Decision making for catastrophically ill newborns has recently emerged as a social issue. Advances in biomedical technology and practice, and changes in other economic, social and political factors have led to controversy about norms to guide treatment choice. While much has been written on how such decisions should be made, there has been little social science research on how such decisions are actually made.
The purpose of this dissertation is to elucidate the way that clinicians think about treatment decisions for catastrophically ill newborns. The focus is on decision making with respect to the limitation of treatment in those situations in which clinicians feel that an infant is terminally ill and/or severely impaired. The aim is to place the issue in its broad social context, explicate how clinicians categorize information, examine how clinicians utilize these categories in making decisions, investigate the process of decision making in the context of social change, and elucidate some of the ethical and policy questions.
A major finding of this research is that treatment of catastrophically ill newborns is heavily influenced fay the way that clinicians conceptualize the issues involved in treatment choice. Rather than a clear cut choice "to treat" or "not to treat," decision making is a complex process in which clinicians, and sometimes parents, make decisions about which treatments are appropriate to give at a particular point in time. Clinicians conceptualize this as a choice about "the aggressiveness" of treatment. A model is derived to explain clinician decision making. Clinicians are seen to categorize characteristics of patient condition along the dimensions of quality of life, uncertainty, critical condition and social value; treatments are categorized according to aggressiveness, ordinary/extraordinary means, withholding and withdrawing treatment and passive/active euthanasia. Each of these dimensions is culturally determined. There is variation in clinician conceptualization of characteristics of patient condition and treatment, the goals of treatment, and the norms for decision making.
The primary mode of research for this study was participant observation in a neonatal intensive care unit (NICU). Treatment choices in routine and problematic cases were observed and clinicians were interviewed to elicit information on factors relevant to the decision making process. In addition, clinicians from other NICUs were interviewed and meetings and conferences were attended. Documents in the clinical, legal, bioethical, social science, and popular literature were analyzed and a survey on treatment choice for catastrophically ill newborns was conducted.