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?

Thanks. Yes, he normally has it in his hospital bag but this was a bit of a hurried trip so we didn’t have it with us. He did tell the doctor he had one but she seemed convinced the ICD was the obstacle.

It’s really good to know that it’s not. My dad and the family are really pragmatic about these things - dad only wants to be around for as long as he has quality of life and he certainly doesn’t want anything which might make his life even worse. But for now, while he’s doing quite well, he’d like the ICD to stay as it is.

I’ll talk to the hospital perhaps as less of a complaint and more of a request they explain this to their staff. I am irritated by the suggestion he’s a draining public resources but I also accept it might have been very clumsy phrasing. Thanks for helping to clear that up!

The thing is. It's a defibrillator so if he goes into ventricular fibrillation it will restart his heart quickly but if he deteriorated and his heart stopped because of severe pneumonia, sepsis, big bleed or severe heart failure then the defibrillator wouldn't work in those situations.Therefore if the ICD works quickly then that's fine but if it doesn't work then you wouldn't do CPR. I'm not sure why they can't see that and put the DNACPR in place. I'm a very strong advocate for appropriate DNACPRs (though totally opposed the blanket ones they wanted us to do during COVID)but not so sure at this stage I would agree to turn off the ICD.

This happened recently to an elderly relative of mine, we were called in told he would likely die and that they were putting DNR in his notes. In the end he recovered and is now back home doing well. It really did feel like once you reach a certain age its an economic choice to essentially let you die. I do understand the logic to some degree and that not everyone can recover from resuscitation or being placed in a coma and ventilated for example.

I agree with @GloiredeDijon that this is a reason I currently am not in favour of the assisted dying bill. In principle I am not against it, in practice Doctors and Nurses will become desensitised to it over time and it will just become another, cost effective treatment pathway.

@ricfab It would have been an informed pathway. Far better than we have now. Elderly care in hospital is awful and plenty of us have seen elderly people who would have preferred to die rather than be kept going. As here, some relatives cannot let go but it’s all about their feelings on death. Many older people would like to die before the awful NHS puts them through hell. I’m first in that queue. What others do should be their choice and not impinge on me. The idea that people just accept “treatment” is wrong. They should be allowed to opt out.

Well my elderly relative didn't "prefer to die" as you put it. He is doing well, little thanks to the NHS. It was really upsetting for both him, his wife and family and the doctors took little notice of what the family were telling them about his capacity up until falling ill at that time. His wife was told about the DNR but it wasn't some informed and agreed on choice she was simply told that was that. He was also kept without any food from Friday until Monday morning in hospital because the shift that was on on Friday failed to update his notes, his family repeatedly told the weekend staff that he was now allowed to eat but they refused and told us not to feed him either, the mistake was found on Monday morning.

The pathways they use are no doubt useful to the NHS as an overloaded institution but they aren't the same as proper individual medicine. I also have a similar experience with a much younger family member.

Again this is why I have very grave doubts about introduction of assisted dying, especially if it happens within the context of the NHS that would be a very dangerous thing and becomes again just another expedient pathway for over burdened clinicians. That might not be the intention but it will be the likely outcome.

As for yourself, you are welcome to volunteer to have a DNR put on your notes in perpetuity but I don't think doctors should be putting them on without consent when they do not fully know, listen to or accept the capacity of a person they have written off as too old to treat.

Just wanted to say how helpful this thread has been - all the various bits of advice have helped me understand this process a lot more.

I didn’t know (for example) that the ReSPECT form is essentially an expanded DNACPR and because my dad has that (along with his clearly stated wishes to keep the ICD on), he has, despite what he’s been told, got a DNR already in place. So for some reason (and maybe it’s just lack of understanding) several doctors at this hospital seem to believe that the ICD overrides the DNR, when actually the two can go hand in hand as long as they’re detailed on the ReSPECT form. Thank you @Greybeardy for explaining that.

I took the purple form to my dad in hospital last night and he did a little punch of the air because knew he’d already detailed his wishes but was delighted to see it was confirmed in writing. That piece of paper will now stay firmly in his hospital bag, should he have another admission.

I have submitted a complaint via PALS.

Also thank you to @ApiratesaysYarrr👍🏻

it's really important to be clear that making a decision that CPR is not appropriate is not the same as making a decision that a patient is on an end of life pathway. You can still receive active and aggressive treatment whilst being 'not for resus'. What an active CPR decision is saying in those circumstances is that if, despite active treatment, things deteriorate to the point of having a cardiac arrest then that is suggestive of catastrophic whole body failure and the chances of getting a pulse back and restoring someone to being able to have a good quality of life is so rare that it is almost negligent to put the patient through that.

@ricfab Your relative is entitled to their views, but sadly yours impinge on
me. I would definitely prefer to be put out of my misery if I felt that was best for me. The NHS is very poor for many elderly people and home care even worse. Not interested in prolonging life in that scenario and I’m perfectly entitled to that view but cannot implement it due to others telling me what I can and cannot have. I’m happy to pay and circumvent the nhs regarding end of life. I’d quite like to do it full stop. Care of the elderly isn’t care. There’s torture involved all too often. If you’ve not seen it, lucky you. Those of us that have might prefer to duck it ourselves!

