Decision making support in end-of-life care for patients with non-cancer respiratory disease in Japan : a literature review

非がん性呼吸器疾患とともに生きる患者は,増悪と回復を繰り返すたびに機能が低下し,自身の終末期を意識することなく死を迎えることがある.患者は日々の病状に対処することに集中し,将来を見据えた意思決定なく終末期となり,家族は患者の意思を把握できないまま看取りとなり心理的苦痛や葛藤,後悔を伴う.患者とその家族が終末期について考え,病状に応じて意思を伝えることやその人らしく生きることを支援する必要があると考えた.非がん性呼吸器疾患患者のエンドオブライフケアに関する研究は少なく事例検討が散見される.そこで国内外の文献検討により,わが国における非がん性呼吸器疾患患者のエンドオブライフケアにおける意思決定支援の研究動向とその課題を明らかにすることを目的とした.1992年~2020年3月までを範囲とし,医学中央雑誌Web版,CINAHL,MEDLINEを用い,｢非がん(not cancer)｣｢呼吸器(respiratory)｣｢エンドオブライフ(end of life)｣｢Japan｣のキーワードで検索した.分析対象論文は14文献であり,本研究の目的内容に沿って類似性に基づき帰納的に分析した.その結果,｢呼吸困難のケア｣｢患者の意思確認困難｣｢疾患の理解不足｣｢代理意思決定支援での家族の苦悩｣｢意思決定支援のタイミングの遅延｣｢看護師の葛藤｣｢多職種チーム支援の難しさ｣｢意思決定支援ガイドライン作成やシステム構築の必要性｣が報告されていた.増悪に備え,在宅酸素療法や非侵襲的陽圧換気療法を導入する際や急変に備えた患者や家族の意思決定支援に関する報告がほとんどなく,非がん性呼吸器疾患患者のエンドオブライフケアの意思決定支援の課題を解決するためのさらなる研究の必要性が示唆された.

Patients living with non-cancer respiratory diseases may die without being aware of their own end-of-life, as their function deteriorates with each exacerbation and recovery. Patients focus on coping with their daily physical conditions and reach the end of life without making decisions about their future. Families experience psychological pain, conflict, and regret at the end of life without knowing the patient’s wishes. We thought it was necessary to support patients and their families in thinking about the end of life, communicating their intentions, and living their lives according to their physical condition. The aim of this study was to clarify research trends and issues of decision-making support in end-of-life care for patients with non-cancer respiratory disease in Japan by reviewing domestic and international literatures. The Web version of the Central Journal of Medicine, CINAHL, and MEDLINE were searched using the keywords ＂not cancer,＂ ＂respiratory,＂ ＂end of life,＂ and ＂Japan ＂. Fourteen articles were included in the analysis. Eight themes were extracted: ＂care for dyspnea,＂ ＂difficulty in confirming patient's intention,＂ ＂lack of understanding of the disease,＂ ＂family distress in proxy decision-making,＂ ＂delays in the timing of decision-making support,＂ ＂conflicts among nurses,＂ ＂difficulties in multidisciplinary team support,＂ and ＂the need to create decision support guidelines and systems. There were few reports on the decision-making support for patients and their families when introducing home oxygen therapy or non-invasive positive pressure ventilation therapy in preparation for exacerbations, or in preparation for sudden changes. Further research is needed to address the issues of end-of-life care decision making support for patients with non-cancer respiratory disease.

非がん性呼吸器疾患

エンドオブライフケア

意思決定支援