Beyond the implicit

There has been another controversy regarding DNACPR decisions in the press this week. A doctor has been defending her actions at inquest. She wrote a DNACPR certificate after thinking ‘long and hard about it,’ for a patient with end-stage lung disease whom she knew well. After an abortive resuscitation attempt the certificate was found by family members who then complained that doctors had ‘played God’ and deprived him of a chance to extend his life. Even an extra week would have been precious to him, in their opinion. Today, the coroner found that the DNACPR order did not contribute to his death.

Once again the realities of resuscitation in end stage disease are being discussed, and the exceptional nature with which this frequently ineffective treatment is regarded has been emphasised. The fact is – from what we can gather – the decision to allow natural death rather than attempt resuscitation was not discussed explicitly with the patient or the family. These events pre-dated the Janet Tracey judgment and the hospital’s revised resuscitation guidelines, which incorporated the judgment. Under that judgment, such an omission represents an illegal violation of Article 8 of the European Convention on Human Rights.

Not all the details of this case are known to us, but it appears that the doctor had an open discussion with the patient regarding his prognosis, his mortality, and the lack of any other available treatment options. She then risked opprobrium by completing a DNACPR notice without engaging the patient on the subject. It is reported that she feared this conversation would cause additional distress. The judges in the Tracey case were very clear on this – fear of causing distress is not sufficient reason to avoid a DNACPR discussion. Therefore, cast in the light of the Tracey judgment, we have a paradox: a doctor who seems to have known and understood her patient, a patient who seems to have known and understood his the terminal nature of his condition… yet, within that therapeutic relationship, a possible deprivation of human rights.

I worry greatly about how we are to work through this.

Whenever I speak with a patient who has terminal disease I must consider their resuscitation status, especially if they have come into hospital with worsening symptoms. If I don’t consider it I have abdicated an important duty.  However, the focus of our discussion is what we can do to make them feel better and improve their quality of life, not what we can’t or don’t want to do. We discuss death openly, and perhaps, if pressed, I may even suggest a timeframe. We talk about how death will be managed, whether here in the hospital or at home. The palliative care team will do the same. Death is expected. Death is not far away. There may be tears – more often from the family than the already cognizant patient. We formulate a plan. And then…

‘There’s something else we need to discuss – the subject of resuscitation. If, when, the end comes and your heart stops we should have something in your notes to say that the crash team should not be called. As you probably know we often put out an emergency call and try to restart the heart with compressions and electric shocks. After everything we have been saying, about how to help you as you get weaker, I definitely don’t think we should do that…’

The reactions? They have varied from bewilderment (why am I talking about electric shocks after fifteen minutes on palliation?), to confusion (I have now suggested that death can be avoided in some cases… really? Is there a chance I won’t die?) to disengagement (the patient cannot focus; their emotional and intellectual energy has been sapped by the preceding discussion; they just nod and say ‘Yes’). Sometimes that final chapter, with its visualisation of a dying process (phones ringing, bleeps bleeping, doctors running, defribrillators charging) causes a crisis. The inevitability of death is confirmed. Again, relatives often react to this more than patients themselves.

I am suggesting that an honest discussion about dying does not need to mention CPR explicitly to be complete. The law disagrees. How did this happen? Why the disparity? I write this as a doctor, but doctors represent only one side of the process. It seems that the judges in the appeal court felt the need to protect patients from doctors like me assuming that discussing a natural death, with its implicit assumption that CPR will not be a part of that, was enough. In their view patients need to be made aware, however distasteful it seems, that a potentially ‘life-saving’ intervention is going to be withheld.

Several doctors have said to me something along the lines of,

‘But there are many treatments that we don’t discuss, because they are irrelevant to the patient’s condition, or so ineffective as to be irrelevant. We don’t talk about bone marrow transplants in 87 year old patients with end stage myeloma, even though it could, theoretically, be done. We don’t talk about lung transplants for patients with lung cancer, even though, theoretically, they could extend life. We don’t mention intensive care when patients with advanced Alzheimer’s disease begin to succumb to bronchopneumonia, even though it could be done. Why? Because those things would be largely ineffective. So why talk about CPR with a dying man even though it could theoretically be done?’

The answer is – CPR is different. It is an invention that has been imposed on the dying process because in certain circumstances it is life saving. It is a now part of the transition between life and death. In the minds of many, and I do not decry this, it is a symbol of resistance, of a commitment to living, however diminished or short the extension to life might prove. It is different, and as doctors we need to accept that our utilitarian and ‘realistic’ view of it will never be shared by the majority of the patients and relatives we see.

In the current climate I see no option but to find a way of completing every end of life conversation with an addendum about CPR, however brutal it feels. What was once implicit must now be explicit. Perhaps the judges were right – patients need it, and we, the doctors who thought we knew how to talk about death, are mistaken.

 

oOo

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