JUDY WOODRUFF: Finally tonight: Often lost in the health care debate are the individual stories of fear and uncertainty that come with a medical diagnosis.
Elizabeth Silver is an author and attorney who was unexpectedly plunged into a world of statistics and probability. She offers her Humble Opinion on how to consider a prognosis.
ELIZABETH SILVER, Author, “The Tincture of Time”: When my daughter was six weeks old, she suffered a serious stroke and spent two weeks in the neonatal intensive care unit.
As new parents, my husband and I spent that time beside her, waiting for answers and, at the end, were given very few. At home, with a single click, we could watch videos, read articles, and, most importantly, stumble across numbers that would send us either rejoicing or panicking.
Like many parents, we had nothing to hold onto but statistics. According to one I read, her stroke carried a 20 percent chance of death and 90 percent chance of severe neurological damage. I focused on the 90 percent, and imagined very different versions of our lives.
Over the next year, as we weaved in and out of doctors’ offices, I recalled the aphorism that physicians are supposed to treat the patient, not the paper. Hippocrates, the ancient Greek philosopher and physician, said that it is more important to know what sort of person has a disease than to know what sort of disease a person has.
In other words, we must remember that patients are people with stories.
I took a step back and began looking at these statistics, these abstract medical studies and numbers, and started to view them just as I would a story, a novel or a film. After all, a statistic is only a particular version of a story. And, as with all stories, there are always multiple perspectives and multiple truths.
You can analyze them like literature: When was that statistic taken? Who was the source group? Was it self-selecting? What else do the subjects have in common?
When looking at a statistic in a medical study, you don’t have the full picture of your prognosis, unless you have every perspective, every detail in the story. And that is something you will never get from a number.
Three years later, my daughter escaped all her damning statistics and is living a full, happy life, as if it never happened. When I look closer at her story in its totality, those statistics didn’t differentiate based on age, my prenatal care, or even the actual size of the stroke.
We all know that statistics are useful, but if we rely on them with too much weight, this can only lead to a breakdown of trust with medicine. We end up focusing on the 90 percent chance of things going wrong, and, in the process, neglect the 10 percent chance of things going right.
Perhaps my daughter’s story might one day be counted in a future study, and her success will serve as a tick against those frightening, bigger numbers, because there is an alternate ending that includes the full picture, and it can be beautiful.
JUDY WOODRUFF: Elizabeth Silver.