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Do not resusitate order - family informed?

(58 Posts)
petiteonion Tue 09-Apr-19 12:32:31

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?

ChicCroissant Tue 09-Apr-19 12:39:07

They will not discuss your father's condition with you - that's up to him to pass on the information, if he doesn't want to talk about it I think you should respect his decision, hard as it is.

I do get the impression that it is your father who doesn't want to talk about it - the consultants would have gone through things with him and your mother at an earlier stage normally.

Sorry, I know that's not what you want to hear. I hope you are doing OK. It is a very difficult time for everyone.

BlueMerchant Tue 09-Apr-19 12:41:48

I think during one of your Father's hospital stays he must have agreed to this to be put in his care plan. If your Father is able to make informed decisions I don't think they liase with family.
My Grandfather agreed to the dnr without my mother who was his nok and career present.

BlueMerchant Tue 09-Apr-19 12:42:43

Carer- sorry.

TreadingThePrimrosePath Tue 09-Apr-19 12:57:05

I concur with what has already been said, my father had a DNR that he’d discussed and signed without telling the rest of the family. It was his choice, and ultimately his decision. Is your mum saying she knew nothing about it? Did he not tell her?
Ultimately, it is the individual’s choice, and the doctors and other staff will respect that.

petiteonion Tue 09-Apr-19 12:59:26

we are not trying to go against my dad's wishes.

My dad doesnt know - he was not consulted and does not remember any conversation with any doctor.

adulthumanwolf Tue 09-Apr-19 13:01:48

He must have signed a DNR at an earlier date. He needs to ask for his records to see a copy of it.

BlueMerchant Tue 09-Apr-19 13:10:13

Agree he needs to ask to see his records.
I think he has had a discussion earlier on in his treatment and signed it or there is a possibility he has signed it and has been trying to spare the feelings of his family and save from an uncomfortable discussion.

BrokenWing Tue 09-Apr-19 13:17:05

My dad had COPD and a DNR. Towards the end he was on oxygen 24/7 (machine at home with long tubes so he could move around the house) and had a nebuliser at home too to help clear his lungs. To be honest it was no life, the only time he left the house in 3 years was when blue lighted to HDU 3-4 times a year when he had chest infections and he readily agreed with the DNR and mentioned it to us. It was not our place to discuss or disagree.

We always knew COPD wouldn't be the primary cause of death, it would most likely be a chest infection and/or cardiac arrest from over exertion and could happen at any time, but it was still unexpected when it did, especially when it was in summertime instead of another winter chest infection. It was just too damn hot that sumner. Always thought we'd have longer.

It really is a horrible condition watching someone struggle to breathe knowing nothing can stop it. That was 5 years ago and there really was no treatment other than oxygen and the nebuliser to make him comfortable and into hospital when he had chest infections. Accept the DNR and make the most of the time you have left.

wigglypiggly Tue 09-Apr-19 13:58:38

sorry to hear about your dad, if mum is struggling then has she spoken to the ward sister about getting some help at home if that's where your dad wants to be, he can have a care needs assessment to see what help he would need, I think asbestosis has it's own special need. He may well be involved with a lung care nurse who could talk to him. The family don't need to be informed of a DNR, it is a medical or patient decision. Your dad could ask to see the form and discuss it with the doctors. Try and speak to the ward sister and ask if you can meet with the doctors, with your dads permission, and ask about his prognosis, future care and where would be the safest place for him to live. If he will need carers or decides he would like to go to a carehome then your mum should ask for a full assesment for him, a carers assessment for herself and funding decisions, he may be entitled to full care funding.

RosaWaiting Tue 09-Apr-19 19:59:01

I also wonder if your dad doesn't remember signing the DNR

perhaps ask for the date of it - they should be able to provide that information.

flowers to you and yours.

petiteonion Wed 10-Apr-19 12:59:17

thanks folks

My dad has no memory of a conversation around DNR or signing anything. He appears genuinely shocked by this and is really upset.

He is discharged from hospital so no ward staff to speak with at the minute.
Mum is trying to get to speak with his respiratory consultant to see if she can arrange a time to go and meet her to talk this over. We are very much in the dark with what stage his illness is at. He doesn't tell us much but I am not sure how much he knows himself.

Brokenwing - I am really sorry for your loss.
Like your father - dad now has an oxygen machine at home with tubes, back up oxygen cylinders and a neubuliser. He cant walk anymore so is pretty much bed bound. it is such a reduced life for a man who was always so active.
He is very depressed at the minute and not really talking to people - withdrawn completely.

There has never been any kind of carers assessment for my mother and any additional supports discussed.

Honeyroar Wed 10-Apr-19 13:12:48

I feel for you. I've had my mother in hospital twice (COPD and heart issues) and my husband in several times over the past 18 months, and it's been increasingly frustrating getting information from consultants. They seem to always be in a rush and often speak to patients (who often aren't in a fit state to understand) when there are no relatives around. I'd speak to the ward sister, outline your worries, and ask to see a dr with your dad. It may only be a ward dr, not the consultant, but they should be able to explain things to you. This happened with my husband and I, we told them how frustrating it was and how we weren't feeling informed, and from that point we did get more effort and explanations. If that doesn't work I'd speak to PALs perhaps.

Honeyroar Wed 10-Apr-19 13:15:19

Sorry, I just re read that he's discharged. I hope your mum manages to get the meeting arranged. Could the GP help? I'd also ask them about care help, or research local care firms who they may have to pay for, but could be useful.

Walnutwhipster Wed 10-Apr-19 13:29:15

My mum is in the end stages of cancer. Coincidentally, I witnessed her DNR being put in place yesterday in hospital. She had to sign it but the fact I was there was irrelevant.

