title: Ethical considerations in disease management of amyotrophic lateral sclerosis: a cross-cultural, worldwide perspective.
abstract: Amyotrophic lateral sclerosis (ALS) is universally fatal. Technological advances have provided a means to impact upon, without radically improving, the natural history of the disease. In addition, we now have the capability of potentially identifying patients who are pre-symptomatic carriers of the rare heritable forms of the disease. These capabilities provide the basis for the numerous ethical dilemmas that face patients, physicians, and agencies responsible for health care expenditures; dilemmas that can only be amplified between cultures. This paper attempts to address some of the major ethical issues germane to the care of ALS patients. It discusses the emergence of autonomy as the reigning principle of medical ethics in the United States and its potential conflict with the ethical dilemma of limited resource allocation. Finally, it attempts to compare and contrast, in an admittedly anecdotal and fragmentary fashion, the perspective of other cultures regarding the care of ALS patients.
authors.affiliation: Department of Neurology, Tufts University School of Medicine, Lahey Hitchcock Clinic, Burlington, MA 01805, USA.
authors.forename: J A
authors.initials: JA
authors.lastname: Russell
mesh_terms: D000690:Amyotrophic Lateral Sclerosis / Q000628:therapy*; D003431:Cross-Cultural Comparison; D018864:Cultural Diversity; D030881:Disclosure; D004992:Ethics, Medical; D006801:Humans; D038622:Internationality; D026684:Personal Autonomy; D040841:Resource Allocation