Thorvilson, Megan J.

Abstract Home parenteral nutrition (HPN) is a life‐sustaining therapy traditionally used as a bridge to enteral autonomy or intestinal transplantation. Increasingly, it is used for intractable feeding intolerance (IFI), which can occur near the end of life (EOL) in children with severe neurological impairment (SNI). In these cases, HPN use differs from its historical role and requires tailored outpatient planning. We report a retrospective case series of four children with SNI who developed IFI and received HPN as part of their EOL care. The pediatric palliative care team (PPCT) was involved in all cases during HPN decision‐making and planning. The pediatric nutrition support team (PNST) and PPCT collaborated to provide individualized, goal‐directed care. Patients ranged from 1 to 12 years old, with HPN durations between 5 weeks and 2 years. All were enrolled in hospice while receiving HPN. Plans were made through shared decision‐making, reflecting each family's values, and included tailored approaches to laboratory monitoring, febrile episodes, line care, growth assessment, and follow‐up. HPN at EOL requires careful ethical consideration, particularly of autonomy because families often find comfort in providing nutrition. IFI is often unanticipated, and prognoses are uncertain. With the combined expertise of PNST and PPCT, HPN can be used meaningfully at EOL, supporting family values, easing suffering, and creating space for peace and connection.

Abstract Caring for the extremely premature infant born in the grey zone of viability is the most difficult area of neonatal medicine. Little research has been done on antenatal communication between neonatologists and parents anticipating the birth of a periviable infant. This article analyses 25 antenatal consultations between neonatologists and parents in one Midwestern hospital in the United States of America. It explores how neonatologists position comfort care as one of two predominant care trajectories for extremely premature infants born into the grey zone of viability. We found comfort care featured minimally in and was often marginalised by neonatologists’ language. The two dominant discourses contributing to this were acute medicine’s life‐saving capacity and a limited temporal window marked by gestational age where comfort measures were deemed appropriate. Antenatal consultations framed by shared decision‐making could be approached as a form of care characterised by a relational openness and responsiveness to parents’ views on care. This asks neonatologists to enter antenatal consultations for periviability without knowing ahead of time which care trajectory will necessarily call one’s attention or the particular response one should take, thus highlighting the skills of reflexivity in addition to an attentiveness and openness towards those receiving care.

All children experiencing child maltreatment/neglect require child abuse experts to offer the complex care needed, and for the child with potential life-limiting injuries, both child abuse and palliative care experts are integral to the team. The current literature describes the involvement of child abuse pediatrics after patients are already engaged with pediatric palliative care (PPC). Here we describe a case of an infant who suffered injuries after nonaccidental trauma (NAT) and the subsequent role of PPC. In the case described, PPC was consulted in the context of a grave neurological prognosis after NAT. The mother retained full decision-making rights, and she wanted to protect her daughter from a life dependent on others and medical technology. Our team supported the mother in the face of multiple layers of loss—her daughter, her relationship with the perpetrator, her home, and the threat of job loss due to time away.