Although improving end-of-life (EOL) care for children and their families is a national priority (American Academy of Pediatrics, Committee on Bioethics and Committee on Hospital Care, 2000; Institute of Medicine, 2003), research in the neonatal intensive care unit (NICU) is limited. To improve care, there is a critical need to understand the experiences of these infants and their caregivers. Therefore, we conducted a retrospective study to examine parent perceptions of their infants' care at EOL in the NICU between 3 months and 5 years of their infant's death (M ϭ 38.10 months, SD ϭ 16.87). As part of this pilot study, 29 mothers and 16 fathers representing 31 infants participated in qualitative interviews assessing parents' satisfaction with their involvement in their infants' care and decision-making and their advice to NICU providers. Four themes emerged from interview data, including parents as partners in care, communication with the health-care team, relationships with staff, and bereavement support. Both mothers and fathers generally felt positive about their role in treatment decisions, relationships with staff, and memory-making activities. Parents noted areas for improvement, including team communication, anticipatory guidance, family inclusion at bedside, and bereavement care. This study provides a deeper understanding of parents' experience with their infants at EOL and highlights opportunities for enhancing care. Pediatric psychologists can play an important role in facilitating communication between parents and the health-care team as well as providing bereavement support for these vulnerable families.

Pediatric health care is practiced with the goal of promoting the best interests of the child. Treatment generally is rendered under a presumption in favor of sustaining life. However, in some circumstances, the balance of benefits and burdens to the child leads to an assessment that forgoing life-sustaining medical treatment (LSMT) is ethically supportable or advisable. Parents are given wide latitude in decision-making concerning end-of-life care for their children in most situations. Collaborative decision-making around LSMT is improved by thorough communication among all stakeholders, including medical staff, the family, and the patient, when possible, throughout the evolving course of the patient's illness. Clear communication of overall goals of care is advised to promote agreed-on plans, including resuscitation status. Perceived disagreement among the team of professionals may be stressful to families. At the same time, understanding the range of professional opinions behind treatment recommendations is critical to informing family decision-making. Input from specialists in palliative care, ethics, pastoral care, and other disciplines enhances support for families and medical staff when decisions to forgo LSMT are being considered. Understanding specific applicability of institutional, regional, state, and national regulations related to forgoing LSMT is important to practice ethically within existing legal frameworks. This guidance represents an update of the 1994 statement from the American Academy of Pediatrics on forgoing LSMT.

Background: Learning directly from bereaved parents about their experiences in the neonatal intensive care unit (NICU) can improve services at end-of-life (EOL) care. Parents who perceive that their infant suffered may report less satisfaction with care and may be at greater risk for distress after the death. Despite calls to improve EOL care for children, limited research has examined the EOL experiences of families in the NICU. Purpose: We examined parent perceptions of their infant's EOL experience (eg, symptom burden and suffering) and satisfaction with care in the NICU. Methods/Search Strategy: Forty-two mothers and 27 fathers (representing 42 infants) participated in a mixed-methods study between 3 months and 5 years after their infant's death (mean = 39.45 months, SD = 17.19). Parents reported on healthcare satisfaction, unmet needs, and infant symptoms and suffering in the final week of life. Findings/Results: Parents reported high levels of healthcare satisfaction, with relative strengths in providers' technical skills and inclusion of the family. Greater perceived infant suffering was associated with lower healthcare satisfaction and fewer well-met needs at EOL. Parents' understanding of their infant's condition, emotional support, communication, symptom management, and bereavement care were identified as areas for improvement. Implications for Practice: Parents value comprehensive, family-centered care in the NICU. Additionally, monitoring and alleviating infant symptoms contribute to greater parental satisfaction with care. Improving staff knowledge about EOL care and developing structured bereavement follow-up programs may enhance healthcare satisfaction and family outcomes. Implications for Research: Prospective studies are needed to better understand parental perceptions of EOL care and the influence on later parental adjustment.

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