By Dr. Penny Block, PhD
All of us are uncomfortable with uncertainty. And cancer can feel like an ultimate, immense, even overwhelming uncertainty. As patients, we look to doctors as medical experts, and often seek definitive information in the midst of this uncertainty. Given these expectations, doctors may be even more uncomfortable with uncertainty and may easily feel pressed against the proverbial wall when faced with the question – whether spoken or tacit –“What do you think, doctor? How long do I have?” Though no physician can know the exact answer, rather than simply acknowledging the uncertainty, many respond with the objective data of, for example, normal or bell curve data — a simple descriptive statistic for a large population of people — in the back of his or her mind. Or perhaps he or she might state something like “Well, with your diagnosis 10% of patients live X number of years,” or “It’s difficult to have to tell you, but sadly, 15% of patients survive only a year or two or Y number of years.” Though certainly not the type of definitive information any patient would ever seek, quoting such data to provide objective information, even if stated in the most compassionate tone, can have the unintended effect of sinking or even devastating a patient’s emotional stamina.
Let’s take a look at where these data come from. These “survival statistics” are based on averages from groups of people. Researchers use them to predict if a specific therapy is likely to work or not, and sometimes physicians use them when trying to decide between multiple therapies. What they CAN’T do is predict any specific individual’s outcome. Therefore, using bell curve statistics for any individual person sitting across from that physician is not only scientifically inaccurate (a misapplication of median or average data), but inadvertently irresponsible.
What would I prefer that a patient hear? First, that same doctor could explain with complete honesty that there is a “right leg” on that bell curve – just a descriptive statistic for a large population of people – showing data points or people living well beyond that median average And, better still, there are “outliers,” or people (data points) that don’t fit neatly under that bell curve, and who actually live significantly beyond that average, and live well! As long as there are those individuals or outliers, any patient can reasonably hope that he or she may also become an outlier as well! In addition, a physician could reinforce this message by saying something such as: “Your diagnosis is very significant, and although I can’t know with certainty your actual outcome, we plan going to develop the best, meaningful, scientifically sound strategy for you, with the hope of giving you the best potential of becoming one of those outliers!
Also, very important for patients to remember — particularly if they’re fatigued and thus more vulnerable to worrisome data available online or communicated as dark oncology prognoses – is that we do not have bell curve statistics for those people, who, with determination and a comprehensive, individually-tailored dietary, biobehavioral, and physical activity plan, are able to make very significant changes to their internal biochemical and molecular environments. We know these changes have the potential of fostering better health, while minimizing specific contributors that can further the disease process.
When I’m speaking to patients – whether one-on-one or in one of our Strategies for Success groups – I encourage them to mentally X out that bell curve, since we don’t have survival bell curve data or a descriptive statistic that applies specifically to them. And we do, in fact, treat many of those outliers, who surpass “survival statistics” and are living many quality years well beyond what the statistics might have “predicted.”