Article Image

Why We Should Tell Patients Their Illnesses Are Stories

The mother’s eyes, fierce and tearful, met mine. I wasn’t surprised she was angry. Her daughter lay nearby, hands and feet uncomfortably swollen, hot with fever, her 3-year-old body covered with red blotches, their centers dusky.

“I just want to know what this is,” she lamented. “Everyone has told me something different. The first doctor said hives, the next something called something-multiforme, the next said an infection in her joint, and now something called serum reaction. What is actually wrong with my kid?”

I was the fifth doctor in five days to care for her daughter. I alone had the advantage of seeing her at the end of her illness.

The mother recounted the week’s march of maladies: first, the blotchy rash that came and went; next, the fevers; then, the swelling of her hands and feet; finally, the rash spreading and becoming almost purple. She scrolled through the series of pictures on her phone—they could have been from a textbook.  

Her daughter’s progression of bothersome symptoms were typical for serum sickness-like reaction, a consequence of the antibiotic she’d recently taken for an ear infection, and a classic pediatric ailment. The mother was skeptical of my immediate certainty. 

“Are you sure that’s it? And all the other doctors missed it?” she asked with a frustrated glare.

Patients often arrive at the academic children’s hospital where I work after seeing several other health care providers in the community. Thus, I frequently hear such sentiments as: 

“The last doctor said her ears looked normal!”

“Why didn’t the last doctor do that blood test?”

“I’m glad someone finally got it right.”

Sometimes there is a miss: the right history wasn’t elicited, an exam finding was overlooked, the correct test was not done, etc. But much more often, nothing was “missed” and the perceived mistake in diagnosis is really just due to the progression of illness. 

Illnesses are stories—their plots unfold, symptoms enter like characters, with our bodies as the setting. All have a beginning, a middle and an end. Some are thrillers: quick, flashy, and splashed with blood. Others are lengthy academic tomes: with a slow build. Many are like mystery novels: subtle clues building until the culprit becomes clear.

I had entered this girl’s illness story at its end, seeing it all laid out, able to sum up the case as succinctly as Hercule Poirot at the end of an Agatha Christie novel. But like the girl’s previous doctors, if I’d only gotten to read a few beginning lines, or a chapter smack in the middle—I would probably not have gotten the plot right.

I tried to explain this to the mother—how at each point in its story, serum sickness-like reaction can look just like a number of other common illnesses, such as hives, urticaria multiforme, rheumatic fever, and endocarditis. Each doctor was not truly wrong; they just didn’t have all the information yet. She understood easily and seemed to finally relax. 

She made me ponder. We routinely teach our trainees the typical story arcs of common illnesses - the migration of pain rightward and shuffled walk of appendicitis, the prolonged fever and cracked lips of Kawasaki disease, the sporadic march of tremor and double vision of multiple sclerosis. Could we do a better job teaching illness stories to our patients and their families? Is this aspect of health literacy neglected? 

While it could be unwieldy to teach patients detailed differential diagnoses, and unwise to scare them with every possibility that their fever or joint pain may involve into, I’ve found the following simple metaphor well-received:

“Much like a tree, illness can branch in different directions. When you are at the trunk, it can be difficulty to know along which branch your illness will travel. This is why it’s important to get back in touch if your illness worsens or changes, ideally to whoever saw you at its start.”

Being more explicit with patients about progression of illness has potential to help in several ways. With better understanding of what to expect, patients might avoid unnecessary visits and only come in when the plot seems to be twisting: when the routine cold causes labored wheezy breathing; when the abdominal pain assumed to be a stomach bug worsens and moves to the right lower side; or when the three days of fever and fatigue thought to be influenza continue another 10 days. 

Patients may also see how continuity of care encourages correct diagnoses. While multiple opinions can sometimes be helpful, too often they create confusion. With many readers at different points in their illness stories, patients get diagnosed based only on snapshots. If the same doctor reads the whole story, she is more likely to get it right. 

And when we find ourselves listening to our patients complain about how wrong the last three doctors were, we can give our colleagues grace, knowing they may have only had a few sentences of sickness to read. 

Julia Michie Bruckner, MD, MPH is a pediatrician, mother, survivor of recurrent cancer, writer and 2018-2019 Doximity Author. You can find her at www.juliamd.com and @JuliaMDWriter.

More from Op-Med