The role of adaptation to disability and disease in health state valuation: a preliminary normative analysis

Chronically ill and disabled patients generally rate the value of their lives in a given health state more highly than do hypothetical patients imagining themselves to be in such states. Much of this difference may be due to actual patients' adaptation to their health states, a phenomenon that would not typically affect the ratings of persons who only hypothetically imagine themselves to be patients. This article pursues a non-empirical, normative question: does such adaptation render actual patients' ratings of quality of life morally questionable for purposes of resource allocation? Distinguishing the different basic elements in patient adaptation reveals why, and in what respects, people are pulled strongly in opposite directions in responding to this question. Several more explicit moral arguments against using adapted patients' ratings have been articulated by economists and philosophers, and others are developed by the authors. While most of these arguments do not survive careful analysis, several do. Given the subsequent complexity of the matter, it is argued that: (1) Neither solely actual nor solely hypothetical patient perspectives should be used for rating quality of life. (2) Even if representatives of the general public acting as hypothetical patients provide ultimately the best perspective from which to discern societal values about health states, patients' values that are often influenced by adaptation must still be conveyed to and clearly understood by public representatives as a critically important fact about health-related quality of life. The article also points to the need for much additional work on adaptation, both empirical research and normative analysis.