The impossibility and necessity of quality of life research

Abstract

There are probably a number of reasons why the medical community pays surprisingly little systematic attention to quality of life, either in research or in clinical care. Possibly our society's fascination with high technology and the rescue of endangered lives has encouraged the medical profession to focus on acute care, where their interventions can bring dramatic results. And perhaps because such high-tech acute care requires great knowledge and skill, medical educators have not devoted as much time to educating students and residents about the more mundane matters of medicine. Another reason, on which I will focus here, is the fact that scientific research into quality of life is particularly difficult, methodologically. It does not lend itself easily to the crisp, clean answers for which we strive in basic science. It is "soft," inexact, not "hard." In this article I hope to explain why such research is indeed fraught with hazard. The scientists are attempting a task that is, in a profound philosophical sense, impossible. They have no direct access to the data they most need, and every method of validating their results is fundamentally flawed. Nevertheless, I will also suggest how we can fruitfully undertake such research and, equally important, why we must.