Doctors SHOULDN’T get to “play God” ... AIBU

[MissKittyBeaudelais]

My mum went into hospital as a planned admission, in autumn last year for:-
Medication review
Tests into breathlessness
Physio

Despite admission being arranged by GP, we were told she HAD to go through A&E. She was there around 6 hours and was then placed on a small ward. Whilst in A&E, the Doctor who admitted/examined her talked about end of life and resuscitation. This is standard practice. The Dr. went on and on about what MIGHT occur in the event of resuscitation ie, stroke, fractured bones, brain damage, damage to internal organs etc. My mum insisted that, knowing all this, SHE STILL WANTED TO BE RESUSCITATED. The Dr. continued to push her message and eventually, I asked the Dr. to cease as I felt she was trying to persuade my mum into agreeing to not being resuscitated.

My mum was 79, lived alone, was fully independent and still drove. Her home had two separate staircases and her bedroom was on the top floor. Two days before being admitted, she was shopping in John Lewis for a birthday gift for me and we joked that I hoped it was a suitably expensive and frivolous gift! Remember, she’d gone into hospital for tests. Arranged by her GP. She wasn’t expecting to die. She was put on a ward with MRSA and Norovirus. Ten days later she had got an infection, deteriorated and died.

We requested the medical/nursing care notes as we were not happy with her care. When they arrived, I was really shocked to read the A&E notes in which the admitting Dr stated that both Mrs X and her Next of Kin (daughter) agreed NOT TO RESUSCITATE. I’m fucking furious. I never said that/signed to that. My mother never said that/signed to that. Remember, she was in for tests and physio. She NEVER expected to die. Neither did the family.

AIBU here? Did this Doctor just decide to play God? I remember, when the examination was over, my mum jokingly said “remember Dr, I want anything and everything doing to keep me alive!”

Can a Dr just decide to do this? How does she sleep at night? Ought my Mum/I have been asked to SIGN something to say we agree/disagree?

What would YOU do?

@CoffeeRunner
I think your point was a little misleading. She would have had a cardiac arrest, which would ultimately have ended in her death. The infection might have been one of the causes of that cardiac arrest. You implied she wouldn’t have had a cardiac arrest. That’s how it seemed to me anyway. I’m probably looking at it too much from an ALS pov though.

Don’t want to derail any more so I’ll shut up now.

Please go to PALS OP.

Fair enough if that's how you read it @MGC31. The point I was aiming at was that resuscitation probably wouldn't have been an appropriate thing to attempt in this case.

Obviously we don't know everything about it, but it sounds that way.

I work in a hospital ward where every patient has a TEP which states whether to resus or not and one of the stated reasons for being 'FOR' is that it is patients preference, the doctor can advise if it is unlikely to be successful for any reason but if the patient has capacity the Dr cannot ride roughshod over their choice. If the patient does not have capacity the Dr will have a 'best interests' conversation with the family and if they decide dnar they have to record why and what would be appropriate escalation of treatment if any.
So I would say speak to pals and ask to have the notes reviewed with you, especially asking to see the paperwork corresponding to the dnar decision as the Dr should have made a record of when the conversation took place and what the reasons for it were.

@Octopuscrazy. Thank you for your reply. How could this Dr. have made a DNR decision when my mum was a planned admit for tests/physio? She wasn’t an emergency admit, in that sense. She did say that the necessity to ask, was for FUTURE admissions or should she deteriorate. Surely, the decision is taken medically AT THAT TIME not when someone’s coming in for planned tests and physio.

I haven’t made myself clear on the DNAR. My mum went into a MAU but got stuck in a ward of 4 patients because within hours of her being admitted, Norovirus and MRSA were found on the ward (not my mum) and it was in shutdown. So, my mum had to stay there. Couldn’t progress onto her medical ward as originally planned. I think, because she’s wasn’t seen as “that I’ll” she was left to her own devices. The nursing notes show this. Many medical investigations were carried out and everything came back NAD. However, she then just went down in less than 24 hours. We were called in and told that she was in organ failure/respiratory failure and care was palliative. AT THAT POINT a lovely Dr told us that she’d be made comfortable and allowed to die. We agreed, obviously. There was NO WAY we’d have wanted resuscitation at this point. My point is, the A&E Dr. wrote a lie. If she’d been admitted in the state she eventually died in, OF COURSE we’d have said DNAR.

