Current status of pediatric palliative care and decision making in Japan

Abstract

Specialized pediatric palliative care (PPC) in Japan evolved primarily to care for children with cancer. As a result, the system for providing PPC to pediatric cancer patients is much more advanced than systems for non-cancer patients with life-limiting diseases. About 40% of pediatric cancer patients die at home, while most non-cancer patients die in the hospital under intensive care. In Japan, the wishes of the family tend to precede the children in decision-making for children who lack decision-making capacity. This is true even for adolescents whose medical treatment decisions may not fully reflect the wishes and preferences of the teen patients. There are efforts to empower adolescents to participate in shared decision making.