DNR

[username8348]

My mum had her annual Dementia review with the GP recently and the Dr asked me if she would want CPR.

I said that she'd never discussed it or expressed a preference so yes resuscitate her if necessary.

The Dr said to discuss it with my siblings. I don't understand why. Can anyone enlighten me on why we need to discuss it please.

She doesn't have any medical conditions apart from the dementia.

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.

*living.

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

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.

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.

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.

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.

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.

@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 asked for more information, therefore I wanted to find out more.

I also said that I had read the posts and would try to find out my mum's wishes. I was obviously taking it on board.

However I felt attacked by some of the posters which is obviously unpleasant under the circumstances.

However I felt attacked by some of the posters which is obviously unpleasant under the circumstances

I can totally understand that this is such a difficult time for you but I don't think that anyone is criticising or attacking you at all. Maybe some of us have been a little frank with our responses. I'm sorry of any of my posts offended you. They certainly weren't intended that way.

I'm a nurse and I'd absolutely want a DNR for my mum.

Resuscitation (especially outside of a hospital) even for young/well people rarely works and even when it does can lead to life long problems.

I personally would want a natural death for myself and loved ones.

It's very variable from person to person isn't it? My DSis is also a Nurse and has said she definitely wouldn't want a DNR for our DM.

DM was a Nurse and has always said "don't bother trying to resuscitate me" which I'm glad of as at least she's been clear and it doesn't leave us in the awful situation that the OP has.

The way the doctor asked you the question was appalling. Maybe feed back to the practice that the doctor could do with some help in discussing a topic as sensitive as this. And ask them about the ReSPECT process (worth looking at with your family even if it’s not used locally).

You’ve had a lot of information here about the process of CPR but we’d all happily undergo a brutal medical process if the outcome was worth it (childbirth for example!).

I think of it as “if your mother dies a natural death, would you want us to attempt to bring her back to life?” Bear in mind clinicians cannot offer treatment that would be futile, so it would only be started if they thought there was a chance of a good outcome (not just life, but good quality of life afterwards). Only a small proportion of cardiac arrests will respond to resuscitation.

If mum is still socially active and independent then the doctor should have asked her what she wanted, especially as she was an ex nurse, it's not up to a family to decide, only to ask what they think mum would want and talk through the process, no one would know if you were dnr if you collapsed in the street so would call an ambulance anyway and cpr is not the same as a heart attack which can be treated.

The GP suggested DM sign a DNR but unfortunately she is vehemently refusing. She is 79 with AD. I actually think she doesn’t understand the likely consequences despite the GP and me trying to explain. The GP was quite brusque and I think my mum was thinking she just wanted to get rid of her, like she was giving up on all medical treatment. This is despite being a nurse and previously mentioning that there is no point being kept alive for the sake of it. I have left it for now as she was getting quite upset about it but I do think I need to talk to her about it again.

I know, it's been very difficult reading tbh. I think you're doing amazingly. It's a lot to take in. It's really given me a lot to think about as well.

Mumsnet can be very cutting and I just think it's important on a thread like this for people to remember the subject at hand. Some of it feels unecessarily harsh.

Thank you all. I spoke to my sister today and said I was quite firm that she shouldn't have CPR. I told her to research and then we'd speak to my other sister and I would inform the Dr.

That it's better that a decision is made now and we're all agreed should anything happen.

I think it's really good that you both agree. What you're going through is do difficult its much better in the long run that you both feel the same

We discuss with relatives any time reviewing respect forms (forms that include escalation of care suitability for icu/dialysis etc). It's a medical decision at the end of the day but relatives are helpful to give insights into the individuals thoughts/wishes.

Dementia Itself is a terminal illness so resus status should always be considered. Cpr is brutal and in instances where the heart isn't the first thing to stop, unsuccessful in most instances. Those that do survive often end up in a far less functional state and more dependence than pre-arrest

I personally, and my family will be requesting dnars from 70s onwards. It doesn't stop any medical treatment usp until that point but allows for a peaceful and dignified death when the time comes

CPR resuscitation is absolutely brutal - and I'll be frank, has a poor likelihood of success, even if in hospital. And has fuck all to do with dignity - upper body exposed, lots of people surrounding them, family pushed to one side

I personally would not want CPR resuscitation or heavy duty chemotherapy. However I would want to have anti biotics for UTI & chest infections and palliative chemo / radiotherapy.

Well done, it's a really awful thing to think about and discuss with siblings,

keep reminding yourself you have made this decision out of love, and should the need arise, would be letting your Mum go with dignity. It's what I keep telling myself anyway, hope that helps you and your siblings too.

I'm sorry you felt attacked and I apologise if I was one of the culprits but I do feel very strongly about this and can be overly blunt to make my point.

Ahh OP a very difficult and brave decision.

please be assured that your mum will still receive all the treatment that she should every step of her life ongoing.

I understand that some of the comments are harsh but the feeling in this particular subject is very strong. The experiences are very interesting and thought provoking.

I must apologise to you @username8348 if my comments were harsh, or if they upset you.

It has probably already been said but I’m a nurse and a DNAR is a medical decision so doesn’t require agreement from family, however it is good practice to gain input from family.

I work with the elderly and if still for all escalation, it is absoloutely brutal on anyone at any age but even worse when people are becoming more frail. Broken ribs is really a given if there is any success and often they will still die from pneumonia caused by discomfort from the rib pain. Often deprivation of oxygen causes neurological deficit and I have worked on a cardiac unit where those who survived with downtime were 1:1 care needed, aggressive and fully dependent on all cares. Those patients didn’t even know where they were and definitely had little quality of life and I knew many families who said it would have been better for the patient if they had passed away with dignity from an arrest.

There is of course some reversible causes during an arrest and it’s not a one size fits all approach. We also get families concerned that putting in a respect form means we won’t treat anything and that isn’t the case at all. I do understand how difficult and unpleasant it is to think about as I agreed to DNACPR on my 57 year old mother in February after she suffered a catastrophic brain bleed, and despite being a registered healthcare professional, I did feel like I was signing her away despite them not needing my agreement, but she was able to pass away with dignity in comfort

This was going back to April this year and obviously I was asked unexpectedly when she was admitted to hospital with a broken hip. Prior to that she was living independently and carryout out housework and cooking meals. 100% mobile including getting up and down stairs, going outside to empty the bins, etc. Then the next day she's in hospital and I'm being asked about DNR. I thought she'd go back to the level she was at before, I didn't know she wouldn't. Nothing to do with rose tinted view, its to do with not knowing any different.

Sorry OP - wasn't trying to hijack your post.