One facility's experience in reframing nonfeeding into a comprehensive palliative care model

Area of Science:

• Pediatrics
• Palliative Care
• Bioethics

Background:

• Western cultural views often equate feeding with life, making nonfeeding at end-of-life, particularly for infants, culturally challenging.
• This societal perspective can create significant distress for parents when considering or experiencing infant death.

Purpose of the Study:

• To explore reframing the concept of nonfeeding in infant end-of-life care.
• To demonstrate how anticipatory guidance can transform the experience of infant death into a meaningful one for parents.

Main Methods:

• A case study approach is presented.
• The model of care implemented at George Mark Children's House, an inpatient pediatric palliative care center since 2004, is described.

Main Results:

• The George Mark Children's House has successfully implemented a model of care that integrates nonfeeding into comprehensive palliative support.
• This approach aims to provide meaningful experiences for families navigating infant death.

Conclusions:

• Anticipatory guidance is key to reframing nonfeeding as a component of holistic pediatric palliative care.
• This reframing can support parents in finding meaning during the difficult experience of infant death.