End-of-life (EOL) care for neonates admitted to the Neonatal Intensive Care Unit (NICU) is understudied and practice varies widely across centers and providers. We just do not have a clear understanding of those physiologic processes and other factors that can impact the quality of a neonatal death in the NICU. By not paying close attention to, and then not appropriately treating the symptoms the critically ill neonate expresses as death approaches, we may very well be depriving these infants and their families the opportunity for the “good” death one might hope for an infant.
This dissertation work includes a proposed new model for evaluating the quality of a neonatal death that, with testing, will hopefully provide insight and guidance for clinicians who must coordinate care of parent and child at the end of life. Several characteristics and relationships need to be further evaluated, however this new framework will offer a good approach until more definitive knowledge is discovered. Next, an exploratory study is presented examining how dying neonates are currently being cared for in the NICU. Finally, discussion unfolds regarding several methodological issues encountered in EOL care research that makes it incredibly difficult to study this important topic. There is much room for improvement in our understanding so that we may deliver the absolute best end-of-life care possible for these special babies.