Effects of a unique hematology-oncology pediatric palliative care program on medical decision-making and communication between health care providers and families.

Abstract

e19537 Background: In 2005, Rady Children’s Hospital San Diego (RCHSD) instituted a unique hematology-oncology palliative care program that was integrated into the existing Hematology-Oncology Program—not a consulting service. The purpose of this study was to evaluate family satisfaction with the Hematology-Oncology Supportive Care Program and its decision-making tool (DMT). A secondary aim was to identify factors that play an important role in parent/guardian medical decision-making. Methods: Parents or guardians were asked to complete the self-administered Supportive Care Survey within four weeks of participating in a Supportive Care Team Conference and receiving a DMT. Results: Twenty parents/guardians of pediatric hematology-oncology patients who had received care at RCHSD were consented to participate in this study. All of the patients had approached one of the following treatment changes requiring medical decision-making: stem cell transplantation, transition to end-of-life palliative care, or major treatment-related changes. All of the study participants had attended a Supportive Care Team medical decision-making conference and received a DMT. Ninety percent of those surveyed reported they remembered receiving the DMT and found it to be clear and straightforward. Ninety percent of the study participants reported the DMT improved communication between the family and healthcare providers. Eighty-five percent found the Supportive Care Team and physicians explained treatment options, prognosis, and risks/benefits of each treatment appropriately. Regarding treatment-related decisions, 100% of study participants reported that nurses helped guide decision-making, 95% reported physicians played a role, and 90% reported the Supportive Care Team helped guide decisions. Conclusions: The Hematology-Oncology Supportive Care Program and DMT facilitated effective communication between families and healthcare providers, and provided families with decision-making support.