Does anybody know about Do Not Resuscitate notices?

[BigBoobiedBertha]

Not sure if this is the place for this question but I couldn't think of anywhere else.

My father has just come out of hospital after 2 months. He went in with a bladder infection in the middle of August which turned to pneumonia and then, just as he was getting better but still very wobbly on his legs, he fell and broke his hip bone and ended up having a hip replacement. He also has Alzeheimers which has considerably worsened whilst he was away.

Anyway, he is home now and my mother has been given all sorts of bits of paper. This morning she showed me a container she is supposed to keepfor paramedics to find and in it, amongst other things, was a notice not to resuscitate.

Now, my father is 82, he is very frail and has been very ill. At one point it looked like he would die. He is incapable of making the Do Not resuscitate decsion himself although I suspect if he were lucid for a while, based on what he has said in the past, he would agree with it. My mother however is shocked that this could be put in place without reference to her or my father. I said that if she didn't want it in place then she should take it out of the emergency container thing (sorry don't know the right terminology) but of course, that is only one copy of several so once he got to hospital they would know about it there and what she wanted would be ignored, presumably.

I suppose my question is to ask whether they (the powers that be, doctors or whoever made the decsion) can put something in place without consulting the patient or their family and what if anything, my mother can do about it as his next of kin. She may decide that it is for the best but we still think she should have been consulted.

Thanks.

They did something similar for my Dad, who had dementia. I was told that the medical staff had decided not to resuscitate him if his condition deteriorated further (due to septicaemia caused by multiple, deep bedsores all obtained whilst in hospital... but that's another story).

A young doctor looked very nervous as she took me to one side to explain this to me. At least they took me away from the ward whilst they told me. I had no part in the decision at all, it was very much a case of me being told that this was what would happen, rather than asking for my consent. It was a pretty surreal and unpleasant conversation to be honest.

That's actually really naughty to not tell your mum or explain it? I would be finding out why.

they should inform him, but it is up to the medics

you can refuse to consent to intervention (such as resuscitation) but you cannot demand it if the doctors do not feel its a viable option. So you can demand to be DNR, but you cannot demand to be resuscitated if that makes sense.

of course it should be communicated, but its absolutely not your mothers decision

but bear in mind that once its in place its not permanent and can be reviewed if there's changes, often people go back and forth on it many times as their conditions change

"it was very much a case of me being told that this was what would happen, rather than asking for my consent"

yes that is exactly how it is, because you consent to interventions, DNR is not doing interventions IYKWIM

Thank you for your replies. I really appreciate it. It isn't something I thought I would ever have to think about outside of the plot line of Casualty or Holby City.

I completely understand that it is up to the doctors whether to resuscitate but it seems to me that the DNR means they won't even try regardless of the circumstances.

I actually think that might be the right thing to do in my father's case, but I think somebody should have talked to my mother first. Not so she can decide but so she is informed. Can you imagine how harrowing it would be if she called an ambulance expecting them to try and help when my father was fighting for his life and they refused even to try to resuscitate him because of the DNR she hasn't even been told about? I do think they should have explained themselves and I think it is wrong if they don't have to.

I think what is bugging me is that I don't know why they have made the decsion. He has been very ill but he is very slowly recovering and the Alzeheimer's, although it has worsened, is not critical yet. He can still talk, he still recognises us and knows who we are, it isn't like his quality of life has disappeared. Why have they decided to put this in place now when they went to the trouble of doing a hip replacement with the expectation that he was going to live long enough to benefit? It doesn't quite stack up to me.

It is interesting that they can change their minds but it is a a bit of a waste of time if it is the paramedics who see the DNR and don't do all they can to help because of it when, had they got the patient to the hospital the doctors might have decided it was worthwhile attempting to resuscitate. Ultimately, it seems the decision can be made by somebody who is not completely trained to make it. This is getting into the realms of the hypothetical now because as I say, I think it might be the right decision for my father but it is all a bit difficult to get your head around.

