Sustaining life or prolonging dying? Appropriate choice of conservative care for children in end-stage renal disease: an ethical framework

Abstract

Due to technological advances, an increasing number of infants and children are surviving with multi-organ system dysfunction, and some are reaching end-stage renal disease (ESRD). Many have quite limited life expectancies and may not be eligible for kidney transplantation but families request dialysis as alternative. In developed countries where resources are available there is often uncertainty by the medical team as to what should be done. After encountering several of these scenarios, we developed an ethical decision-making framework for the appropriate choice of conservative care or renal replacement therapy in infants and children with ESRD. The framework is a practical tool to help determine if the burdens of dialysis would outweigh the benefits for a particular patient and family. It is based on the four topics approach of medical considerations, quality-of-life determinants, patient and family preferences and contextual features tailored to pediatric ESRD. In this article we discuss the basis of the criteria, provide a practical framework to guide these difficult conversations, and illustrate use of the framework with a case example. While further research is needed, through this approach we hope to reduce the moral distress of care providers and staff as well as potential conflict with the family in these complex decision-making situations.