Objective: The purpose of this study was to identify factors important to parents in their infant's end-of-life care.Study Design: Participants were parents (n ¼ 19 families) whose infant (less than 1 year old) had died. Parents completed the Revised Grief Experience Inventory (RGEI) and a semi-structured interview regarding their infant's end-of-life care. Interviews were rated using the Post-Death Adaptation Scale (PDAS).Result: Parents scored significantly lower than the normative sample on the RGEI, and PDAS scores suggested that these parents were adapting positively. Parent interviews identified the aspects of care that were important to parents: honesty, empowered decision-making, parental care, environment, faith/trust in nursing care, physicians bearing witness and support from other hospital care providers. Conclusion:Results of this study suggest that parents can effectively cope following the death of an infant and the medical staff can do much to improve the end-of-life care for infants and their families.

This study describes the end-of-life care that infants and their families received. Fewer medical procedures were performed, and more supportive services were provided to infants and families that had a palliative care consultation. This suggests that palliative care consultation may enhance end-of-life care for newborns.

At Children's Hospital of Wisconsin there is a pediatric palliative care consultation service that serves a diverse patient population, including infants. However, the value of a palliative care consultation for infants has not been well evaluated. We performed a retrospective, case series, descriptive chart review of infants in our neonatal intensive care unit (NICU) who received palliative care consults between January 1996 and June 1998. We specifically looked at their diagnoses, the timing of consults, reasons that consultations were ordered, what recommendations were made, and the subsequent outcomes. During the series period there were 898 admissions to the NICU, 51 neonatal deaths, and 12 neonatal palliative care consultations. The diagnostic categories for those with a palliative care referral included prematurity, lethal anomalies, and catastrophic or overwhelming illness. Reasons for the consultations were organization of home hospice, facilitation of medical options, such as do-not-resuscitate (DNR) orders and treatment withdrawal, facilitation of comfort measures, and grief/loss issues. Recommendations that the palliative care staff made fell into four categories: advance directive planning, the optimal environment for supporting neonatal death, comfort and medical care, and psychosocial support. This series is a description of what a palliative care service can offer for terminally ill infants in an NICU. We speculate that such consults can more consistently and comprehensively provide appropriate end-of-life care for these patients and their families.

Despite pain as the fifth vital sign in adult and pediatric care, many still dismiss the fact that immature human beings (whether a fetus, a preterm, or term baby) are capable of being affected by pain. Studies have demonstrated that avoiding, minimizing, and treating pain in babies, particularly when premature, improves their outcomes. Informed by the evidence, treating neonatal pain has become the medical standard of care for physicians in neonatology and anesthesiology. This article provides a brief overview of relevant publications that explain the clinical evolution that has led to the treatment of neonatal pain. This article also examines three arguments against the existence of fetal pain and presents evidence that refutes them. Informed by the research, a revised definition of pain is offered.