Excuse my ignorance but why would anyone able to drive and shop/live independently and seemingly without any major health issues, be admitted to hospital for 10 days no less for some tests into breathlessness, physio and a meds review.

Surely all perfectly capable of being done in outpatients?

IME hospitals tend avoid new non urgent admissions like the plague, so i'd have thought the real question is why was she there in the first place... assuming this was a UK NHS hospital.

No OP-most hospitals are moving to have the conversations when people are comparatively well. It is much easier than when people are imminently dying as the conversation should then be calm and rational not tied in with grief and tiredness and stress. As someone mentioned up thread many hospital operate a TEP form system on admission-this stands for treatment escalation plan and cover resuscitation planning but also things like whether ITU admission would be appropriate. This saved hurried decisions in the middle of the night as much as anything and allows for far far better care. We shouldn’t wait till our patients are in extremis.

Should say when people are NOT imminently dying.

@jasjas1973 usually (in my experience) because the GP has some serious concerns about what may be causing the shortness of breath etc, and want the patient to receive urgent attention.

Referring for an Outpatients appointment takes time.

Does the record say ‘discussed with patient and daughter or agreement sought from mother and daughter’ rather than you agreed.
Your mother could not consent or withhold consent to resuscitation attempts. It is an entirely clinical decision. There should be a discussion- which there was. You don’t have to agree and if you’re mother had capacity you don’t even need to be involved in a discussion. It’s not your decision to make.
The reality is that resuscitation attempts on elderly people are usually futile. In fact, in an acute hospital the success rate for resuscitation is less than 10% and that is generally on younger, healthier people with a reversible condition. Putting someone through resuscitation that isn’t going to work is generally unkind. It might delay dying by a few hours or days but at what cost? To have the person brain injured, with cracked ribs, scared and distressed. I know what I’d rather have; a swift untreated arrest.

@jasjas1973... she’d had lots of tests done as an out patient... nothing diagnosed. The GP said “I feel we’re missing something” and she was admitted.

I'm sorry for your loss OP.

Obviously the A&E notes should have been recorded correctly. I would make a complaint about that.

However from what you describe resuscitation might never have occurred in this case. Resuscitation would only occur if there was a reasonable chance of the patient surviving long term (for example if their heart stops after trauma) if they have multiple organ failure after a serious infection there would be no prospect of survival so the patient would never be resuscitated.

Oh, @MissKittyBeaudelais that's hard to read, so I can't imagine how hard it would have been to go through. Do complain, if you think it will help you. Think carefully about whether it will help you. You need time to grieve and having something like this hanging over you can stall that process.

Sorry op but I think you’re focusing your pain and loss onto something that isn’t really the issue. Yes it’s annoying... but honestly some people really should realise the devastation that CPR on a body can wreak and when people are seriously unwell then we are sometimes far too quick to attempt resuscitation on them when the kinder thing would be to let them die. I am shocked at the patients “for resuscitation” when I see their past medical history and their current health status. I don’t think it should ever be a family choice but a medical one always.

Oh dear...still being misunderstood a little. It’s not the fact that I think she ought to have been resuscitated, it’s that she So CLEARLY stated, when asked if she wanted to be, that YES, she ABSOLUTELY DID! And then, the Dr. wrote the exact opposite.

Keep fighting for answers my mum died unexpectedly in hospital last august and I am still trying to get answers ( the answers they have given make no sense) be prepared for them to try and brush it under the carpet or just not answer the questions you ask . So sorry for you loss under these circumstances

So sorry that is awful what a horrific shock for you all.I work In nhs just admin but the doctors do discuss DNAR but it's a specific form the patient keeps it in a special envelope at home in sight ( eg paramedics can see it) it is scanned and recorded on medical records and the out of hours service is informed. It is regularly reviewed. If the hospital issue it they have to inform the patients GP when they are discharged. I would speak to pals and put in a official complaint about her care and the DNAR as well as what happened to your mum.

