For a minority of children managed in the NICU, there is a need for more complex technologic assistance in order to sustain life, mitigate a more chronic debilitation from a pervasive life-limiting condition, or provide a bridge from life-sustaining therapy to a more semi-permanent treatment such as organ transplantation. This chapter will address two major types of technology assistance for infants and children—tracheostomy and assisted home ventilation, and dialysis—and the myriad complications and considerations that they raise. Some attention to why (...) clinicians may be so inclined to impose technology as a solution to life-limiting conditions will be noted, as well as why some parents may seem to insist on pursuing technology. (shrink)

This book examines the many ethical issues that are encountered in the Pediatric Intensive Care Unit. It supports pediatricians, nurses, residents, and other providers in their daily management of critically ill children with the dilemmas that arise. It begins by examining the evolution of pediatric critical care, and who is now impacted by this advancing medical technology. Subsequent chapters explore specific ethical concerns and controversies that are commonly encountered. These topics include how to conduct end-of-life discussions with families facing a (...) myriad of challenging choices. It goes on to explore the concept of futility, and what that does and does not mean in the pediatric ICU setting. Controversial subjects such as children as organ donors, particularly using donation after cardiac death, in addition to issues surrounding the declaration of brain death are covered. Additional chapters address resource allocation, and also analyze the use of long-term technology in chronically critically ill children. Chapters include case examples with guidance on how to work through similar difficulties and decision-making. While this book is specifically targeted for care providers at the ICU bedside, it is also of benefit to medical students, students in bioethics, practicing ethical consultants and families who are dealing with critically ill children. (shrink)

As Josie's physicians, we developed trusting relationships with the family, relationships based on honesty. When their daughter passed away a week after the conversation described, at least we had not sheltered them from that possibility but prepared them for it. We continue to wonder, however, what words parents are hearing that we do not intend for them to hear. In addition, we wonder what words they are hearing that do not truly mean what they imply? How can health care providers (...) caring for patients and families recognize that simple words like “good,” “stable,” and “quiet” may be misinterpreted and may affect the trust families place in our communication? As for us, we choose our words more carefully now. (shrink)

Futility has indeed been abused. The term has been applied and misapplied, defined and redefined, molded and remolded until the real meaning is no longer understood. When a word loses its meaning, it loses its power. The reason that the term is no longer clear is because attempts have been made to include scenarios under the banner of futility that do not truly fit. From my perspective as a pediatric critical care physician, the majority of troublesome cases are not questions (...) of true futility. More frequently, the ethical concerns and moral distress encountered in the pediatric intensive care unit are not in the realm of the unambiguous; it is precisely in the ambiguous where distress is felt and... (shrink)