Disclosure practices and cultural narratives: Understanding concealment and silence around cancer in Tuscany, Italy

Abstract

Disclosure practices are embedded in and enact personal, professional, and societal narratives. These narratives are not given but contested and evolving. The medical arena constitutes an important social space in which this contestation, reproduction and change take place. More specifically, based on ethnographic and cultural survey data, we describe and interpret the cultural sense of “not telling” about cancer within the local world of Tuscany, Italy. We locate the traditional practice of non-disclosure of cancer diagnoses within a larger cultural narrative we call “social-embeddedness”, a narrative of social unity and hierarchy, of protection from or adaptation to the inevitable necessities of life, in part by using narrative itself to construct a sense of group protection. This narrative is being challenged, as it confronts other medical and societal narratives, such as one originating from the United States and embedded in health care practices like open disclosure, informed consent, Advanced Directives, and the Patient Self-Determination Act, what we call the “autonomy-control narrative”. Explicit disclosure to a patient about his or her illness and the future plays an important role in actualizing this narrative, in helping in the quest to control one's destiny, eliminate uncertainty and necessity, and foster a person's identity as singular and sovereign over him/herself. The concept “narrative” high-lights the ideology and intent of people's practices, not just “outcome”, and helps us understand contradictions in various disclosure contexts as partly due to multiple cultural narratives in play. Considering some of the practices and understandings embedded within and reproduced by the larger cultural narratives also allows us to track the dynamics of history and individual biography, to locate and compare approaches to disclosure across time and space, and to avoid the pitfalls of cultural determinism and cultural stereotypes.