Someone put a Do Not Recussitate on my mums file without any if the family knowing

[Potentialpoochowner]

She is in a care home with dementia and does not have mental capacity and has never once mentioned herself ever in her life wanting a DNR. It only came to light after a recent stay in hospital - thank god she didn’t end up in the position where it was acted upon. We have asked for it to be removed. How on earth do I find out who put it there?

Firstly, that’s not at all right. Someone can’t unilaterally make that decision and whack it on her file. I would raise hell over that.

Secondly, please consider this carefully. I’m not sure if you have experience with resuscitating the elderly, if not I implore you to talk to people who do. It will be a form of hell for your mother. More likely than not her ribs will be broken and she will suffer considerable injuries from the effort. The elderly don’t tend to recover well at all from this sort of physical insult. This really needs to be weighed up with her present and future quality of life which to be honest doesn’t sound ideal.

My dad had a dnr that was never discussed with me (only child) I was told it’s standard when elderly and have dementia. However he was found collapsed in his flat by his carer at the age of 93 and two paramedics spent over an hour trying to revive him (he did actually die) so his dnr meant nothing in the end.

If she doesn’t have mental capacity do you have power of attorney?

It should have been discussed with your mother/family.

However in law a decision to DNR doesn't actually require consent. There's a good summary here www.leighday.co.uk/LeighDay/media/LeighDay/documents/Guides/DNR-leaflet_final.pdf

Bear in mind a DNR does not mean 'do not treat' it generally means do not attempt CPR. It's extremely important to understand that a DNR is a medial instruction not to attempt a brutal last resort life saving procedures on an elderly body that may have already clinically have passed away, not an instruction to just leave someone's house is still alive to die if they start struggling to breathe etc.

CPR in a hospital setting with qualified medical staff on hand immediately still only has a success rate of between 15-20% and is extremely traumatic on a body, especially an elderly body. The chance of survival is much much lower outside of a hospital setting (e.g in a nursing home) and a doctor can indicate (as it sounds like they have done) that attempting resuscitation would likely be clinically futile and merely just traumatic for everyone involved.

If a family/person felt strongly enough about it that they wanted resuscitation attempted at all costs then the medical staff would probably attempt it, but generally it's felt that in many circumstances for very elderly people it would cause more harm and suffering.

'leave someone who is still alive' that should read rather than house.

Thanks for your responses. We would like to know who put it there and when. Do you know who we should approach to find this out?

We have an EPA for my mum in respect of her finances but not medical/welfare affairs.

As someone who has tried to resuscitate an elderly woman in her 90s I can tell you now that I wouldn’t want it for me or any of my family. I won’t go into specifics but it is not at all nice.

Depending on her age, I suspect it was put on her file by her doctors having assessed her as "not suitable for resusitation". As other have said, this doesn't mean they won't treat her and look after her welfare, quite the opposite in fact. To attempt CPR on an elderly, frail lady, is highly destructive, rarely successful, and even if they bring a person back, they are unlikely to survive long after. It is worth reading up on. The stats are very grim, and medics in general are very uneasy about doing CPR which is not in the best interests of the patient. The most important thing is to read up on it, and discuss it with as many people as you can, including of course the family, but also anyone who is caring for your mum.

It will probably have been agreed by your mother's GP unless she has had more recent hospital appointments with consultants etc.

The care home won't have just decided to whack it on themselves (or at least I absolutely hope not!) as it is a medical decision.

Having POA for health and welfare wouldn't make a difference in these circumstances any way.

I'm sorry it's been such a shock for you, it should have been mentioned, but please remember it isn't an instruction not to treat your mum or call an ambulance if she is dying or requires emergency assistance, it's an instruction not to attempt to resuscitate her if she has already died.

I definitely wouldn't want either of my DPs (aged 91 & 94) to go through CPR.
My mum's already got a DNR, my dad's told us he doesn't want resuscitation either.

A DNAR form needs to be signed by the patient/patient's representative and a GP.

Without the signatures it's just a piece of paper.

I can only speak for hospital DNR forms from around 10 - 15 years ago. There were 3 categories:

a) Patient's informed consent.
b) Patient's family consent.
c) Patient's consultant plus A N Other doctor not involved in treatment of the patient currently.

A could be either/or but needed counter signature by the consultant. C was where A & B were not available or were actively denied. Sadly I saw many C's being counter-signed post death. Please remember DNR doesn't mean do not treat, it means don't subject the patient to invasive, painful resuscitation techniques.

I think you should certainly investigate the reasons a DNR has been put in place, particularly if they were during an event that has now rectified itself.

I hope you'll forgive my making some assumptions about your mother and for some of the details below.

The DNR form means that a decision has been made in advance that cardiopulmonary resuscitation (re-starting your mother's heart if it has stopped) either would not work or would not be in her best interest. It does not mean that any other treatment (transfer to hospital, antibiotics, etc) should be withheld.

When the heart of an elderly person with dementia stops, it is almost never because of a reversible process in the way that sometimes affects a young/healthy person. It is almost always because they have died.

Nevertheless, without a DNR form, the care home have to dial 999 and the paramedic crew are obliged to begin CPR. A common scenario for us in the Emergency Department is to receive a frail elderly person that was found to be dead when offered breakfast in the morning but - in many cases - died peacefully hours before.

