Key factors in parental end-of-life decision making for surgical necrotizing enterocolitis: A Delphi study

Area of Science:

• Neonatal Medicine
• Pediatric Surgery
• Bioethics

Background:

• Necrotizing enterocolitis (NEC) is a severe condition in preterm neonates, often necessitating surgical intervention.
• While surgery offers a chance of survival, its consequences may not align with the infant's best interests, prompting consideration of palliative care.
• Parents and physicians face difficult decisions regarding surgical treatment versus palliative care for NEC.

Purpose of the Study:

• To identify and prioritize key factors that parents consider when deciding between surgical intervention and palliative care for severe NEC in preterm neonates.
• To lay the groundwork for a decision support tool to aid parents in this critical process.

Main Methods:

• A two-round Delphi study involving three Dutch parent panels with varying experiences of NEC and preterm birth.
• Participants rated 31 decision factors on a scale of 1 to 9.
• A consensus meeting of the steering committee finalized key factors based on Delphi round results.

Main Results:

• Fifteen key decision factors were identified for parents facing surgical NEC decisions.
• Top priorities included the chance of infant death, short- and long-term physical consequences, and future independence.
• Parental decisions were also influenced by physician recommendations, feelings of responsibility, and hope.

Conclusions:

• This study identified fifteen crucial decision factors for Dutch parents confronting surgical NEC in preterm infants.
• These findings will guide the development of a decision support tool to assist parents in making informed end-of-life care decisions.