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

Area of Science:

• Neonatal Medicine
• Palliative Care
• Pediatric Mortality

Background:

• Infants under one year have the highest pediatric mortality rates.
• Existing guidelines for palliative care show persistent variation in neonatal end-of-life (EOL) comfort care protocols.
• This highlights a critical need to assess current practices.

Purpose of the Study:

• To evaluate current neonatal EOL comfort care practices in America.
• To assess clinician satisfaction with existing neonatal EOL comfort care protocols.
• To identify gaps in institutional guidelines and training needs.

Main Methods:

• An anonymous, electronic survey was distributed to members of the American Academy of Pediatrics Section on Neonatal-Perinatal Medicine.
• Participants included neonatologists, fellow physicians, nurses, and nurse practitioners across the U.S. and Canada.
• Survey responses were analyzed for reported institutional practices and satisfaction levels.

Main Results:

• 11.5% of respondents (346/3000) reported wide geographic distribution and high levels of intensive care.
• Nearly half of institutions (45.2%) lack formal neonatal comfort care guidelines.
• Existing guidelines often omit crucial elements like pain management, gastrointestinal distress, anxiety, secretions, and physician compassion fatigue.

Conclusions:

• Significant variation exists in neonatal EOL comfort care practices nationwide, with many institutions lacking comprehensive guidelines.
• Key palliative care components, including symptom management and provider well-being, are frequently unaddressed.
• Over 91% of respondents believe their institutions would benefit from enhanced neonatal EOL care education and training.