Collura, Christopher

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.

AbstractIntroductionPalliative care is a critical component of pediatric oncology care. Embedded pediatric palliative care (PPC) is relatively new in pediatric hematology/oncology (PHO) and may improve access, utilization, and quality of PPC. In June 2020, the Mayo Clinic PPC service transitioned from an afternoon, physically independent clinic to an all‐day clinic embedded within PHO.MethodsRetrospective chart review was used to quantify consultation rates from PHO to PPC in 12‐month study periods before and after establishment of an embedded clinic. Changes in descriptive statistics and consult patterns were calculated. Study periods were compared using either chi‐square or Fisher's exact tests for categorical variables and Wilcox rank sum tests for continuous variables.ResultsThere was an 89% increase in consultations from PHO to PPC after initiation of an embedded clinic (n = 20 vs. n = 38 per 12 months). The absolute number of completed outpatient consults increased from three (15% of visits) pre‐embedment to fourteen (37%) post‐embedment (p = .082). The median number of days from first oncology visit to PPC assessment was unchanged after embedment (36 vs. 47 days, p = .98). Consults for solid tumors increased from 22% (n = 4) pre‐embedment to 60% (n = 18) post‐embedment (p < .05). Consults for symptom management increased from 60% (n = 12) to 87% (n = 33) (p < .05).ConclusionsEmbedment of PPC into a PHO workspace was associated with an increased number of total consults, outpatient consults, solid tumor consults, and consults for symptom management. Our “partial‐PPO” model allowed for provision of PPC in the outpatient oncology setting in a clinic where there is not enough volume to support a full‐time oncology‐focused clinician team.

Central apnea is a major cause of death in neonates with trisomy 18 (T18) and is likely due to immaturity of the respiratory drive, similar to the pathological mechanism in apnea of prematurity. Although caffeine has long been used for apnea of prematurity, its use has not yet been reported for infants with T18. Here we describe an infant with T18 receiving comfort-focused care and palliative transport home. Of utmost importance to her family was enabling the patient to spend time at home before her death. However, immediately before transport, she developed severe central apnea, raising concern that she may not survive the transfer. Caffeine was trialed in the hopes of reducing central apnea events. Its use was successful and facilitated safe transport, allowing the patient to uneventfully transition home, where she spent several meaningful weeks with her family before her death.