Uitzonderlijk lange overleving

Most physicians take the mean or the median of survival after a diagnosis has been established as a basic reality and not as an abstraction. Based on his personal medical history, Stephen Jay Gould has argued that physicians are wrong. Four cases illustrate how important it is to fully appreciate the variation in survival and the right-skewed distributions when discussing expected survival with patients. In three patients with the diagnosis of glioma, men aged 40 and 46 and a boy aged 4 years, in whom the prognosis was considered to be very poor, survival periods longer than expected caused confusion regarding the diagnosis and presumed effects of alternative treatments. In a fourth patient, a 56-year-old man, suffering from amyotrophic lateral sclerosis, 5-year survival led to reconsideration of the diagnosis. However, confusion regarding the diagnosis and suspected effects of treatment was unnecessary, since all four survival periods fitted well into the right tail of the respective survival distributions. Greater awareness among physicians of the fact that survival distributions are always right-skewed and willingness to emphasize that the message is not in the mean, median or mode, but rather in the variation, may avoid confusion when survival is longer than expected.