Family Experiences of Vegetative and Minimally Conscious States
Resuscitation and DNR
What is resuscitation? Resuscitation is shorthand for Cardio-Pulmonary Resuscitation [CPR] - this involves compressing the patient's chest in order to pump blood through the heart and brain if the patient’s heart stops.
What is a ‘DNAR’? If a patient is not for cardio-pulmonary resuscitation this is recorded on their medical records as: DNR, DNAR, or DNACPR. (‘Do Not Resuscitate’, ‘Do not Attempt Resuscitation’, or ‘Do Not Attempt Cardio-Pulmonary Resuscitation’ - these all mean the same thing). The DNAR notice only means ‘Do Not Attempt’ cardio-pulmonary resuscitation. It does not mean that other interventions will not be attempted or continued, and it does not mean that the patient should be treated with any less care.
Why might a DNAR notice be considered? A DNAR may be placed on the patient’s records if the patient would not have wanted such intervention (e.g. some people have said that if they were severely brain injured they would prefer to be ‘let go’). Alternatively, sometimes doctors judge CPR to be futile or burdensome. Survival rates are not good after CPR: overall only around 10% of patients who receive CPR survive long enough to be discharged from hospital after a cardiac arrest and in many cases the person is likely to have further brain injuries. Clinicians do not have to offer CPR if they think it would be burdensome or futile, but they should discuss the issue with the family – e.g. to try to assess what the patient’s attitude might have been.
Family members we spoke to often had strong reactions to the whole question of DNAR. When we first met Fern she was outraged that clinicians thought her partner might not be ‘worth’ resuscitating and that DNAR had been placed on his records without her knowledge. Daisy similarly initially resisted DNAR for her brother and was furious that it had been suggested. But later she, and the whole family, took a different view.
‘We realised that we didn’t think he would want to be resuscitated. We had been asked that question previously and said “yes” [resuscitate]. At the very beginning’.
[Interviewer: So what had changed? Where are we now….?]
‘Uhm about two years [later]. And I suppose seeing his experience and seeing other people’s experience …. I think life and death had different meanings for us then.’
Other families, where the issue had been discussed, accepted DNAR, but still found it very upsetting. David said: ‘that was when my dad broke down outside the hospital, because basically things were hitting home then, that she ain’t coming home.’
Most accepted a DNAR because they thought that it accorded with their relative’s own wishes and they thought resuscitation would do more harm than good.
Even in the same practice. I mean, in hindsight, when I think about when the consultants turned round and said to me, with no discussion with me at all, we would not – if the only course of action we could take was to resuscitate Amber, we won't do it. And I thought, is this the difference between another doctor saying, well, we would resuscitate and keep her alive, irrespective, and another one having – they might be swayed by this term quality of life, because as I turn round and say, at the end of the day, it is that person's quality of life which must be the deciding factor. When do they say, as far as they're concerned, enough is enough.
So you thought another doctor might not have made that decision?
Yes.
And did that mean you were unhappy with the decision or wanted to challenge it?
No, I didn’t challenge it, because I knew that's what Amber wanted.
From our discussion, I knew that Amber, if the only course of action was to resuscitate her, Amber didn’t want it done. And it made – I mean, when the consultant told me, as I turned round and said, that is Amber's wishes. I didn’t have to make the decision. I knew Amber – if that was the only course of Amber which could take place, Amber didn’t want to…
What – do you know what ceilings of care there are? Like if his heart stops, does he have a DNR?
Mark: There’s a – he’s had a DNR notice since he left London, which we’re aware of, was discussed with us. And he did have a cardiac arrest in the middle of this – between the two—
Hmm.
Mark: Was it after his second craniotomy?
Helen: After his second I think.
Mark: Yeah, he had a cardiac arrest and they – he was resuscitated at that point. But at that point they said, “Well, you know, every – if this happens again, then that is just going to increase damage to his brain and everything else.” And I’ve read up on it a bit more since then, I didn’t know, they could have been telling me anything at that point. But – and I don’t disagree with that at all.
