"Best interest" and Pediatric End Stage Kidney Disease: The Case of Baby M

In everyday clinical practice, health professionals and parents of chronically ill children often rely on the principle of 'best interest' in the development of medically oriented treatment plans. In most cases, such processes are done collaboratively; however, 'best interest' as a standard for decision-making becomes ambiguous in situations wherein parents and health professionals fail to agree on the course of treatment. This paper will explore the potential tensions that can exist in clinical practice when 'best interest' is used for making health care decisions. The discussion will be framed within the case of baby M, a newborn child of Mennonite descent diagnosed at birth with end-stage kidney disease (ESKD). M's parents refused medically-prescribed therapy on behalf of their child because of the uncertainty of the treatment and beliefs regarding quality of life. This case highlights that the application of the 'best interest' principle in the clinical domain can be ambiguously interpreted and subjectively operationalized along a narrowly defined medical understanding of what is in the patient's best interest. In addition, this case serves as an example of how power within the health care system can be used to operationalize a medically-sanctioned definition of 'best interest', often at the expense of the values, beliefs and interests of parental caregivers.