DNR

@TruthThatsHardAsSteel such a lovely , kind post.

I too feel for the OP, very much so. But had it not been for the bluntness of the first doctor who was very clear about why a DNAR was in my Mum's best interests, I still wouldn't be facing up to the harsh reality. I don't think the OP was ready for our responses either, but all come from a place of trying to help. And if that means being blunt and direct, so be it.

I think the most important thing is to look out your mums letter and see if she said anything about it. I've been nursing for 8 years and have only met one person in that whole time who was employed as a HCP who would want CPR.

It doesn't sound like the best of conversations with the GP. Do you have a GP or practice nurse who you have dealt with before that could maybe talk you through things and answer questions specific to your mums situation? I like that they have began the conversation whilst she is well and not during a critical situation which sadly so often happens.

Fwiw my Grandfather had dementia and was pretty fit. About a month before he died I had a chat with my father about resuscitation and he mentioned that it had never been brought up. We had a good discussion and I explained what resuscitation meant and what it would look like and he decided it wouldn't be the best outcome and spoke to GP. He was really well until his last day and then one morning just never woke up and thankfully everything was in place so they got him clean in his own bed and brought my grandma through to say goodbye then we got to spend as much time as we wanted. I'm so glad that we had that time as a family to say goodbye and that everything was in place to allow such a peaceful, dignified death for him.

At my Mums last hospital visit we discussed CPR. Her doctor who she trusts, basically said once you are 80+ you have about 1% chance of survival with CPR, it will result in broken ribs and you will be brain damaged because at her age the brain can’t cope with no oxygen even for a short period of time. She explained how the young footballers who survive are in the peak of fitness and it doesn’t always go well for them. She was also very clear that anything else would still be treated (with antibiotics for example).

It was more the idea of broken ribs that put my mum off, but I think we have the right decision. She already has osteoporosis and breaks things quite easily and knows how painful that can be. Her consultant is a lovely woman and also spends lots of time with her patients so that they all understand as best they can.

My mother died of dementia in January and my god, I wish so badly she’d have died 7 years or more ago of a heart attack or similar.

I don’t know how aware you are of what it’s like to live and die with dementia. I also don’t know if your mother has Alzheimer’s or vascular dementia or a combination. But having seen my poor mother slide into the most god-awful state of being and having to exist like that for years, I would have given anything to have had her suffering ended years before. She had a DNR and I’d refused any vaccines or treatment of medical conditions for several years prior to her death, and she still hung on in the most pitiful state. She was bed bound. Non-verbal. Doubly incontinent. She had no idea who I was. Had she had any awareness of the state she was in she would have been mortified and desperately would have done anything to have avoided it. If she’d been an animal we would have been prosecuted by the RSPCA for allowing her to exist like that.

So please think very carefully if you think resuscitation is in her best interest.

Another thing that I would like to say is that some people seem to conflate DNRs with not treating the patriarchy at all gut anything.

DMIL had a DNR in place quite soon after diagnosis but was still treated for several chest infection and Covid and those decisions were given to DFIL.

So she can have a DNR but can still receive treatment for illnesses.

I'm sure that you know they already but some people simply don't understand what a DNR is and it's very simply that they won't resuscitate.

I would think that a whole family discussion would be helpful to ensure all
options have been explored. Considering things like who would look after the loved one if she survived resus but had complications/ health issues? what the quality of life would be? The reality of the survival
rate of CPR and how brutal it can be. The possibility that surviving this kind of cardiac event may make the dementia worse?

I also think it helps with our emotional response afterwards, if the family are agreed on next steps - when my dad was dying they asked about a DNAR mum could not make up her mind - I said no he was not be be resuscitated (he had cancer which had spread). It took the decision away from Mum (my sister agreed with me)and in turn Mum did not blame herself he gad died. She took my word (I am a nurse and Dad was an amazing man) it was the right thing to do for Dad.

You also have to be aware that the Dr attending a resus event has the final say anyway - and that they can go againat the wishes of the patient/ family in that scenario- if they believe the outcome will be poor or devastating for the patient.

*living.

Sorry for the typo. She was very much loved but it wax a living death.

Apologies if my post wasn’t clear. I absolutely agree that families should be spoken to about these things. But it’s both up to the doctor to do this and to make the overall decision about offering CPR or not after having these discussions. It shouldn’t be handed over to a family member to do without giving any prior warning or information about the decision to be made, which seems to be the case here. I really feel for OP.

I'm reading this thread from a distance and can't help feeling for you op. A lot of posters are sharing their own harrowing stories, In quite a blunt and unquestioning way.

