Clinician Identified Barriers and Strategies for Advance Care Planning in Seriously Ill Pediatric Patients

Abstract

CONTEXT: Parents desire more opportunities for advance care planning (ACP), however, large-scale adoption of ACP for seriously ill children remains unrealized. Little is known about current approaches to ACP and strategies to circumvent existing barriers to ACP provision. OBJECTIVE: To explore multidisciplinary clinician perceptions about perceived barriers and strategies to improve ACP provision. DESIGN: Qualitative study including focus groups conducted with multidisciplinary clinicians at two centers from December 2018-April 2019. Iterative multi-stage thematic analyses were utilized to identify key contexts and themes pertaining to current approaches to ACP, as well as clinician perspectives on ACP barriers and improvement strategies. RESULTS: Thirty-five clinicians (physicians, nurses, and psychosocial clinicians) participated in identifying both clinician and perceived patient and family barriers to initiating and engaging in ACP discussions, including mixed messaging, lack of knowledge of patient and family goals, prognostic uncertainty, poor prognostic awareness, unstandardized documentation, and family dynamics. Clinicians also identified strategies to overcome these barriers and to facilitate ACP discussions, including enhancing multidisciplinary communication, creation of a shared ACP communication framework, and formal training in ACP communication to normalize ACP throughout a child’s disease trajectory. CONCLUSION: Despite ubiquitous recognition of the importance of ACP communication, various clinician- and parent-level barriers were identified which impede ACP in children with serious illness and their families. Improvement strategies should focus on formal clinician training on how to conduct and document longitudinal ACP discussions to ensure care is aligned with family goals and values.