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.
Several years ago, a ten-year-old child with a disability--Rett Syndrome--died at the home of a family friend. At the conclusion of a seven week inquest, a Coroners Service jury determined that the child's death resulted from "severe malnutrition as a result of inadequate nutritional intake over a period of time caused directly or indirectly by the actions of other persons" (Coroners Service Jury Recommendations, 1997, p. 1). In the weeks prior to her death, this child (whom we call "Nina") had become the focus of a child protection investigation for possible parental neglect, which had led to her contact with three health care providers--an emergency physician, a hospice volunteer and a home care nurse--approximately two weeks before she died. While these three health care providers and approximately 17 other professional service providers knew about Nina during those two weeks, Nina died without any service intervention directed at responding to her malnourished condition. As a result, the circumstances related to Nina's death garnered much attention from the professional communities involved together with the general public. One of the authors of this article, Nancy Bell, conducted research into `what happened' to Nina for her Masters of Arts degree thesis. In drawing from her work, this article addresses the topic of the routine use of health care records, or `texts,' in the provision of medical services and the possible implications for patients.
During the weeks prior to her eventual death, Nina lost a considerable amount of weight. In retrospect, it appears this weight loss may have been related to her childcare worker's absence over a six-week period. The childcare worker had become ill and unable to continue with her daily responsibilities, which included feeding, dressing and transporting Nina to the school Nina attended as a full time student in Grade 3. At the school, the childcare worker was also employed as Nina's teacher's aid, assisting with the implementation of Nina's independent educational plan. On the day the childcare worker returned to care for Nina and took her to school after both person's four week absence, a concerned community citizen phoned provincial child protection social workers to report Nina's emaciated condition. This contact resulted in health care provider and social worker involvement. Approximately two weeks later, Nina died at the home of her mother's friend who lived in a nearby community. In response to the circumstances related to Nina's death, a number of official investigations ensued. …