Deepbreath - I hope you are OK. It must have been a very hard thing to hear about.

you need to separate out "active treatment" from "resuscitation" to understand it fully

"active treatment" is doing everything to save them UP UNTIL they actually stop breathing or their heart stops

"resuscitation" is what they do AFTER someone has got to the point where they stop breathing or their heart stops pumping

some people are "not for active treatment" and nothing is done other than making them comfortable, others are "just" NFR which means that they get oxygen if they need it to HELP them breath, they get antibiotics, they get help, but if that help fails and their heart stops or the stop breathing, then they aren't "brought back to life"

So if he was struggling, and an ambulance came, they wouldn't just put their hands up and back off, they would still give O2 or whatever was needed to help and bring him to hospital where they would continue to try to "actively treat" him

Thanks halloweeney.

Not having had to deal with this before all the jargon is new to me.

So, hypothetically speaking, say somebody was having a minor heart attack which they could survive if they got relatively minor treatment (ie they just needed somebody to actively support them long enough to get to hospital) but the ambulance crew turned up and found a DNR in place, would they not even attempt CPR, even if it were likely to be worthwhile? I think I have a bit of a problem with the ambulance having to make the assessment of whether something is survivable before the doctors get the chance to have a look too. What a responsibility on the shoulders of a paramedic! They don't get paid enough for that surely?!

you don't give CPR for a minor heart attack, you give it to someone who is already dead (heart not beating), or a minuite or so from being dead (not breathing)

yes if they are DNR but for active treatment they'ld get all the usual treatments for a heart attack if they were still alive and breathing

Your mother and/or you should have been taken aside and the decision explained to her/you and discussed with her so that she hopefully, could see the action as something in your father's best interests and which had been a considered and thoughtful decision to help him maintain his dignity and comfort.

You and your mother should not feel this disempowered. It's a shame but unfortunately a reality of a hard pressed environment and equally hard pressed health professionals.

OK. I think I get it. Trying to think of hypothetical situations to illustrate what I am worried about is obviously not helping when I clearly don't know what I am talking about.

Thank you for your help.

Can I just ask, is it worth my mother talking to somebody about it? I think she would like to understand their thinking even if it isn't up to her to decide. There is also this niggling worry that there is something we aren't being told about but maybe that is just because of the lack of communication.

Sorry cross posted with you there Dystopian.

I think you are right. My mother found the DNR when she opened the cannister she is supposed to keep in the fridge for emergencies with info for the paramedics. That is no way to find out when you don't understand the implications and what you can and can't expect.

CPR very rarely works outside hospital. CPR is not pleasant. If there is no DNR in place then the paramedics have to carry out CPR - even if they know it is futile. Having a DNR in place means that if someone has a fatal heeart attack at home they and the family are not subjected to CPR, a traumatic rush to hospital etc etc etc.

Yes - the decision to DNR should have been discussed with the family, but as stated above it is a medical decision. It's not a decision whether or not to save someone - its a decision that medically attempting rescusitation would be futile.

I hope your Dad continues to be well at home.x

" That is no way to find out "

too right! I'ld be really annoyed! yes I think it would be good to call up the place that discharged her and give them a bollocking ask them to explain it to your mother

X posted - yes your Mum should give GP a call to discuss any concerns she has.

In our area paramedics do not have to carry out CPR if they believe it to be futile due to pre-existing conditions and the patient has an asystole (flat-line) heart rhythm which is not shockable. That does not mean we will not treat reversible causes such as choking or very low blood sugar. A DNR relates only to resuscitation not to treatment.

Thanks ladies. I will get her to speak to somebody then.

It is shame that they have been so bad at communicating about this as I am now wondering about what else they haven't told us. Are they in some way responsible for my father breaking his hip which is silly idea because he could have fallen at home just as easily, and why did it take 4 days to get round to x-raying him after the fall? I was quite prepared to think they were open and honest about all that and it was an unfortunate accident but now I wonder if we should have asked more questions!

I do appreciate your advice though.

OP, if it helps at all, doctors decided my mum was not for resuscitation, but at our request she was actively treated until the end.

You and your mum could ask to speak to the hospital about why the order was put into place, maybe via PALS?

Thank you Springforward. That is reassuring to know.

I will go and look up the local PALS. I hadn't thought of them.

Hi OP

I'm sorry your father has been ill. It's rough on all the family, isn't it? I hope you have enough info re DNR now from other posters.

Have your parents been offered an assessment from adult social care? Even if your mum states that she can manage, they may be able to offer a sitter service to give her some time for herself.
Also, the worker who assesses will advise regarding the Mental Capacity Act, and the implications for families with a parent with dementia.

