Dr. Atul Gawande (Illustration by Joel Kimmel for The Boston Globe)
In his 3rd Reith lecture ‘The problem of hubris’ Dr Atul Gawande spoke about doctors’ reluctance, whether through habit, laziness, aversion or even commercial interest to ask about patients’ true goals near the end of life. It is not easy to find fault in a lecture that so clearly expresses what many of us believe, that death is over-medicalised and the person’s priorities frequently overlooked in the rush to reverse complications, but there was something in it that didn’t sit well with me. I will try to explain.
Dr Gawande was forthright in his criticism of doctors…
…the way we in medicine can deny people these moments, relegating them to the care of strangers alone in an intensive care unit, the way we can forget this out of obtuseness and neglect, is I think cause for our shame.
This frustrated me a little because he did not get behind the behaviour that he criticised. Doctors and nurses are ‘people people’ after all, and there must be good reasons why a clear-sighted approach to their patients’ wider goals is not maintained. My argument is that our failure to protect priorities is more likely to be due to sensitivity and nervousness rather than laziness or lack of empathy.
The patient, Peg, whom Dr Gawande used to illustrate a ‘good death’ had recurrent sarcoma. With the right support she was able to continue in her role as a music teacher until the end of her life. The image of her saying farewell to her young pupils was incredibly moving – so powerful in fact that I can imagine the vignette changing peoples’ practise immediately. But… contrarian as I am, I got to thinking – why was Peg’s case not typical?
When I compare her case to that of patients I see towards approaching the end of their lives, I see several differences:
Age – most dying patients are much older, leading to…
Frailty and co-morbidity – older patients may not have one identifiable pathology (eg. malignancy) that is driving terminal decline, meaning…
Absence of specialist palliative care input – however desirable specialist input is, the fact remains that many approach death without that expertise… In addition, the situation is complicated by…
Mental incapacity – the identification of goals is so much harder in this case; and finally…
Accelerated deterioration – identifying goals and agreeing the limits of medical care is much harder when the signals that death is approaching come quickly, or are punctuated by potentially reversible crises
These factors present barriers to the measured identification of therapeutic futility – this being the point, one assumes, at which an effort to seek a patient’s wider goals should be made. One could argue that the identification of goals should occur much earlier than that, but while a possibility of cure or sustained stability exists, I think many patients and healthcare workers would be reluctant to take their eye off the ‘medical’ ball.
The sudden desire for life
Broadening the conversation to non-medical goals can feel risky at times. It brings the patient out from the usual transaction of therapeutic benefits and burdens, as though to say – ‘These medical details are not relevant in the longer term, because you are gradually approaching the end, and there is nothing we can do to stop it...’ – Even in skilled hands, it is an intrinsically negative conversation, however one wants to portray the identification of goals as positive.
If the patient was hitherto attempting to maintain a constructive and practical attitude, this change in tack can be painful. It may be too early to move away from the medical practicalities. As a doctor, I worry that moving into this area is interpreted as a signal of surrender to the disease. Sue Lawley, who chaired the Reith lectures, touched on this aspect of psychology when she asked the question,
‘Doesn’t the desire for life suddenly at the end, when someone is aware that they are dying, suddenly overcome all kinds of thoughts they might have had before? Suddenly people want to live.’
This is what I have seen in the eyes of patients who have been admitted for emergency care at the end of life. I see it in their relatives’ eyes too. It is the strong desire for help. Yes, that might be help with poorly controlled pain or breathlessness (ie. emergency palliation) but in the ED, or on the acute ward, the first response of physicians is to deal with the active complication – be it a chest infection, haemorrhage or electrolyte disturbance. Salvage. Not submitting to nature, yet. Resisting the impulse for survival is unnatural, for want of a better word, and in the context of a rapid or unexpected change in condition it is very hard for relatives, primary physicians, even hospice staff, not to refer to hospital – even if the patient’s stated goals have made it clear that more time in hospital is the last thing they want. Once in hospital, escalation is often hard to avoid (I explored this in a post called ‘5 days: a tale of escalation creep’)
Positive goals, negative limits
Dr Gawande has found that to determine a person’s goals one needs do no more than ask and listen,
“… the second important lesson that I felt like I learned was that the most reliable way to learn what people’s priorities are – and there are highly technical studies on this – the most reliable way to learn is to ask. And we don’t ask.”
He speaks about doctors’ tendency to talk more than the patient during consultations, about the self-restraint that is required to just stop and listen. Later, he gives the example of his father’s changing goals as a spinal tumour progressed –
“…his first goal was I want to stay a surgeon as long as possible. And then when his hand became paralysed by the tumour and he was forced to give up surgery, then it was that he wanted to at least, no matter what, remain … he’s a social creature.
“…And in fact even towards the end and he was in a hospice, he had a dinner party almost every week. He loved to stay in contact with his family by Skype, to email and connect with people. He would have grabbed for any opportunity to keep that going.”
In this case there is no doubt as to a son’s ability to enquire about and interpret his father’s preferences. Those preferences were positive. They were about making the best of the life that remained. But I would contend that it is not so easy for doctors in general.
The difficulty I experience is that this conversation often runs in parallel to the rather downbeat subject of ‘ceilings of care.’ For all the focus on goals and what can be achieved in their final weeks, fairly rigorous planning is required to agree on what will not be done. I explored this in a post called ‘Not for this and not for that: emphasising the positive in care for the elderly’, in which the negatives seem to dominate the conversation and doubts can arise as to the motivations of the clinician. To disconnect the two (‘I’ll bring it up another time…’) seems cowardly, but to move from goals to ceilings might appear callous – ‘OK, we’ve explored what your priorities are… and in light of those we need to talk about what treatments might not be appropriate, should you be rushed in with something acute…’ Again, the positive segues into the negative. The negatives have to be broached. And we don’t find this easy.
Bolder but colder?
The barriers described above are real, and exist not because doctors are too lazy or obtuse to surmount them, but because they find it difficult to find the ‘right time’ or the ‘right way’ to draw their patients into a conversation that they may not be ready for. It is a manifestation of over-sensitivity, rather than the opposite. There are parallels here with the aversion to causing distress when bringing up the subject of cardio-pulmonary resuscitation. As the Janet Tracey judgement showed, not doing something important (in this case asking a terminally ill lady about CPR) because you worry it might offend or upset her, is not defensible. Similarly, not turning a dying patient’s head towards the consideration of broader goals rather than the narrow aims of their next course of palliative chemotherapy, is just as regrettable. To be better we probably need to be bolder – even if that means feeling a little colder.