Defining Roles in Pediatric Palliative Care: Perspectives From Oncology and Palliative Care Teams

Early integration of pediatric palliative care (PPC) is associated with improved symptom management, quality of life, and healthcare utilization for children with cancer. Despite this, variation persists in how PPC is understood, operationalized, and integrated within pediatric oncology programs. In particular, ambiguity surrounding the roles of oncology teams providing generalist palliative care and specialist PPC teams may contribute to delayed or inconsistent involvement.

We conducted a qualitative study using a grounded theory approach as part of a larger multi-site project examining barriers and facilitators to early PPC integration in pediatric oncology. Semi-structured interviews were conducted with healthcare professionals from four Canadian pediatric centers, including oncologists, PPC physicians, nurses, social workers, and other interprofessional team members. Interviews explored definitions of PPC and perceived roles and responsibilities of oncology and PPC teams. Transcripts were coded iteratively using constant comparative analysis until thematic saturation was reached.

Participants from both oncology and PPC teams demonstrated substantial concordance in defining PPC as holistic, family-centered care focused on quality of life, symptom management, psychosocial support, and goal-concordant decision-making. Both groups described overlapping responsibilities, particularly in symptom control and psychosocial care. However, specialist PPC teams identified additional roles including complex serious illness communication, bereavement support, funeral planning, and 24/7 availability that oncology teams did not consistently recognize as part of their role. Participants emphasized that PPC roles are fluid and context-dependent, shifting across disease trajectory, care setting, family needs and goals, and institutional resources.

In pediatric oncology settings, overlap between generalist and specialist PPC reflects collaborative care rather than duplication. However, a lack of shared role clarity may impede timely specialist PPC involvement. Developing shared frameworks, institutional definitions, and ongoing interdisciplinary communication may support earlier, coordinated, and family-centered PPC integration for children with cancer.