Specialist Palliative Care Service for Children With Life-Threatening Conditions: A Nationwide Survey of Availability and Utilization

Abstract

ContextAccording to the International Observatory on End of Life Care, the level of pediatric palliative care in Japan is Level 2 (capacity building) and the current status of palliative care for children in Japan has not been clarified. ObjectivesThe objective of the study was to clarify the availability and utilization of specialist palliative care services among children with life-threatening conditions in Japan. MethodsA questionnaire was administered to assess the availability of specialist palliative care services among children with life-threatening conditions. All 427 certified regional cancer centers having hospital-based adult palliative care teams, 15 certified children's cancer centers having pediatric palliative care teams, and 368 medical institutions having a certified palliative care unit were surveyed. ResultsFifteen to twenty-one percent of adult palliative care teams and more than 90% of pediatric palliative care teams had experience providing palliative care to children with cancer. By contrast, only 2%–3% of adult palliative care teams and 15% of pediatric palliative care teams had experience providing care for the noncancer population. An estimated 12% of children with cancer in Japan used hospital-based palliative care teams in 2015. Eight children used a palliative care unit in 2015, and of those, seven (88%) had a solid tumor. An estimated 1.3% of children with cancer who died in Japan used a palliative care unit. ConclusionAn estimated 12% of children with cancer in Japan used hospital-based palliative care teams and an estimated 1.3% of children with cancer who died in Japan used a palliative care unit in 2015.