Communicating prognosis with parents of critically ill infants: direct observation of clinician behaviors

OBJECTIVE: Delivering prognostic information to families requires clinicians to forecast an infant's illness course and future. We lack robust empirical data about how prognosis is shared and how that affects clinician-family concordance regarding infant outcomes. STUDY DESIGN: Prospective audiorecording of neonatal intensive care unit family conferences, immediately followed by parent/clinician surveys. Existing qualitative analysis frameworks were applied. RESULTS: We analyzed 19 conferences. Most prognostic discussion targeted predicted infant functional needs, for example, medications or feeding. There was little discussion of how infant prognosis would affect infant/family quality of life. Prognostic framing was typically optimistic. Most parents left the conference believing their infant's prognosis to be more optimistic than did clinicians. CONCLUSIONS: Clinician approach to prognostic disclosure in these audiotaped family conferences tended to be broad and optimistic, without detail regarding implications of infant health for infant/family quality of life. Families and clinicians left these conversations with little consensus about infant prognosis.