The missing voice of the critically ill: a medical sociologist’s first-person account

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Abstract

Existing sociological studies of critical illness deal mainly with providers and families, but seldom with patients, themselves. Moreover, most of the literature on the patient’s experience involves chronic illness. Based on the author’s experience as an intensive care unit (ICU) patient, this paper demonstrates that certain concerns of the post-Parsonian literature, such as full disclosure of information to patients and patients’ negotiation and collaboration with physicians, are of minimal relevance for critically ill patients. This paper also discusses the notebook the author used in the ICU to communicate while on a respirator, thus unintentionally leaving a concurrent record of his experience, in a form of ‘inadvertent ethnography’. This allowed him to reconstruct experiences rarely accessible to sociologists. Such notebooks can help us construct accounts of the ICU patient’s experience, and move us towards a sociology of the critically ill patient. Potential topics for this new research area are suggested.

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