Effects of a unique pediatric hematology-oncology palliative care program on medical decision-making and communication between healthcare providers and families: Results of a supportive care survey

Purpose: The purpose of this study was to evaluate family satisfaction with an embedded pediatric hematology-oncology (Hem-Onc) palliative care program and its decision-making tool (DMT). A secondary aim was to identify factors that play an important role in family medical decision-making. Methods: Families were asked to complete a self-administered questionnaire within 4 weeks of participating in a Supportive Care Team (SCT) conference and receiving a DMT. Results: Twenty parents or guardians of pediatric Hem-Onc patients participated in the study. All of the patients had approached a major treatment-related change; all of the study participants had attended a SCT medical decision-making conference and received a DMT. The most important considerations to the study participants regarding treatment decisions were their child's quality of life, their child's chance of improving, perception of their child's wishes, and the hospital staff's advice. Of the people and services that were most useful in guiding medical decision-making, 100% reported that nurses, 95% reported physicians, and 90% reported the SCT helped guide treatment decisions. Ninety percent of those surveyed remembered receiving the DMT, found it to be clear and straightforward, and thought that it improved communication between the family and the healthcare providers. Conclusions: These findings suggest an embedded pediatric Hem-Onc supportive care program (SCP) and use of a DMT facilitate effective communication between families and healthcare providers, and provide families with adequate decision-making support.