Despite having been dead for hours, CPR has been started. They are wheeled into hospital by strangers, naked, with a tube in their airway, a broken sternum, and lots of broken ribs. The hospital team take over from the paramedics - trying to get in needles, taking blood from groins, etc. A senior doctor finally gets a chance to appraise the situation (frail, elderly, medical problems, dementia, care home) and makes the decision (with other members of the team) that should have been made long ago, i.e. that continuing CPR is either futile or not in that patient's best interest.

Occasionally (e.g. if the patient only died recently) we briefly get their heart started again with drugs and shocks. They sometimes become conscious enough to understand where they are (in a frightening resus bay with an artificial airway and surrounded by strangers). When their heart - almost inevitably - stops again, they experience dying for a second (and sometimes a third/fourth/fifth/sixth) time until someone that's experienced/mature enough finally says "stop". The survival to discharge rate for these patients is very close to zero.

In the best case scenario (the team make an early decision to "stop"), the dead patient's body has been put through a horribly undignifying process. In the worst case scenario (brief return of heart function), the elderly person has been denied the opportunity to die "peacefully in their own bed", which is what most people truly want when asked.

As to whether or not you should have been informed as your mother cannot make decisions for herself, strictly speaking this isn't required if the decision has been made because CPR wouldn't "work". This is because it is a clinical decision in the same way that doctors don't offer any other treatment that won't work to patients. If the decision was made because CPR would not be in her best interests, there is an obligation on the person completing the form to consult those involved in her care, i.e. close family in most cases.

In reality, it is good practice to discuss the decision with family regardless of the reason if only to answer questions and clarify what exactly it means. I've always found that family members respond well to this conversation and this courtesy appears to have been overlooked this time. Just to be clear, even when there is a duty to consult, it is not a matter of seeking agreement from family members - it is still a clinical decision as to whether or not CPR would be appropriate.

I will also say that a lot of doctors do not complete these forms anymore because the law keeps changing and they are a common source of complaints. This is very bad for patients. Yes, this should have been discussed with you but it sounds as if your mother has - at some point - crossed paths with a kind and conscientious doctor that is trying to do the best for your mother, even if that's not how it appears initially. This decision is always best made in advance by someone who's met your mother and thought about the issues rather than a doctor working in A&E at 4am.

By all means explore the reasoning further with whoever is responsible for her medical care (likely her GP even if the form was completed by a hospital doctor) and you should be able to get all the answers you need.

Sorry once again for the gruesome details and the long post(s)!

Thank you johnhunter for such an informative post

Agree with everything JohnHunter said. Op what is it about this decision that has upset you so much? Is it the actual decision itself? Or the fact that you would liked to have been informed?

OP, just ask anyone. Any person in charge would be able to find the form the date and who signed it.

It should have been discussed with her closest family members if she cannot discuss it herself.

However, as others have said, please think seriously about it. If she is living in a care home with dementia then very likely she would not survive a resuscitation attempt. It is then a medical decision, not a family one. You should have been told about it, but it is not your decision to make.

The process of attempting resuscitate elderly people who clearly will not survive it is horrific for all involved, most especially the elderly person who if the do survive it may only survive a few days with severe brain damage, broken ribs and in a state they would never have wanted.

I can understand why you feel upset if you werent involved in the decision making, you could ask to speak to her GP who can explain her condition, future care and the decision not to resuscitate and what chance she would have of surviving a cardiac arrest, especially in a carehome setting. I expect the form will be in her carehome records, they will be able to see who signed it, why and when.

Thanks to all for their input. I’ve spoken to the court of protection and will also see if my mums GP will speak to us and then my siblings and I will take it from there. I’m not going to be returning to this thread because I am finding everything very distressing but I do thank everyone for their posts.

It's true that the harsh interventionist nature of recuss can be pointless when it gets past a certain point. That said, this is the justification wheeled out to relatives who object to DNR. It's not wrong, but I am mystified why info about this is not routinely put up in hospital noticeboards seeing as it sounds so eminently reasonable and would save a lot of discussion at stressful times.

Some years ago I got an urgent call from the hospital saying could I come out to my mother, her BP had dropped to 40/20 and they feared for her. I thought this was the normal thing to do, for me to be there for her last moments - turned out it was more because she wasn't DNR and they needed to strongarm me into agreeing. Now, I did agree because of the reasons above cited. That said, now I do wonder if she had been labelled DNR whether they would have even called me, or would they have just called in after she died? I arrived at Epsom General Hospital and made her case for her - it bought her another three and a half years. She was still made DNR on the night, but they did everything they could to pull her around, and succeeded.

Nobody from care home or Surrey Council held responsible for her near death, of course. Nobody ever would be. Harold Shipman was in the wrong game.

Last year, we had a (different) care home manager pitch up one day before my mother was due to leave hospital, angling to hitch up the care home fees. We resisted this, as we were doing all the work and fees were already sky high. She pressed to have my mother made DNR. Thinking of all the above, we approved this, but I saw this vile woman register a flicker of satisfaction at having this bauble to go away with, at least. Like many things in adult social care, DNR can mean whatever they want, so maybe it's best have a phone number on her medical file so they can contact you and consult depending on the situation.