Why am I vexed when I wake up to the news that 40,000 dying people have DNACPR orders ‘imposed’ on them without their direct agreement or discussion with their relatives?
It sounds reasonable, doesn’t it, to expect 100% compliance with the expectation that DNACPR be discussed openly, especially after the Janet Tracey judgment which ruled that not to do so was a violation of human rights.
I hadn’t read the Royal College of Physician’s 100 page audit from which this story was extracted, but I have looked at it now, and it doesn’t mention 40,000 patients. 9302 deaths were audited, so the headline figure was an extrapolation, made real in newsprint. OK, so it may be fair to extrapolate. But what did the audit actually show?
Like all audits, it was a paper exercise. If a discussion wasn’t documented it was assumed that it hadn’t happened. The chair did say, when interviewed, that ‘busy doctors’ might not have had time to make notes, but that excuse doesn’t hold up – especially not in court. All trainees know that.
Focussing only on the DNACPR decisions (just one section of the audit), it appears that they were discussed with 35% of the patients. The reasons given for not discussing are all reasonable (unconscious, lack of mental capacity, a request that it not be shared with family), but in a worrying 16% no reason was given (961 cases). Were these documentary omissions, or medical teams making unilateral decisions and not being bothered to get the views of their patients? Well, I know what I think, but I suppose we cannot blame for Telegraph and other commentators for at least highlighting the finding. One way of making this more eye-catching is to extrapolate to 40,000 across the nation and visualise whole cohorts of frail patients being ‘written off’ with little thought.
So, if doctors couldn’t discuss it with patients, did they contact the families? The question asked was; ‘Is there documented evidence that the cardiopulmonary resuscitation (CPR) decision by a senior doctor was discussed with the nominated person(s) important to the patient during the last episode of care?’
- YES 78%
- NO 18%
- ‘NO BUT’ 4%
If ‘NO BUT’, it was recorded that ‘There was no nominated person important to the patient’ in 47% and ‘Attempts were made to contact the nominated person important to the patient but were unsuccessful’ in 53%
This still means that in 18% of cases DNACPR was not discussed with relatives and no decent reason was given. I am a bit confused about whether these 18% include any of the patients with whom DNACPR was discussed directly. If so, there is less of a problem, as the primary responsibility of the medical team is to communicate with the patient if that is possible. The kind and thoughtful team will of course discuss it with the family (or at least let them know), but if the doctor-patient discussion has been documented there is less of a ‘legal imperative’ to document wider discussions. It is good practise, these discussions are important, but they may not bring a doctor to sit down with the notes and scribe a separate report.
Reading the audit, which covers many other areas, I realised that much of my annoyance at the media coverage was because it had honed in on DNACPR as the most important, almost sacred, aspect of EOL care. It isn’t. DNACPR documentation is there to stop a patient being treated inappropriately after natural death. It imposes nothing. It is absolutely necessary if expected death is not to be undignified by unfamiliar hands working to a universal protocol. Yet, for all the other measures of quality that this large audit investigated, it was the only one to hit the front page. This appears to be driven by a continuing lack of trust in some quarters that doctors on the wards are making decisions for the right reasons.
The word in the Telegraph headline that got me was ‘secret’. This is loaded with maleficence and illustrates the depth of misunderstanding. DNACPR is a decision taken when death is expected or it is clear that the heart could not be restarted if it were to stop suddenly, but it is not a decision that materially influences the length of life. It does not in itself influence survival, because it concerns a posthumous act.
This is why I find it difficult and artificial to finish an otherwise transparent, comprehensive and satisfactory EOL discussion with the phrase, ‘And when she does die, when her heart stops, we would not want to try to resuscitate her. I mean, I will put a form in her notes to make it clear that the crash team should not be called should it happen in the middle of the night, when we aren’t here… a DNR form. You’ve heard of those?’
How many times have I seen confusion on the faces of my patients’ relatives at this point? After twenty minutes of careful scene-setting and descriptions of how the palliative care team might offer further support, I bring up cardio-pulmonary resuscitation. Why? It’s not relevant to the situation. It’s not relevant to the dying patient. But it must be discussed. And I must be clear. If I do not set aside a few minutes to discuss DNACPR specifically, however much I have dwelt on the issue of dying, I will be keeping it ‘secret’, even though the patient’s terminal condition is known to all involved.
Although death may have been explored, DNACPR – a denial of death, a commonly futile struggle against natural disease – requires its own time. As you can tell, I find this difficult. Perhaps those who did not document things clearly in the audited notes found it difficult too. Perhaps they didn’t have the confidence to insert DNACPR into the conversation. Perhaps they regarded DNACPR as the least important thing for their patient. (Post-Tracey, that is somewhat naïve.) Or perhaps they thought they knew best and drifted through the ward in paternalistic secrecy – that would, in Professor Ahmedzai’s words, be ‘unforgivable’, but I don’t believe this harsh judgment applies to many.
Whatever the reasons, the message is clear – bring it up, talk about it, even it feels uncomfortable, and document it.