Social Factors Affecting the Modern Treatment of Catastrophic Diseases: Appendices to Final Report

摘要

People do not choose to suffer from catastrophic diseases but considerable human choice is involved in all other aspects of the ways in which the participants in the process treat and conduct research on these illnesses. The question: Who should have the authority to make decisions which have such far-reaching consequences for those affected by catastrophic diseases and for society as a whole. This question gains its urgency as well as its importance from the fact that catastrophic disease research and treatment illustrate well a number of more general phenomena. First, decisions about these diseases exemplify the 'tragic choices' which face society in many areas of scarcity besides medical care. Second, they demonstrate the great societal impact and implications of innovative medicine. To explore these issues dual conceptual perspectives were developed. The first examines and evaluates the authority which should be vested in each of the chief participants in the catastrophic disease process--the physician-investigator, the patient-subject and his relatives, the professions and the state. The second perspective builds on the insight that the roles and capacities of the participants vary not only according to the basic issues they face but also according to the point in decisionmaking at which these issues arise and have to be resolved.