I can't help feeling you weren't ready to receive the information on this thread and I do genuinely mean that in a kind way. I thought I understood a lot about this but clearly don't.

I just wanted to say, it would be nice if posters perhaps remember op hasn't seen/ lived their experiences and possibly isn't ready or able to process this information in a way a lot of people want her to. It's a difficult heartbreaking thread to read and very informative. But a shocking read to someone who has never had this in depth conversation /investigation or experience.

It’s not just the shocks and compressions to think about, if her heart had actually stopped beating and then was restarted then her brain would have had a period without oxygen, her brain is already vulnerable because of the dementia. Even if a heartbeat is restored then usually a stay in intensive care is needed. Intensive care is often not a very dementia friendly environment, bright lights, no day or night, lots of wires and noise. Then potentially several moves within the hospital to various wards. Quite potentially with her mental state worse than it is now. The rehab from a cardiac arrest is long and the chance of making it to hospital discharge low, and keeping the same quality of life she has also low. I think it’s worth thinking about these things and what’s right for your situation.

And to he honest I really bloody wish she had just had a heart attack and gone years before she did. She essentially had a loving death for around 5 years.

I agreed to a DNR with DMIL for two reasons. One was that the process is absolutely brutal and if she had survived she woukd have had no understanding of why her ribs were broken or wound face bedb able to cope with the pain.

The second is that she was a Christian and I'm not sure she would have been happy with the ideology behind resuscitation.

Does your sister fully understand what it entails during and after as per @Greybeardy 's post?

If your grandad was otherwise well, with no degenerative diseases, your Mum acted in his best interests performing CPR.

The Dr then asked me if CPR should be performed, I said that I didn't know my mother's wishes but as far as I knew, yes

Did she explain to you what resuscitation involves, the statistical likelihood of success and what her opinion was? Because without these bits of information I really don’t blame you and your siblings gut reaction to say ‘resuscitate her’.

As I said, giving CPR in hospital is a medical decision. And just because it’s been left somewhat unanswered now doesn’t mean a doctor in the future wouldn’t implement a DNACPR if it was deemed appropriate at the time.

I wouldn’t spend hours worrying about it now. Enjoy your mother while she is well and the likelihood of cardiac arrest is low. But just make sure you and your family are aware that the situation regarding CPR is fluid and this conversation may well be revisited in the future if she was to become unwell, even with something else unconnected to the dementia. Best wishes to you all.

deleted because I’m stupid and misread

that is not how it works in the UK and the GP is absolutely correct to raise the question and advise discussing it with wider family.

A heart attack does not require CPR, she would receive full treatment for a heart attack which could be surgery, medication or a device like a pacemaker. FULL treatment if appropriate.

Cardiac arrest is not a heart attack. Treatment is ether CPR & medication to try to restart the heart, or let nature take its course and let them go.

They are asking you if you think your mum would want the CPR in the event of her heart stopping.

I feel for you, primarily because your GP hasn’t handled this situation at all well. Fundamentally, giving resuscitation anywhere but on the street is a medical decision. It’s not down to you and your siblings - A POA allows you to refuse treatment only, not specify what should be given. Your GP should have explained what they felt was the most appropriate course of action and acted on it, none of this wishy washy ‘go and chat to your family’. I have to say, I think that if you took 100 doctors in your GP’s position and asked them, >99 would have stated a DNACPR should be completed and hopefully acted on it. But you really have been left in limbo now, so I do feel really sorry for you.

Of course you need to discuss it with your siblings. You all need to be on the same page.

My mum (95) has got a DNR on her medical records, she has talked about thus with both my brother and myself, so if push comes to shove, both her kids are on the same page and will carry out her wishes.

It’s different, if the parent is suffering from dementia, but the whole family needs to agree treatment.

So she isn't fine, OP.

You and your siblings need to educate yourselves. Dementia is a condition which gradually, inexorably and inevitably leads to severe and extreme disability.

OP I can understand the shock and upset you feel on being asked this. I went through it with my father. It actually never came to it anyway. He went downhill in hospital anyway (to a large extent due to the poor care he had, but that’s another story) and the discussion became about stopping treatment. But at the time it really shook me when DNA was mentioned when he seemed so strong.

My mother was in hospital after a fall a couple of months ago. They mentioned DNA and it didn’t remotely bother me. I understood. My mum has a condition that will never get any better and very much limits her life, so it’s not à difficult decision.

My best friend died of cancer and I remember her being asked about DNA a couple of weeks before she died. She said “if anyone does bloody CPR to bring me back for more of this I’ll be livid at them!”

I'm 55 and I don't want to be resuscitated. It's not about keeping someone alive. If your heart stops, you are not alive any more.