Because the only decision you can make is benchmarked against where he is now. So, you know, I can accept the DNR thing because that doesn’t make sense really, because he’s – that’s certainly not going to improve his position if he gets to the stage where he needs, needs resuscitation. And I know from reading up on it that, you know, if I discovered things that said, well, you know, you can resuscitate people and they’re perfectly untouched in any other respect at all, then I might be arguing the point. But I know that’s not the case because of – because, you know, I’ve looked into it. So that does seem like a rational, reasonable decision to make. And it wouldn’t be in his interest to do that at this moment in time.
Some people thought that a DNAR notice did not go far enough, and were concerned about on-going treatments.
Gunars: After a six- first six week period, we had a meeting with the consultant. And at that point, the most difficult thing that, my sister’s husband probably had to do in his life was to sign a Do Not Resuscitate form. And instantly you think, and that includes, the non-administration of any type of drug. But it doesn’t. It only means that when the person goes into a cardiac arrest situation they will not resuscitate. Meanwhile, they are still providing, in my sister’s case, some ten different drugs to keep her comfortable. And basically there’s too much intervention, right from the start and basically, we’re sustaining life artificially rather than through, natural means.
Margaret: And there was one significant point, when she contracted—
Gunars: Pneumonia.
Margaret: Pneumonia. And we assumed then that things were going to take their course. But they didn’t. Now we don’t know for a fact, but we think at that stage that she was given antibiotics.
Gunars: She was given that, she was given antibiotics.
Margaret: I think they found that afterwards, and we understand that she was treated quite regularly for all sorts of infections and so on. And one of the specialists who saw her when we were reaching the conclusion, did say- raise questions about the drug regime.
Gunars: And the other thing with Do Not Resuscitate instructions, is that one mustn’t make an assumption that when, as in my sister’s case, she we went from a Hospital Trust to the local Primary Care’s Trust responsibilities, that the Do Not Resuscitate notes go from one to the other. And in our case, it didn’t. So that meant that the Primary Care Trust situation that- in which she was in the care and community situation, that they were actually treating her and they would've actually resuscitated her if she had a cardiac arrest. So one important thing is to make sure that all the medical notes go with the patient and don’t make an assumption that it does.
Margaret: And that the family’s wishes are reiterated each time—
Gunars: Time.
Margaret: Anyone is moved.
Although DNAR is the subject of a great deal of discussion and anxiety, in fact patients in a vegetative or minimally conscious state are not particularly vulnerable to cardiac arrest – at least not after the initial injury period in intensive care and any initial major operations.
We only interviewed one person where the issue of DNAR had become relevant in the long term. Fern's partner had a cardiac arrest after DNAR had been placed on his records, but after Fern had successfully campaigned for it to be removed, and so he was resuscitated.
After that second cardiac arrest, there was barely anything ever again. I never have ever established a concrete form of communication. There had been times when I think he closed his eyes once as an acknowledgement and it did become more recognised that he did do that sometimes, but it wasn’t consistent and I – there were times over the last year where I’ve sat and I’ve said, “Did I make the right choice?” We resuscitated him because we thought, no he’s got to have a fighter’s chance, how dare you give him a DNR. But actually the brain damage he sustained the second time has been catastrophic. Absolutely catastrophic. He’s never moved any of his body willingly. I mean you could say a twitch perhaps, but how would we ever know that it wasn’t – you know, he’s had so many spasms. How would – I could never know if he’s ever tried to communicate with me, ever. Because there’s never been anything concrete. I don’t believe that he had any outward signs. And I do regret that, you know, well no I don’t, I don’t regret it. At the time I made a choice for him that I felt was right at that time.
But I now know I could never put another one on him and should I be in a situation with anybody else I care about, probably wouldn’t do it. Even my own, own daughter. I could say that, if she was ever in that situation, which god forbid I hope she’s not, or whatever’s up there, you know. But I just couldn’t do it to another human being what I feel like we’ve done to him.
Don’t get me wrong, at the same time I don’t blame us either. You know, we made every decision at the time that I felt was right for him and I don’t regret a single one. And I moved with him as I felt his spirit was. Do you know like, if I felt he was in a fighter’s spirit I fought with him and if I felt he needed to – we needed to step back, I did that too. I have always gone at the pace I felt he deserved.
