In Marie's Memory: The Rights of the Child with Life-Threatening or Terminal Illness

Abstract

This article describes the final weeks of a dying child's life and the people who cared for her. Was the suffering and isolation surrounding Marie's death as inevitable as death itself? Marie died over eight years ago. Although specific treatment issues and modalities have changed, the ethical dilemma at the core of her life remains painfully alive and continues to challenge the hospital network that services irreversibly ill children. Goals of the discussion are fourfold: 1.) to tell Marie's story as true to her experience as possible; 2.) to explore the ethical and humanistic concerns involved in Marie's life and death; 3.) to propose a model of hospital care that would encompass these concerns and, thus, have a direct impact on improving the lives of children such as Marie; and 4.) to engender thought and debate.