Theoretical Medicine and Bioethics

, Volume 24, Issue 6, pp 459–469 | Cite as

Disability or end-of-life? Competing narratives in bioethics

  • Joseph Kaufert
  • Thomas Koch


Bioethics, and indeed much ethicalwriting generally, makes its point throughnarratives. The religious parable no less thanthe medical teaching case uses a simple storyto describe appropriate action or theapplication of a critical principle. Whilepowerful, the telling story has limits. In thispaper the authors describe a simple teachingcase on ``end-of-life'' decision making that wasill received by its audience. The authors ill-receivedexample, involving the disconnection ofventilation in a patient with ALS (Lou Gherig'sDisease) was critiqued by audience members withlong-term experience as ventilation users. Inthis case, the supposedly simple narrative ofthe presenters conflicted with the lifehistories of the audience. The lessons of thisstory, and the conflict that resulted, speakcritically to the limits of simple teachingcases as well as the strengths of narrativeanalysis as a tool for the exploration ofbioethical case histories.

ALS bioethics disability ``end-of-life'' decision-making narrative narrative analysis Polio 


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Copyright information

© Kluwer Academic Publishers 2003

Authors and Affiliations

  • Joseph Kaufert
    • 1
  • Thomas Koch
    • 2
  1. 1.Faculty of Medicine, Centre for Aboriginal Health Research, Department of Community Health SciencesUniversity of ManitobaWinnipegCanada
  2. 2.Department of Geography (Medical)University of British ColumbiaVancouverCanada

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