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?

What doctors have missed out is that survival statistics for post-resuscitation intensive care are bad for patients over 80, let alone with co-existing illnesses like Heart failure or COPD. I agree that the way everything was communicated to the OPs father was poor however, if he is sick of having the same discussion it’s worth getting an advanced directive drawn up and explaining his wishes on there for when he has//hasn’t got capacity. Doctors generally have to respect it.

I personally think that the resus conversation should be done by their regular doctors eg cardiologist/cancer specialists not people who have never met the patients previously in A and E.

Personally I would encourage him to complain due to telling him he is a burden.

My husband had a similar conversation, they essentially said it the surgery went wrong wouldn’t he feel he had ruined his families life. Said doctor was due to perform the surgery, so he changed his mind and had it performed elsewhere. He complained to PALS, he received a written apology from the trust and that surgeon is no longer allowed to work with patients who have the same condition as my husband. So he’ll ‘just’ be doing the same to people with other conditions now.

I would complain. Did he have his DNR with him? Does he have a RESPECT form to go with it? I kept all my father's important forms, including DNR, PoAs etc in a red folder by the front door. Wherever we went, it came too. Then you just hand it to whoever needs it and you don't need to have the conversation.

This has made me so sad, I'm the last person to put in a complaint about medical staff, who are so under pressure, but please put in a complaint. Your dad should categorically not be made to feel like his choice to try to live means he is a burden. He should not be having to phone people to advocate for him, to say he wants to live. Your anger is completely justified, I am so angry on your and his behalf! I'm sure so many people who don't have a NoK get railroaded into this decision.

Thanks for all the comments. Yes, we do understand fully that in the event of a massive episode, manual resuscitation is very unlikely to work and if it did, it would leave him worse off. He doesn’t want that and neither do we. If he didn’t have the ICD, this wouldn’t really be an issue. He’d have signed the DNR and lived his life until it wasn’t possible to any more.

As mentioned, the ICD went off about 7 months ago (for the first time) when he had pneumonia. He’d been to A&E two weeks earlier with a bowel obstruction and they’d pressurised him then to switch it off. He preferred not to and two weeks later it saved his life. He was quite poorly for a couple of months but then he rallied and suprised us all by making a really lovely recovery. He met a lovely doctor there who said ‘we thought you were a gonner but it saved your life. If you want to keep it on, it’s your decision’.

Yes, there’s been frequent trips to hospital and yes his mobility isn’t great but he genuinely enjoys life. Someone believing he’s a burden to the system is not relevant as to whether the ICD stays on or not. He’s certainly not daft and has full cognition!

Unfortunately he didn’t! I thought it was in his hospital bag but it wasn’t. I’m going to make sure it goes in for future. I’m not sure what form he has - it’s purple and it says clearly ‘ICD to be left activated unless actively dying’.

Oh I do understand as does my dad. We actually lived through this with my mum so know that resuscitation is nothing like what’s on the TV. In the event of a massive episode, my dad is very clear - he does not want that.

However, he’s saying that for now, he’d like his ICD left on/activated. And because an ICD attempts to restart the heart, that technically over-rides a DNR. I don’t think it’s unreasonable for him to say ‘I want to keep the ICD on and give myself a chance…but if that fails and I die, then fair enough, no more treatment’. Not that they’d give him any, anyway!

I’ve not read the full thread, but

When my DH was in hospital very unwell, he was pressurised to sign a DNR. At that time, I think they knew he was more unwell than what they were letting on.

I had a furious conversation with a doctor that went behind my back who saw my husband after I had told her not to discuss it with him and really upset him shortly after I left the hospital

About eight weeks later in a completely different hospital a doctor there very compassionately explained to me the consequences of my husband not having a DNR. basically when they administer CPR, they will almost definitely break ribs and that can be enormously painful

The situation I found myself in was that if DH had arrested, they would have had to administer CPR and he would’ve suffered a lot more than he already was and then still passed away.

However, the main difference was my DH was very much heading towards the end of his life

I had this recently. My dad was admitted to hospital 3 weeks ago after a fall. Turns out he had an untreated UTI that had triggered Sepsis. I got back from the hospital and to sleep about 2 am only to be called at 4am to be asked to consent to a DNR.

Prior to the fall my dad has been living independently on no medication and no health issues other than getting old, he is early 80’s with full capacity.

i wasn’t really with it on the call but I did not give my consent.

As it turns out it was a moot point anyway as my dad responded to meds and is now in a rehab hospital to regain his strength.

Looking back at the call I was on the phone for 35 minutes, they had a good go at persuading me as it was the doctors recommendation.

there is no procedure to turn defibrillator/ pacemaker off. It’s deactivated by a magnet. that’s not true.

A Magnet will temporarily deactivate an ICD/pacing device, hence why people are advised to keep mobile phones etc away from them and also not to walk through airport scanners etc. However the device will automatically deactivate after a period.

There is however a procedure during which the pacing team can link to the device and deactivate it/turn it off.

Mine had to be deactivated before I had my transplant last year as by cutting into the chest the defib is activated which will shock not only the heart but the person cutting into the patient.

