Home-based palliative care for children with recurrent and/or refractory central nervous system tumour

Abstract

Background/Objectives: In response to the unprecedented increase in the elderly population demographic, the Japanese government tries to improve transitions from hospital to home health care mainly to reduce medical expenses. There are increasing number of the institutions providing home-based end-of-life care for adult patients in Japan. Objectives of this paper is to obtain a better understanding of the complications found at home and to ascertain the feasibility of terminal care at home for children with complex problems for recurrent and/or refractory central nervous system (CNS) tumors. Design/Methods: Descriptive and retrospective study of data from both medical and home care charts and also from the written records of interviews with the parents. The palliative home care program is based in the multidisciplinary teams in two university hospitals, and in the local medical clinics whenever available. Tele-consultation is provided as a support service for parents and local professionals. Results: Forty-three patients under the age of 15 years with recurrent/refractory CNS tumours needing specialized terminal care at home were included from April 2007 and March 2016. These included 18 patients with diffuse intrinsic pontine glioma (DIPG), 8 with supratentorial high-grade glioma, 5 with medulloblastoma, 4 with ependymoma, 4 with germ cell tumour, 2 with pineoblastoma, and 2 with malignant rhabdoid tumour. All were cared at home, with palliative chemotherapy. Five patients died at home and thirty-four died in the hospitals mainly depending on the parents’ wishes, partly for inadequate local medical support. Four are alive. Parents found end-stage dyspnea the most worrisome complication to discontinue home care. Conclusion: This study confirms the feasibility of the terminal care at home for children with recurrent CNS tumours. Various complications can be well tolerated by the parents if the medical team is readily available. All the parents considered the time at home as very meaningful even discontinued in the end.