Do not resusitate order - family informed?

[petiteonion]

I live a long distane away from my family but try to get home as oftern as I can.

my father has COPD, Asbestos and other conditions relating to s lings and breathing. He reallu is quite ill with frequent hospital stays. my mum is his prime carer and she is struggling.

No-one has went through what my dads illness really is, what stages it is at and any discussions about what will happen next. we know he is ill but not a real picture of what it means for the next months. I doubt he has a year.

I was home last week and it coincided with another hospital stay. I tried to get to speak with a doctor but no-one was available at any stage. A doctor rang my mother yesterday saying that a family member has asked for a call so he was following up. In a very off hand manner he said that they were running out of options to treat him and that as a DNR was signed - there will be little emergency interventions in the future.

I am not saying a DNR is not appropriate but this has never been discussed with any of the family or my dad. I know the doctors can override a family's decision but we are not contesting it but wondered why no-one had let us know this had been agreed.

I thought we had to be informed?

Thank you so much for your replies. I appreciate them all.

We dont know what DNR means in reality so it is hard to know what will happen if that situation arises.

He is only 65. He was admitted to ICU with respiratory failure 3 years ago. We didnt think he would pull through and there were many times we were called to gather to say goodbye but he rallied.

He was crying today about it, which is not like him at all. The last time he cried to my knowledge was when he saw his first grandchild 11 years ago. He has been really withdrawn and down and my mum thinks hearing this has taken the last of his will to live. He hasnt eaten anything since Monday which is playing havoc with his diabetes. This is not like him. Even when really ill, he has always loved his scran!

It is so hard to manage this. I am so far away and feel so powerless to help. I tried to call his GP today and have a phone appointment booked for Thurs 18th (first available slot).
Dad wont talk to any of us siblings on the phone and isnt replying to our texts. Mum is finding it so hard.

My issue is not with this decision but the process. I know my dad is not able to overturn this but really feel like there are so many questions that need answered for him and all of us.

Please speak to PALS. When you say ‘your dad is not able to overturn this’ I am not sure what you mean. If you are referring to the progress of his illness then that is true. If you are talking about the DNR this is not an absolute.

I do feel for you as it seems your Dad hearing this news feels it is a death sentence and an inevitability about his situation. 40 years ago, my dad had one of his lungs removed and 3 years later was admitted to hospital for an operation on the other lung. He overheard the doctors discussing him and saying the other lung was inoperable and he would be discharged. Like your Dad, he was very upset and gave up.

I know it is hard when you are so far away and not the NoK. I send you good wishes .

also confused by what you are saying

your dad can overturn the DNR.

as for the illness, I didn't realise your dad was so young. My auntie has been living with COPD for years, she's late 60s. She is in a care home, when she goes outside it's in a wheelchair. She's on oxygen most hours of the day.

but she also wanted to live. She was adamant about it. She is pleased to have more time and has recovered enough to read etc.

sorry, as it's Elderly Parents I just assumed your dad was 80+ but at 65, there's more they can do to help him recover....maybe?

it sounds like possibly everyone is in that horrible place of panic and sadness combined, and a step back from those thoughts and a good visit with your DF will help?

that reminds me - have they given him any antideps?

I am not sure if you or your family understands what the DNAR means - it doesn't mean that they will not treat his illness or continue to make him comfortable- just that if he he has actually gone into cardiac arrest they will not attempt to resuscitate, as in if he needs CPR as there can be more damage to the body from this and for someone with little quality of life who is very ill it can be the case that their body will be further damaged and they will live on in more pain.

There is also no guarantee that CPR would be successful.

But yes your dad can overturn this, if that is his wishes. If your dad has 'capacity' they must go by his wishes - they would only ask family members if he would be thought to not have capacity e.g. If he had dementia and then they have to do paperwork around 'best interests'.

Sorry for any confusion. By overturn i meant change the DNR. I thought it was a medical decision that whilst he had to sign that he had been told, he couldnt challenge it?
Afaik There is nothing that can be done to help dad get better just offer O2 and assistance with breathing. He is practically on constant antibiitics and steriods for recurring infections. He did have a period of home delivered IV antibiotics recently with nurses coming in daily to change the bags for drip. This was meant to be as an alternative to hospital stays and in an effort to clear the infection. It doesnt seem to have worked as the infection is there still.

Thank you for all your kindness. Most days i feel like my head is going to explode with all that is happening and i have to keep it together for my mum as i am the only one who she can really confide in. My siblings are briliant but i realise that they are in denial and even less prepared than i am for him dying.

