Palliative Care Principles and Advance Care Planning in Pediatric Oncology: Prospective, Longitudinal Investigation of Communication Across the Illness Trajectory (RP407)

Abstract

•Describe the evidence from a growing body of literature demonstrating the benefits derived from earlier integration of palliative care principles and advance care planning in the context of cancer care, as well as the barriers to discussion of these sensitive topics.•Discuss the value of studying prognostic communication, including discussion of palliative care principles and advance care planning, through qualitative analysis of conversations between clinicians, patients, and families recorded at high-intensity time points (e.g., disease reevaluation discussions) across the illness trajectory.•Describe the timing and content of discussion related to palliative care principles and advance care planning across the illness trajectory for children with high-risk cancer as found in this study, as well as review the commonalities that emerged regarding linguistic style, context, and prompts for discussion of these sensitive topics. In the field of medical oncology, palliative care principles and advance care planning are often discussed late in the illness trajectory, limiting the time available for nuanced discussions to guide goal-concordant care. Presently, the timing, frequency, context, and content of these critical discussions in the setting of pediatric cancer is not well understood. To determine the frequency and timing of pediatric palliative care and advance directive discussions across the progressive illness course for children with progressive cancer and their families; to explore the linguistic styles/strategies used to introduce these sensitive topics and explore the statements that precede or prompt discussion. Serial disease reevaluation conversations between pediatric oncologists, children with progressive cancer, and their families were recorded across the illness trajectory. Following codebook development, mixed methods analysis of audio-recorded medical dialogue was conducted using MAXQDA software. Approximately 38 hours of prognostic communication conversations were recorded for 16 patient-parent dyads across months to years, out of which a total of 44 minutes (2%) involved discussion related to palliative care principles or advance directives. Advance directives were discussed less frequently than palliative care principles, with 7 minutes' worth of coded dialogue (0.3% of total recorded dialogue). The vast majority (98%) of dialogue occurred following significant disease progression while on study. The most frequent codes were quality of life, palliative chemotherapy, and goals of care. Common linguistic patterns emerged in the conveyance of these topics, along with similar contexts prompting discussion. Palliative care principles and advance directives are discussed infrequently across the disease course for children with high-risk cancer. When discussed, patterns emerge regarding linguistic style, context, and prompts.