Advance Care Planning Conversations in Pediatric Patients with Refractory Oncologic Disease

Abstract

Advance care planning (ACP) involves longitudinal communication between the patient and physician to explore the patient’s wishes and goals while relaying accurate diagnostic and prognostic information to support informed and shared medical decision-making. In pediatrics, it also uniquely involves the parents or legal guardians as the primary medical decision-makers. ACP ideally leads to the implementation of advanced directives (ADs) and can be a difficult concept to discuss with pediatric patients and families with refractory oncologic disease, given the distinctive burdens that accompany this population. Many obstacles can delay the initiation of these conversations with these families, although existing literature supports beginning ACP conversations at the time of initial diagnosis and treatment. Parents or legal guardians often serve as the sole decision maker for pediatric patients but there has also been a shift in the literature to include children/adolescents in conversations regarding ADs and other aspects of end-of-life (EOL) care, an essential aspect of patient-centered ACP. This guidance is unfortunately not often translated into clinical practice. In this review, we aim to define and discuss the current status, obstacles, and benefits surrounding early initiation of ACP conversations with children or adolescents with advanced cancer and their families. We also discuss how physicians and the medical team, including pediatric palliative care, can increase the degree of pediatric patient involvement in ACP and EOL discussions, as developmentally appropriate, and mitigate delays in discussing ACP with these families and patients.