than ready for a long time.

Does anyone know what happens if you call an ambulance for someone with a DNR? On the TV programmes, the operator always instructs the caller to perform CPR. Can you just refuse saying the DNR is in place/the person does not want to resuscitated?

If you are with someone who has a DNACPR who has died, then in most cases you have already been told who to contact locally in the event of their death - usually GP or District Nurses, so wouldn't be calling 999.

If it was more out of the blue then 111 or the GP surgery would be your first port of call. And your request would start with 'I'm with X and they've died, I don't know what to do next' instead of 'X has stopped breathing, I need an ambulance'.

My advice would be to talk to those you love about what you want and put in place PoA.

But they will be your best advocates and hopefully more effective than a piece of paper. All my friends and family know my wishes. I haven't done PoA yet but (I'm only mid forties) but I probably should.

One of my biggest fears is getting knocked off my bike, sustaining a serious head injury and then people prevaricating about withdrawing care so I'm left with serious cognitive impairment and unable to life alone. Seen it professionally. Really don't want it to happen to me.

My nan is 75 and was in hospital recently. The doctors spoke to her about a DNAR and the rest of my family were furious and barked the doctors out of the room, accusing them of intimidating an elderly woman. I used to be a nurse, they have absolutely no idea that by convincing her to accept full resus they are actively wishing the worst on her 💔😔

I didn't know this was even possible! At a young age with no issues that are concerning.

This is exactly the thread I need. I realise that I did not understand what a DNR actually is. It is not so much that I do not want to be resuscitated - right now I still do - more that I do not want people to fight hard to keep me going once I reach a certain point. It's tricky to define that point. Also, is not trying too hard something I can ask for?

As long as you have mental capacity, you have to consent to any treatment.

I work in end of life and it is very normal for us to have discussions about how someone would agree to one treatment but not another, and for them to completely change their minds repeatedly.

Personally I think it's hard to do an Advance Decision for Refusal of Treatment unless you know you are 100% committed to a decision in any circumstances eg Jehovah's Witnesses refusing blood. They aren't that common to come across as it takes a certain sort of person to be that certain - I did one today with a patient who I know is absolutely definite. However I've also had people write one, their families accidentally forget to mention it and the patient be delighted it was ignored and they had treatment.

In terms of 'reaching a certain point' - that's about communicating with your family so your wishes are known. DH and I watched a news item once about someone having rehab after a serious brain injury and I said 'you do know I'd never want to do that rehab don't you?' and he said yes he did and he wouldn't want to either.

Some families have never even had a chat like that at all so the family member trying to say what you would want has no idea. And the emotional burden of saying 'stop treating my mum' is very hard if you have no idea what she would say.

Thank you this helpful.

We don’t have DNRs as such, but we’ve added paragraphs to our Health and Welfare Powers of Attorney to say roughly:

‘If I should develop dementia, or any other condition where I’m unable both to care for myself, and speak (with full mental capacity) for myself, then I emphatically do not want any life-saving or life-prolonging treatment. I ask for palliative care only.’

An elderly neighbour was resuscitated after his 2nd or 3rd heart attack, and told me the after effects (presumably cracked ribs) were so painful, he wished they’d just let him die. He did in fact die only a few months later anyway.

‘If I should develop dementia, or any other condition where I’m unable both to care for myself, and speak (with full mental capacity) for myself, then I emphatically do not want any life-saving or life-prolonging treatment. I ask for palliative care only.’

I think this is what I want. I think. It is the combination of being very dependent upon others for personal care while also not having full mental capacity that bothers me.

Would the decision to treat or not treat rest in the person who held PoA for you? Could HCPs over-ride it?

What if you were temporarily unable to speak for yourself with full mental capacity, eg delirium from a simple and treatable infection?

https://compassionindying.org.uk/how-we-can-help/living-will-advance-decision/

You can make an advance decision to refuse certain treatments (and be quite specific about circumstances) which is legally binding.

You can also make an advance statement which is much broader but not necessarily legally binding.

ReSPECT forms cover a little bit around preference as well as the DNACPR section so are useful to have but if you want something more in depth you might want to look at compassion in dying's templates.

https://www.ageuk.org.uk/siteassets/documents/factsheets/fs72_advance_decisions_advance_statements_and_living_wills_fcs.pdf - PDF of age uk factsheet 72

My DH had one. It was kept at home and shown to paramedics. Later on when nurses etc came most days it was kept in a file

I’ve written a long and detailed Advanced Refusal of Treatment which asks for palliative care only once 1. I lose mental capacity to decide for myself and 2. My son reaches the age of 25.

He’s currently over 18, and I have asked at this stage for life-prolonging treatment only if I’m expected to recover capacity within a month.

It’s in my GP records, but it’s true that I need a Respect form and a PoA too.