IN her book, Tell me the truth: conversations with my patients about life and death, Melbourne oncologist Dr Ranjana Srivastava writes about a patient with advanced gastric cancer.
“I want you to tell me how I will die”, the survivor of the Bosnian war said to her. “I have asked a few doctors but no one wants to.”
The patient told her that a young doctor nearly jumped out of her skin in fright at the question, while a surgeon gave him “a funny look” and said he would “send someone in”.
Dr Srivastava was surprised by her own reluctance. “I feel uncomfortable that I, who cannot help him live, am readily entertaining his death”, she writes.
She describes how she kept one eye on the door as they talked, “as if to avoid getting caught discussing death when my duty is to save lives”.
Doctors’ discomfort with such conversations may stem partly from a perceived lack of expertise, she suggests, but also from a difficulty with “the notion of not being in control”.
Whatever the reasons, there is evidence doctors do not always provide the straightforward information about prognosis that seriously ill patients might want, and not just in relation to cancer.
A study published online last week by JAMA Internal Medicine involving patients with end-stage renal disease found a striking discordance between patients’ understanding of their situation and the views of their nephrologists.
More than 80% of the 62 patients interviewed believed they had at least a 90% chance of being alive in a year. Only 25% of their nephrologists believed the same thing.
On top of that, more than a third of patients whose doctors said they were not transplant candidates believed they were.
The researchers, from Beth Israel Deaconess Medical Center in Boston, were particularly concerned that in 60% of cases the patients’ nephrologists indicated they “would not provide any estimate of prognosis even if their patient insisted”.
This is a small study conducted in a very particular group, although the authors say similar discrepancies between patient and doctor estimates of survival rates have been found in cancer studies.
If patients do have unrealistic expectations about prognosis, might this affect decisions they make about treatment, perhaps encouraging them to opt for more interventionist care rather than a palliative approach that could give them a better quality of life in their last days or months?
The Boston study, for example, found patients were far more likely to opt for care focused primarily on relieving pain and discomfort if they believed their chance of survival to 1 year was less than 90%.
In fact, the researchers express concern that the lack of clarity on prognosis could mean “hemodialysis patients generally may receive more aggressive care at the end of life than they desire”.
There are resources in this area (such as guidelines published in the MJA), but frank discussions of prognosis are probably always going to be challenging, not least because it may not always be easy to work out how much an individual patient wants to know.
For Dr Srivastava it was cathartic to see the peace her patient reached after their conversation: “There won’t be even one more question”, he said with a weak smile. “This conversation has taken it out of me, but I feel it has been the most meaningful.”
He died that night.
“I am surprised at how unnerving I find the concept that, even in this age, medicine cannot always deliver wonders, yet what I found hardest of all was casting aside my own reluctance to discuss the details of his dying”, Dr Srivastava writes.
“How ironic that we, witnesses to life in all its glory and ruin, have yet to come full circle and talk easily about death.”
Jane McCredie is a Sydney-based science and medicine writer.