When The Medical Is Personal

At the 2014 TEDxJNJ event I attended, Bennett Levitan of Janssen R&D talked about work he was doing to incorporate patient preference and risk tolerance into pharmaceutical treatment (a review of his research is here). The idea is that from a purely medical and scientific standpoint, we’ve established risk points beyond which we consider a treatment unsafe. More than x% risk of a serious side effect? That treatment will not be offered to patients. And most of the time, that’s the right decision.

But consider a seriously ill person, or someone whose quality of life is significantly affected by their condition. That person may be willing to accept a greater risk than the scientific community recommends if a treatment could conceivably lessen their suffering. And that’s the research that Levitan does, looking at what people find acceptable risk for themselves if they are also grappling with a serious illness. His findings are that some people were more open to risk than the scientific community when they weighed it against their personal experiences with severe illness, or against other severe risks. Not all patients have the same risk tolerance as the scientific community, in other words.

What I took away from this talk is that we need to consider what matters most to people around their own lives when we think about the medical decisions they might make. And yes, I’m ignoring the thousands of legal issues that physicians and scientists grapple with in terms of making experimental and risky treatments available to patients; I know I am oversimplifying their decision process.

Nonetheless, I believe that it’s crucial to consider what the person who is ultimately affected by a treatment wants and values and needs if we are really going to do good in the world. Some people are willing to live with significant impairment if it means they do, in fact, live. Others would prefer to die if the alternative is facing the world with particular losses. And who are we to decide that for them?

In his memoir, When Breath Becomes Air, written as he was dying, Dr. Paul Kalanithi put it this way (emphasis mine):

“Before operating on a patient’s brain, I realized, I must first understand his mind; his identity, his values, what makes his life worth living, and what devastation makes it reasonable to let that life end. The cost of my dedication to succeed was high, and the ineluctable failures brought me nearly unbearable guilt. Those burdens are what make medicine holy and wholly impossible; in taking up another’s cross, one must sometimes get crushed by the weight.”

As health professionals, as experts of any stripe, we are trained to strive for a certain definition of success. But if that type of success translates to an unhappy life for those we claim to serve, have we really succeeded?