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?

I opened this thread expecting to say that you were being unreasonable, as many people don’t understand the point in a DNR. That is clearly not the case here and I’m shocked, you are not being unreasonable at all and your dad clearly has capacity to make this choice. No medical professional should be making the kind of comments that were made to him. I think you should pursue a formal complaint (although the professional concerned will likely deny or ‘not remember’ saying those things, it might put them off doing it again)

I had a conversation with an A&E doctor over the phone who said that to me - he said the DNR (or whatever the full term is) is not active for as long as the ICD is on. I’ve just found my dad’s purple Respect form
and will take it to him tonight. He’s signed it, ticked to say he doesn’t want extensive life-saving measures and then someone (presumably a doctor) has written in capital letters: ICD IN SITU. ONLY TO BE DEACTIVATED IF/WHEN PATIENT IS ACTIVELY DYING.

So perhaps this a lack of training on the part of medics? We have definitely been told on more than one occasion that the ICD means a DNR is not in place. It’s interesting to know this is possibly not the case because those are my dad’s wishes - keep the ICD on but switch it off once he’s clear he won’t recover. Just for context, he has a degenerative condition but it’s not a life-threatening one and he’s otherwise just old and in fragile health but he enjoys life - loves a good feed, a pint with a friend, goes to a social club and has a girlfriend too.

My dad also just told me the doctor had this conversation with him while she was examining him. She was feeling his stomach (which was a bit tender) and he said he winced as she did it but she kept talking. That just feels really awful to me, as though she was talking about this deliberately as he was sore and tired and vulnerable. By the way, she brought this up at 1am, after he’d been in A&E for 9 hours and was absolutely knackered. I’d only just left too - about 30 minutes before.

I get it - medical staff are usually brilliant and do an amazing job. A&E staff are (in my experience) very skilled and compassionate. The more I mull it over, the more uncomfortable I am.

Completely agree @lallanagy my Dad is much older, does have a DNR but we have never experienced any ageism in how he is treated. He acts far younger, is great fun and a very positive outlook. He too has had a UTI recently (hospitalised) and actually it is the health team who’ve been positive saying ‘this or that can happen and this side effect takes time to resolve and is common whether old or young’.

Can he actually die with the device in place?!

I would worry that he's had a huge amount of potentially extremely painful outcomes - bowel obstruction, breathing/suffocation - which can result in a horrible death if his heart won't actually stop.

What would that look like? Do you both know?

https://www.bhf.org.uk/informationsupport/heart-matters-magazine/medical/icds-and-end-of-life

This is an informative article. It makes it clear that deactivation is necessary in the latter stages of life, to avoid a horrible death.

I suspect what the clinical staff are saying is that your father would have died a natural death by now. The alternatives may be very difficulty for him and for you.

@lallanagy Have you actually considered the medical reasons that might be behind this? It’s not emotional for doctors. How good would life be after procedures to keep him alive? My DM had the same because the medics thought she could not survive what they needed to do in any meaningful way - ie lead a comfortable life. Who wants suffering or no life at all? These DNR decisions are not about full recovery and having a great end of life. They are about realistic medical outcomes and end of life experience. I think you are being unreasonable. Having said that, no medic discuses this with me regarding my DM but you need to
listen to medical evidence and not pure emotion. They won’t avoid treatment unless it’s hopeless.

I don't think that's normal, no, and I would seriously think about complaining. It's perfectly sensible for medical staff to discuss resuscitation with people with conditions like your Dad has but definitely not to imply that he is a burden etc.
My experience is pretty much the polar opposite. My sister and I had to ask for treatment to be limited and a DNACPR order to be in place for our Mum when she was in hospital. She was in her mid 80s, very frail, had Alzheimer's disease and had developed kidney failure after falling and breaking her pelvis. They were talking about sending her to ICU! Nobody wanted that and she certainly wouldn't have but we were treated like some kind of criminals who were trying to get rid of her when we suggested that maybe it would be better to just keep her comfortable.
More recently, my MIL was sent home from hospital having been told that she had inoperable cancer but without anyone discussing resuscitation status with her. Again, the family had to push for that to happen and things could have got very unpleasant if they hadn't.
It sounds like the situation has been handled very badly in the OP's father's case but it's just as bad if the conversation isn't had at all.

