End-of-Life Care for Neonates: Assessing and Addressing Pain and Distressing Symptoms
end-of-life care; neonatal; neonatal hospice; neonatal pain; neonatal palliative care
One of the most essential components of end-of-life (EOL) care for neonates is assessing and addressing distressing symptoms. There is limited evidence to guide neonatal EOL symptom management and therefore significant variety in treatment (1-4). EOL neonatal palliative care should include identifying and relieving distressing symptoms. Symptoms to manage at neonatal EOL may include pain using both non-pharmacologic and pharmacologic comfort measures, respiratory distress, secretions, agitation and neurologic symptoms, nutrition and gastrointestinal distress, and skin care. Also of equal importance is communication surrounding familial existential distress and psychosocial care (1, 5-7). Institutions should implement a guideline for neonatal EOL care as guidelines have been shown to decrease variability of interventions and increase use of pharmacologic symptom management (4). Providers should consult with palliative care teams if available for added multidisciplinary support for family and staff, which has been shown to enhance EOL care in neonates (8, 9).
Haug S; Dye A; Durrani S
Frontiers in Pediatrics
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.3389/fped.2020.574180" target="_blank" rel="noreferrer noopener">10.3389/fped.2020.574180</a>
Survey on Neonatal End-of-Life Comfort Care Guidelines Across America
anxiety; compassion fatigue; pediatrics; intensive care; comfort; palliative therapy; Canada; Infant; Newborn; Palliative Care; bodily secretions; newborn; satisfaction; institutional review; neonatologist; practice guideline; human; terminal care; article; pain; gastrointestinal symptom; geographic distribution; neonatal nurse practitioner; perinatal care
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.
Haug S; Farooqi S; Wilson CG; Hopper A; Oei G; Carter B
Journal of Pain and Symptom Management
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2017.10.023" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2017.10.023</a>