Living and Dying with Amyotrophic Lateral Sclerosis (ALS): Options of Social Participation, Life-Sustaining Treatments, and Euthanasia in Germany and Japan

When I conducted interviews for my doctoral thesis on Living Wills in Japan, I was introduced to people with amyotrophic lateral sclerosis (ALS) who were deciding for or against life-sustaining treatments, such as artificial nutrition and invasive mechanical ventilation. Since this time, I have been concerned with issues around ALS. As a Canon Foundation Fellow and Visiting Scholar at Hitotsubashi University (2016-2017), I conducted field research on the social participation of people with ALS (PALS) and supporting networks. At Hannover Medical School, I worked on a project funded by the German Federal Ministry of Education and Research on the preferences and needs of PALS concerning life-sustaining treatments and options of hastening death (2018-2021). At the DIJ, I revisit my earlier research by combining the Japanese and German perspectives. Doing so, I explore the similarities and differences of what options of living and dying well PALS perceive in both countries.