The DNACPR decision is absolutely valid even with the ICD still active. It is only in a small proportion of cases the defib would fire anyway. However, I have seen an ICD go off multiple times when someone is dying and it is not pleasant.

It seems your dad has the capacity to understand all of this, and his ReSPECT form seems very well written and clear. I complete ReSPECT forms regularly, and his one seems to be very clear. Obviously if his condition was to change and he became more unwell the ICD can be reconsidered.

This is awful. I think I'd want to know what policy this advice is based upon? Is it an initiative local to the trust or department or wider? What triggers that advice? Is there a specific age? Is it needs based?

I had an extremely ill family member. At the point DNR decision was suggested, they were mid 70s and terminally ill with multiple complications. Even then, the decision was explained to me in a meeting with every single professional involved in their care - more than 10 people. It was the right decision in this instance but I was very much given a space during this meeting.

I'd also be tempted to ask the next person who suggests this to your dad whether they personally have a rather negative preconception of older people? I know people in their 80s who still work or volunteer, who partake actively in their communities, and who still play vital roles in their families. Just because a person might also require care and assistance it's terrible to assume they don't also have other aspects to their life.

My Dad was diagnosed as being terminally ill from cancer, and I found some of the conversations about DNR/Respect forms were very troubling. I think what I realised afterwards is that the Dr/specialist nurse had different from me was no emotional connection to the patient. They see a clear black and white medical situation where any attempts at resuscitation have no benefit whatsoever.

It was said clumsily, I totally agree but I would sit and have a long talk to your Dad about the context of the conversation.

@ApiratesaysYarrr thank you for that very informative post. Having witnessed my 82 year old DF undergo CPR (not my choice) and not surviving I’m struggling to get through to my brother why it wouldn’t be appropriate for my 88 year old DM who is very definitely frail. I’ve saved your post for my next discussion with him.

That's exactly what we would do (and have done). If and when it becomes clear that someone is ACTIVELY dying, the magnet, which is only kept in a few places, is placed to deactivate it. Really weird discussion by ED.

The only other way this would happen is after the discussion with cardiology, usually in an out-patient setting, and I think in my entire career am only aware of that discussion happening 2 or 3 times.

Yes agree @ApiratesaysYarrrvery informative.

Thank you - and those are my dad’s wishes too.

I think some people might be replying to the thread without reading it all. My dad is not refusing a DNACPR, he’s all for that and his Respect form is clear. He’s simply asking for the ICD to be kept on unless it’s clear there’s no chance of recovery or he’s actively dying.

He doesn’t want it to keep him alive at all costs. He just wants a choice as to when it is deactivated and obviously, not be told that he’s somehow being a burden to the system by keeping it on.

As another PP has said, the ICD is not constantly keeping him alive. It has a pacemaker function too but the active ‘shocking’ part only kicks in, in quite rare circumstances - it’s not like an artificial heart, keeping him alive.

I appreciate this and just to reiterate, my dad has a Respect/DNACPR in place. He does not want heroic measures to save his life but he does want to keep the ICD on for the time being. His DNACPR form says this but he feels pressured to have it deactivated.

The muddle is coming because the doctors at this hospital seem to believe that a DNACPR is not active if an ICD is turned on. That’s the issue.

100 this
Only 10% of people survive an arrest
And itu s don't give beds to those with long term chronic conditions

In my experience hospitals pressurise ‘elderly’ patients (anyone aged 65) into accepting a DNR.

They claim DNR is a brutal process that an older person cannot withstand.

There are cases where DNR is appropriate but it should be based on clear clinical criteria, rather than being a ‘go to’ for anyone over a certain age.

