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 agree completely. Elderly and disabled, chronic conditions etc are all treated as burdens and there is a definite pressure to code in hospital. It's extreme ableism to assume, imply and practically assert that a challenged and aged life is not worth living.

I am so sorry this is happening.
He has capacity and should be respected.
Is there a chaplain or similar you can speak to, who can keep an eye out for him, and advocate for his free will?

It does sound like the doctor was overstepping here and it turned into a guilt trip.

Your father was able to clearly and concisely make his wishes known and that should have been the end of it. It doesn't matter that he has carers coming in several times a day if he is perfectly happy with that arrangement. He presumably has to pay privately for them too because for the most part the state doesn't provide very much.

He doesn't want the DNR at this stage so ignore them and don't set it up. It is HIS choice.

I agree - it’s very abelist to look at a disabled person and assume you know what their quality of life is like. Yesterday’s conversation has really upset me and I am considering making a complaint. I’m amazed she would suggest (however subtly) that he was being selfish by basically refusing to die.

My dad is a realist and has no desire to live forever. But the general agreement is that for as long as he’s happy and is able to take enjoyment in the simple things, he wants to stick about. That’s not selfish.

Yes, make a complaint about the overstepping and the pressure he felt under.

He is compos mentis, has capacity and made his wishes clear. It should have stopped there. The doctor's job is to explain things clearly but not cross the line into pressing people to set up DNR orders that they are not comfortable with and don't want. They are the right decision for some people, but they are not always for everyone.

That's horrible.

What exactly did they think was the point of going to the trouble and expense of putting the ICD in only to switch it off?

My own parent was in hospital last week and I overheard (as you do) a Dr talking to another patient AFTER his interpreter had hung up. During the long rambling conversation where the patient, who was coughing his lungs up throughout, didn't or couldn't say anything other than 'OK' the Dr slipped in that he didn't think chest compressions were recommended. At the end the Dr just said OK? and the man said OK and that was that.

I know the hospital environment, especially A&E, is not the ideal place for a nuanced conversation about this stuff but come on.

This is why I am not in favour of introducing assisted dying. I can imagine doctors having conversations like this over and over with every patient who they might consider a burden, regardless of quality or appreciation of life.

I’d complain, and also if feasible stomp in in person and LOUDLY ask at the desk who do I speak to about the multiple doctors pressuring my dad to turn off the ICD device he chose to have implanted because they have DECIDED HE’S BETTER OFF DYING if he has a heart incident?? These conversations were in YOUR A&E. He had a UTI for gods sake and your A&E docs basically told him he isn’t worth treating. Are they even qualified as doctors? Have you checked if this is their advice? Are you sure the mortality rate of their patients isn’t on the high side if their opinion is their elderly patients are better off dead? My dad doesn’t want to be dead, he’s happy being alive except for the shitty doctors opinions he’s had to tolerate. I’ve put in a formal complaint of course but who knows what happens to those, I’ll be following up though.
loudly. And clearly.

Ha! I like your style! 😂

Hmm. I'm of two minds, purely for the person's own sake. Nobody should be suggesting someone is a burden on the system! All sick and disabled are. They're also people and some have awesome lives despite their problems.

On the one hand yes it's out of order when he's thought about it, discussed it with his nearest and dearest and has a life worth living. They shouldn't be insinuating his life isn't worth living, that's for him to decide.

On the other hand, that situation only lasts as long as it lasts. Too many people end up dying a long drawn out death in utter misery, with nobody really visiting because friends disappear when you stop being fun, and generally some form of cognitive decline or severe physical issues that by then have frankly made life not worth living in many cases. A lot of people probably would be served well by a DNR in old age, because it would mean that the unexpected catastrophe they could have been saved from, means they'll pass away instead. And whilst that's sad, it's not as sad as taking years to slowly die from a lingering condition, isolated, scared, in pain and in receipt of insufficient care. Which is people's reality a lot of the time, unless they have endless and lovely family around pitching in as carers.

The thing with your dad though is at the moment he appears to have no cognitive decline at all, so he could choose to turn off the machine at any time (eg if he was diagnosed with something that's possibly going to be long, drawn out, cause unhappiness for him and result in death/mean he's in the situation of not having enough care provision). So for him, keeping it switched on for now makes more sense.

Unless I'm wrong about it being easy to switch off and there would be a 2 year waiting list for an appointment to get it done. In which case I can see why the doctors harangue him while they've got him there and could do it right away. I don't know what's involved in switching it off.

Each doctor won't realise he's already been spoken to extensively about it by others and many people do dismiss a DNR out of hand without really thinking about it.

That’s awful OP - sorry your poor dad (and you) have had to deal with that along with being unwell

Isn't part of a dnr to avoid very violent resuscitation? Breaking of ribs trying to restart the heart etc?

Yes and in someone old the recovery and being bedridden for a while could finish them off in itself, even if previously doing fine.

If this really is how the dr worded it OP then please make a huge complaint. A DNAR decision should be about what is least harmful and most dignified for the individual patient and their family. It's about them not having to go through quite violent and distressing treatment if it's going to be futile. It honestly has absolutely f all to do with how much of a burden someone is on society or how valuable their life is. It is offered to the 80 year old with heart failure not becauae their life means less than the fit and healthy 20 year old (for example) not because their life means less but because they're simply not likely to have a good outcome. I'm a l dr and I spend so long reassuring patients and families of this when I have these conversations. It seriously pisses me off that there's clinicians who think of it like your dr as it adds to the fear of it. This dr really needs some training because it's really not right how they've approached this.