@rosawaiting - he is not on antidepressants as yet. When we tried to talk to him a few weeks ago about them, he was v resistant to the idea but agreed to speak to GP. His GP rang but dad told them he was feeling great, had been out n about on days out, was sitting in the garden etc. Not the reality at all but v typical of him. The GP went of course with what dad said.

My father died of lung cancer last year. Me, dh, dm and our 3 year old were visiting him when the consultant did a ward round and she told us then that if anything happened they wouldn't be resuscitating him. It was as much news to him as it was to us and he died about 3 days later. His face just crumbled. I was six months pregnant at the time and he desperately wanted to hang to meet the new baby.

You don't sign your own DNR. It's signed by your consultant or GP.

It's a medical decision - unless you personally want to be DNR in which case you can ask for one at any time including when you are really healthy.

From the details you have given about your Dad, sadly it sounds as if were his heart to stop beating, it is incredibly unlikely that CPR would restart it, so medically a DNR is appropriate.

In these situations a doctor should explain to a person why they are DNR - there is a process for challenging it by asking for a second opinion but it is likely that the second opinion would be the same as the first.

If your Dad doesn't remember things from 10 minutes ago, or tends to say he is fit and well and walking about, when actually he is in bed on oxygen, it could well be that he has been told about how unwell he is and the DNR but forgotten it or batted it off.

I'm really sorry this has all hit you so hard

I'd suggest it would be a good idea for you to fill his GP/consultant in on how he really is if he/your mum don't tell the truth when he goes to appointments. Can you go with him to his appointment on the 18th?

Oh dinosauratemydaffodils - i am so sorry for your loss and it must have been so hard to see your dad get that news

I’m intrigued by this thread and am wondering were in the country you are based. I’ve been a doctor for 20 years and filled in DNARs on an almost daily basis. I have never had to get the patient to sign one, and the last hospital I worked at was paperless, so there would have been no-where the patient could have signed. I’ve never seen a community DNAR form (ie one done by a GP) signed by a patient either.

To complete a DNAR form doctors don’t need patient or relative consent. It’s a clinical decision. If an elderly patient in hospital is deteriorating, has lost capacity and I’m unable to contact relatives, that doesn’t mean I HAVE to do CPR on her, but I do have to explain on the form what attempts I’ve made to contact relatives and why CPR would be futile.

As a pp has explained a DNAR form simply means if a patient’s heart stops CPR should not be started. It has no other bearing on clinical treatment.

It doesn’t sound like your dad is a candidate for CPR. Anyone who survived CPR will require a stay in ITU in an induced and medically managed coma. Most patients come out of ITU in a physiologically worse state than when they went in. ITU can choose NOT to accept patients who they don’t think (based on their co-morbidity) will survive. Some-one who is elderly and already on home oxygen is a) unlikely to have a successful outcome from CPR in the first place and b) if CPR was successful ITU would refuse to accept them......so now medics are left with an adrenaline (patients are given this as part of CPR)dependent patient whom ITU have refused and whose heart will stop again once the adrenaline wears off.......so at that point do you want us to start COR again, and get ITU down again.....to say ‘no’ again?

If families are adamant that they want CPR, we medics will oblige, for at least one or two rounds.....then we stop, and the family is grateful because they think we did something. CPR is a completely hideous and barbaric thing to do to anyone who hasn’t got a hope of surviving it in the first place......but in the UK we seem to have totally lost sight of the fact that getting old and bits of our bodies failing is all part of the dying process.

OP sorry if the latter part of my post seemed a little harsh. I am genuinely sorry that you are having such a tough time. I see your story on a daily basis and am just frustrated that the government has made no attempt to educate the public about dying- it’s oretty much the only certainty we all have in life, yet no-one wants to talk about it. Go and have a chat with your dads GP or consultant (with you dad’s consent).

Hi annamagani - i have a phone appointment booked with his GP on the 18th april. My mum still hasnt been able to speak with his respiratory consultant. His next appointment is with consultant at the end of April to talk over rezults of results of bronchioscope done on the 28th march.

In the UK there is a common belief among patients that they have to sign a DNR - I also fill them out daily both in hospital and community and will regularly have patients ask me 'where do I sign?' but there is actually nowhere on the form for a patient signature, but a clear place for the documentation of discussion.

As collectingcpd says, it is a medical decision and often the first thing that goes through the doctor's head is 'will this patient be accepted by ITU' because every survivor of CPR will need to go there. If the answer is no, and ITU will only accept patients they think will benefit from treatment there, then your decision is essentially made for you.

