"I don't think it should take you three days to tell me my baby is dead." A case of fetal demise: unintended consequences of immediate release of information

J Am Med Inform Assoc. 2023 Jun 20;30(7):1301-1304. doi: 10.1093/jamia/ocad074.


The 21st Century Cures Act (Cures Act) information blocking regulations mandate timely patient access to their electronic health information. In most healthcare systems, this technically requires immediate electronic release of test results and clinical notes directly to patients. Patients could potentially be distressed by receiving upsetting results through an electronic portal rather than from a clinician. We present a case from 2018, several years prior to the implementation of the Cures Act. A patient was notified of fetal demise detected by ultrasound through her electronic health record (EHR) patient portal before her clinician received the result. We discuss the patient's ensuing complaint and healthcare system response. This unusual and dramatic case of fetal demise is relevant today because it underscores the importance of involving a patient and family advisory council in decision-making. It also highlights the value of "anticipatory guidance" as a routine clinical practice in this era of immediate access to test results.

Keywords: 21st Century Cures Act information blocking regulations; anticipatory guidance; automated release of test results; fetal demise; open test results; patient-family centered care (PFCC); unintended consequences of transparency.

Publication types

  • Case Reports

MeSH terms

  • Electronic Health Records*
  • Female
  • Fetal Death*
  • Humans