I'm not in favour of it either because as well as hospitals, social services are bad enough as it is. If they know that by refusing to provide care they can make someone suicidal and oh look! If you don't want to live due to your situation you can have assisted dying! they'll be doing a whole lot more of refusing to provide care. It will end up in a situation where even people with full capacity have the ability to decide their own quality of life taken away from them. Someone in authority will decide whether, in their opinion, the person has quality of life and if they decide no, they'll decide the only help allocated is assisted dying take it or leave it.

In this mans case it's not even primarily about a DNR (from his perspective anyway), it's about him turning off a machine he's already got that could keep him alive without any other resuscitation needed.

I don’t like the way he was questioned almost quizzed about his intentions. It does seem to overstep the bounds and really once clarified he is in-fact a full code that’s the end of the discussion. A UTI caught early is not a diagnosis to trigger a code status conversation other than …we have you listed as full code this is still accurate?

there is no procedure to turn defibrillator/ pacemaker off. It’s deactivated by a magnet.

You are misunderstanding. It’s really not about whether his quality of life is worth preserving. If his heart stops it will be because of his Heart Failure and resuscitation cannot reverse that, unlike in a 40 year old who has a heart attack and can be resuscitated and then have stents fitted. His level of frailty, as indicated by his dependence on carers, and the fact that a simple infection required a hospital admittance, is strong indication he would not survive a resuscitation attempt and it would deny him a natural, peaceful death. Obviously the hospital should have explained this to you both though.

there is no procedure to turn defibrillator/ pacemaker off. It’s deactivated by a magnet.

Not quite true, a magnet usually puts an ICD in to 'pacing mode' at a set rate. But that's not really relevant.

OP

I think you need to complain although you also need to have a discussion with your father.

My father died, age 76 in January.

In the December he had visited me for a couple of days and then drove to my brothers. Dad lived in Lancashire, I'm in the midlands and my brother is in Cornwall so quite long journeys.

He was attending church every week, giving another parishioner a lift, he took his friend shopping once a week and socialised with his neighbours.

He did his own housework and cooking although he did send his shirts out for ironing.

I tell you all this to show you he was active and healthy.

When he didn't pick his friend up to go shopping another friend called round to check on him. He had had a stroke.

When he got to hospital a chest X-ray showed pneumonia.

He went from a healthy independent man to dying within a couple of days.

Does he get his ICD checked every 6 months, or every year? It might be worth a discussion of how it is programmed and if that programming should change.

Just had the opposite arguement for DH. We wanted his ICD deactivated as he wants to die as he is so frail with very poor QoL. Wouldn't do DNR if the thing would keep restarting him! But your father has come to the opposite decision and the medics should respect that.

Your being unfair they need to know
even if he has one they will do absolutely everything but restart his heart to save him

the trouble is people think it’s like when you see it on tv there heart stops they give a few pumps on the chest shock them with a defib and 10 minutes later all smiles and having a cup of tea

resuscitation is BRUTAL they can break every bone in there chest which leads to endless problems
but the main thing is when the heart isn’t beating there’s a risk of the brain being starved of oxygen and resulting in brain damage
the person you get back after resuscitation isn’t guaranteed to be the person they were before
your using how well they are now and there quality of life to make your decision
they can bring them but but they might not be the person they were and there quality of life can be very poor

Sorry I said my Dad was 76, he was 86.

make sure you keep an eye on those doctors
My mum has COPD and every year for the past few her oxygen levels have gone extremely low and she becomes so out of it we have to phone the ambulance and have her took in for a few days .
Last time this happened a doctor come to me an was talking to me and mentioned DNR and she was talking so fast and had a foreign accent I could barely make out what she was saying apart from DNR and telling me the benefits to it, I was nodding . I agreed to nothing !!!
Anyway , when my Mum was back to herself I asked her to find out what this doctor had been saying to me and turned out someone had put the DNR on her file and said her next of kin agreed to it !!!! I’m not her NOK , and My Dad hasn’t been anywhere near a doctor for my Mum …
Thank god she didn’t need to be resuscitated at any point !!!

it took weeks for my Mum to get it removed off her files.

And I have seen this isn’t a one off , a lot of people are having it happen to them. DNR being added to their records when the patient nor their family have agreed to this !!!!

@Lastofthesummerwines A DNR decision is made by clinicians and does not require consent from the patient or the family. COPD is a terminal illness. If she dies from COPD, being resuscitated won’t fix the reason she died in the first place. Hence why it wouldn’t be appropriate. Doctors should really explain this better.

It’s such a big decision for anyone to make and yet I don’t feel like many people are aware that it’s not something you have to agree with it just happens …

From the various posts I’ve seen where this has happened , mainly on other platforms , people were not aware that you don’t necessarily give your permission for a DNR . So , it’s upto the discretion of a medical person ?! That’s even more worrying.

Thanks for that awareness ..

If the Doctor actually said what you are saying she said....i.e. "Dad's a burden" then you should have (and still should) make a formal complaint.

However in my experience, DNRs (I don't think they're called that any more) are in place because the Doctors are pretty sure they CAN'T resuscitate (my Mums chest was broken from a previous resuscitation therefore they couldn't do it again) or the patient is so ill that resuscitation would be pointless (the situation with my Dad)

We were asked for permission to put a DNR in place both times, with Mum and Dad.

Mum and Dad weren't asked (dementia)

Edit just checked, it's DNACPR now although often still called DNR