[Our Experience of Providing Home End-of-Life Care for a Child with a Brain Tumor - Overview of Issues Including Environmental Adjustment and Family Care].

2015 
We provided home end-of-life care to a child with a brain tumor. As cases of children with malignancies who receive such care have rarely been described in Japan, we report our experience with this patient.An 11-year-old previously healthy boy was found to have a brainstem glioma in December X. The tumor was reduced by radiotherapy and chemotherapy, but relapse was noted in August X plus 1. Best supportive care alone was selected for this patient. Before the initiation of home care, we consulted a designated hospital for pediatric cancer treatment in the area and requested a case- worker from the child/home section in his resident area. As the patient was too young for long-term care insurance, we immediately applied for a physical disability certificate to augment welfare support. After the initiation of home care, swallowing function diminished markedly, but we provided guidance on dietary contents and suction, allowing continued oral ingestion by prioritizing his and his family's wishes. In January X plus 2 of the following year, his respiratory condition worsened after the development of aspiration pneumonitis, and he died at home.We advocate the establishment of a regional network so that children with brain tumors can receive end-of-life care at home.
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