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Do Not Resus. Who's decision is it If next of kin want it changing?

(20 Posts)
luckimum Mon 14-Mar-16 19:21:12

Sorry If this is in the wrong topic but I really need some advice ASAP and ill explain why.

My brother who is 38 has been in hospital for 6 weeks now with liver failure. Although the nurses kept telling us that his progress was slow we assumed he was on the road to recovery until 2 weeks ago when the consultant (who we had requested a meeting with the next day) suddenly rang my brothers wife around 8pm to tell her that my brother had 48 hours to live and asked her if she wanted to come and sit with him.

To say we were in shock is an understatement, we didnt think about the circumstances at the time, nor the fact the consultant told us my brother had been told he was facing death whilst he was on his own and no family there.
We simply raced to the hospital to be with him, and for the next 3 days we sat with him, they had withdrawn treatment and basically told us he was going to die. When he was still getting up to use the toilet 3 days later and was seeming more "with it" we did voice concerns but the doctors claimed it wasn't unusual and they it was just a matter of time. My family then held a meeting with the consultant who claimed that my brothers liver had failed and he had a minute chance of survival and even If he did, he would need a liver transplant. With this in mind, and having faith in this medical professional, when my family were asked If they would agree to a Do Not Resuscitate agreement they said they all agreed as it would not be beneficial to bring him back when his chances were so low.

However 2 weeks on, he has made a remarkable recovery up to now, so much so the doctors are treating him again, his blood levels are improving, the jaundice is lifting and he is making slow but steady progress, he has amazed us all. He is walking about and is slowly realising what has been happening. Now he claims at no point did he sign any form (which the consultant said he had) he is adamant that they never told him he had 48 hours to live and even so he should never have been told that news on his own.

Because he has made such progress and admittedly we are very concerned about the conflicting reports from different medics in this hospital, my sister in law has requested he has the DNR removed, she has explained that the circumstances are a lot different now and as he is improving and the doctors are treating him again, they do not want a DNR hanging over him now. But they seem to be fobbing her off. The nurse said she would need to speak to a doctor, she rang the doctor and was told they would ring back, by half past 5 they had all gone home and she was still waiting for a call. She has gone into the hospital this evening and they have again told her that she needs to wait till tomorrow to talk to a consultant. The consultant that was initially treating him is on holiday till 5th April so she is being fobbed off with "come and see a doctor tomorrow".

I am going into the hospital with her in the morning but can anyone tell me If the hospital are correct in stopping her from having the DNR removed? I was under the impression that it was the patients and families decision, unless the patient was terminal in which case there would be no quality of life If resuscitated. Can someone please advice?

MatildaTheCat Mon 14-Mar-16 22:07:16

If his condition has improved the of course this need to be reviewed urgently. Is your SIL his wife? And does he now have capacity to decide for himself? I suggest you out your concerns in writing and ask for an urgent review ie tomorrow. If the DNR is not removed immediately ( or a very convincing argument presented as to why not) make an immediate complaint with PALS.

I suspect you've been fobbed off because you have spoken to doctors attached to a different consultant who would not wish to change anything without their permission which is hardly helpful in this situation.

I guess, however you do need to consider whether his liver damage is so extensive that his prognosis is so poor that resuscitation is only dragging out the inevitable and unlikely to be successful anyway. Not saying this is the case, just looking at another possible view. All needs proper discussion. Sorry, it sounds very difficult. flowers

luckimum Mon 14-Mar-16 23:30:53

Thank you so much for replying. We have a meeting with doctor in the morning, they have told us his liver is repairing so there would be no reason to refusing to remove the DNR.Never been in any situation like this before so appreciate the advice, thank you

luckimum Mon 14-Mar-16 23:33:09

Sorry yes my SIL is his wife and so upset they wont remove the DNR

MatildaTheCat Tue 15-Mar-16 16:40:56

I do hope the meeting went well and there is better news for your brother. If his liver is improving and he becomes stronger would he be suitable for a transplant at a later date? Or perhaps his liver is regenerating and he will recover? Sorry, don't know much about livers but best wishes.

welshweasel Tue 15-Mar-16 16:45:54

Sorry to hear your brother is so unwell, hopefully he will continue to improve.

