he official reason for my patient’s visit, according to her electronic medical chart, was fatigue, though that was far from her only concern.
In the exam room, this usually upbeat woman had a sad tale to tell. Several months earlier, a close relative fell seriously ill and my patient, elderly and not in great health herself, became a caregiver. The relative’s grueling treatment proved unsuccessful and he died. Following the funeral, my patient was overwhelmed by exhaustion, grief, and guilt. To make matters worse, the relative’s death exposed some long-submerged family tensions.
An interview and physical exam confirmed what we both already knew: My patient’s fatigue was more emotional than physical. In fact, at the end of our visit, she said that just describing what she’d been through made her feel better. I left the exam room feeling better myself. Hearing my patients’ stories and using those stories to help them heal is, for me, the most gratifying part of practicing medicine.
My warm feelings vanished as I sat down to document the visit. While I’ve used an electronic medical record for several years, Epic, the system my hospital recently adopted, makes recording stories such as the one my patient shared especially difficult. Her grief and her fatigue, which are inseparable in reality, Epic treats as different problems. That she lives alone and there’s conflict in her extended family, which are also inextricable from her symptoms, must be filed under a tab marked “Social Documentation.”
Epic features lists of diagnoses and template-generated descriptions of symptoms and physical examination findings. But it provides little sense of how one event led to the next, how one symptom relates to another, the emotional context in which the symptoms or events occurred, or the thought process of the physician trying to pull together individual strands of data into a coherent narrative. Epic is not well-suited to communicating a patient’s complex experience or a physician’s interpretation of that experience as it evolves over time, which is to say: Epic is not built to tell a story.
The software is made by Epic Systems, based in Verona, Wis. It is the most widely used electronic health record in America, employed by more than half of large hospitals as well as many outpatient clinics. This can be good for patient care by enabling the sharing of medical information. For example, I regularly receive medical updates on a patient of mine who spends winters in California and sees several doctors there who use Epic.
The fact that Epic gathers a patient’s medical information, correspondence (between doctor and patient and among the patient’s doctors), and billing information in one place should, in theory, make medical care safer, less costly, and less fragmented.
But the problem-list format that Epic uses to organize medical information is, in itself, fragmented. The risk of this format, as physician and medical informatics expert Dr. Robert Wachter points out in a blog post, is that we may forget that “patients are more than the sum of their problems.”
A medical record that abandons narrative in favor of a list does more than dehumanize our patients. It also hampers a clinician’s diagnostic abilities. Take a patient I saw recently, a middle-aged woman with palpitations. She was perimenopausal, stressed out at work, having trouble sleeping, drinking lots of coffee to stay awake during the day, and had a family history of heart disease. Any one of those issues might explain her palpitations, but more likely some combination of interrelated factors was causing them. Sorting out the story is crucial to deciding which tests to order and what treatment to recommend.
(Ironically, an “epic” is a story, a long narrative like the “Iliad” or the “Odyssey.” Epic uses literary terminology throughout its branding: The tablet platform is “Canto,” and the smartphone version is “Haiku.” It seems some gentleman or gentlewoman of Verona has a literary sense of humor.)
For centuries, medical information has been documented by clinicians in the form of case reports, narratives that are similar in structure to other kinds of stories. Like stories, case reports include a protagonist (the patient), a sequence of events leading to a crisis (the illness), a backstory (the past medical history), and a resolution or denouement (the clinical outcome). The important role of stories in medicine is increasingly being recognized — there’s now even a discipline called narrative medicine that helps train clinicians to better gather and interpret their patients’ stories.
The story of Cinderella, for example, can quite easily be presented as a “case”: a young woman suffers a series of misfortunes and finally arrives at a happy ending. But imagine telling that story Epic-style: The problem list would include: Poverty, Soot Inhalation, Overwork, and Lost Slipper. Look for the wicked stepsisters under Social Documentation.