Must share our experience in case it happens to you - sorry long!

[dottee]

In March, my mum (aged 78) got severe chest pains and phoned 999.

She was admitted via ambulance onto A & E where it was found, through various tests including an 'echo', she had fluid around her heart.

I live just over 40 miles away and by the time I got to the hospital, she was in 'resuc' with lots of wires attached to her and a ventilator in her mouth. She'd been admitted at around 6.30pm and it was around 9.30pm when I got there.

On arrival, I saw my dd's Godmother who is now a nurse on the unit and had been looking after mum. My friend was able to tell me more - she said my mum had arrested shortly after arrival and it had taken 10 minutes to bring her back. But she was stable when arrived although still quite poorly. The A & E team tried to access the CT Scan but the powers that be wouldn't not authorise the facility to be opened that night. My friend said the team had argued for an hour and half to use it but to no avail. My friend said the team were at their wits end but couldn't do anything more because facilities were not available. It was then decided that mum should be transferred to the Emergency Assessment Unit overnight.

When I arrived with mum, the nurse allocated to her told me a 'DNR form (do not resuscitate)' had been placed on mum's notes, meaning, if she arrested again, nothing would be done. It was another decision by the powers that be and I hadn't been consulted.

Mum improved. She was diagnosed as having a split aorta. After five weeks of hospital and rehabiliation, she is now living independantly again in her own home. She is driving (with her GP's blessing) and going about her everyday business. When she was well enough, I told her about the DNR form and she has queried this via PALs. The PALs lady queried on mum's behalf with the A & E people and it is standard procedure for the consultant on call to have the say whether a DNR form is to be in place, even without seeing the patient in person. Mum told her own GP about this yesterday and even he was taken aback.

This has been bothering me ever since the night mum was taken in and the more we go into it, the more it concerns us. Mum has been assured now (by PALs) that the form has now been taken off her notes. Dd's Godmum didn't tell me about it, but when I asked her specifically whilst chatting a few days later, she confirmed what had happened. She must have been in a very awkward position that night. Thank you for letting me share it with you.

Yes, it's harsh what flum says, but it is also true. Sometimes, living with the consequences of resusitation can be absolutely dvastating. That said, I don't believe that it is the doctor's right to decide on a DNR without any consultation - at the very least with the family, if not with the patient themselves. Ridiculous that it is very difficult for a patient to request DNR for themselves, but so easy for someone else to decide when they have minimal knowledge of the patient's life and capabilities.

Thankyou, dottee, for sharing this with us. It never occurred to me that a DNR might get left on someone's file after the even - definitely someting for those of us with elderly parents/grands to keep an eye open for. Hope your mum's OK now.

Wonder what you'll think when you're that age Flum?

yeah, it's a digression from Dottees post, apologies Dottee. It does seem wierd that it would stay on the patients file, if they had done a Living Will themselves.

I know, lots of people disagree. It is just an 'objective', 'cold blooded' if you like opinion. It doesn't make me happy, it makes me

I guess, just to defend Flum a little, euthanasia is just letting nature take its course. Sometimes we intervene and then we just prolong the suffering for that person. Of course everyone should be given the chance to live, it is a basic human right, but others just want to be left to die a dignified death, as nature would have intended. It is a fine line and I for one would not like to have been in that consultants shoes. You can bet that there will have been days that he has allowed a patient to be resusitated, only for the family to criticise him for prolonging that persons suffering. It is one argument that you simply cannot win.
On that night, he may not have had the time to read fully that patient's notes, he probably had another 100 or so people under his care that night, he had to make the best decision he could under difficult and strained circumstances. If, Dottee, your mother had arrested again, it could have affected her brain, it could have left her paralysed, anything like that. The reason she made such a full recovery is just because she did not have another arrest, and she is very fortunate. That doctor has to decide if, at that age, her body could withstand another arrest.

And then at what point do you call it quits? How many times do you resus a patient? It's a tricky subject and I think everyone's opinion on it is valid.

Dottee thanks for sharing your story and glad to hear how well you mum has done. Sadly I think there is a lot of ageism in health policies. However I do feel very strongly that a DNR decision is something that should be made in the cool light of day and consultation between medical staff and family, not in the heat of the moment by one person alone.

I don't disagree with euthanasia, but this decision has to be made when everyone can think straight not when he has so many patients that he can't make a balenced decision.

But Grmum, there might not be time to call together a staff meeting when people are dying. The NHS is overstretched as it is, unfortunately decisions are made on the spot by one person, but I think it is unfair to blame that person, coming from a family where 2 members work in hospitals, they have to make these kinds of decisions every day and it's not something they take very lightly, but they do the best they possibly can.

Dottee - I am very very sorry you have had this jarring experience. If it happened to my mum, I would feel haunted about it too.

There is miles of difference between euthanasia and DNR - when contemplating euthanasia the patients wishes, lifestyle, ablity and independence can all be carefully taken into account, and thought about carefully by patient and family. What happened to Dottee's Mum is simply assigning her to the bin - they had no evidence of a series of debilitating or progressive problems or of prolonged and chronic misery and decline. I'm actually an advocate of much more dignified access to euthanasia, but it is absolutely scurrilous to bring this in on Dottees thread, if you ask me!

I do not agree with Flum or Rhubarb-she wasnt suffering and she wasnt ready to die yet,Thank God! So sorry dottee-you must feel very fortunate this time-lets hope it never happens again.

