Framing Disease; Illness, Society and History - A Bibliography of Health Care Insurance by Charles E. Rosenberg and Janet Golden, Editors. Rutgers University Press, New Brunswick, N.J. 1992.
Review by Del Meyer, MD
The course opened with the pre-reading of a paper by Dr. Rosenberg that led to the first book above that he co-authored. Rosenberg opens with an often-quoted Hippocratic teaching: “Medicine consists in three things – the disease, the patient, and the physician.” Rosenberg states he always begins an introductory course in the history of medicine with disease. Humankind has always suffered from sickness, and the response to it. In some ways, disease does not exist until we have agreed that it does – by perceiving, naming, and responding to it. Medical thought and practice are rarely free of social and cultural constraint, even in matters seemingly technical. The explanation of sickness is too sensitive – socially and emotionally – for it to be a value-free enterprise. Since 1820, when Richard Bright associated dropsy to renal disease, it has been redefined (Re-FRAMED) from an anatomic diagnosis, to a physiological diagnosis, and finally, in the past two decades, to a framework around renal dialysis; most patients never become dropsical at all. Their experience is that of dialysis and not the illness dialysis is meant to avert. Now end-stage renal disease (ESRD) has a fundamentally administrative meaning; it is an automatic trigger for reimbursing providers of dialysis.
The negotiations surrounding the definition of and response to disease are complex and multilayered. In all layers is the doctor-patient relationship. In some cases, society literally – and didactically – acts out negotiated disease, for example, when a court weighs a plea of not guilty by reason of insanity, or when a workers’ compensation board decides whether a particular illness is a consequence of the claimant’s work. In court, the legal proceedings become a proxy for a debate between competing professional ways of seeing the work, different types and levels of professional training, and conflicting social roles. Debates about brown lung and asbestosis are an example of a social negotiation in which interested participants interact to produce logically arbitrary but socially viable if often provisional solutions to a dispute. Agreement of a definition of disease can provide the basis for mediated compromised and administrative action. Disease can be seen as a dependent variable in such a negotiated situation; yet, once agreed upon, it becomes an actor in that social setting, legitimating and guiding social decision-making.
After full sections on Framing Disease (American physicians’ “discovery” of homosexuals, 1880-1890, history of chronic fatigue syndromes) and Negotiating Disease (illusions of medical certainty), Rosenberg and Golden take us through Managing Disease (TB & epilepsy), and Disease as Social Diagnosis (poverty, disease, and responsibility). This gives us a perspective as we see disease continue to be a generation-long debate about the relationship between state policy, medical responsibility, and individual culpability – a debate that will probably not cease in our lifetime. The question is: How active will our participation in the debate to control our patient’s destiny be?