A Process to Facilitate Decision Making in Pediatric Stem Cell Transplantation: The Individualized Care Planning and Coordination Model

Providers of care for children undergoing stem cell transplantation (SCT) skillfully combine the roles of scientist and clinician. As scientists, they apply scientific methods and disease theory in the creation and testing of new therapies and in the careful observation and exploration of treatment outcomes. As clinicians, they are capable of intuitively delivering care in a patient- and family-centered context of meaning and life values.The specialty of SCT has inherent aspects that make treatment decision making complex and potentially contentious. Having a strategy ready to implement in advance or at the time when treatment decisions need to be made will facilitate and enhance the decision making process for both the health care team and family members. Here we introduce the individualized care planning and coordination (ICPC) model as a practical approach to facilitate ethical and effective decision making in pediatric SCT settings. The ICPC is a 3-step model comprising (1) relationship—understanding the illness experience from the perspective of the patient and family, sharing relevant information, and assessing ongoing needs; (2) negotiation—prognosticating, establishing goals of care, and discussing treatment options; and (3) plan—generating a comprehensive plan of care that includes life and medical plans. Based on a foundation of a care of competence, empathy, compassion, communication, and quality, the ICPC model aims to diminish contentious family–staff interactions that can lead to mistrust and help guide treatment decision making. The ICPC model enhances communication among patients, families, and clinicians by revealing patient and family values and medical and quality-of-life priorities before reaching or even during critical decision points in the transplantation process.