DNR - is this kind of pressure normal? It makes me very uncomfortable.

[lallanagy]

My dad is 80 and he has a couple of chronic conditions including heart failure. He has an ICD (an in-heart defibrillator) and after nearly 10 years of it in place, it’s only gone off once and that was when he had pneumonia and his sats dropped very quickly. Ever since then, he’s had three very pressurised conversations from doctors in A&E where they’ve told him he should strongly consider having it switched off as for as long as it’s turned on, he can’t sign a DNR.

My dad and I have discussed it at length - he has a quality of life probably because he’s a very optimistic person. He has friends, he manages to get out at least once a week but even when he’s home he’s quite content. He has it clearly in his medical notes that if he was actively dying, he consents to it being switched off. Otherwise he wants it kept on.

So last night he was back in A&E for a UTI and a spiked temp. When I’d left the night (he was admitted) the doctor started on this subject again but in my opinion, she massively over stepped. She actually said to him, ‘you have carers coming in multiple times a day and all of these services keeping you going’, as though he should feel guilty about that.

He again said he’d made his wishes known that if he was actively dying then he’d consent to it being switched off but she seemed to be implying that he was putting pressure on the system. He rang me and put me on speaker phone so I was able to confirm his wishes - unless he’s actively dying, he wants it left on.

I fully understand they don’t want my dad to suffer but then neither does he. He has no desire for any heroic life-saving measures but he’d like the ICD left on - he knows what it feels like for it to go off. He knows that it could go off multiple times and could be very painful but he’s already lived through that and has made an informed decision. His choice, surely?

I would have thought the medics’ job is to clearly explain the situation to him (they have) but surely it’s crossing a line to suggest someone should stop putting a burden on the system?

@99bottlesofkombucha please don’t abuse clerical staff who have NOTHING to do with medical decisions. If you have a problem with medical decisions raise it with medical staff. People like you disgust me. Complain through PALS, don’t abuse someone who is on the minimum wage.

Agree with you OP.
They are overstepping and I'd tell them so.
Your poor dad. Hope he's better soon. Xx

During the Covid era, DNRs were put on quite a few people including disabled people without their consent. I was fuming about it and still think it is very sinister.

https://www.disabilityrightsuk.org/news/covid-19-inquiry-told-do-not-resuscitate-communication-people-learning-disabilities

DNRs do seem to be quite firmly pushed. When I went into hospital with both my elderly parents, the staff pushed quite strongly for DNRs to be signed. I would even describe it as pressurised. I discussed it with my mother who was having none of it. I have signed a DNR for myself.

The doctor should not have put pressure on your dad. My dad always said that he didn’t want to go into hospital for any treatment but as soon as he was ill, usually with a UTI he was almost begging to go into hospital and be treated and he responded very well. I wonder if this doctor had just had an extremely busy bad day and was very tired, no excuse though. I am just trying to be kind.

It is not his choice. DNACPR is a medical decision, so he does not have to agree or sign anything.
It sounds like this conversation was not well thought out at all, I would be putting in a complaint about the doctor, he needs to learn more about communicating.

That's awful especially the part about him having carers coming in and inferring that it makes it him a burden on services.
I wouldn't delay on the complaint. Do they have a PALS service? It takes a while sometimes for them to react but you need to impress on them that this is urgent and needs addressing now. Hopefully you've got the names ofvthe doctors to give to them. Make sure you have a paper trail as well as any phone calls. Hope your df feels better soon x

A late-80s next-door neighbour of ours, who was resuscitated after a 2nd heart attack, told me that the after-effects* were so painful, he wished they’d just let him die.
He died a few months later anyway.
*presumably broken ribs

Make a complaint . I'm 75 and have cancer but still living a good life . It terrifies me that this will be said to me if I have to go unto hospital for an unrelated condition.

This is horrible. Your father sounds as if he is in sound mind and is making a rationale decision. The overstepping pressure from healthcare professionals is what scares me about the whole assisted suicide bill. If I were you, I would pursue a formal complaint. I wish your DF many many more years of a meaningful life.

I totally agree, I was delighted when the AD bill failed - not because I don't want to respect the wishes of those genuine cases, but because I can see the medical profession abusing it.

Caring for elderly parents I've spent many hours on the geriatric ward at our local hospital, nickname locally as "the killing fields" - I'm constantly appalled by 90% of the staffs attitude towards elderly patients.

I agree with this. I am noticing that younger members of the medical profession have very little understanding of how quality of life evolves as we age and it gives me grave cause for concern. I do wonder whether this is why peers are tabling amendments because they see this too.
Out of interest, do we know the age of the doctor?

Doctor here who makes and discusses DNACPR decisions regularly.

It doesn't sound as if the discussion has been done well. If the doctor did say that he was a burden (in those words) then you should absolutely complain as that is inappropriate language and likely to be very distressing to hear.

