Opening the door to what matters most in advanced childhood cancer.

Abstract

Most children with cancer and their parents want to receive honest, direct information about prognosis, yet pediatric oncologists often avoid or soften prognostic disclosure in the setting of disease progression. This study characterized communication strategies to help clinicians segue from discussing scan results and treatment options to exploring prognosis. In this prospective longitudinal study, serial disease reevaluation discussions between children with advanced cancer, parents, and pediatric oncologists were audio-recorded for 24 months or until the child's death. Inductive content analysis was used to iteratively generate a definition for dialogue that facilitated a transition (i.e., 'opened a door') into discussion about prognosis and goals of care. Transcripts were deductively coded to characterize 'open door' communication, including who initiated the dialogue and the approach used to facilitate this transition. Forty-nine encounters were recorded, comprising > 21 h of dialogue between 17 patients/families and their medical teams across advancing illness. Open door moments encompassed statements or questions that created space to explore evolving illness, prognosis, consideration of non-curative treatment, or goals of care. A total of 154 open door segments occurred in 78 % of encounters (n = 38). Patients, parents, and oncologists each played an active role in initiating open door moments, with oncologists prompting the segue more often (81.2 %) compared to patients (5.2 %) or caregivers (13.6 %). Six discrete communication strategies underpinned open door communication: 1) recognition of suffering; 2) assessment of prognostic understanding; 3) exploration of goals related to quality of life; 4) promotion of agency; 5) reduction of urgency; and 6) acknowledgement of incurable disease. These strategies offer oncologists an actionable roadmap for the difficult task of 'opening the door' to conversations about prognosis and goals of care. These findings will inform future communication skills training initiatives to encourage timely, person-centered prognostic communication in advanced childhood cancer.