OBJECTIVE: To create a protocol delineating the needs of patients, families, and staff necessary to provide a pain-free, dignified, family-, and staff-supported death for newborns who cannot benefit from intensive, life-extending, technological support. STUDY DESIGN: Using Internet e-mail, a Delphi study with sequential questionnaires soliciting participant response, investigator analysis, and follow-up responses from participants was conducted to build a consensus document. Institutional review was granted and respondents gave consent. Recruitment was conducted at medical, ethics, nursing, and multidisciplinary organization meetings. Synthesis of 16 palliative care/end-of-life protocols developed by regional, institutional, and parent organizations was included. Participants from 93 locations in the US and 4 abroad gave feedback to 13 questions derived from clinical experience and the literature. The data underwent four rounds of analysis with 95% retention of the 101 participants over an 18-month period. RESULTS/CONCLUSION: Specific consensus-based recommendations are presented with a description of palliative care; categories of candidates; planning and education needed to begin palliative care services; relationships between community and tertiary centers; components of optimally supported neonatal death; family care, including cultural, spiritual, and practical needs; ventilator withdrawal, including pain and symptom management; recommendations when death does not occur after cessation of life-extending interventions; family follow-up care; and necessary ongoing staff support.

Objectives. Little is known regarding the assessment and treatment of symptoms during end-of-life (EOL) care for children. This study was conducted to describe the circumstances surrounding the deaths of hospitalized terminally ill children, especially pain and symptom management by the multidisciplinary pediatric care team.Design. Patients in the neonatal intensive care unit, pediatric critical care unit, or general pediatric units of Vanderbilt Children’s Hospital who were hospitalized at the time of death, between July 1, 2000, and June 30, 2001, were identified. Children eligible for the survey had received inpatient EOL care at the hospital for at least 24 hours before death. A retrospective medical record review was completed to describe documentation of care for these children and their families during the last 72 hours of life.Results. Records of children who had received inpatient EOL care were identified (n = 105). A majority (87%) of children were in an intensive care setting at the time of death. Most deaths occurred in the pediatric critical care unit (56%), followed by the neonatal intensive care unit (31%). Pain medication was received by 90% of the children in the last 72 hours of life, and 55% received additional comfort care measures. The presence of symptoms other than pain was infrequently documented.Conclusions. The duration of hospitalization for most children dying in this inpatient setting was sufficient for provision of interdisciplinary pediatric palliative care. Management of pain and other symptoms was accomplished for many children. The documentation of pain and symptom assessment and management can be improved but requires new tools.

Unexpected and substantial increases in hospitalization rates as a result of acute bronchiolitis among infants and young children in the United States point to

The application of palliative and hospice care to newborns in the neonatal intensive care unit (NICU) has been evident for over 30 years. This article addresses the history, current considerations, and anticipated future needs for palliative and hospice care in the NICU, and is based on recent literature review. Neonatologists have long managed the entirety of many newborns’ short lives, given the relatively high mortality rates associated with prematurity and birth defects, but their ability or willingness to comprehensively address of the continuum of interdisciplinary palliative, end of life, and bereavement care has varied widely. While neonatology service capacity has grown worldwide during this time, so has attention to pediatric palliative care generally, and neonatal-perinatal palliative care specifically. Improvements have occurred in family-centered care, communication, pain assessment and management, and bereavement. There remains a need to integrate palliative care with intensive care rather than await its application solely at the terminal phase of a young infant’s life—when s/he is imminently dying. Future considerations for applying neonatal palliative care include its integration into fetal diagnostic management, the developing era of genomic medicine, and expanding research into palliative care models and practices in the NICU.