Decision-making in the face of end-stage organ failure

Abstract

Pediatric solid organ transplantation numbers have been increasing over the years. Research and the medical literature tends to focus on advancing the field and innovation - which often leads to higher risk and more complex procedures. How do we decide when it is too much - too much risk; too much uncertainty? Who makes that decision? Literature is scarce and usually focuses on end-of-life decision-making. This article does not purport to have the answers, but will highlight the depth and breadth of points that must be taken into consideration. There are many factors that contribute to the decision-making in the context of high-risk solid organ transplantation in children. Focus needs to include quality of life in the pediatric context, in addition to survival. End-of-life discussions should be included early in the process. Societal factors must be considered in an era of donor organ shortages. Shared decision-making should be the approach. The key guiding principle is to make a decision about what is best for a child requiring a high-risk transplant based not only on survival, but also on an acceptable quality of life on the background of optimal utilization of a scarce societal resource.