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“He is the best physician who is the most ingenious inspirer of hope.”
– Samuel Taylor Coleridge
No one wants a doctor who takes away our hope.
Even in the direst of medical circumstances, a patient must be able to look forward. However, there are hopes – and there are unrealistic hopes.
Take the person with a late-stage cancer. Cure is out of the question and so the focus turns to what can be achieved by chemotherapy.
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Will it add some months to their life?
What will the quality of that life be like?
The problem with giving someone unrealistic hope is that the chances of receiving palliative care diminishes. And there is some evidence that doctors may inadvertently inflate the odds of successful treatment.
A 2012 study, published in the New England Journal of Medicine (NEJM), found that 70 to 80 per cent of patients with either advanced bowel or lung cancer expected a cure that simply wasn't going to happen. Using data from the national Cancer Care Outcomes Research and Surveillance (CanCORS) study, US researchers found that for patients with recently diagnosed metastatic cancer, some 69 per cent of those with lung cancer and 81 per cent of those with bowel cancer, who had opted to receive chemotherapy, had false expectations about the curative potential of the treatment.
Oncologists usually tell patients when their cancer is incurable. And we know that patients with advanced cancer would accept toxic treatment for even a 1 per cent chance of cure but would be unwilling to accept the same treatment for a substantial increase in life expectancy without cure.
So how do we explain the results of the NEJM research?
It suggests that disclosure of a poor prognosis does not, in itself, lead to sustained understanding among patients. Is it because they don’t trust their doctors? Was the message not communicated effectively? Could there be an element of “collusion” between a doctor and the person with cancer – with neither wishing to focus on prognosis – rather spending the bulk of the conversation discussing treatment options?
Daniel Kahnemann refers to humans having a “planning fallacy” – our tendency to overestimate benefits and underestimate costs, and thus make decisions to embark on risky pathways.
From my personal experience looking after dying patients, I believe that some people adopt an approach of “constructive denial”. These patients do not make unrealistic choices, they readily accept hospice care, but do so without ever openly acknowledging their imminent demise.
This may be their way of retaining hope. It may offer some prolongation of life.
However, separate research shows that patients who overestimated their survival lived no longer than patients who had a more realistic appraisal. These patients did, however, have more difficult deaths with more aggressive end-of-life intubations and resuscitation, and they were more likely to die in hospital.
Overall, it seems that cancer patients who “hope for the best and plan for the worst”, enjoy the best quality of remaining life. Nearly all patients want to know whether or not they can be cured, and the majority want to know their prognosis. This is best achieved when doctors engage in a conversation known as “ask, tell, ask” – it consists of asking patients what they want to know about their prognosis, telling them what they want to know, and then asking: “What do you now understand about your situation?”
But it is also important for cancer patients to feel they can say no to some or all treatments. This can be a difficult thing to achieve among the “battlefield” exhortations we throw at them – it is all too easy to to be made feel you have given up if you don’t become a soldier in the cancer trenches and a willing participant in a war to conquer cancer.
And it would seem that Coleridge’s adage about the “best doctor” is most definitely untrue when “false” is place before hope.