A soft task hard to do: why we fail in engaging relatives at the end of life

Every controversial end-of-life decision that I have read about in recent months has had one thing in common: inadequate communication. They appear to have progressed to the courts or the newspapers because doctors made decisions without ensuring that families were in agreement. The most frustrating aspect of these widely publicised cases is the realisation that half an hour spent in a quiet room discussing the reasons, explaining the pros and the cons, might have halted the subsequent polarisation of views. The fact that the decision was being made to protect the patient, and not bring forward their death, could have been emphasised. The family’s understanding of what their loved one’s probable view on the subject could have been explored. An ambivalent or frankly negative response might have alerted the team to the fact that their patient’s family had a concrete view on resuscitation or end of life care.* Having tested the temperature, the medical team could have stepped more tentatively into the ethical waters that were soon lapping over their beleaguered heads.  

 

Here I explore some of the reasons why doctors sometimes fail in the task of engaging families in end of life discussions.

 

 1) The pressure to make early decisions  

In 2012 a report published by the National Confidential Enquiry into Patient Outcome and Death (NCEPOD) called ‘Cardiac Arrest Procedures: Time To Intervene’ showed that there are systematic weakness in our care of patients before and after cardiac arrest. They reviewed the notes of hundreds of patients who had arrested and undergone cardiopulmonary resuscitation. An important component of this poor performance was inadequate identification of frail patients who are not likely to survive resuscitation. Essentially, we are attempting to resuscitate too many patients. The investigators found that only 52 of 552 patients had a DNAR decision, but at least 196 should have based on the clinical information available. Potentially therefore, those without a DNAR decision were subjected to resuscitation attempts that were always going to have a very low chance of success.

 

Mr Bertie Leigh, Chair of NCEPOD, wrote in his foreword to the report:

 

‘Alas, the results are profoundly disappointing and as I read these pages I wondered how many of these interventions would be defensible if charged as assaults before the criminal courts, or as professional misconduct before the GMC. The GMC recognises that CPR should be administered in an emergency, but it is not good medical practice to fail to anticipate the needs of the patient before an emergency arises. If the failure is deliberate or reckless then I suggest that it is arguably criminal. In the overwhelming majority of cases the question of CPR was not raised with the patient before the arrest…’

 

The NCEPOD report has resulted in an increased awareness that delayed resuscitation decisions reflect bad organisation and bad practice within hospitals. The pressure is on, to make these decisions soon after admission, in the first 24 to 72 hours. The question is, are doctors equipped to broach end of life subjects at such an early stage? And are families going to be prepared for it?

 

2) The nature of emergency

Emergency medicine presents specific hurdles to good communication. Patients themselves are often too unwell to engage. Due to the unforeseen nature of their presentation, perhaps in the middle of the night or the early hours of the morning, the most important members of the family are frequently absent. Phone calls can be made, but if a patient is deteriorating quickly and the doctor’s strong conviction is that resuscitation would be useless, a DNAR form will have to be completed – even without a discussion. Resuscitation decisions can usually wait until the next day of course, but even then it is challenging for doctors in this early period to arrange the necessary meetings. Visiting hours can be restrictive. Senior team members may be tied up elsewhere, in clinics or meetings… NCEPOD investigators were unsympathetic to this argument:

 

Only a minority of patients in this group had a cardiac arrest within 12 hours of hospital admission and that most were in hospital for one or more days. Lack of time appears to be a poor reason not to have made decisions about CPR status in this group.’

 

So much for the pressure of time. It is a weak excuse. Arrangements can always be made if sufficient priority is given to a task. It is the question of priority that cuts to the heart of this problem. Why don’t doctors perceive these conversations as important enough to reschedule other, more routine commitments?

 

3) The business of a ward round

The primary aim for any acute medical team on a ward round is to see each patient on their list, make a comprehensive, accurate assessment of their problems, and formulate a management plan. If they do not manage to see those patients in the allotted time
they will have failed. Following this, they must effect the decisions generated by each of those assessments. These are physical tasks that have immediate, or very short term, visible consequences. A septic patient needs another blood culture. A feverish man with confusion requires a lumbar puncture. An abdomen that is full of fluid requires draining. A phone call to a GP, to obtain more background history. A referral to the neurosurgeons. These tasks are important – if they are omitted the junior doctor will be answerable and the senior doctor embarrassed. The patient will not have progressed, their symptoms will not have been relieved. Their length of stay will be extended.

 

The significance of a family conference may pale in comparison to such ‘hard’ tasks.

