Defining a Good Death for High-Risk Neonates in the NICU

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Death is inevitable for some neonates in the neonatal intensive care unit (NICU). When a neonate is admitted to the NICU, the management of the neonate is focused on stabilization and survival, however for many neonates it becomes apparent that, despite all of the tremendous technical capabilities available to manage neonatal illness, treatment becomes futile and death is inevitable. End-of-life care has received very little attention from a research perspective. Empirical evidence is lacking that characterizes the signs and symptoms that the dying neonate exhibits, as well as the treatment strategies that are used. Dying neonates deserve a good death. Whether these neonates are experiencing a good death is unknown. There is compelling evidence that the majority of dying neonates are not medicated during the dying process. The purpose of this project is to determine the signs and symptoms that are commonly exhibited by the neonate during the dying process and the management of strategies used by caregivers. Data will be obtained by abstracting data from the medical records and from structured interviews with neonatal staff nurses who have cared for dying neonates, as well as parents of neonates who have died.