Dying in a CPR process is really horrible as those of us old enough to have been in practice when very few people had DNRs can tell you. It much better to die quietly and peacefully with your family by your side and any drugs you need to make you comfortable, than your family kicked out of the room while a team of strangers go through a horrible and undignified ritual which has no hope of saving your life.

Collectingcpd - my dad is in northern ireland.

I am completely confused as i thought dad had to sign something to say he had been informed of the medical decision, not that he agrees or consents to it.

We dont disagree with this decision, more i want to know that it has been clearly explained to my dad and that he understands what it means. This is the part i am unsure has really happened.

Oh, I am glad you have a phone appointment.

I'd suggest you make a list of questions you would like answered and things you really want to tell him eg:

He says he gets up and walks but actually the last time he really went out was x

He only eats y amount

He is having problems with his memory

Mum won't tell you but she needs help with ...

I would like to know what his diagnosis is

What does this mean

What is his prognosis - I would like you to be blunt with me

I’m pretty sure it’s the same in NI, although I’ve never actually worked there. It’s a medical decision. Whoever filled the form in should, as Anna said, have documented the discussion that was had with your dad, or if no discussion was had why one was not possible.

If your dad has no recollection of this (and quite often patients chose to blank this out) or genuinely hasn’t had a discussion with anyone your GP or any hospital doctor he sees can go through this again.

No he doesn't have to sign anything to say he's been informed of the DNR.

Not familiar with NI but I would guess they have some form of process like the rest of the UK where a form is left in the property, usually in his district nursing notes or somewhere like that.

The doctor documents what was said to your Dad in his notes. If your Dad isn't remembering things, or just is burying his head in the sand, that may be where the issue lies. Or potentially it wasn't done well. But they don't have to ring round all the family members - the key person they talk to is your dad, not anyone else.

That’s a great list anna

Thankyou anna. That list is pretty much what was whirring round in my head but you have eased it by putting it on paper.

I feel for you, OP.
For people interested, the lady who wrote Call the Midwife (Jennifer Worth) also wrote a brilliant book on ageing and end of life care. I was really impressed with it. It's called " In the midst of life". It's a true documentation of her few years working in a hospital.

The DNR thing is a minefield because it make sense but can also be a loophole by which, yep, the cash-strapped hospital can finish someone off, no questions asked.
It should be made clear that it is very intrusive, to bring someone back to life when they have had enough is almost Frankenstein really, and on a technicality. It means massive shocks on the chest with those pads to get the heart going, a tube down the throat, all kinds of things.
That said, in March 2014 after my mother had gone into hospital after care home neglect, I was called out because her BP had gone down to 40/20 and they thought that was curtains for her.
She did not have DNR in place, so they needed me to sign something. So we had a big chat but I really wasn't ready to let Mum go. It meant we had a set-to with the young GP on duty, who was actually a decent bloke, and she did actually pull through.
We got another three and a half years out of her, albeit with diminishing returns, but that's Parkinson's for you.
Nobody from the Council's Social Services or anyone held accountable for the care home, which I later found out, had failed its CQC inspection on all counts the month before, with nobody being told - but that's adult social care for you.
My point is in this case, not having DNR meant they called me out and I could speak up for her, argue her case.

On the other hand, I heard of another person in a care home on respite for a week or so, she had DNR but the papers were not at the home. So, after a massive heart attack, they resussitated her in all its awfulness. She spent the next 24 hours or so in the local hospital, twitching like in shock, apparently, and the daughter was furious. In the end she had to get the chaplain to have a word, who really got on the case, and - though nobody is supposed to know the State can do this, we get sold all that 'Isn't Dignitas awful' misdirection, the doctors gave her a shot and she died.

So not having DNR can be a very painful situation... it doesn't mean they can't make things comfortable with it in place.

My mum has to renew her DNR regularly- usually after every hospital stay. I remember queuing up at her GP's with her latest one to hand it in. It broke my heart but it was her decision- she was a nurse - and I didn't feel it appropriate to challenge her on it. She was fully informed about it and completely understood the arguments for and against. I felt it was my duty to respect that.

That should be had to not has to. She died two years ago.

I suspect the doctors talked to him in a less direct way, or asked him whether he would want certain interventions, it may be a while ago. He may have forgotten or doesn't want to upset you. Where there's no quality of life and no chance of improvement dnr is usually the kindest thing to do - some family members react badly as they are confusing it with euthanasia, it's not, it's just saying they wont take extraordinary measures like resuscitation.

I've gone through this recently in my family and they really didn't understand and it took a lot of conversations to make them realise its a precaution for the future rather than for right now.

Hope you come to peace over it