"Бумажное тело": бюрократическое и правовое измерения траектории новорожденного пациента в неонатологии

Abstract

This article explores the bureaucratic, legal and economic dimensions of the neonatal care. Drawing analytically on the neo-Weberian approach in the sociology of professions (Freidson 2001) and the anthropology of bureaucracy in medicine (Berg 1996; Berg & Bowker 1997), we propose to analyse the medical documents and the practices of its composition as both a constitutive element of medical practice and as organisational infrastructure that ensures the coordination of different professional groups and their interactions with patients. Specifically, we define this part of the work of doctors, nursing staff and health care managers in the context of neonatal resuscitation care as a process of creating and modifying a ‘paper body’ for their patients, i.e. all the document flow that accompanies the processes of treating and routing the patient. Empirically, the study relies on qualitative data collected within 'the Birth of the Patient' project: diaries of included observations of a neonatal intensive care physician, ethnographic observations by social researchers, focus groups with neonatal intensive care unit staff and interviews with medical professionals and healthcare managers. As a result of this data analysis, we find that the documentary history of the newborn patient is shaped by multiple negotiations between different medical professionals and representatives of different health care institutions. In some cases, the patient's 'paper body' turns out to be a major determinant of his or her future trajectory of (de)hospitalisation. We also find that the formation of such a documentary biography of a newborn patient does not directly correlate with his or her clinical condition, but reflects the complex system of distribution of material and non-material resources that constitute the newborn care service and in some cases goes beyond it.