Really sorry to hear about your mum OP, must have been a horrible shock. I'm a nurse and this sounds very odd, with going through A&E for a planned admission? Once you are in A&E you are not a planned admission at the hospital where I work, you are an emergency admission, and all emergency admissions are meant to have their resuscitation status discussed.

The decision to attempt to resuscitate using CPR is ultimately down to the patients consultant doctor; the patient and their family should be consulted but it's ultimately the consultant's medical decision. HOWEVER, they shouldn't have lied in the notes to say that you and your mum were on board. They should have explained that in your mums case hands on CPR would have a very low chance of success, very high chance of causing pain, broken ribs, pneumonia, brain damage, and that they wouldn't do it. They should have explained that they would use all other means of treatments, IV antibiotics, fluids, oxygen etc, but just not hands on cardiopulmonary resuscitation.

Did you see a purple RESPECT from in her notes? This is the fairly new version of the 'do not attempt cardiopulmonary resuscitation' form, I think most hospitals in the UK use them now.

Also, should add. My dad died 15 yrs ago. In his life he’d had 3 x CABG (as in three surgeries, years apart), he had lung cancer and had ceased treatment as it was ineffective. He went into hospital with a pleural effusion and had a drain in situ. He got an infection at the drain site and went back into hospital for IV antibiotics and arrested AND THEY TRIED TO RESUSCITATE HIM. It took a long time for our family to get over THAT momentous mistake.

I was a nurse for 26yrs. Staff nurse, Jr sister, Sr sister. I have experience but...I still feel that this A&E Dr. acted wrongfully. All she had to do was say that, patient wishes are taken into account, however, when the time comes, medical staff take a qualified view overall and their decision is ultimately what happens.

If your complaint is solely that your mum and you did not agree and this was recorded incorrectly then PALS is often a good route. I think all people are trying to say is that the decision to enact the dnr was not wrong and that this would be reflected if this was the direction your complaint/approach to the hospital took.

I am so sorry for your loss and you’ve had some good advice here.
You need some answers and I truly hope that you get them.

Suggest you ask for copies of the notes and then you can see the initial clerking and who exactly that was and their seniority. Then you can complain specifically.

Thank you all for your replies. Very helpful and thoughtful.

I think you’re correct. I’m still reeling. I was the only one with her as she actually took her last breath and it has floored me.

I would speak to PALS, as at least the notes should have been completely factually correct but it's up to you whether to go further than that as to whether it prolongs your grief or gives you closure.

I lost my dad in his thirties to a genetic condition which is pretty rare and unfortunately, I learned a few years after my family got his medical records and someone else in the family developed a heart condition. That the reason they didn't try to resuscitate him when he got rushed back into hospital because he asked them not to tell any of us because I don't think he could bear with me knowing that i could have a potential death sentence too.

It was only when my family asked whether there could be anything to worry about me that we found out the whole story, not the notes so I do get where you are coming from about being upset about not having the full story from the professionals.

OP I would also find out about the reasoning behind the hospital admission

A pp said it must have been necessary. I think that’s a big leap to make.

Apart from my parents, I’ve seen a lot of this amongst their friends - unnecessary admission to avoid being sued usually. Plus admission via A&E - was that because of a long wait?

Mum refused to even let us call an ambulance during her last two attacks of AF because we’ve seen a hospital stay doesn’t help and actually harms her health. a friend of hers refused admission for pneumonia, though she was told she need IV antibiotics. she said “I’d rather die at home than in there”. She took oral antibiotics, stayed home and recovered well.

It does seem very odd that a DNR was set, in advance, not just for someone who didn’t want it, but was well enough to live independently.

OP “ I was the only one with her as she actually took her last breath and it has floored me.”

Of course, it’s such a horrendous time, feel free to DM if it helps.

Sorry if I missed you mentioning it but you know there’s a Bereavement topic, in case that helps you.