Ultimately the decision whether or not to resuscitate someone rests with the medical team treating the patient. It's good practice to discuss this with the patient and their family but neither can insist on resuscitation if the medical team think it would be futile. Anyone with capacity can request not to be resuscitated, even if they don't currently have any kind of health problems. This would be documented as an advance directive and can't be overruled by family or the medical team.

It sounds like the DNAR should be reconsidered in your brothers case, I hope you get it sorted.

juneau Tue 15-Mar-16 16:58:06

From my ignorant, lay-person's perspective the whole thing seems rather suspicious. If your DB didn't sign a DNR, why did the consultant say he did? Do they have it on record? If he's miraculously recovered can they explain this? Can you have a second opinion on his condition? Have they scanned him again since his recovery and if not, why not? Is he on the liver transplant list? Why is his consultant incommunicado until April 5th - that's weeks away! Who is handling that consultant's workload while s/he's off and can you speak to them instead?

If I was you I'd start getting very shirty indeed and demanding some answers. It sounds like you're being fobbed off at present.

Wolpertinger Tue 15-Mar-16 17:17:56

I hope your meeting went well. As on your other thread, the decision rests with the medical team, not the patient or family, if there is believed to be no chance of success. It's not unusual for a patient who is very ill or who has been very ill not to remember discussions that were had with them. The forms are signed by doctors only so your brother wouldn't have signed it himself.

Can you ask who it would be best to get regular updates from so you don't end up in this situation again?

PacificDogwod Tue 15-Mar-16 17:31:27

I too hope that your meeting with the consultant went well.

A DNR form is simply there to tell other member of staff of a medical decision to not perform cardiopulmonary resuscitation in case of a patient's heart stopping beating.
It does NOT mean that the patient won't treated with, say, antibiotics, iv fluids, other intensive care measures.

It means no chest compressions/artificial respiration is to be carried out.

The form is to be filled in by the most senior treating doctor, after discussion with the family. IMO the decision whether to not to sign the form should always lie with the treating team; the family/spouse loved ones should never be asked to make this kind of a decision. Personally, I would always take the family's feelings and opinion in to account, but ultimately it is a medical decisions.

I am not talking about your brother because we don't have enough information here to comment on whether or not a DNACPR order is appropriate for him (liver failure has so many possible causes, some of them reversible, some not. The liver is a very forgiving organ until is suffers cirrhosis which is not reversible), but it is good practice to review a DNACPR regularly, particularly when there has been a significant change.

I am glad that your brother seems to be doing better. He sounds like he was very ill indeed and it is entirely likely that he does not remember much of what went on. Liver failure can cause encephalopathy which is a condition when the metabolic products not being broken down by the struggling liver poison the brain and its function. People can be very confused and appear sedated etc. Memory is very affected by it.

As ever, it is all about good communication. Please talk to the treating doctor - the consultant, not a poor overworked, undervalued junior doctor on the shop floor: they are not the ones making decisions or making a treatment plan. I hope that you and your family trust your brother's treating doctors. If not, nothing they say will ring true. And I hope even more that your brother's doctors are good at sitting down and explaining things properly and answering all questions you have.

Sorry to have been so longwinded. I have these conversations rather a lot and there is a lot of misunderstanding about what a DNACPR is. In summary, it allows for a dignified, natural death to occur without a sometimes brutal and in certain circumstances (advanced old age/metastatic cancer/end stage heart failure to name a few) futile CPR attempt causing distress and pain; it does NOT mean active treatment will be withheld or changed.

V best of luck to you all thanks

lougle Tue 15-Mar-16 17:57:32

As PacificDogwood says, DNACPR does not mean 'don't treat'. It is one of a number of 'ceilings of care' that can be applied. In my area (ICU) you could have DNACPR, not for intubation/ventilation, for NIV, not for Filtration, for meteraminol, not for antibiotics, etc., etc.

The decision lies with the medical team treating. Relatives are given careful explanation but they don't have to agree with the decision for it to be valid.

I hope your brother makes a good recovery, in which case the DNACPR will be irrelevant. However, the medical team may decide that it is still the right decision in the event of collapse. What's important is to have a constructive conversation with the team so that you can be reassured that they have your brother's best interests at heart, which I am sure they will.

LaContessaDiPlump Tue 15-Mar-16 18:01:20

I'm sorry, this sounds awful.

Would it be worth getting a video on a phone of your brother, with a newspaper with today's date on, saying: I wish to be resuscitated if I lose consciousness? Ideally in the presence of a nurse or HCP who then can't deny having heard it?

