Although approximately 90% of children diagnosed high grade brain tumors will die within 2 years of diagnosis, many receive aggressive, futile treatments that negatively influence their quality of life at EOL. Parents are responsible for palliative care and end of life care (PC/EOL) decisions for these children, and they suffer from emotional distress, uncertainty about available options, decisional regret, false hope that focuses on cure rather than palliation, and dissatisfaction with health care provider communication. Health care providers confirm difficulties in communicating with these parents, partly because of their inability to effectively implement communication strategies early in the treatment trajectory. A national priority for health care providers is to initiate early and compassionate communication about PC/EOL for children with a poor prognosis, such as those who are diagnosed with a high-grade brain tumor. Communication about prognosis and advanced care planning is critical to empowering parents to make difficult decisions about PC/EOL for their children. This single-group study aims to refine and pilot test a PC/EOL communication intervention titled, Communication Plan: Early through End of Life (COMPLETE). COMPLETE is designed to be delivered within routine clinic visits and features: (a) a physician-nurse (MD/RN) team approach to PC/EOL communication;(b) written decision maps and parent resource forms indicating both treatment and PC/EOL options;and (c) hope- sustaining and non-abandonment messages tailored by the MD/RN team to their communication style and the parents'need for information. This study includes two phases. Phase I, the standardized protocol and training procedures will be developed, using PC/EOL-expert- and bereaved-parent consultants'feedback. In Phase II, acceptability and receptivity of the COMPLETE will be evaluated by 24 parents and 3 MD/RN teams. Also, we will evaluate parental outcomes regarding the COMPLETE's influence on: (a) information needs, emotional needs/resources, appraisal of MD/RN information, and appraisal of symptom management over time;and (b) parental distress, uncertainty, decision regret, hope, satisfaction with MD/RN communication, and advance care planning over time. Findings from this study address NIH priorities related to: 1) an underserved population (i.e., parents of children with brain tumors);2) an under-examined ethical concern about early integration of PC/EOL communication for parents of children with poor prognosis;3) improved communication about PC/EOL among physicians, nurses, and parents;and 4) the potential for changing health care practice.
Having a child diagnosed with a cancer that has a poor prognosis is a highly stressful situation and one in which parents need to make very difficult decisions about care. This study may help health care providers learn ways to provide timely information in sensitive ways in order for parents to make decisions regarding starting and/or ending treatments, and advanced care planning.