Decision Making for Children with Cancer When Cure Is Not Likely

FAIN: FB-50287-04

Myra H. Bluebond-Langner
Rutgers, The State University of New Jersey, Camden (Camden, NJ 08102-1405)

I am seeking support to complete a book, Choiceless Choices: Decision Making for Children with Cancer When Cure Is Not Likely. I hope to show the power of an approach squarely rooted in concepts and methods that belong to the humanities. The book is based on an ethnographic study of the daily lives, meetings, discussions, and decisions of the ill children, their parents, and physicians. This approach contrasts with previous studies that have used interviews and questionnaires, conducted retrospectively and intended to produce quantifiable data. The analysis will show the dialectical process between experiences, information and self-understanding. Families are engaged in a process that is best understood, I believe, not in terms of the weighing of risks and benefits, but in the construction of identities that can survive what the body may not. I also will address the ethical question of what role ill children should play in decisions about their own medical treatment. Of late, this question has been approached in the medical ethics literature through the concept of assent. In short, the book will provide a rich and detailed description of the entire process of decision making. It will highlight social, cultural and moral factors that shape decision making. It also will contribute to current dialogues in childhood studies and biomedical ethics, and to the treatment of seriously ill children.