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Abstract

This article originates from a research study that explores 'what happened' to a 10-year-old child with Rett syndrome, who died from "severe malnutrition" according to a Coroners Service inquest jury. The inquest evidence analyzed, using institutional ethnography, shows that approximately one week prior to this child's death three health care providers (an emergency physician, a hospice volunteer and a home care nurse) conducted individual assessments of the child. Child protection workers were also involved. Textual analysis of the health care providers' records shows how the child was officially and textually constructed as 'dying from a terminal illness' in contrast to the subsequent Coroners Service finding. The authors argue that although professional and organizational texts are a routinely 'taken for granted' component of professional practice, they need to be understood as active in the relations of care or service provision. The article supports this argument by demonstrating how the home care nurse's response to the child was textually coordinated with the other two health care providers' actions and how this coordination resulted in the 'proper' enactment of a Do Not Resuscitate order, leading to courses of action or inaction resulting in the child's death. The lesson offered highlights the problems that can arise when textual realities routinely are given authoritative status and displace other forms of knowing in health care.

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