In Focus
One Facility's Experience in Reframing Nonfeeding into a Comprehensive Palliative Care Model

https://doi.org/10.1111/1552-6909.12027Get rights and content

ABSTRACT

In Western culture, feeding is viewed as symbolic of life, and nonfeeding at the end of life is often considered unacceptable. This sentiment is magnified for infants. Reframing nonfeeding into comprehensive care can be achieved by anticipatory guidance, which can make the experience of infant death meaningful for parents. Since 2004, the George Mark Children's House, an inpatient pediatric palliative care center, has offered this model of care and supported families with challenging clinical experiences. A case study is provided.

Section snippets

Case

Baby Amy (pseudonym) was born at 37 1/2‐weeks gestation to a married couple. At 32‐weeks gestation, the pregnancy was complicated by intrauterine growth restriction, oligohydramnios, and poor fetal monitoring testing results with spontaneous decelerations. Subsequently, Amy was born by a vaginal birth with Apgars of 2 at 1 minute and 8 at 5 minutes. Amy was apneic, treated with nasal continuous positive airway pressure (NCPAP), and eventually intubated. She was then treated for suspected

Discussion

The advantages of an inpatient pediatric palliative care center for end‐of‐life care for Amy and her family were numerous. Probably the most fundamental was the paradigm shift of being able to let parents be just that, parents. Amy's parents had been unwilling to take her home with hospice fearing that they would be unable to respond to her needs promptly in the wake of her changing medical condition. At GMCH they were able to be her parents with the assurance that expert advice and

Claire Vesely, RN, BSN, is a palliative care coordinator, Children's Hospital and Research Center, Oakland, CA.

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    Claire Vesely, RN, BSN, is a palliative care coordinator, Children's Hospital and Research Center, Oakland, CA.

    Barbara Beach, MD, is cofounder and medical director, George Mark Children's House, San Leandro, CA and a pediatric oncologist, Children's Hospital and Research Center, Oakland, CA.

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