I just saw an an excellent talk by Juan Enriquez at the TEDMED meeting I just attended, on the subject of “What is the missing measure in medicine?”. Specifically, his central point was that we focus on the risk of harm from treatments: the baby victims of thalidomide are etched on our collective memories, with a mandate that the FDA protect consumers from dangers so that we can say “never again”. However, our extreme caution against the risks of approving potentially risky treatments leads us to sacrifice the benefit to all of the potential beneficiaries. We have no way to see and capture the time, quality of life, and even lives lost by NOT having treatments be available to people who miss that opportunity from our extreme fear of harm.
This is reflective of our “predictably irrational” behavior described and popularized by behavioral economist Dan Ariely, who notes that people consistently value avoiding harm or loss more than gaining equivalent benefit. We are irrationally risk-averse to the point that we make poor choices for our long-term outcomes because of it. At the same time, in a world in which the FDA or individual physicians are vilified for harming a patient, the negative consequences are truly far, far greater for harming one person by an error of commission (even if it was an appropriate judgment of risk but an improbable outcome) than by failing to offer a treatment that could help someone significantly. Nobody gets sued for failing to cure a challenging cancer.
What makes it even harder is that our brains are programmed to gravitate to stories and individuals. Strong evidence with data from hundreds or thousands of people is all good and well, but patients are unduly swayed by the story of a treatment that happened to work for their friends cousin, or hearing a story on the news of a mother who is certain that a vaccine caused her child’s autism. Cancer care institutions also market this to good effect by portraying romantic, non-representative anecdotal reports of remarkable results in individual patients. So do lawyers or politicians, who highlight a sympathetic patient who has had a bad outcome, or the sweet face of someone who they contend would be subject to a “death panel”. A compelling, data-driven argument doesn’t stand a chance.
Sadly, even doctors trained in evidence-based medicine are still often convinced by the before/after images in the “case study” of an individual patient doing well on a particular new treatment or the relay of a colleague’s great result from a particular strategy than from the strength of the best evidence from a broader but faceless population.
But failure to recognize our predictably irrational behavior of avoiding harm by an act of commission but allowing 10 or 100 times as much harm by an act of omission, and by falling prey to the seductive appeal of an anecdotal report to outweigh all of the best evidence. But having 10 people die from progressing cancer to ensure that one never dies from the treatment isn’t a noble or wise decision. In the end, what we have is a system that reflects the incentives acting on it. We could help ourselves by recognizing that our current system of extreme protectionism is killing us with kindness.