Against medical advice, and at my insistence, my father was successfully resuscitated aged 86 after being dead for several minutes. He didn’t have a single bruise and lived a further three years with a reasonable quality of life.

Do not be bullied OP

Apologies OP I now understand your post is about your father’s ICD rather than DNR

It's appalling to keep having this conversation with him when he has capacity and has made his wishes known very, very clearly, multiple times. The last conversation you recounted is beyond the pale. It is quite literally the language of burden and I agree with the pp who spoke about it on the context of assisted dying. This is the reality - the language of burden. I'm glad he's also got you to advocate for him because that kind of pressure is unacceptable.

Thank you for this. I’m not sure everyone’s read my OP as some seem to think he’s refusing DNR when he’s not.

We really don’t think his wishes are unreasonable. I think I’ll raise it first with PALS.

I think you should make a complaint. This is terrible practice and hopefully your complaint will stop this medic treating any other poor patient in this dreadful way.

anaesthetics/icu doc who also has fairly regular conversations about this sort of stuff... 100% agree with @ApiratesaysYarrr

i suspect that the person who had the chat re. 'multiple carers a day' was using that as a (clumsy) indicator of frailty rather than a moral judgement about using up resources. To HCPs that suggests a significant degree of frailty and that even if CPR restored a pulse is unlikely to result in a quality or quantity of life that many people would find acceptable.

The ICD function can be inhibited in an emergency using a magnet....so long as the department has a magnet. If someone goes into an intractable, shockable rhythm the ICD may keep shocking until the rhythm changes to a non-shockable one or the device is inhibited either by the magnet/by the cardiac team (worth bearing in mind if he felt the shock when it did activate). The ICD won't do anything in the more common scenario of going into a non-shockable arrest rhythm. The aim of the ICD is really to fix the problem before 'manual' CPR becomes necessary and it is still possible to have a decision about the benefits/futility of CPR (referring to chest compressions/external defibrillation/respiratory support) and other types of aggressive treatment with an ICD still active.

He doesn't have to sign a DNR form - it's a medical decision and doesn't require a signature although it is obviously good practice to have the conversation when a patient has capacity themselves and/or their relatives if possible. ED doctors absolutely can have that conversation (and it's really important that they do have that conversation sometimes).

Re. the ReSPECT forms - if it was done with the GP/in a different Trust to the one a patient presents to, then they may not have access to it so it is really important for the patient/family to actually mention it and have a copy of it to show HCPs to avoid some of the repetitive conversations. ReSPECT forms can also be updated and decisions reviewed if circumstances change. It would perhaps be worth asking if the existing document is actually on their system and tagged as being present so they can review it quickly if needs be when he's admitted.

Thanks for this. I’ve just noticed that at the top of the form there’s a tickbox for ‘was this form completed electronically’ and it’s ticked ‘no’ which I’m guessing means it’s not on a digital system somewhere. I’ll take the paper form with me today and also scan it in and send to them, in the hopes it can be logged somewhere.

Thanks too for the advice about the ICD and the magnet. When he had pneumonia, his went off 7 times (5 times in the ambulance) and I later heard he was ‘the talk of A&E’ as it wasn’t something they’d seen before. Thankfully it stopped once they got his breathing stabilised and his oxygen levels began to improve.

Thanks for clarifying - I got the part about him not wanting the ICD switched off, but it wasn't clear to me that your dad would accept a DNACPR otherwise.

There was as always on threads of this type people saying that the patient's wishes overrule the doctor's opinion, and that doctors are being awful thinking about these things, so part of it was about that.

The doctors in the ED who told you that he can't have a DNACPR unless the ICD is switched off are wrong (I suspect either relatively inexperienced or don't understand how ICDs work), so in that situation, I think it would be reasonable to complain and ask for this to be sent out as a learning point for the department.

I assume that your dad is not bringing his DNACPR form with him when he comes to hospital as it's being discussed repeatedly on attendances? If he is bringing it, then that is even more reason to feed back to the department as otherwise he might get CPR attempted when it shouldn't be.