But having seen the damage of not taking off a DNR, or removing the DNR… I think they were right to put it on him. I can’t regret it, what can I do now, we did it. But I definitely – should I repeat this over again in some weird parallel universe I would not remove it, I would let him die on that second cardiac arrest.
Last reviewed December 2017.
Last updated December 2017.
What is a ‘DNAR’? If a patient is not for cardio-pulmonary resuscitation this is recorded on their medical records as: DNR, DNAR, or DNACPR. (‘Do Not Resuscitate’, ‘Do not Attempt Resuscitation’, or ‘Do Not Attempt Cardio-Pulmonary Resuscitation’ - these all mean the same thing). The DNAR notice only means ‘Do Not Attempt’ cardio-pulmonary resuscitation. It does not mean that other interventions will not be attempted or continued, and it does not mean that the patient should be treated with any less care.
Why might a DNAR notice be considered? A DNAR may be placed on the patient’s records if the patient would not have wanted such intervention (e.g. some people have said that if they were severely brain injured they would prefer to be ‘let go’). Alternatively, sometimes doctors judge CPR to be futile or burdensome. Survival rates are not good after CPR: overall only around 10% of patients who receive CPR survive long enough to be discharged from hospital after a cardiac arrest and in many cases the person is likely to have further brain injuries. Clinicians do not have to offer CPR if they think it would be burdensome or futile, but they should discuss the issue with the family – e.g. to try to assess what the patient’s attitude might have been.
Family members we spoke to often had strong reactions to the whole question of DNAR. When we first met Fern she was outraged that clinicians thought her partner might not be ‘worth’ resuscitating and that DNAR had been placed on his records without her knowledge. Daisy similarly initially resisted DNAR for her brother and was furious that it had been suggested. But later she, and the whole family, took a different view.
‘We realised that we didn’t think he would want to be resuscitated. We had been asked that question previously and said “yes” [resuscitate]. At the very beginning’.
[Interviewer: So what had changed? Where are we now….?]
‘Uhm about two years [later]. And I suppose seeing his experience and seeing other people’s experience …. I think life and death had different meanings for us then.’
Other families, where the issue had been discussed, accepted DNAR, but still found it very upsetting. David said: ‘that was when my dad broke down outside the hospital, because basically things were hitting home then, that she ain’t coming home.’
Most accepted a DNAR because they thought that it accorded with their relative’s own wishes and they thought resuscitation would do more harm than good.
Nik’s father had discussed his views with her, and she said it was relatively ‘easy’ to accept the DNAR notice.
Text only
Read below
Nik’s father had discussed his views with her, and she said it was relatively ‘easy’ to accept the DNAR notice.
Sex: Female
HIDE TEXT
PRINT TRANSCRIPT
That was when he first went into the care home, just that if it ever came to it, you know, where something happened that, would I want him to be resuscitated, to be – you know, to be brought back or – well, no, that – that was quite, – that was quite an easy question not to bring him – if he was ever and they had the chance to, I know it's awful to – to go, I wouldn't want to bring him back to that again. So that was an easy question really, and the – the whole family agreed with that.
I know there's probably people that feel differently because they can't deal with letting them – their loved ones go. But for me, because I knew how he was – his views on this kind of thing before were so strong after his stroke that he didn't want to be alive if he couldn't do things for himself. So I – but there's other people in different positions and their family members would have said different. So you can understand both.
Yeah, but you can only speak for your father.
Yeah, yeah. So that was easy for me.
Jim’s wife, Amber, had always said she would not want to be resuscitated so he was happy to go along with the consultant’s decision to put DNAR on her records.
Jim’s wife, Amber, had always said she would not want to be resuscitated so he was happy to go along with the consultant’s decision to put DNAR on her records.
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
So you thought another doctor might not have made that decision?
Yes.
And did that mean you were unhappy with the decision or wanted to challenge it?
No, I didn’t challenge it, because I knew that's what Amber wanted.