Another doctor who has had these conversations professionally.

Sounds clumsily done. Don't understand the point the staff were making from your telling. As others have said ICD responds to VF/ VT which if treated promptly respond well.

Bad "medical illness" usually results in a non-shockable cardiac arrest rhythm which the ICD won't trigger for and which in someone with limited reserve is difficult to recover from.

The point that I always found best understood by families was that if you have a cardiac arrest for medical reasons the resuscitation success rates are pretty low.

And then if you do survive you are highly likely to need intensive care to recover from it/ the cause of it. Intensive care is pretty horrible with lots of interventions and not much dignity. If you aren't in great shape before your illness your chances of surviving are lower.

If you do survive then what does your future hold?

On average most older patients drop a care dependency level after a serious illness. So if you lived independently at home, you are likely to need to go home with carers.
If you were at home with carers you are likely to need residential care.
If you were already in residential care your likelihood of survival is pretty low.

There is always the odd person who outruns the statistics but they are unusual. As someone who has delivered intensive care I actively supported the medical decision making not to admit my Mum (not old but medically complex/ frail).

When my Dad was in his final illness we had talked extensively about his wishes and I advocated hard for him to keep my critical care colleagues well away! He had about the best death I think you could get in the circumstances with family present and lucidity until the end.

I now care for another older relative. They have always opposed such decision making and we have had lots of heated discussions in the past about people in the generation above. Most memorably my grandmother who had end stage renal failure and had chosen not to pursue dialysis when given the choice knowing that she would die (eventually) as a result. In her final illness she was unfortunately in a care of the elderly ward bed where I had recently led an unsuccessful resuscitation and when as a family we were talking about this all I could see were the images of that patient, the sound of ribs breaking, their nightwear being stripped back and the sheer and utter indignity of their final moments with relatives unable to be present. This was absolutely NOT what I wanted for my Gran especially as a resuscitation attempt would have been totally and utterly pointless as her kidneys weren't going to magically get better.

I was therefore very surprised to be told by their GP that my relative had agreed to a community DNACPR order which I think is completely and utterly the correct choice. I had been psyching myself up to advocate for them to have aggressive treatment that I felt would be pointless purely because on the basis of past conversations I thought it would be what they chose.

Thankfully it appears that some of our previous discussions had hit home.

My own wishes are clear I only want aggressive treatment if I am likely to return to a good functional level. My nearest and dearest all know this. It always feels pertinent as I cycle commute and motor vehicles get too close on a far too frequent basis.

This is why the assisted death bill should never ever have been considered. This sort
of pressure is unconscionable.

@ParmaVioletTeaSome of us can make our own decisions thank you. The op has complained. People die - often it’s awful. Who honestly wants that?

She should never have said that. I'm in complete agreement.

However it's in your dad's interests to follow her advice. It is vanishingly unlikely that he would be better off for having it and every chance that he would die a slow and painful death because of it. He hasn't really made a particularly informed decision

One of the things that I talk about when having DNACPR is that making a DNACPR decision is NOT the same as "do not treat" - we would still give antibiotics, fluids, oxygen etc to them/ their relative if we felt that there was a chance of reversing things, it would simply be that if we got to the stage where heart or breathing had stopped we wouldn't try something that we know wouldn't work. Most of the patients that I have DNACPR conversations with/about go home from hospital - it's about planning what we do if the worst happens.

There are a very small subset of patients where we might have the conversation with them or their relatives about whether bringing them to the hospital is the right thing to do - these would usually be incredibly frail people who have had several admissions within a very short space of time for the same thing e.g. they stop eating and drinking, we give them fluids through a drip, they go home and within a week or so are back again, and the same thing happens repeatedly. When they have conditions like dementia which mean that they often lose the drive to drink, and it's not appropriate to put a tube into their stomach to feed them (again, this is because we know that it doesn't help things overall, and the procedure itself carries some risk, including lifethreatening complications, so exposing people to the risks without the benefits is inappropriate), then we might have a conversation about how it's likely that their relative is approaching end of life and whether we should manage symptoms at home (recognising that we haven't made a real difference by bringing them to hospital) rather than bring them to hospital - which is associated with increased confusion as they are outside their usual environment, with people poking needles and tubes into them. However that's a different conversation from the DNACPR conversation.

Sorry, a very long winded way to say that just because there is aDNACPR and the patient recovers doesn't mean that it's not appropriate to have that in place.

But some people cannot make their own decisions or are subject to coercive control and pressure.

I really worry about the unintended consequences of State involvement in killing people. Just look at some of the cases in Canada.

When my Dad was given a dnr it was explained that it wasn’t a choice it was up to the consultant. My Dad was very poorly and wasn’t going to get better and in many ways I’m glad he passed in hospital as it was relatively quick and calm for an older person these days. I know of older people who are basically not dead but have no quality of life and stay in that state for months/ years before their body finally gives out and it looks like a living hell and from what they say when they can say something they feel the same way. I wouldn’t want to put a loved one through that and I wouldn’t want to live through that.

I am glad op’s father is getting better and I wish him good health

@ParmaVioletTea A tiny minority. And the majority should matter. We cannot always have policy based on “what if”. Most people know what they want and why. They can articulate what they want and should be allowed to.