The decisions that doctors make are formed in part through the ways in which medical care is organized. Given that the structure of a situation affects people's actions in the context of medical care, it is a matter of moral concern in any attempt to create cultures of safety in a medical environment,
Physicians bring their unique strengths and weaknesses to their work, but they exercise them within structures that shape the decisions they make. An illness and death in a pediatric intensive care unit illustrates how such structures can affect medical care and why the organization of care is therefore a matter of moral concern.
As a sociologist with training in qualitative research methods, I have studied aspects of contemporary health care by observing encounters between mentally ill homeless persons and outreach workers; the physical settings of emergency shelters, soup kitchens, and the streets; the professional disciplines involved in community psychiatry; and the mental health institutions that constitute the environment of those encounters. (1) I have also learned about health care relationships and the context of those relationships, which I will call "the structure of the situation," from personal experience with my son, Jesse, who died in 1995 from complications of a liver transplant. The latter experience, coupled with my background in social science research and theory, has given me some insight into high-intensity medical care and the ethical concerns related to the organization of that care.
The approach I will take here--combining a highly personal story with analysis of it--is somewhat unconventional and deserves some explanation. I had already written a memoir about my son, followed by a series of articles that directly addressed themes implicit in the book, before writing this article. (2) In those other texts, I avoided wearing my social science hat, putting it on at odd moments as "happened" naturally and unobtrusively. One series of events during my son's 1995 hospitalization, however, seemed to call for a more focused analysis. I acknowledge that engaging in such an analysis represents, in part, another way for me to try to make meaning out of my son's death, not in the sense of rendering his death acceptable or as serving a greater good, but in the sense of finding that, the irrevocable having happened, meaning, for myself or others or both, might still be gleaned from it. In this case, I hope that the events of one evening on a pediatric intensive care unit in the mid-1990s may yield some lessons regarding the organization of critical-care practice today.
Jesse Harlan-Rowe was born in 1975. As an infant he had hydrocephalus, his ventricles, the spaces in the brain that produce cerebrospinal fluid to cushion the brain from the otherwise jarring blows of walking, sitting, and standing, did not drain their excess fluid into his blood, and became engorged. The standard intervention for hydrocephalus: is placement of a shunt through the skull at the back of the head into one of the ventricles. A plastic tube connected to the shunt under the skin is then threaded down to the abdominal cavity, where it drains off the excess cerebrospinal fluid. Without such intervention or in the absence of spontaneous remission, the head becomes enlarged, as the brain is squeezed and choked. The child may die at an early age.
Jesse had three operations for hydrocephalus in the first year and a half of his life and was in remission for the rest of it. He had no other serious physical problems until 1991, when he was diagnosed with ulcerative colitis, an intestinal disease characterized by ulcerations of the colon, rectal bleeding and cramping, and diarrhea. In 1992, he was diagnosed with a mild case of sclerosing cholangitis, a scarring and narrowing of the bile ducts going into the liver. A year later, he had an operation to correct his ulcerative colitis. At that time he was diagnosed with early stage cirrhosis of the liver. …