Let me know if I can help anymore.

big I am sorry that your mom found out about this this way. Is there any possibility that your dad had a lucid period and spoke to the doctors? It is fairly unusual for DNRs to be sent home - all our ones are valid for that admission only unless specifically agreed that it is to be valid in the community too (which I think is actually something we should do more often - if we don't feel that a patient can be 'brought back' in a shiny hospital with all manner of drugs and technology at our fingertips, why would that be different in the community?)

Have a chat to your GP but be aware that he may not know about it. It may be helpful to have a chat to PALS - they'd be able to talk with the responsible consultant and get a response for you. I do try my level best to talk to relatives before this goes in place, but will do one if I can't speak to relatives as my responsibility is to not put my patient through a futile traumatic event when the outcome won't change. Saying that, there are loads of misconceptions about DNARs and I think it's important to explain that we do still treat everything properly up to the point of the heart/breathing stopping.

An 82 year old is probably not going to be resucitated. I don't mean the DNR, I mean if CPR, defib, ET tube etc etc are used an 82 year old will still die.

CPR is nt like it is on the TV. It is undignified - your clothes are pulled / cut off, someone is pushing your heart in and out via your chest - ribs are frequently broken.

Increasingly strong electrical currents are applied to the chest, sometimes burns occur.

While someone is pumping on your chest someone else is slapping your arm to get an IV line in and another is sticking a metal instrument down your throat to get a plastic tube in.

If you live (most people don't) you may not be able to breath for yourself, this means a tube is in your throat so you can't eat/drink or say 'I love you' to your relatives. If you have alziemers you might not understand the tube is keeping you alive and try to remove it.

Your chest will feel like you have been kicked by a horse.

Your chance of walking out of the hospital after this is about nil.

This is why DNR orders are made.

It's not about quality of life or life expectancy, it is about the probable outcome and probable damage.

Thank you again. I completely understand that CPR can be brutal. I have seen enough ER! They didn't hold back on the realism I don't think. As I think I have said, I personally wouldn't want that for him and nor does my mother having talked to her again this morning.. She will try to speak to her GP about it just to hear the implications from them. It is not quite the same just researching this sort of thing on the net, kind and helpful as you all are. I think she wants some reassurance that basically it is in his best interests and will lead to less suffering not more.

My concern I suppose, having pondered it a bit since yesterday was that they would withdraw treatment before the breathing and heart had stopped, that they would perhaps anticpate it and my father would be left struggling for breath and potentially very distressed which would be very unpleasant for him. It seems that that is not the case so that is OK.

I think the main problem with the whole thing is that they didn't tell us which could have made a bad situation worse if his heart did fail and also what this underlying medical condition is. All we know about is the Alzeheimers (and a few other non-life threatening things like AMD) and I would have assumed that that wasn't cause enough to refuse treatment. He has so many different scans and tests and they never tell what they are for or what the results are so you do wonder what it is all about. It could be that it is just his age that has prompted the decision plus general ill health but it would have been nice it they just told us that!

Thank you all for putting up with my ramblings.

Really sorry about what your family is going through and I agree that this should have been handled better - the medics should have spoken directly to your mum and explained. I know ER seems realistic, but it really isn't - on shows like that they show someone sitting talking after they've been 'brought back' and then them being discharged from hospital back to their family.

Both my parents are medics and they both have 'DNR' tattoos even though neither of them is particularly ill. They've seen what resuscitation is, and what it's like for patients afterwards - the patients usually die soon after being resuscitated but they die in terrible pain in hospital with broken ribs and discomfort from tubes etc. Instead of dying at home, holding the hand of a loved one. In the opinion/experience of my parents it doesn't 'save lives' in the case of elderly ill patients, it just makes death slow and painful.

When people who aren't doctors/nurses/ambulance hear about their DNR tattoos they are shocked. But anyone who's a medic and whose children are adults says 'Great idea, I must get around to that.'

I am so sorry - and you need to talk to your dad's doctors and tell them that you're not getting all the information you need.

Thanks becstar

Stranglely I only remember the ones in ER where they don't get better and all the docs are left there looking dejected with a scene of carnage around them. My hope for him, like most people I assume, is that he peacefully dies in his sleep, not surrounded by that sort of medical paraphenalia and mess - it isn't very dignified.