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Explaining Uncertainty: Compassionate Dialogue Helps Emergency Department Patients Navigate the Unknown

01/18/19

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By Jessica Stein Diamond

Patients who are discharged from an emergency department without a definitive diagnosis all too often feel frightened, frustrated, confused, and anxious.

“Though to me it feels like the best news to tell a patient at discharge is that all the testing is negative, ruling out an initial possible set of diagnoses, many patients feel this is the worst news possible,” says Kristin Rising, MD, MSHP, director of Acute Care Transitions in the Department of Emergency Medicine (ED) at Jefferson. Dealing with uncertainty can be vexing for the one-third of patients discharged from the ED with a symptom-based diagnosis, such as chest pain or abdominal pain; this often happens due to negative or inconclusive test results, because their symptoms are likely to resolve on their own or with outpatient care, or because a definitive diagnosis requires more time and testing.

“Having no idea of what’s to come can be debilitating,” says Rising. “While we can’t take away uncertainty or give a diagnosis when there isn’t one, we can potentially help patients manage that uncertainty better.”

Her novel research, focused on the perspectives and expectations of patients discharged with diagnostic uncertainty, points toward ways to communicate more effectively with them to address their unmet needs. These findings are likewise shaping new methods for resident training, plus the development of new patient screening tools to improve communication in emergency medicine with relevance for other specialties likewise involving diagnostic uncertainty.

Returning for a Diagnosis

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“Patients have repeatedly told me that their primary need and what drives them to return to the emergency department is to get a definitive diagnosis,” Rising says. “Otherwise, they wonder, ‘What do I do about my symptoms? Is it safe to travel? Can I return to work? Will I make my family members sick? Or does this mean I’ll be dead in two days?’”

Even when an ED doctor explains upon discharge that testing has ruled out serious issues—the chest pain isn’t a heart attack, the headache isn’t brain cancer—not having a diagnosis can spur patient dissatisfaction and prompt unnecessary, costly, and time-consuming return ED visits.

Rising’s 2018 paper, “Patient-Identified Needs Related to Seeking a Diagnosis in the Emergency Department,” in the Annals of Emergency Medicine, offers thematic insights gleaned from a medical anthropologist’s in-depth qualitative interviews with 30 patients nine days after discharge without a definitive diagnosis from Thomas Jefferson University Hospital. The paper examines what patients specifically want, even when a diagnosis isn’t possible, so doctors can address unmet needs such as guidance on how to treat discomfort and steps to take in case of nonresolution.

Five Minutes or Less

“Too often there isn’t sufficient attention given to the discharge communication because of the belief that there’s nothing to really tell the patient other than that ‘everything looks fine.’ Yet patients without a clear diagnosis need as much if not more attention at discharge than patients with a clear diagnosis,” says Rising. “For most patients, this discharge conversation would only take five minutes or less. Patients need to understand that they have been clearly thought about and cared for, that appropriate testing has been done, and that they have a plan moving forward for how to care for themselves and how to pursue any further testing that might be needed.”

Rising is currently leading a team of researchers, clinicians, and education experts at Jefferson and Northwestern University who are evaluating components of effective discharge conversations. As part of a three-year study funded by the Agency for Healthcare Research and Quality (AHRQ) in 2017, they have developed and validated a discharge communication checklist. Checklist items include validating symptoms, acknowledging there isn’t a clear diagnosis, discussing next steps for self-care and testing, and defining what should prompt a return ED visit.

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Jefferson’s Center for Teaching and Learning is currently developing this checklist into educational tools and discharge simulation cases to train emergency medicine residents. And in 2019, 70 emergency medicine residents at Jefferson and Northwestern University will be trained to use the checklist for more effective discharge conversations.

Another paper, published by Rising in 2018 in the Journal of Health Psychology, features the 30-item “Uncertainty Scale” (U-Scale) she developed for patients discharged with symptom-based diagnoses. The scale can be used to quantify patient uncertainty levels and to define specific concerns related to symptom severity, treatment, and logistical impacts on family and work. So far, the scale has been tested with 200 patients at Jefferson. Rising hopes to refine this further with diverse populations at other U.S. health systems.

Although neither the discharge checklist nor U-Scale can be shared while they’re being evaluated and refined, both promise to improve communication and symptom definitions so clinicians can better help patients cope with uncertainty.

“Our ultimate goal is to help patients have a more successful transition back home, and help them feel comfortable, safe, and adequately cared for,” Rising says. “We’re getting back to communicating with the person as a whole instead of as a symptom that’s undergoing testing.”