As for DNR, while I think this particular conversation was somewhat different from an active DNR one, I do think that we need to talk more about whether and when resuscitation is and isn’t appropriate.

Firstly, the survival rate from CPR is low. Less than 10% outside of a hospital environment, and between 10-15% in a hospital environment.

Added to which, the process is brutal. Fractured ribs are the norm, broken ribs, punctured lungs, additional complications such as pneumonia are common, as is brain damage from being starved of oxygen.

If you’re looking to buy someone a couple of extra years of life, and let’s be honest, over the age of 80 you’re not looking at long life, then you have to question what that life is going to look like.

Do you break their body into a million pieces just so that you can say that they survived the cardiac arrest, only for them to potentially die later from pneumonia, or never regain proper mobility due to the number of broken bones they sustained and live out the rest of their days in pain?

Having had CPR after a cardiac arrest 7 years ago I can categorically state that it is brutal. I woke up with several fractured ribs, later sustained pneumonia, and then had the ICD fitted.

I’ve since had a heart transplant and am doing well.

But would I do the same in 20/25/30 years time knowing what I know now? Would I agree to put my parents through it? No. And neither should we.

There’s such a thing as preserving life at all costs, and while I don’t agree with assisted dying, neither do I think that we should keep people alive just because we can, no matter the cost.

I think you should put in a complaint about the Dr, that was extremely inappropriate and rude.

@lallanagy purple form is the RESPECT form. DNR is red. It's hard caring for our parents isn't it? My time doing that has just ended, but I would do it all over again in a heartbeat if I could.

These conversations ideally shouldn’t be happening in an A&E environment, where everything is chaotic and he hasn’t got a relationship with the staff. Really this is something that should be discussed by his GP, heart failure team, or palliative care team (if he has their involvement).

DNACPR decisions, and the decision to deactivate an ICD are not the same thing. Sounds like very poor communication on the part of the A&E team.

Making a decision around DNACPR however, sounds like it could be sensible, given how frail your dad now sounds (needing carers, more hospital admissions). This doesn’t mean that he wouldn’t receive other life sustaining treatment (antibiotics, fluids, medication for his heart), but just that if he is so unwell his heart stops beating, people won’t be jumping up and down on his chest.

It may be that deactivating the ICD is considered further down the line, but it does not have to be deactivated as part of a DNACPR decision.

It might be an idea to speak with your dad’s heart failure team for some more advice.

I’d also just say that no one should be asked to consent to a DNACPR decision, either for themselves or a loved one. This is extremely poor practice and communication on the part of HCPs, and often leaves families feeling like they’ve had to make a decision over ‘life or death.’

DNACPR is a medical decision, however, must be discussed with the patient (if they have mental capacity), and if they wish, their family. If they do not have capacity, this should be discussed with next of kin / family. No consent is required, but this should always be discussed sensitively, and with plenty of time for people to ask questions or share concerns.

That all depends very much on the stage of COPD and the individual person. People can live with COPD for decades, and can go to the brink during an exacerbation, recover and then live a reasonable quality life. I know because I’ve seen this in my family more than once.

Medics railroading patients based on text books or population level stats, and putting down decisions the patient hasn’t made isn’t acceptable.

Absolutely outrageous, I am a trained counsellor for ICDs and only someone who has a lot of experience, a cardiac physiologist or cardiac nurse should be discussing switching off an ICD and in a calm environment (ie not a and e unless it is an emergency). Definitely complain.

this!!

I would make a formal complaint. It’s totally unacceptable for someone to be coerced into withdrawing medical treatment. I’d be furious!

That’s terrible. I’d def be making a complaint about that doctor . Seems like your dad is a sensible man and has made an informed decision about his care.

And this is why most disabled people dispute the Assisted dying bill.
I’m glad the Lords blocked it and I speak as someone with stage 4 cancer and as a retired nurse, and as someone who has been sole carer a family member dying.

Ultimately, it will be up to the medics to decide whether to resuscitate a patient, regardless of their wishes. Obviously as far as possible their wishes will be considered, but can, and often are, overridden.
In this instance, there is a person whose medical issues are complex. For someone to need to be admitted via A+E for a UTI must mean they were very poorly, otherwise wise they would have been treated at home with antibiotics. UTIs notoriously result in confusion for the sufferer, so it’s possible that he has misunderstood what the doctors have been asking him.

I’d agree with you about the DNR, but that’s not OP’s concern.

They were pressuring him to turn off his pacemaker. That’s totally different!
Connected, but different. It’s more like withdrawing daily, routine medication like asthma or blood pressure meds.

They were asking him to turn off the defibrillator part of the device. It would continue pacing.

Ah, ok. Tripped up by my lack of knowledge. Sorry. So daily QoL unaffected, but the next health crisis, no automatic boost.

I can see why OP and her Dad found it hard. Something you’ve spent some years believing is essential is hard to turn off. It’s a shame we only get these conversations when everyone is stressed and unwell.

His wishes should be respected but he needs to understand the impact. At 80, even if I was healthy I will have a DNR and advanced wishes. The real problem is if it’s sucessful and then he will likely have a few mode miserable weeks, maybe months in hospital unwell with vastly reduced capacity.