The greatest Christmas present ever: Empathetic active listening in diagnosis

Anne Dodge had lost count of all the doctors she had seen over the past
15 years. She guessed it was close to 30 of them.

Anne is in her thirties, with sandy brown hair and soft blue eyes. She grew up in a small town in Massachusetts, one of four sisters. No one had had an illness like hers. Around age 20, she found that food did not agree with her. . Anne lost her appetite and had to force herself to eat; then she'd feel sick and quietly retreat to the bathroom to regurgitate. Anne's health continued to deteriorate, and the past 12 months had been the most miserable of her life. There were also signs that her immune system was failing; she suffered a series of infections, including meningitis. She was hospitalized four times in 2004 in a mental health facility so she could try to gain weight under supervision.

By December, Anne's weight dropped to 82 pounds. Although she said she was forcing down close to 3,000 calories, her internist and her psychiatrist took the steady loss of weight as a sure sign that Anne was not telling the truth.

That day Anne was seeing Dr. Myron Falchuk, a gastroenterologist. He began to question, and listen, and observe, and then to think differently about Anne's case. And by doing so, he saved her life, because for 15 years a key aspect of her illness had been missed.

He had said, at the beginning, with a gentle smile, "let's go back to the beginning. Tell me about when you first didn’t feel good. I want to hear your story, in your own words. She told him the whole story. As she spoke, Dr. Falchuk would nod or interject short phrases: "Uhhuh," "I'm with you," "Go on."

Dr. Falchuk had begun their conversation with a general, open-ended question about when she first began to feel ill. "The goal of a physician is to get to the story, and to do so he has to understand the patient's emotions," Dr. Roter said. Dr. Falchuk immediately discerned emotions in Anne that would inhibit her from telling her tale. He tried to put her at ease by responding sympathetically to her history. He engaged her by indicating that he was listening actively, that he wanted to hear more. His simple interjections — "uh-huh, I'm with you, go on”"— implied to Anne Dodge that what she was saying was important to him.

A month later, she said he'd given her the greatest Christmas present ever – an accurate diagnosis. She had gained nearly 12 pounds. And she dared to think that maybe one day she would be, as she put it, "whole" again.

His questions, exam, and tests had revealed that she had celiac disease. This is an autoimmune disorder, in essence an allergy to gluten, a primary component of many grains. Once believed to be rare, the malady, also called celiac sprue, is now recognized more frequently thanks to sophisticated diagnostic tests.

Advice to people with puzzling symptoms: Find a doctor who will hear your whole story.

Read another diagnostician’s active listening story, or read the source, Dr. Jerome Groopman's newest book, How Doctors Think.