米国におけるALS末期患者診療の現状—過去10年を省みて

The Current Status of End-of-Life Care in ALS: Progress and Personal Experience from the Past Ten Years in the USA

10年前に発表したALSの寿命末期（end-of-life：EOL）を改善するための分科会の結論¹⁾をレビューしつつ，その後EOLの各領域でどのような変化・進歩が起こったかを記述した。さらにEOLの特殊な問題，すなわち「故意に死を早めること」と気管切開・人工呼吸器にも言及した。この10年間にほとんどの領域でかなりの進歩がみられたが，現状をレビューすると，ALS患者が「よい死に方」でEOLを終えるためにはさらに多くの改善が必要であることを示している。

Abstract

End-of-life (EOL) care and management in ALS is one of the least studied subjects within ALS management. In early 2000, Robert Wood Johnson and the ALS Association assembled an advisory committee to develop recommendations for the promotion of excellence during EOL care. We have reviewed this 10-year-old publication¹⁾ and describe the progress we have made in 16 different areas of EOL recommendations. Although there are some areas with little progress over the past 10 years, a few areas, particularly those regarding psychosocial management, symptomatic treatments, and ethical issues of EOL, have made major advancements during this time. the statements and recommendations for promoting excellence in EOL made 10 years ago appear to still be valid. We also review hastening death, a newly recognized issue of EOL, and discuss the potential reasons why Japanese and American patients chose tracheostomy-invasive ventilator at different rates. We conclude that EOL management is still evolving and in progress. Until we have a cure for ALS, every effort is being made to improve EOL care for patients with ALS.