Grant R21CA198049

Pediatric Cancer Interdisciplinary Team Training for Regoaling CARE Discussions

DESCRIPTION (provided by applicant): How can we improve the care of patients with intractably advancing terminal cancer, compassionately and effectively transitioning them from disease-directed therapy to palliative care? We propose to study the ways in which interdisciplinary pediatric oncology teams regoal, shifting from providing treatment with a curative intent to acknowledging that cure cannot be attained and instead counseling patients and parents to pursue treatments that aim to minimize symptoms and maximize quality of life during the remaining lifetime of the patient. We do so guided by the premise (based in part on published research findings as well as our extensive clinical experience) that this regoaling process often does not occur in a coordinated manner for every member within these interdisciplinary teams, resulting in the delivery of mixed messages to pediatric patients and their parents (or guardians), which in turn inhibits the process of regoaling for the patients and parents. We will perform this study using a mixture of quantitative and ethnographic methods, and will do so within the framework of training several interdisciplinary teams to engage in structured conversations that will facilitate regoaling when new adverse diagnostic or complication information regarding patients arises, information that may be available at the time of diagnosis (such as the diagnosis of a uniformly fatal brain tumor), at the time of a cancer relapse or the development of a major complication, or when contemplating enrollment into a phase 1 trial. Regoaling, as we have found in our studies of parental decision-making regarding pediatric patients with cancer and other life-threatening illnesses, is a cognitive, emotional, and relational process. The theoretical framework we have developed regarding regoaling provides a conceptual model for how to structure conversations to facilitate reassessment and regoaling. In this proposal, we are applying the regoaling framework not to parents (or patients) but rather to the changes that need to occur within interdisciplinary team members, and their interactions with each other, to facilitate the team's process of regoaling. Our focus on oncology team regoaling complements two other approaches that facilitate the use of palliative care by patients with advanced cancer, namely training clinicians to have conversations with patients, and embedding palliative care consultations into the care processes.