Communication Challenges: A Spotlight on New-Onset Refractory Status Epilepticus

New-onset refractory status epilepticus (NORSE) is a rare, potentially devastating condition that occurs abruptly in previously healthy patients of any age but most commonly in children and young adults. It has an unpredictable clinical course requiring immediate, often prolonged, critical care support with multiple specialists involved and frequently results in severe life-altering sequelae or death. Communication in NORSE is challenging because its etiology in a given patient is initially unknown (and often remains so), the clinical course and outcome are unpredictable, and many health care team members are involved in the care of a patient. We address the communication challenges seen in NORSE through proactive communication on 3 levels: (1) in the shared decision-making process with the family, (2) within an individual hospital, and (3) across institutions. Intentional organizational change and enhanced information dissemination may help break down barriers to effective communication. Key initiatives for enhancing information dissemination in NORSE are (1) the identification of a most responsible physician to integrate information from subspecialties, to communicate frequently and candidly with the family, and to provide continuity of care over a prolonged period of time and (2) the early involvement of palliative care services alongside ongoing therapies with curative intent to support families and the medical team in decision making and communication.