Survey on Neonatal End-of-Life Comfort Care Guidelines Across America

Abstract

Context. Infants of age less than one year have the highest mortality rate in pediatrics. The American Academy of Pediatrics published guidelines for palliative care in 2013; however, significant variation persists among local protocols addressing neonatal comfort care at the end-of-life (EOL). Objectives. The purpose of this study was to evaluate current neonatal EOL comfort care practices and clinician satisfaction across America. Methods. After institutional review board approval (516005), an anonymous, electronic survey was sent to members of the American Academy of Pediatrics Section on Neonatal-Perinatal Medicine. Members of the listserv include neonatologists, neonatal fellow physicians, neonatal nurses, and neonatal nurse practitioners from across America (U.S. and Canada). Results. There were 346/3000 (11.5%) responses with wide geographic distribution and high levels of intensive care responding (46.1% Level IV, 50.9% Level III, 3.0% Level II). Nearly half (45.2%) reported that their primary institution did not have neonatal comfort care guidelines. Of those reporting institutional neonatal comfort care guidelines, 19.1% do not address pain symptom management. Most guidelines also do not address gastrointestinal distress, anxiety, or secretions. Thirty-nine percent of respondents stated that their institution did not address physician compassion fatigue. Overall, 91.8% of respondents felt that their institution would benefit from further education/training in neonatal EOL care. Conclusion. Across America, respondents confirmed significant variation and verified many institutions do not formally address neonatal EOL comfort care. Institutions with guidelines commonly appear to lack crucial areas of palliative care including patient symptom management and provider compassion fatigue. The overwhelming majority of respondents felt that their institutions would benefit from further neonatal EOL care training.

Delivering Pediatric Palliative Care: From Denial, Palliphobia, Pallilalia to Palliactive

“…That said, when providing interdisciplinary PPC services for children, it can be expected that most children do not have a malignancy [ 17 ] and about half of the patients would be infants. Despite the great need in neonatology, more than 45% of institution in Canada and the United States not have neonatal comfort care guidelines, and of those reporting institutional neonatal comfort care guidelines, 19.1% do not address pain symptom management [ 18 ]. More than 90% of respondents in the same study felt that their institution would benefit from further education and training in neonatal EOL care.…”

Fostering Vicarious Resilience for Perinatal Palliative Care Professionals

“…Lack of education and training has frequently been cited as a barrier to the provision of consistent and comprehensive palliative and bereavement support in the neonatal setting ( 7 , 54 – 57 ). Haug et al ( 55 ) demonstrated, in a nationwide study, that fewer than a third of institutions offer any formal training for physicians or staff on perinatal palliative or comfort care. However, research has shown that professionals exhibit better emotional coping when they have been provided with education related to bereavement and end-of-life issues ( 56 , 58 – 60 ).…”

“…However, research has shown that professionals exhibit better emotional coping when they have been provided with education related to bereavement and end-of-life issues ( 56 , 58 – 60 ). For example, a strong majority (91.8%) of neonatologists involved in that study indicated that increased education in perinatal palliative and end-of-life care would be beneficial ( 55 ). Elements of self-care activity, as well as the symptoms and risk factors for both burnout and compassion fatigue, should be included in the education for perinatal palliative care professionals ( 7 , 61 ).…”

End-of-Life Care for Neonates: Assessing and Addressing Pain and Distressing Symptoms

“…Neonatal end-of-life (EOL) care includes addressing pain and other distressing symptoms (1,7,10,11). Neonatal intensive care units (NICUs) are generally competent in EOL care of neonates; however, evidence shows there are wide variations in methods for evaluating and addressing symptoms (1,12). This variation likely stems from limited evidence regarding neonatal EOL symptom management given the lack of on-label neonatal pharmacologic treatments (5,10).…”

“…This variation likely stems from limited evidence regarding neonatal EOL symptom management given the lack of on-label neonatal pharmacologic treatments (5,10). A 2016 survey showed only 55% of NICUs in the United States have a neonatal EOL guideline, and 45% do not have access to a palliative care team, showing there is much room for improvement regarding neonatal EOL care (1). This review aims to incorporate scientific research evidence with clinical expertise to aid in assessing and addressing neonatal EOL symptoms.…”