title: Disability or end-of-life? Competing narratives in bioethics.
abstract: Bioethics, and indeed much ethical writing generally, makes its point through narratives. The religious parable no less than the medical teaching case uses a simple story to describe appropriate action or the application of a critical principle. While powerful, the telling story has limits. In this paper the authors describe a simple teaching case on "end-of-life" decision making that was ill received by its audience. The authors ill-received example, involving the disconnection of ventilation in a patient with ALS (Lou Gherig's Disease) was critiqued by audience members with long-term experience as ventilation users. In this case, the supposedly simple narrative of the presenters conflicted with the life histories of the audience. The lessons of this story, and the conflict that resulted, speak critically to the limits of simple teaching cases as well as the strengths of narrative analysis as a tool for the exploration of bioethical case histories.
authors.affiliation: University of Manitoba, Faculty of Medicine, Centre for Aboriginal Health Research, Department of Community Health Sciences, Winnipeg, Canada. Joseph_Kaufert@umanitoba.cab
authors.forename: Joseph
authors.initials: J
authors.lastname: Kaufert
authors.forename: Thomas
authors.initials: T
authors.lastname: Koch
mesh_terms: D000690:Amyotrophic Lateral Sclerosis; D001293:Attitude to Death; D032764:Casuistry; D006233:Persons with Disabilities; D026690:Ethics, Clinical; D005066:Euthanasia, Passive / Q000941:ethics*; D006801:Humans; D033262:Narration; D011788:Quality of Life; D012938:Social Perception; D013727:Terminal Care / Q000941:ethics*; D012122:Ventilators, Mechanical