How do people with amyotrophic lateral sclerosis (ALS) deal with their diagnosis and engage in end-of-life decision-making? This new study, co-authored by DIJ researcher Celia Spoden, Olga Wenzel, Anke Erdmann, Gerald Neitzke, and Irene Hirschberg, addresses these and related questions based on qualitative interviews with 13 people with ALS. Data collection and analysis followed a grounded theory-based approach and revealed close relationships between coping, informational needs, and the preparedness for decision-making. The authors identified the coping strategies ‘avoid thinking about end-of-life’ and its counterpart, ‘planning ahead to be well-prepared,’ and differentiated the latter into the patterns ‘withdrawing from life and taking precautions against life-prolongation’ and ‘searching for a new meaning in life and preparing for life-sustaining treatment’. The study recommends healthcare professionals to be sensitive to illness experiences beyond medical aspects and foster coping as a biographical process to better support people with ALS. The article is available open access here