Christina Ullrich – Dana-Farber Cancer Institute and Boston Children’s Hospital; Harvard Medical School, MA, USA is an Institute Physician in Pediatric Palliative Care and Pediatric Hematology/Oncology and Hematopoietic Stem Cell Transplant (HSCT) and Associate Professor at Harvard Medical School. She is active in clinical care and academic pursuits in both fields, and has a particular interest in the integration of palliative care into the care of children undergoing intense, cure-oriented treatment such as HSCT.
Feature Article
DiDomizio, P. G., Johnson, M., & Friedrich, A. (2024). “Who Has the Relationship?”: Caring for a Shared Population of Children with Medical Complexity. Journal of Palliative Medicine. Embase Daily Updates.
Commentary
This commentary focuses on the work of DiDomizio and colleagues, which explores roles and responsibilities of pediatric complex care (PCC) and palliative care (PPC) in the shared care of children with medical complexity (CMC). These subspecialties have similar approaches to care (e.g., longitudinal care, focus on communication), and potentially overlapping roles (e.g. symptom management, care coordination). A focus on such similar services and a qualitative approach permits the characterization of detailed and nuanced issues in collaborative care in this article.
Shared roles and responsibilities in PCC and PPC programs, with respect to caring for CMC, were explored via semi-structured interviews with PCC and PPC physicians and nurse practitioners caring for this patient population. Respondents practiced at academic medical centers in the Midwestern United States in which both services were available.
Qualitative analysis of interview data revealed roles that fell along a spectrum ranging from complex-leaning (e.g., medical home, care coordination) to palliative-leaning (advance care planning, end-of-life care). None fell solely within PCC or PPC realms. Roles were sometimes determined by institutional or program-based determinants (e.g., availability, formal specification of responsibilities) or clinician factors (e.g., expertise). In addition, roles were defined by relationships between providers and families, with variation between among provider-caregiver dyads within an institution.
These findings have important implications for the growth of PPC as a field through efforts to integrate and collaborate with other services. As a PPC physician seeking to integrate PPC in the bone marrow transplant setting (notably very different from complex care), I appreciate several lessons that are highly relevant to all PPC programs building collaborations with other services.
As subspecialty PPC grows, we are grappling with key questions. How do we ensure access to children who need it? What is uniquely provided by interdisciplinary PPC? What is most valued by patients/ families and collaborating teams? How are existing (and oftentimes limited) PPC resources best used? How do we build effective collaborations with other programs serving the same patient population?
Answers to the last question are essential to the ongoing growth of PPC. For example, data informing role definition and structure of care process to streamline care, minimize role confusion, and optimize deployment of resources is needed. This study highlights that provider-child/family relationships also shape collaborative care. An important implication of this is that strategies to formally define roles must also be tempered with flexibility that honors existing patient/family-provider relationships, harnesses individual clinician strengths, and that meets care needs as they change throughout a child’s trajectory.
Additionally, strong working relationships between clinical and administrative professionals participating in shared care are imperative. Intentionally fostering familiarity and trust through shared social and professional experiences can cultivate effective collaborative relationships.
Bottom line: Ongoing communication between collaborating services and attention to structural, individual, and relational factors impacting shared care are needed, so that together we can meet the complex and evolving needs of children with serious illness.
View the 2025 Issue #3 Citation List in Library