Perceptions on good death among parents of pediatric patients with hematology-oncology disease in advance.

Abstract

e21532 Background: It is difficult to perceive the preparation of a good death for children because of its social and cultural issues. Among the children with serious diseases, they can be alienated and the whole processes are done by the decision of the parent's proxy even when they have to prepare for death. The purpose of this study was to examine the perception of "Good Death" in advance among parents of pediatric patients with hematology-oncology diseases. Methods: We conducted a cross-sectional survey to parents of pediatric patients in Kyungpook National University Children’s Hospital. Participants were recruited from the outpatient department of pediatric hematology and oncology. The Good Death Inventory (GDI), a tool developed for the perspectives of end-of-life care from bereaved family members, has a total of 54 items, including 30 in 10 core domains and 24 in 8 optional domains. Higher GDI scores mean better quality of death. A total of 109 questionnaires were analyzed using SPSS 23.0. Results: Most patients were diagnosed with hematology (48%), followed by leukemia and lymphoma (31%), and solid oncology (21%). Patients had diagnosed with diseases 3.7 years ago. Among the characteristics of parents, parents who did religious activity had significantly higher optional GDI score (p = .048). Among the characteristics of patients, female patients had significantly higher optional GDI score (p = .041). Optional GDI score of middle school or higher patients was significantly higher than preschool patients (p = .010). Patients with good perceived health status patients had significantly higher scores in GDI core, optional, and total (p = .048, .044, .013). Patients who had discussed their end-of-life plan with parents or others had significantly higher GDI total scores (p = .045). Parents who agreed with having patients’ living will had significantly higher GDI optional and total scores (p = .012, .026). Patients who already had living will had significantly higher GDI total score (p = .036). Interestingly, parents who wanted to receive all possible treatments to prolong life for their children had higher GDI core score (p = .054). Conclusions: Discussing a living will as well as a willingness to treat would be important for care. To improve quality of life and decreasing the disease stress burden, individualized and multidisciplinary education should be performed regularly.