Yes but they call it euthanasia, it is 'allowing' someone to die. I agree wholeheartedly that these decisions need to be taken with more information to hand, more consultation and that this probably does look like ageism. But whilst they are getting all that info together and calling a staff consulation together, she might have had another arrest, and another. Doctors simply don't have time to start having lengthy consultations. I am not justifying his decision and if it were my mum, of course I'd be horrified too. But it is the government you should blame, who overstretches the NHS and puts our consultants and doctors under enormous pressure. Imagine having to go home and live with your mistakes when those mistakes could result in someone dying? Imagine having the finger of blame pointed at you every day. They are human beings the same as us, they do their best.

I am not (I hope) being unsympathetic to Dottee or her mum, I just feel very much for the doctors caught in the middle.

Another ex NHS worker here too Rhubarb and I agree 100% that most of them are working in very stressful conditions but I just feel that those are not the circumstances under which to make a decision so fundamental. All I am saying is that after a night in the Emergency Assessment unit her progress would have been monitored and a more balenced decision could have been made.

As i understand it, clinical advice would always be - if in doubt, resuscitate, and if there has been no consultation with either the patient or their relatives, then the clinicians SHOULD be in doubt.

I would definitely query their policy with the hospital, and more particularly, with the Royal College of - erm - probably Physicians. Give them a call. I can't believe any consultant actually wants the responsibility of deciding DNR on their own without consultation. Although it's true that as I understand it, resus can be a pretty brutal process.

Glad your mum is so much better dottee and that they did fight for 10 mins to get her back.

And I do not think that either myself or Flum have commented personally about Dottee's mum, we have not said that she was suffering or ready to die. We have drawn up other hypothetical circumstances to try to rationalise a very horrible incident.

With respect to Dottee, and passing on my sympathy, I'll leave this thread so she can concentrate on telling us about how her mum is and what she decides to do next.

So do I Rhubarb, I feel for everyone in these circumstances as there is no 'right' answer. You have worded it far far better than me anyway. I think Doctors get a really tough time and it is going to result in them making decisions that are the best decision to avoid a potential complaint or lawsuit not necessarily the best for the patient or the NHS service.

Please be assured that I'm not screaming at the computer or balling my eyes out.

I have a 13 year dd with SN so I seem to have had a lifetime of dealing with the sometimes inadequacies of the NHS and I'm getting to be a tough old boot myself when it comes to medical matters.

The point that bothers me is that the consultant on call did not assess my mum in person, and did not respond to the pleas of the A & E team to open up the scanner. And had the nurses not spoken up (why did the night nurse feel he had to?), I wouldn't have known. I live in a different county and have spoken to another colleague who is on the healthcare trust where I live. She replied that the issue of the scanner is due to staffing costs in all trusts. But on the night, my dd's Godmum was annoyed because the scanner is opened up in incidents like drunks coming in on a Friday night with head injuries.

It has been mentioned by the people around me about mum paying contributing towards NHS during her working life, which lasted until she was well over 60. I agree that she should be entitled to a decent service (money-wise). But should we think like that. My dd will never work and will cost the tax payer thousands and thousands throughout her life. But that's another thread ...

I'm seeing mum tomorrow and will pass on all your good wishes.

Coming late to this, Dottee, but I was so to read what had happened with your mum. I used to think the NHS was okay, despite everyone's moans and groans, but I've recently heard some terrible, terrible stories that make me think it's going down the swannee rapidly. I hope your mum continues to improve.

Dottee, so glad your mum has proved the consulatant wrong and that she has managed to get home and be able to enjoy her life.

As someone who has been involved in ressuscitations I want to add my two pence worth if you don't mind! Flum, again, I am completely about your views. People just can't be generalised in such a way. Look where it got Dottee and her DM?

I have seen several times both sides of the story. Patients who need to have DNR forms done in the heat of the moment - it's not ideal but decisions do have to be made quickly. The patient may arrest again, as others have said and have long term debilating consequences, often meaning little or no quality of life. The whole proceedure is as you would probably expect, rushed, rough and undignified. I don't know that I should write this here but it is the truth. The emphasis, rightly, is on emergency, going to all possible lengths to keep the patient alive. It is incredible invasive. Dottee, you will have seen this to some extent when you saw how your mum was when you arrived.

What was wrong here IMO, was that there seems to have been no time limit on the DNR. Where I work, they are only valid for a set period of time. Therefore, it might have been more reasonable to add, 'untill discussed with relatives' - to gain a better understaning of your mother and her lifestyle and needs, or to make it the case for that night only - when she would be reviewed calmly and properly by her own specialist consultant who should have more information and a whole night's worth of data and history on her condition to better make any decision. The fact that this form could remain in her notes after discharge, possibly affecting her future care is very wrong, as is the fact that presumably, as she was recovering, had she arrested, she would still have not been resusitated. The doctors caring for her and if not, the nurses, should have questioned this and had it removed. The system dosen't seem to be working in this hospital to say the least.

On the other hand, and often equally as sad, is patients suffering terminal illness who for whatever reason do not have a DNR, be it because of relatives or their own wishes (living will, usually written prior, when able to express own wishes as often unable to by this stage), that no diagnoses has been found or even just that the doctors have not yet been able to arrange to discuss this with the relatives. We are responsible for ressusitating this patient, even though in effect we will just be prolonging their suffering, and not doing really what we are trained to do.

The CAT scanner is also very bad. If she needed an emergency scan, and her consultant who was caring for her had assessed it as being appropriate it should be opened. Radiographers are on call and paid money for being so for this very reason. Other doctors can not authorise CAT scanning, for the reason that it is an expensive and valuable resource.

Dottee, I really hope you and your mum do continue to complain. I think this hospital needs to rethink it's policies on several fronts badly. I would be asking what the trust is going to do to ensure this does not happen again. I hope your mother continues to recover well. She sounds a star!