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Objectives: To explore (1) how neonatal nurses (NN) and social workers (SW) define serious illness and (2) how physician, nurse, and SW perceptions of serious illness differ. Design: Prospective survey study. Setting/Subjects: Members of the National Association of Neonatal Nurses or the National Association of Perinatal Social Workers. Measurements: We circulated a modified version of a previously developed survey. Participants were given a list of definition components and asked to rank components by importance and to suggest modifications. Results: Eighty-eight percent of participants agreed with our definition of neonatal serious illness. NN and SW differ in important ways in their views of neonatal serious illness when compared with physicians and parents. Conclusions: Our definition of neonatal serious illness has broad acceptability and may be useful for clinical care and research. Future work should prospectively identify patients with neonatal serious illness and establish the usefulness of our definition in real time. [ABSTRACT FROM AUTHOR]

Objectives: About 16,000 infants die in the neonatal intensive care unit (NICU) each year with many experiencing invasive medical treatments and high number of symptoms.1 To inform better management, we characterized diagnoses, symptoms, and patterns of care among infants who died in the NICU. Method: Retrospective electronic medical record (EMR) review of 476 infants who died following admission to a large regional level IV NICU in the United States over a 10-year period. Demographic, symptom, diagnosis, treatment, and end-of-life characteristics were extracted. Results: About half of infants were male (55.9%, n = 266), average gestational age was 31.3 weeks (standard deviation [SD] = 6.5), and average age at death was 40.1 days (SD = 84.5; median = 12; range: 0–835). Race was documented for 65% of infants, and most were White (67.0%). One-third of infants (n = 138) were seen by fetal medicine. Most infants experienced pain through both the month and week before death (79.6%), however, infants with necrotizing enterocolitis had more symptoms in the week before death. Based on EMR, infants had more symptoms, and received more medical interventions and comfort measures during the week before death compared with the month prior. Only 35% (n = 166) received a palliative care referral. Conclusions: Although the medical profiles of infants who die in the NICU are complex, the overall number of symptoms was less than in older pediatric populations. For infants at high risk of mortality rate, providers should assess for common symptoms over time. To manage symptoms as effectively as possible, both timely and continuous communication with parents and early referral to palliative care are recommended. [ABSTRACT FROM AUTHOR]

Background: Infants in the neonatal intensive care unit experience aversive stimuli that cause pain and distress. Maintaining adequate relief from pain and distress is challenging because of infants' varying ages and stages of development and their nonverbal status. Thus, pain and distress must be interpreted by a healthcare provider or other proxy from their own observations or perceptions. There is no standard research or clinical measure for pain and distress in infants. Objective: The purpose of this analysis was to evaluate the use of the COMFORT Behavior (COMFORT-B) Scale as a measure of pain and distress in infants diagnosed with life-threatening or life-limiting illnesses in the neonatal intensive care unit in comparison with the nurse-documented Neonatal Pain, Agitation and Sedation Scale; the infants' Technology Dependence Scale; and the mothers' report of total perceived symptom scores. Methods: Infants diagnosed with life-threatening or life-limiting illnesses and hospitalized in a Level IV neonatal intensive care unit in the Midwestern United States and their parents were included. Measurement of pain and distress in infants was collected weekly from enrollment through 12 weeks or until discharge, whichever occurred first. Observations for the COMFORT-B Scale were conducted before and after standard caregiving activities. Pearson r correlations were used to compare means between pain and distress, technology dependence, and mothers' total perceived symptom scores over time. Results: Data from 78 infants (46 male and 32 female infants) of ages 23-41 weeks of gestation at birth were analyzed. No correlations were found among the COMFORT-B Scale; the Neonatal Pain, Agitation and Sedation Scale; and mothers' total perceived symptom scores. Moderate correlations were found among the Technology Dependence Scale; mothers' total perceived symptom scores; and the Neonatal Pain, Agitation and Sedation Scale. Discussion: Performing COMFORT-B observations can be challenging, and it is unclear whether the information obtained from the COMFORT-B Scale added to the assessment of the infant's pain and distress that is typically recorded in the health record or from parents. Further evaluation is needed to determine if it is more reliable to collect the Neonatal Pain, Agitation and Sedation Scale scores rather than conduct observations using the COMFORT-B Scale in studies of infants with life-threatening and life-limiting illnesses in the neonatal intensive care unit. [ABSTRACT FROM AUTHOR]