From our discussion, I knew that Amber, if the only course of action was to resuscitate her, Amber didn’t want it done. And it made – I mean, when the consultant told me, as I turned round and said, that is Amber's wishes. I didn’t have to make the decision. I knew Amber – if that was the only course of Amber which could take place, Amber didn’t want to…
Mark accepts the DNAR notice is right for his brother.
Mark accepts the DNAR notice is right for his brother.
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
Mark: There’s a – he’s had a DNR notice since he left London, which we’re aware of, was discussed with us. And he did have a cardiac arrest in the middle of this – between the two—
Hmm.
Mark: Was it after his second craniotomy?
Helen: After his second I think.
Mark: Yeah, he had a cardiac arrest and they – he was resuscitated at that point. But at that point they said, “Well, you know, every – if this happens again, then that is just going to increase damage to his brain and everything else.” And I’ve read up on it a bit more since then, I didn’t know, they could have been telling me anything at that point. But – and I don’t disagree with that at all.
Because the only decision you can make is benchmarked against where he is now. So, you know, I can accept the DNR thing because that doesn’t make sense really, because he’s – that’s certainly not going to improve his position if he gets to the stage where he needs, needs resuscitation. And I know from reading up on it that, you know, if I discovered things that said, well, you know, you can resuscitate people and they’re perfectly untouched in any other respect at all, then I might be arguing the point. But I know that’s not the case because of – because, you know, I’ve looked into it. So that does seem like a rational, reasonable decision to make. And it wouldn’t be in his interest to do that at this moment in time.
Gunars did not realise that the health care team would continue with other life-prolonging interventions after DNAR had been agreed.
Gunars did not realise that the health care team would continue with other life-prolonging interventions after DNAR had been agreed.
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
Margaret: And there was one significant point, when she contracted—
Gunars: Pneumonia.
Margaret: Pneumonia. And we assumed then that things were going to take their course. But they didn’t. Now we don’t know for a fact, but we think at that stage that she was given antibiotics.
Gunars: She was given that, she was given antibiotics.
Margaret: I think they found that afterwards, and we understand that she was treated quite regularly for all sorts of infections and so on. And one of the specialists who saw her when we were reaching the conclusion, did say- raise questions about the drug regime.
Gunars: And the other thing with Do Not Resuscitate instructions, is that one mustn’t make an assumption that when, as in my sister’s case, she we went from a Hospital Trust to the local Primary Care’s Trust responsibilities, that the Do Not Resuscitate notes go from one to the other. And in our case, it didn’t. So that meant that the Primary Care Trust situation that- in which she was in the care and community situation, that they were actually treating her and they would've actually resuscitated her if she had a cardiac arrest. So one important thing is to make sure that all the medical notes go with the patient and don’t make an assumption that it does.
Margaret: And that the family’s wishes are reiterated each time—
Gunars: Time.
Margaret: Anyone is moved.
We only interviewed one person where the issue of DNAR had become relevant in the long term. Fern's partner had a cardiac arrest after DNAR had been placed on his records, but after Fern had successfully campaigned for it to be removed, and so he was resuscitated.
In her second interview Fern reflected on the decision to remove DNAR from her partner’s records, and the consequences this had.
In her second interview Fern reflected on the decision to remove DNAR from her partner’s records, and the consequences this had.
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
But I now know I could never put another one on him and should I be in a situation with anybody else I care about, probably wouldn’t do it. Even my own, own daughter. I could say that, if she was ever in that situation, which god forbid I hope she’s not, or whatever’s up there, you know. But I just couldn’t do it to another human being what I feel like we’ve done to him.
Don’t get me wrong, at the same time I don’t blame us either. You know, we made every decision at the time that I felt was right for him and I don’t regret a single one. And I moved with him as I felt his spirit was. Do you know like, if I felt he was in a fighter’s spirit I fought with him and if I felt he needed to – we needed to step back, I did that too. I have always gone at the pace I felt he deserved.
But having seen the damage of not taking off a DNR, or removing the DNR… I think they were right to put it on him. I can’t regret it, what can I do now, we did it. But I definitely – should I repeat this over again in some weird parallel universe I would not remove it, I would let him die on that second cardiac arrest.
Last reviewed December 2017.
Last updated December 2017.
donate