 

4) Medical simplicity, emotional complexity

In many cases the question of resuscitation is so obvious that, to put it crudely, the decision is a ‘no-brainer’ for the medical team. A quick perusal of the medical notes, combined with a glance at the patient from the end of the bed, may be enough to persuade the team that resuscitation would not only be medically ineffective, but unkind. When the clinical impression is so immediate and strong, the need to relay this information to the family may appear less important. Where is the controversy? The family will undoubtedly agree, it’s a clear cut case, isn’t it? Hasn’t the patient been deteriorating for weeks at home, under their very gaze? Surely they won’t require a detailed explanation…

The mistake here is the assumption that something so medically uncomplicated will be equally straightforward from an emotional point of view. This error reveals a lack of empathy – or what I call ‘extended empathy’, an emotional exercise that demands an appreciation not only of the patient’s feelings, but of the family’s too.

 

5) Coasting

The number and complexity of medical tasks that are generated during a ward round has been mentioned already. The focus of the medical team is to identify pathology and to reverse it. Those tasks require concentration and application. Details cannot be missed and omissions cannot be tolerated. Junior doctors must navigate their way through unfamiliar systems in large organisations to get things done. But if the battle for a patient’s life appears to be lost, and death becomes inevitable, the level of concentration required diminishes.

 

I would argue that doctors drop into a lower gear when managing the dying. The pressure, to save life, is off. No harm can be done now (except perhaps an inappropriate resuscitation attempt). The intense focus on defeating disease fades, and it is possible that other, equally important but physically less tangible tasks, are sidelined. This is not to say that the needs of the patient or their family are ignored, just that in the never-ending pressure to identify and hold disease in its tracks, smoothing the way for a cart that has already slipped its harness and is rolling inexorably down the hill appears less critical.

 

6) Brutalisation

This word was used in a well-known newspaper to describe society’s attitude to death in the elderly population.

 

‘The Liverpool Killing Pathway is driven not just by crude economic calculation but by a wider brutalisation of our culture, at the heart of which lies the erosion of respect for the innate value of human life.’

 

I took this personally (which doctor wouldn’t?) and immediately rejected the word. But the more I reflected on the reports of poor practice elsewhere, the more I began to fear that the accusation contained a kernel of truth. In 2007 I published a paper called ‘The Absence of Sadness: Darker Reflections on the Patient-Physician Relationship’ (unlocked, J Med Ethics) in which I described how exposure to death and suffering can result in a neutral emotional reaction to death. It is of course a cliché that doctors slowly become nonchalant to death, but it cannot be denied that in order to cope with the incessant stream of death that flows through their workplace  they do develop ways of compartmentalising tragedy. Perhaps an inevitable consequence of this is a failure to appreciate how much time is required to explain each one, and how important it is involve those family members who are affected by it.

 

If death is no longer remarkable to a doctor it is not surprising that they cannot prioritise the need to communicate and explain its arrival to a patient’s family. If it appears routine then their approach to the task of talking will be just that – routine.

 

It would seem impossible to the right thinking observer that doctors can develop such inhuman frigidity, but we must consider the possibility. But we must also sympathise with a tendency to become unfeeling in this way. This is because death is indeed routine. Patients come to hospital to die. It may not be the best place for them to do so but it is frequently their final destination. Even if death is expected, in say a nursing home, it is of
ten too much to expect the family or General Practitioners to manage it. So ambulances are called and patients are admitted. Frequently the fact that they are dying is no surprise at all. Not to the doctors involved, not to the family.

 

This is not to say that a detailed and sensitive explanation as to what might happen on the wall is not required. But for the doctor who has been asked to assess a dying patient, and who quickly concludes that this is the natural end to their life, it is hard to conjure up instant feelings of sadness that might then transform into a recognition of the need to communicate. There may be no sense of urgency. Only if the doctor becomes aware that the family are on a completely different page, and have no idea how close to death the elderly relative relative is, will the need to engage them become of paramount importance. 

 

So what haven’t we covered…oh, that’s right…the patients and families themselves! But this is where my analysis must end. I can make a stab at understanding how doctors feel and behave, but those on the other side of the curtain, well, that’s an infinitely variable world. To understand how they will react to end of life conversations, and how open they might be such approaches, we need to take into account education, religion, grief and personality, and that is beyond the ambition of this essay.

 

 

 

* This is not to say the medical decision would have been altered or reversed, but in offering a more detailed explanation, or agreeing to revisit the subject after family had been given time to reflect, the clash of opposing views might have been softened.

 

Note:

Recent controversial DNAR cases include those at Addenbrookes and Queen Elizabeth the Queen Mother, Margate. Links to Liverpool Care Pathway reports can be found in earlier posts in this blog.

 

 

 

 

 

 

  

 

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2 comments

  1. Woman with terminal lung cancer & a fractured neck, and a man with Downs & dementia get DNR orders without family agreement. If these are the worst examples of poor communication with the family that lawyers can find to complain about, I confess I’m going to worry about something else. Futile attempts at resuscitation are a much bigger issue.

    Like

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