Paul Kalanithi, Smith-Magenis Syndrome, and Certainty in Medicine
I have watched from a distance since Aurelia was born. My friend Megan’s third daughter demonstrated developmental delays from early on, and no one was sure why. Appointment after appointment, and yet Megan and her husband, Keith, were given no diagnosis. The good parents that they are, they simply loved and cared for their youngest child.
And then around a year after she was born, they finally received a definitive diagnosis: Smith-Magenis Syndrome. I remember reading the relief in Megan’s Facebook post. After navigating uncertainty for so long, they finally had an answer. Not surprisingly, Megan has become an advocate for increasing education on Smith-Magenis Syndrome and recently set up a personal webpage to help fund research on it.
What got me thinking about Aurelia was Paul Kalanithi. A young neurosurgeon with an infant daughter, he was diagnosed with lung cancer last year. Before his death on March 9th, he wrote two wonderful commentaries: How Long Have I Got Left? and Before I Go. The latter is an insightful reflection on nearing the end of life and a touching tribute to the simple, but deep, joys of children. I tear up every time I read it.
But it is the former commentary (How Long Have I Got Left) that got me thinking about Megan, Keith, and Aurelia. As a physician, Paul Kalanithi described the intentional ambiguity he would use with his own patients. But the patient Paul Kalanithi demanded clear and direct answers. He demanded of his oncologist answers that he himself would refuse to give. As a physician, he knew the “certain” answer wasn’t actually certain, and so refused to give it. As a patient, he longed for the certain answer just the same.
That the patient Paul Kalanithi wanted a certainty that the Dr. Kalanithi knew wasn’t available shouldn’t surprise us. As decision-makers, we value certainty. We’ll pay for a good thing and we’ll pay even more for a sure thing. As I’ve written elsewhere, we even value “pseudo-certainty” — that which appears certain even though we know it’s not certain after all.
"The fact of death is unsettling. Yet there is no other way to live." - Paul Kalanithi
I recently reached out to Megan to ask if she’d let me tell a small part of Aurelia’s story here. When I told her I planned to discuss the value we place on a definitive diagnosis or a definitive prognosis and the certainty they represent, she was quick to correct me. Aurelia’s medical story cannot be reduced to her diagnosis because there are so many uncertainties even after the diagnosis.
As much as we might want a diagnosis, the clear path of a disease after diagnosis, and as much as Paul Kalanithi wanted to know how long he had left, any answer we get cannot be more than pseudo-certain.
The patient Paul Kalanithi came to recognize this. He wrote:
“Before my cancer was diagnosed, I knew that someday I would die, but I didn’t know when. After the diagnosis, I knew that someday I would die, but I didn’t know when. But now I knew it acutely. The problem wasn’t really a scientific one. The fact of death is unsettling. Yet there is no other way to live.”
And this gets me to wonder how often you and I press our physicians for pseudo-certain answers. They’re the experts and we might ask them to give us unvarnished truth. And we need to learn to be happy with the answer, “I don’t know.”
Abraham Schwab is an associate professor of philosophy and a medical ethicist at IPFW.
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