6 notes on talking to patients about an unknown diagnosis

Nearly 25 million Americans are living with a rare disease or disorder, according to the Undiagnosed Diseases Network. A result that comes back as an unknown diagnosis is something physicians may struggle to explain to patients for fear of losing their trust, Medscape reports.

The unavoidable conversations about an unknown diagnosis that all physicians must have with patients at some point throughout their careers is what prompted Gordon Schiff, MD, a patient safety researcher at Harvard Medical School and Brigham and Women's Hospital in Boston, to put together a team and identify the best ways to go about doing so. 

Researchers spoke to patient advocates, physicians, patients and other experts to determine the critical components of a conversation like this and developed six strategies: 

  1. If there is not a diagnosis, say that and also explain what the most likely diagnosis could be along with any alternatives if there is not much certainty. 
  2. Explain what next steps will entail. 
  3. Detail any limitations a next-step test or examination may have.
  4. Clarify an expected time frame for their recovery from what they are experiencing based on the knowledge you do have. 
  5. Clearly explain how they can contact you going forward.
  6. Listen to their reaction to what you've shared with them. Respond to questions.

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