What's wrong with quality-of-life measures? A philosophical reflection and insights from neuroimaging

摘要

The authors propose a reflection on quality of life (QoL) measures in medicine following the work of G. Canguilhem on health and disease and the latest results from neuroimaging. The use of QoL measures implies that the tension between the two competing visions of health (i.e., normative and descriptive) needs to be overcome. A profound cultural change is needed if we want clinicians, researchers and decision makers to suspend their prevailing scientific ideologies about disease and examine the content of the patient's experience. Another issue that concerns the direction of future QoL is that until now, the available measurements and recent work were ambiguous, trying to find a commonly acceptable, intermediate position halfway between these normative and descriptive visions. It may be time to discard the medical normative vision and instead assume a radically humanistic approach to medicine by providing purely descriptive measures based on the values and emotions of patients.