In his classic work on illness and narrative: The Wounded Storyteller Arthur Franks writes:
“This book presents ill people as wounded storytellers. I hope to shift the dominate cultural conception of illness away from passivity- the ill person as ‘victim of’ disease and then recipient of care- toward activity. The ill person who turns illness into story transforms fate into experience: the disease that sets the body apart from others becomes, in the story, the common body of suffering that joins bodies in their shared vulnerability.”
We are experiencing a moment of history where stories about illness are being transformed and combined into data at an incredible pace. Reimbursement rates and outcomes often come down to meeting cold hard numbers, and of course when it comes to population health we need these numbers to understand and manage healthcare.
But the stories exist before the data, and the numbers and metrics are, in the end, collections of stories which doctors and patients tell each other every day.
Thanks to the work of Arthur Kleinman and others, narrative medicine is now mainstream and discussed, for example, in JAMA by Rita Charon, M.D., Ph.D., and taught in some medical schools. As Dr. Charon writes: “Sick people need physicians who can understand their diseases, treat their medical problems, and accompany them through their illnesses. . . . Through the narrative processes of reflection and self-examination, both physicians and patients can achieve more accurate understandings of all the sequelae of illness, equipping them to better weather its tides.”
As part of this blog we want to, on occasion highlight some of these stories.
Roger Angell, the legendary New Yorker editor and essayist, recently set down his take on being 93 years old. The Essay This Old Man: Life in the Nineties is a beautiful mix of descriptive writing, and reflections on aging and illnesses:
“Now, still facing you, if I cover my left, or better, eye with one hand, what I see is a blurry encircling version of the ceiling and floor and walls or windows to our right and left but no sign of your face or head: nothing in the middle. But cheer up: if I reverse things and cover my right eye, there you are, back again. If I take my hand away and look at you with both eyes, the empty hole disappears and you’re in 3-D, and actually looking pretty terrific today. Macular degeneration.”
How do you as a doctor interact with and listen to your patients to see the person behind the patient number, CPT code, DRG, RVU, ICD code? How do you find the time? And what could our institutions do to give patients’ stories their proper place?