It's unpleasant to think about but otherwise it could end up as your word versus that of others.

whatdoIget Tue 15-Mar-16 18:06:17

I was under the impression that dnar in this country was put in place by the Drs treating the patient? Is it usual for a patient to have to sign anything? Sounds weird to me. Glad your brother's getting better though.

Wolpertinger Tue 15-Mar-16 18:12:00

Please don't go down the video line unless you want relationships with your brother's doctors to break down irretrievably.

Although it may not feel like it right now, they actually want the same thing as you - for him to get well. It also sounds like so far they have been doing an amazing job of achieving that against all the odds.

What they have been less good at is communicating. This is very disappointing but sadly not a huge surprise as sometimes some of the best specialists are good at the technical things but not so good at the talking personally I'm rubbish at the technical side, I like to think I'm good at the talking

What you need now is lots and lots of talking and understanding what is going on, not just about the resus but about why your brother has liver failure, what they expect to happen in the short, medium and long term etc etc. The resus is actually quite a small part of the conversation you need to have about what has happened and what might happen now and making sure you never get into a situation again where he is so ill that he might only have 48 hours but no-one has told you it was that serious.

lougle Tue 15-Mar-16 18:32:06

LaContessa you make it sound as though there is some sort of conspiracy at play. There won't be. The medical team have the right to decide whether it is in the patient's best interests to be treated. They don't need consent from the patient or their relatives to abstain from CPR. It is good practice to involve the patient and relatives (if the patient is happy to be discussed), but ultimately they must make a decision they can justify.

All sorts of factors are considered when making these decisions. They don't issue DNACPR forms on a whim. If there is a reasonable chance of a successful resuscitation with a reasonable quality of life, they would not issue a DNACPR.

There are worse things than death. Truly. It may be hard to imagine, but when you see people (brutally) resuscitated, only to die again minutes or hours later, or resuscitated but then be unable to communicate or process communication, or make any decisions about their care, you realise that there are worse outcomes than death.

Wolpertinger Tue 15-Mar-16 18:37:06

whatdoIget you are correct that in the UK patients do not sign the DNACPR forms.

Some people decide to make Advance Decisions of Refusal of Treatment (sometimes known as Living Wills) which are signed by themselves and often do involve refusing CPR but a standard DNACPR form has a place for 'discussed with patient' but not for 'signed by patient'.

LaContessaDiPlump Tue 15-Mar-16 18:38:18

I don't think it will be any sort of conspiracy, just an unfortunate situation where the patient, family and doctors aren't necessarily able to talk to each other or reliably pass messages along. I sympathise with the challenges facing doctors, but my experiences with NHS care in the past 2 years (mum steadily deteriorating over 3 months on ward) have taught me to make absolutely sure that everyone is on the same page. Unfortunately people seem to be far more careful about proving this if you are obviously taking notes.

lougle Tue 15-Mar-16 18:47:07

I'm sorry about your Mum.

Do you honestly think that videoing a statement with a newspaper for proof of date is a proportionate and reasonable next step?

LaContessaDiPlump Tue 15-Mar-16 19:03:54

I think it would make paranoid and anxious patients feel like they'd exerted some control over the situation, and it's the first thing I and my family would think of to do. Admittedly it probably wouldn't endear me your the medical staff, but I don't think we cared about that when my mum was ill. We'd have done anything to make sure her wishes were taken seriously, and thankfully for the most part they were. If they hadn't been though, I'd have done this in a second.

We'd also have been looking ahead to a lawsuit and making the hospital admit failings, which in turn might improve future outcomes for others.

We're vengeful in our family, come to think of it.

lougle Tue 15-Mar-16 19:50:46

But it isn't a decision to be made by a patient or their family. Legally, the doctor has to act in the best interests of the patient and that includes making a DNACPR decision. It isn't about being taken seriously. Most patients can't forsee the awful consequences of a 'successful' cardiac resuscitation with major disability. They can't imagine it because CPR is presented as a binary action - it's successful or unsuccessful. Sadly, people can have a heart beat restored but be profoundly disabled by the dying process that necessitated CPR.

LaContessaDiPlump Tue 15-Mar-16 21:48:26

I understand your point, lougle. Thank you for explaining.

I'm not being sarky, it is interesting to know.

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