A NHS Trust was found to have transgressed a patient’s human rights this week. A young man with severe learning disabilities, Carl Winspear, was made ‘Not For Resuscitation’ at 3 o’clock in the morning without a discussion taking place with his mother. He did not have mental capacity to be involved in the decision, and it was subsequently rescinded before his unavoidable death from pneumonia. I do not know if Carl did actually receive CPR when he died, probably not – perhaps a further DNACPR was made after appropriate discussion in the morning. It appears that the initial decision was ‘medically’ right but ‘ethically’ wrong.
The fact that the decision was made at 3 o’clock in the morning suggests to me that the patient was deteriorating. If so the decision was urgent, and the doctor would have been acting in the patient’s best interests to protect him from a futile procedure. To ignore or overlook the patient’s resuscitation status would have been a dereliction of duty. Yet, at the same time, the doctor denied him a human right. If the doctor had called the patient’s mother and discussed it no such transgression would have occurred. The question we must ask ourselves as doctors now is – 1] would we have had that conversation, and, 2] how would we have conducted that conversation?
The first instinct might be that such a conversation should not take place at 3 o’clock in the morning. We have to get over this! The nature of the decision, and the fact that we are contemplating another person’s imminent death, surely blows away any reservations we might have about disturbing people or inconveniencing people. Perhaps they won’t be able to take it in, having been woken at such a time? Well I’ve had a few such conversations in the early hours, and they can.
The next question is how do we start the discussion? Here we can get into difficulties. Is it an open question, “What do you think we should do?”, or is it a one-way communication, “I’m sorry to say your son/father/husband is deteriorating… we think that we should record in the notes that he should not have resuscitation, he is so weak now it would definitely not work.” Or a mixture of the two. Making it sound right, making it sound humane, but ensuring that the information is shared and a genuine exchange of opinions takes place, is a great challenge.
It takes experience, it takes confidence, and it takes a degree of strength. If the conversation begins with a completely open question then the person on the other end of the line, if they are not prepared for it, will respond to their own perfectly understandable instincts – they will want their relative to live for longer. So they may say, “Yes of course, do anything, if his heart stops… resuscitate.” If this happens you have a long way to go to bring them back to the consensus that you hoped for in the first place. Because that is why you rang, isn’t it – to get your medical DNACPR decision ratified by the patient’s next of kin? This is the error – the fait accompli. However sure we are about the medical ‘rightness’, recent judgments tell us that we have to remain open to having that opinion modified. Often, the relative will have anticipated the conversation, although perhaps they would have preferred to have had it in the light of day, outside an emergency situation. But we all know that such conversations do not take place soon enough.
Is this conversation just a politeness? ‘…back to the consensus that you hoped for…’ I wrote in the paragraph above. If we know the answer we want before we pick up the phone (that the patient should be DNACPR), why pretend to ask a question? Are we really interested in the opinion of the relative, when we know that from a medical point of view resuscitation is entirely inappropriate?
The reason we ask their opinion is because the Mental Capacity Act requires us to, for we cannot make a complete decision without knowing as much as possible about the wider aspects of the life in our hands.
GMC guidance, which quite neatly summarises the Mental Capacity Act, says:
‘If a patient lacks capacity to make a decision about future CPR, you should consult any legal proxy who has authority to make the decision for the patient (i.e. someone with legal power of attorney for medical treatment – my note). If there is no legal proxy with relevant authority, you must discuss the issue with those close to the patient…’
‘If they do not have legal authority to make the decision, you should be clear that their role is to advise you and the healthcare team about the patient. You must not give them the impression that it is their responsibility to decide whether CPR will be of overall benefit to the patient.’
‘The doctor [ ] and the patient’s carer, make[s] an assessment of the patient’s condition taking into account the patient’s medical history [ ] and carer’s knowledge and experience of the condition.
The doctor uses specialist knowledge, experience and clinical judgement, together with any evidence about the patient’s views (including advance statements, decisions or directives), to identify which investigations or treatments are clinically appropriate and are likely to result in overall benefit for the patient.’
The opportunity to modify that ‘obvious’, sure-fire medical decision must be respected – that’s the MCA, the law. I suspect that such modifications are rare, but trying to have the conversation signals an awareness that there is more to the final phase of a patient’s life than the physical ability of their heart and lungs to sustain a cardiac arrest and subsequent resuscitation attempt. There is a social and emotional context that only the task-oriented, over-scientific doctor would regard as irrelevant.
Unfortunately ‘task-oriented, over-scientific’ describes rather well how many doctors feel at 3AM. The backlog of work and the burden of prioritisation may lead you to overlook the subtleties. A rapid decision is required, the ‘right’ answer is clear, the form needs to be filled out because without it the ward staff will make the call if his heart stops… the pressure of circumstances is substantial. Yet in just such circumstances are human rights over-trodden. So perhaps the conversation is less about allowing your medical opinion about DNACPR to be modified, and more to ensure that you are not blundering into a complex, emotionally charged, or wholly surprising situation for the relatives.
Yet, I can imagine a situation where a completed but un-discussed DNACPR decision might be appropriate. If the patient is deteriorating rapidly, dying before your eyes, it must be permissible to make that decision and sign the form even if you have not had the time, or been physically able, to have the conversation. A genuinely futile CPR attempt performed for want of a conversation seems like an unbalanced state of affairs to me.
It is in these situations that I find myself making the DNACPR decision, but writing very carefully in the notes the reasons why. It might be half a page long. It will include my opinion that the patient is deteriorating and likely to die in the next few hours, possible less, and that my knowledge of the patient’s comorbidities or frailty lead me to feel absolutely confident that resuscitation would bring only harm, and no benefit. Then I will write that I have been unable to contact the next of kin, or for other reasons have been unable even to make an attempt at that time. I leave the situation hoping that my justification proves robust should a complaint arise after the death of the patient. Making good notes in parallel with Do Not Resuscitate forms (which are a mere administrative sign) is a habit that we must develop. In the Janet Tracy case it was remarked by the judge that there was no collateral evidence to support the doctor’s assertion that communication with the patient had taken place. By sitting down at a desk and formulating our thoughts, even if the 3AM mental fog slows us down, we provide a narrative that tells, days or weeks or months later, other interested parties such as the relatives, a coroner or a judge brackets (should it go that far), what we were thinking and why we thought we were right. DNACPR forms on their own are cryptic and appear bureaucratic, the very tendencies we must avoid when dealing with people at the end of life.