biostudies-literatureSpoden CBundesministerium für Bildung und Forschunge0306102https://www.ebi.ac.uk/biostudies/studies/S-EPMC11207121biostudies-literatureUnknown19(6)How do people with amyotrophic lateral sclerosis (PALS) deal with their diagnosis and engage in end-of-life decision-making? What informational or supportive needs do they have for counselling about life-sustaining treatment and end-of-life care? Which correlating conditions and influences relate to these needs and how do they connect to the wish to die or wish to live? We conducted a qualitative interview study with 13 people with ALS in Germany from March 2019 to April 2021. Data collection and analysis followed a grounded theory-based approach and revealed close relationships between coping, informational needs and the preparedness for decision-making. We identified the coping strategies 'avoid thinking about end-of-life' and its counterpart, 'planning ahead to be well-prepared,' and diPloS oneCoping and end-of-life decision-making in ALS: A qualitative interview study.PMC1120712101GY1715Neitzke GWenzel OSpoden CHirschberg IErdmann AfalseCoping and end-of-life decision-making in ALS: A qualitative interview study.How do people with amyotrophic lateral sclerosis (PALS) deal with their diagnosis and engage in end-of-life decision-making? What informational or supportive needs do they have for counselling about life-sustaining treatment and end-of-life care? Which correlating conditions and influences relate to these needs and how do they connect to the wish to die or wish to live? We conducted a qualitative interview study with 13 people with ALS in Germany from March 2019 to April 2021. Data collection and analysis followed a grounded theory-based approach and revealed close relationships between coping, informational needs and the preparedness for decision-making. We identified the coping strategies 'avoid thinking about end-of-life' and its counterpart, 'planning ahead to be well-prepared,' and di2024-01-01T00:00:00Z20242025-04-04T21:22:34.601Z2025-04-04T21:22:34.601ZS-EPMC112071213892402310.1371/journal.pone.0306102