Background: Neonatal intensive care unit (NICU) nurses require knowledge and skill to meet the unique needs of infants and families. Increasingly, principles of palliative care are being integrated into the NICU setting to improve the quality of care.Purpose: The purpose of this article is to describe the efforts of the End-of-Life Nursing Education Consortium (ELNEC) project and its Pediatric Curriculum, which began in 2003 to provide this education, and to also describe efforts by nurses to implement the training into their practice settings.Methods: The ELNEC Pediatric Palliative Care (ELNEC-PPC) project is a train-the-trainer educational program and evidence-based curriculum.Findings/results: Participants attend a course or receive online training and then apply the education to implement improved practices in areas such as symptom management, care at the time of death, and bereavement support for families.Implications For Research: Experiences with ELNEC-PPC have demonstrated that nurses can implement the curriculum to improve care.Implications For Practice: Continued attention to palliative care in this setting is needed, and future research is needed to evaluate the outcomes of this education and practice change. [ABSTRACT FROM AUTHOR]

Background: Palliative care is becoming an important component for infants with life-limiting or life-threatening conditions and their families. Yet palliative care practices appear to be inconsistent and sporadically used for infants.Purpose: The purpose of this study was to describe the use of an established pediatric palliative care team for seriously ill infants in a metropolitan hospital.Methods: This was a retrospective medical record review.Findings: The population included 64 infants who were admitted to a level IV neonatal intensive care unit (NICU) and then died during hospitalization between January 2015 and December 2016. Most infants died in an ICU (n = 63, 95%), and only 20 infants (31%) received palliative care consultation. Most common reasons for consultation were care coordination, defining goals of care and end-of-life planning, and symptom management.Implications For Practice: Palliative care consultation at this institution did not change the course of end-of-life care. Interventions provided by the ICU team to infants surrounding end of life were similar to those in infants receiving palliative care services from the specialists. Our findings may be useful for developing guidelines regarding how to best utilize palliative care services for infants with life-threatening conditions who are admitted to an ICU.Implications For Research: These finding support continued research in neonatal palliative care, more specifically the impact of palliative care guidelines and algorithms. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: Palliative care (PC) in the neonatal intensive care unit (NICU) is often provided exclusively to infants expected to die. Standards of care support providing PC early after diagnosis with any condition likely to impact quality of life.Purpose: To determine the state of early PC practice across populations to derive elements of early PC applicable to neonates and their families and demonstrate their application in practice.Search Strategy: Multiple literature searches were conducted from 2016 to 2019. Common keywords used were: palliative care; early PC; end of life, neonate; NICU; perinatal PC; pediatric PC; family-centered care; advanced care planning; palliative care consultant; and shared decision-making.Findings: Early PC is an emerging practice in adult, pediatric, and perinatal populations that has been shown to be helpful for and recommended by families. Three key elements of early PC in the NICU are shared decision-making, care planning, and coping with distress. A hypothetical case of a 24-week infant is presented to illustrate how findings may be applied. Evidence supports expansion of neonatal PC to include infants and families without terminal diagnoses and initiation earlier in care.Implications For Practice: Involving parents more fully in care planning activities and decision-making and providing structured support for them to cope with distress despite their child's prognosis are essential to early PC.Implications For Research: As early PC is incorporated into practice, strategies should be evaluated for feasibility and efficacy to improve parental and neonatal outcomes. Researchers should consider engaging NICU parent stakeholders in leading early PC program development and research. [ABSTRACT FROM AUTHOR]

Objective: The aim of this study is to report the benefits and burdens of palliative research participation on children, siblings, parents, clinicians, and researchers. Background: Pediatric palliative care requires research to mature the science and improve interventions. A tension exists between the desire to enhance palliative and end-of-life care for children and their families and the need to protect these potentially vulnerable populations from untoward burdens. Methods: Systematic review followed PRISMA guidelines with prepared protocol registered as PROSPERO #CRD42018087304. MEDLINE, CINAHL, PsycINFO, EMBASE, Scopus, and The Cochrane Library were searched (2000–2017). English-language studies depicting the benefits or burdens of palliative care or end-of-life research participation on either pediatric patients and/or their family members, clinicians, or study teams were eligible for inclusion. Study quality was appraised using the Mixed Methods Appraisal Tool (MMAT). Results: Twenty-four studies met final inclusion criteria. The benefit or burden of palliative care research participation was reported for the child in 6 papers; siblings in 2; parents in 19; clinicians in 3; and researchers in 5 papers. Benefits were more heavily emphasized by patients and family members, whereas burdens were more prominently emphasized by researchers and clinicians. No paper utilized a validated benefit/burden scale. Discussion: The lack of published exploration into the benefits and burdens of those asked to take part in pediatric palliative care research and those conducting the research is striking. There is a need for implementation of a validated benefit/burden instrument or interview measure as part of pediatric palliative and end-of-life research design and reporting. [ABSTRACT FROM AUTHOR]