BrokenWing Wed 10-Apr-19 15:26:19

petite is it a possibility the dr's have spoken to your dad in the past and discussed what resuscitation will actually mean, CPR especially on the elderly (you don't say how old your dad is) is violent. It can result in broken ribs, damage to internal organs and internal bleeding, meaning more time in pain and weeks in hospital just to go through it again weeks later.

Maybe it made complete sense to your dad at the time when he signed it and he felt in control of the decision for his future, but now the reality is closer and he isn't as strong mentally it is understandably scary to think about how it will end?

Regardless of whether there was consultation on the DNR with family, do your family agree with the DNR? It is worth talking about together, if your dad suffers a cardiac arrest at home you need to be in agreement so the paramedics know what to do when they arrive and if any heroic measures should be taken.

Dad didn't want carers and he insisted on washing/dressing himself even though it took hours, mum helped with the rest and we supported them both, but he did have the district nurse (Scotland) who would pop in at least weekly to see if that situation had changed.

petiteonion Wed 10-Apr-19 17:18:56

hi brokenwing. I have still to speak with my 2 brothers about the DNR. I think they will be shocked but I don't imagine they will not agree.

I personally think it is the best decision for dad and also for the rest of us. I know that sounds cruel but the past 3 years have been incredibly hard for all. He was on life support 3 years ago and since then - his health has just deteriorated. He is in and out of hospital constantly and his life is so reduced. It is heartbreaking.

He wont talk about end of life at all so we arenot aware of what he wants in the last days / his funeral etc. my mum wont push it with him but the news of this DNR has brought it forward as more of a priority.

We honestly dont know what stage his illness is at or how lonf we have etc

RosaWaiting Thu 11-Apr-19 13:34:44

it doesn't sound cruel at all

are you worried that he might not be okay with DNR now?

If you and your family think it's best, and if he won't answer the question, I would leave it in place.

I know how hard this is, I really feel for you. My dad had an unpredictable condition and didn't sign a DNR until just before he lost the capacity to do it, I'd say. I loved him, but I was relieved. It doesn't make you bad that you think it's best flowers

petiteonion Thu 11-Apr-19 13:58:42

hi rosawaiting - yes I am worried that he is not ok with it now given how upset and shocked he is to hear this. He has no recollection of any discussion and conversation but then again at times he can appear totally coherent and engaged when in reality we know he is not.

On a visit to the hospital when he was recently in, I had to correct him in information he was telling a new physio. She asked if his walking was ok and he said it was all great, which she took to mean that he was walking unaided with no oxygen. He has to be lifted out of his bed / chair and assisted to a walker and then supported when he is walking. He can maybe manage 2 steps before needing to sit again - all with his O2 tanks going.

He cant remember conversations from 10 minutes ago so he may well have had this DNR discussion but just cant remember it. That is what we need to find out.

no joy in mum getting to speak to anyone.

I called my 2 brothers last night to let them know. They were totally gobsmacked and again really upset as they somehow thought he was nowhere near that stage.
I had already told my wee sister and she hasn't reacted too well - very upset. Not at this decision but as I think she had been deluding (protecting) herself that he will get well again, it is hard to think of him dying.

his lung capacity is at 30% so I think he is in stage 4 of COPD but that is based on google searching as opposed to any explanation from a medical professional.

LittleChristmasMouse Thu 11-Apr-19 14:07:09

It may well be that the doctors phrased it differently to him and the actual words DNR or resuscitation might not have been used.

DNR does not mean no treatment so maybe reassure your dad that they will still be doing everything that they can for him like treating infections etc.

I would not be seeking to overturn the DNR. It is a brutal process with little chance of success.

villamariavintrapp Thu 11-Apr-19 14:25:59

Having a DNR doesn’t mean he won’t get well again, or that he will necessarily die soon, it just means that when he does die, they won’t try to resuscitate him. When someone with advanced COPD dies-from infection, or heart failure, or something else on top of their COPD, it is extremely unlikely that they would be able to be resuscitated and even if they were, their quality of life and life expectancy would be minimal.

florentina1 Thu 11-Apr-19 14:31:34

Resuscitation, as I am sure you are aware is extremely traumatic. I had a DNR for both my mother and stepfather as they were both very weak in the final stages of their life. My mother had made a living will bit my step-father had not. In both cases the Doctors treating them were extremely kind. They explained that admittance to ICU was very invasive and that the body had a way of knowing when enough is enough.

Though they may not have used the words ICU or DNR, do you think they spoke to him in terms of ‘when the body has had enough’. I truth this maybe should be discussed with the family, but the first duty, is with the patient.

SoHotADragonRetired Thu 11-Apr-19 14:36:47

I don't think it's cruel at all to accept that a DNR is appropriate for your DF. Tbh, I think it's often crueller, in practice, for families to insist on resus when it can essentially only do harm - it's a rough and nasty process with a low 'success' rate at best. But it's not my DF so it's easier for me to say that. flowers for you.

RosaWaiting Thu 11-Apr-19 14:38:10

are you all familiar with the DNR process?

also, if you ask your dad, is he likely to need an explanation of it?

if he is asked and says he would prefer not to have a DNR, I would respect that. There are certainly people who want to live no matter what, he may be one of them.

Ohyesiam Thu 11-Apr-19 14:46:56

Could PALS at the hospital and/or his GP be of help?
I want to echo what app said about doctors using indirect language. Some doctors are no good at the” bad news” bit and really use fuzzy language that can be misinterpreted easily. So the conversation may never have hit home in the first place.
So sorry for your situation opflowers

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