Current status of end-of-life discussions with with children and families with serious illness

2018 Fiscal Year Final Research Report

• Project/Area Number: 16K16623
• Research Category: Grant-in-Aid for Young Scientists (B)
• Allocation Type: Multi-year Fund
• Research Field: Childhood science (childhood environment science)
• Research Institution: National Center for Child Health and Development (2017-2018); Kobe University (2016)
• Principal Investigator: Yotani Nobuyuki 国立研究開発法人国立成育医療研究センター, 総合診療部, 医師 (70593127)
• Project Period (FY): 2016-04-01 – 2019-03-31
• Keywords: アドバンス・ケア・プランニング / 新生児 / 小児神経 / 小児循環器 / 治療の中止・差し控え

Outline of Final Research Achievements

A nationwide survey was conducted to clarify the current status of end-of-life discussions with children and families with serious illness. To clarify the current status of discussions with adolescent patients, a questionnaire survey was conducted for pediatric neurologists and cardiologists. As a result, even in a situation where the prognosis was assumed to be 3 months, both neurologists and cardiologists discussed about advance care planning issues more often with patients’ families than with patients. Among board-certified NICU facilities in Japan, 21% had been sometimes withdrawing life-sustaining interventions (LSI) and 82% had been sometimes withdrawing LSI. Institutional treatment policies can have a major impact on physicians’ values that then affect end-of-life discussions, but do not impact ACP practices.

Free Research Field

小児緩和医療学

Academic Significance and Societal Importance of the Research Achievements

小児領域における医師の終末期の話し合いの現状についてはこれまで報告がなかった。今回の結果は、日本における現状を明らかにした初めての研究である。結果から、思春期患者との話し合いは十分に進んでいない現状が明らかとなった。また、本人の意向がわからない新生児領域における終末期の意思決定において医師の価値観は勤務する施設の方針の影響受ける可能性があることが明らかとなった。これらの結果は、今後小児領域における終末期の意思決定をどのように勧めていくかについての重要な基礎資料となり研究の意義は非常に大きいと言える。