However, I suspect that the discussion about how he has carers coming in was intended to demonstrate that your dad has at least moderate frailty. Frailty is independent of age - I have met 80 year olds walking 10 000 steps a day and 65 year olds that can't walk more than a few steps and need help with washing and dressing - the second would be frail, the first not.

There is excellent evidence that the more frail a patient is, and the more health conditions that they have, the less likely they are to get a successful outcome from CPR.

CPR also works best in someone who is generally well and suffers a sudden event such as a heart attack that causes a cardiac arrest, and is quickly reversible. In older, sicker people cardiac arrest is the end of a long process of decline (often an admission to hospital with a relatively minor condition, but on the background of continued physical decline), and far less likely to be reversed.

It's not like on the TV where they press on the chest a few times then give a shock and the patient is back. It's a brutal process, and like any brutal process e.g. chemotherapy, we should only be putting people through it if there is a benefit.

At 80, needing carers multiple times a day, and with significant health conditions, including heart failure, the chances of surviving a cardiac arrest are incredibly low. It's notable that the success rate from cardiac arrests because of heart rhythms that respond to electric shocks such as the ICD/ CRT-D will give is somewhat better, but in fact most cardiac arrests are not this type and electric shocks do not work (and a defibrillator would not go off during one of these episodes as they are designed to go off for certain heart rhythms which are fast rhythms, not for the most common cardiac arrest heart rhythms such as asytole and PEA (pulseless electrical activity)).

Even if the heart restarts after CPR, almost every patient after a cardiac arrest has to go to ITU (intensive care) and be put on a ventilator - something which is incredibly brutal on the body and the mind, and has quite significant risks of its own. A large number of working age adults who have an unplanned ITU stay are still not working 1 year later - that shows the physical toll on the body, and a period of time where the brain and body has been deprived of oxygen also takes its toll. In the circumstances you describe, your dad would not be a candidate for ITU, and this means that the breathing tube in his throat would be taken out and he would be made comfortable on the ward.

Having good mental capabilities, a good quality of life, or being a fighter does not determine the success of CPR - the underlying cause and the patient's frailty and health conditions do.

Patients can refuse any treatment they want, but cannot demand any treatment they want, and doctors are not required to provide a treatment that they don't think will work. This is not just an opinion - it is the law. Ultimately the decision whether or not to offer CPR is a medical one, and sometimes the waters get muddied as people are asked what they would want, when in fact what we should be saying is "This is my medical decision, do you understand/agree?(see below for what happens if patients/relatives don't agree)"

Doctors are required by law to discuss DNACPR decisions with patients (if they have capacity to understand) and relatives - the only exception to this would be in an emergency where there was not time to do so. This allows the patient or family to ask for a second opinion if they disagree with the doctor's decision. If this happens to me (which is rare) I explain that while we are awaiting the second opinion, that the patient remains for CPR. If the second opinion disagrees with me, then the patient remains for CPR. If the second opinion agrees with me, then the DNACPR form is signed and it is binding.

It sounds like perhaps the conversation with you was done poorly, but it's quite likely that if I were the consultant seeing your dad with the history you've given then I would be recommending DNACPR as well.

In terms of the defibrillator, I think that the Emergency Department (A&E) doctors have got a bit muddled - you can certainly have a DNACPR without switching off the defibrillator, although when it is clear that a patient is dying there are ways to "switch it off", but this is done at the very end of life.

CPR is a medical treatment. Doctors have an ethical duty not to offer medical treatments that will not benefit a patient, and are likely to do harm. If someone dies, and there is zero chance of bringing them back for more than a brief period of suffering, it is not ethical to attempt to resuscitate them.

Many people have very unrealistic idea about CPR. It's brutal, it will break all your ribs. If the reason the heart stopped in the first place is not a potentially immediately reversible issue, but the end result of an irreversible combination of disease and aging, restarting the heart is not giving more life, it's just prolonging the process of dying.

I know someone whose very elderly father collapsed in the street, and had bystander CPR, which, unusually, worked.. She was traumatised by witnessing his subsequent death in hospital, in pain and confused. She very much wishes his cardiac arrest had happened when he was alone at home, and he could have died without any awareness or suffering.

If someone said that to my dad I would be fuming. What an awful way to frame it. “Oh you’re a burden let’s get you out the way asap how does that sound?”

Medically whether or not he should have an DNR isn’t really the point imo it’s the way they spoke to him about it. In my experience bedside manner and tact are very hit and miss in the NHS. I have never made a complaint to the NHS despite some doctors and nurses being a bit rude and dismissive but if I was in your shoes I would.

I'm so angry for you both. It worries me if he was alone in hospital but no doubt you'll continue to keep an eye on things. Go you, he's lucky to have you.

