Physician-Family communication in new-onset refractory status epilepticus (NORSE): Communicating when there are few answers.

New-Onset Refractory Status Epilepticus (NORSE) and its sub-type, Febrile Infection-Related Epilepsy Syndrome (FIRES) is a profoundly challenging condition due to its rarity, diagnostic and prognostic uncertainty, and outcomes with high morbidity and mortality. While prior research has focused primarily on treatment strategies and outcomes in the acute phase, little attention has been given to how physician-family communication shapes clinical decision-making, long-term patient and family outcomes, and medical research. NORSE is characterized not only by its acuity but also by being an evolving and unpredictable condition. Parents have stated that they were not fully informed of their children's dire medical conditions which often led to their feelings of mistrust of the medical team and poor discharge planning. If families turn away from established medicine because of poor communication and lack of trust in the medical team, the natural history of NORSE will remain unknown. Prognoses will continue to be nonspecific and unreliable if families do not communicate back to the medical establishment their experiences in the long term. The goal of Physician-Family communication is trust. Communication must be team-based, with the team made up of the physician leading the case, the family and the specialists involved so that all viewpoints can be heard. Communication must be frequent, and what is known and what remains uncertain be openly discussed. Parents require full, candid information to make the best, informed decisions for their children. As examples, five parents tell in their own words what they needed to know from their doctors to understand and plan for NORSE.