It pisses me off. It's discrimination. My mum needs a scan, she really does but the hospital keeps turning her down. I know it's her age. She's 84. But she takes no regular meds, walks every morning for miles, no glasses except for reading, no hearing aids, all teeth present, no unusual cognitive decline, tonnes of friends, runs her own business, handwriting the same as ever, voice sounds like she's 40, plays football with the grandkids albeit slowly, travels internationally including other side of the world last year with her 85 year old bestie, lives alone in her house with too many stairs, no carers or home help, full license... I mean ffs who ever suggests an elderly life isn't worth something can fuck off.

Lol, my mum's single?! 😁

This is exactly the correct summary of the problem and although the doctor could have been more tactful they were correct , a dignified death or a brutal recus and a slow decline on a ventilator / long hospital stay is no way to die .

Complaint for sure.

There are studies that indicate that putting an ICD in someone over 80 for the first time is something to think hard about, and if your dad’s heart stops beating because he dies of something that is not an arrhythmia (eg dies of sepsis as the result of a UTI) then ultimately the ICD isn’t going to help. But neither of those are reasons to turn the ICD off as far as I can see; or at the very least your dad deserves a proper explanation and discussion.

Drives me NUTS to see all these DNARs/ReSPECT forms filled in by rushed junior staff who see it as an admin task before someone can be discharged.

Thank you very much @ApiratesaysYarrr for your full explanation. Gets to the reality of the matter.

They shouldnt be telling him what his quality of life now (he knows) is or making him feel a burden. Thats disgraceful.

Its fine to make sure he understand what CPR is and his likely outcome from it.

What it boils down to is that it is possible to have a meaningful life despite living with chronic ill health and advancing age. Of course not everyone gets that gift but it’s fundamentally wrong to look at an elderly person with multiple comorbidities and assume they have a life not worth living or that the ‘burden’ they place on the state is not a fair ROI.

My dad is a well-educated chap and despite all the physical issues, his brain is sharp as ever. He absolutely does not want to prolong his life for the sake of it but neither does he want to be nudged into potentially ending it before his time.

The ICD is doing no harm by being there. Like I said it saved his life a few months ago when he had pneumonia and went into respiratory distress at home. He almost certainly would have died without it. Even as we got to A&E that night, they asked what we wanted to do. I asked them to treat the pneumonia if they thought it was a good decision and we would take each day as it came. If it was clear he was not recovering then of course, I would have followed my dad’s wishes and asked them to deactivate it. But as per wishes, if he’s not actively dying, then it should stay on.

Resuscitation is a violent process with poor outcomes for people who already have long standing health conditions and care needs.

There is a difference (huge) between not being actively treated for illnesses and infections, and not being resuscitated in the event of a cardiac arrest.

I would much rather be DNR of the odds of recovering are stacked against me. I would always want properly treating though.

As others have said, dnr is a clinical decision and doesn’t need to include the family. That said, it would be nice if they at least discussed it with people , my late mum had a dnr put in place whilst in hospital after a fall, we knew nothing about it until she came home , prior to the fall she was a completely independent 86 year old, hadn’t had any significant illness, hadn’t seen her GP for anything other than vertigo in probably 20 years,for us it wasn’t the dnr, she sadly didn’t pick up after a long lie post fall, it was the total lack of discussion, the fact everyone in the hospital assumed she must have had carers already due to her age and quite honestly the fact that they had zero idea who she was, even told us, after we asked why she was on antibiotics, that it was to treat the uti she had when admitted from the nursing home, she actually lived in her own house.

I find it impossible to believe that that was what was actually said, let alone 3 times - 'he should have the ICD deactivated as he can't sign a DNACPR form without it'.

Firstly usually that conversation is had by the admitting team, not ED. And as I presume cardiology made the decision to put it in, any decisions re: deactivation would be made after a discussion with the patient by cardiology.

Secondly, it's not true he can't sign a DNACPR (nor does he have to, as others have said, it's a medical decision).

I am in two minds about this. My late Mum was DNR but I had to keep reminding Doctors of it as you never saw the same Dr twice, her notes were lost on one ocassion, they couldnt find her on their system etc.

She lived (and so did my Father) far far longer than necessary. Both were in a terrible state in the last few years. Mum in particular was very unhappy.

My experience is that the medical professionals pat themselves on the back patching up very elderly people and literally shipping them back to their care homes where they just existed.

In the end a young person at the GP surgery had a very gentle call about not prolonging things. They got End of Life drugs ready for her at the care home rather than running around at the last moment. It was a big thing for a Doctor to arrange and you can bet when the time came it would a weekend of a long Bank Holiday and no on call Doctor would sign it off. It meant when I last spoke to her and asked her whether she was in pain and she said no. They had worked and she was much calmer in her last few days.

She was a tiny woman and one doctor said she wouldnt survive CPR

Absolutely agree.

Unscrupulous hospital managers would pressurise staff to use assisted dying laws as a way to clear beds.