The use of projected autonomy in antenatal shared decision-making for periviable neonates: a qualitative study.

BACKGROUND: In this study, we assessed the communication strategies used by neonatologists in antenatal consultations which may influence decision-making when determining whether to provide resuscitation or comfort measures only in the care of periviable neonates. METHODS: This study employed a qualitative study design using inductive thematic discourse analysis of 'naturally occurring data' in the form of antenatal conversations around resuscitation decisions at the grey zone of viability. The study occurred between February 2017 and June 2018 on a labor and delivery unit within a large Midwestern tertiary care hospital. Participants included 25 mothers who were admitted to the study hospital with anticipated delivery in the grey zone of viability and practicing neonatologists or neonatology fellows who partnered in antenatal consultation. We used a two-stage inductive analytic process to focus on how neonatologists' discourses constructed SDM in antenatal consultations. First, we used a thematic discourse analysis to interpret the recurring patterns of meaning within the transcribed antenatal consultations, and second, we theorized the subsequent effects of these discourses on shaping the context of SDM in antenatal encounters. RESULTS: In this qualitative study, that included discourse analysis of real-time audio conversations in 25 antenatal consults, neonatologists used language that creates projected autonomy through (i) descriptions of fetal physiology (ii) development of the fetus's presence, and (iii) fetal role in decision-making. CONCLUSION: Discourse analysis of real-time audio conversations in antenatal consultations was revelatory of how various discursive patterns brought the fetus into decision-making, thus changing who is considered the key actor in SDM.

The Role of Pediatric Palliative Care Following Nonaccidental Trauma.

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.

Novel Use of Intranasal Dexmedetomidine for Refractory Irritability in Pediatric Home Care.

Background: Dexmedetomidine is a selective alpha-2 agonist with sedative, analgesic, and anxiolytic properties used intravenously for procedural sedation and in the intensive care unit. The reported use of intranasal (IN) dexmedetomidine for symptom management in pediatric palliative care is limited. Case History: A boy with cardiofaciocutaneous syndrome and refractory irritability was supported by pediatric palliative care throughout numerous hospitalizations for goals of care discussions and pain and symptom management. Given functional and multiorgan system deterioration, he was enrolled in home hospice to optimize comfort measures at anticipated end of life. After the addition of scheduled IN dexmedetomidine for management of irritability, the boy demonstrated marked improvement in comfort and sleep. Conclusion: This case report shows the successful use of IN dexmedetomidine for management of refractory irritability with no noted adverse effects. Future studies and use of this medication will need to consider potential indications, optimal dosing, and long-term effects in the pediatric palliative care setting.

Caffeine for the Treatment of Central Apnea in Trisomy 18: A Case Study in the Novel Use of Methylxanthines in Palliative Transport.

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.

Inpatient pediatric chaplain service utilization among children with chronic, non-cancer diseases.

Despite the broad importance of pediatric spiritual care, most research focuses on oncologic and palliative care contexts. We aim to describe the utilization of pediatric chaplain services by children hospitalized for non-cancer chronic illnesses and to identify factors that predict utilization of chaplain services. Among 629 patients with 915 admissions, we found chaplain services were utilized in 5.0% of admissions. Utilization was similar between religiously affiliated patients (7.5%, 95%CI [5.3-10.6%]) and un-affiliated patients (6.4%, [3.6-11.0%]). Christian patients (7.3% [5.1-10.5%]) demonstrated similar utilization as non-Christian patients (7.0% [4.3-11.2%]). Utilization was significantly higher among patients with LOS >2 days (10.8% [7.9-14.6%]), compared to LOS ≤2 (1.7% [0.9-3.1%]). These results may represent an addressable gap in spiritual care, and they highlight an opportunity for pediatric chaplains to play a larger role in the holistic care of hospitalized children with chronic diseases, regardless of religious affiliation.

Uncertainty at the Limits of Viability: A Qualitative Study of Antenatal Consultations.

BACKGROUND AND OBJECTIVES: Antenatal consultation between a neonatologist and expectant parent(s) may determine if resuscitation is provided for or withheld from neonates born in the gray zone of viability. In this study, we sought to gain a deeper understanding of uncertainties present and neonatologists' communication strategies regarding such uncertainties in this shared decision-making. METHODS: A prospective, qualitative study using transcriptions of audio-recorded antenatal consultations between a neonatologist and expectant parent(s) was conducted. Pregnant women were eligible if anticipating delivery in the gray zone of viability (22 0/7-24 6/7 weeks' gestation). Over 18 months, 25 of 28 pregnant women approached consented to participate. Applied thematic analysis was used to inductively derive and examine conceptual themes. RESULTS: Inductive analysis of consult transcripts revealed uncertainty as a central theme. Several subthemes relating to uncertainty were also derived, including the timing of delivery, NICU course, individual characteristics (of physician, expectant parent(s), and fetus or neonate), and consequences of the decision for the expectant parent(s). Analysis revealed that uncertainty was actively managed by neonatologists through a variety of strategies, including providing more information, acknowledging the limits of medicine, acknowledging and accepting uncertainty, holding hope, and relationship building. CONCLUSIONS: Uncertainty is pervasive within the antenatal consultation for periviable neonates and likely plays a significant role in decision-making toward postnatal resuscitative efforts. Uncertainty complicated, or even paralyzed, decision-making efforts while also providing reassurance toward a positive outcome. Directions for future study should consider whether advanced communication training modulates the impact that uncertainty plays in the shared decision-making encounter.

Homeward Bound: A Case Series of Cross-Cultural Care at End of Life, Enhanced by Pediatric Palliative Transport.

For most families, the preferred location of death for their child is home, yet most children still die in the hospital. Many children with life-threatening and life-limiting illness are medically dependent on technology, and palliative transport can serve as a bridge from the intensive care unit to the family's home to achieve family-centered goals of care. Palliative transport may also present an opportunity to prioritize cultural care and rituals at end of life which cannot be provided in the hospital. We describe a case series of pediatric patients from communities espousing markedly diverse cross-cultural values and limited financial resources. Specific cultural considerations at end of life for these children included optimizing the presence of the shared community or tribe, the centrality of healing rituals, and varied attitudes toward withdrawal of life-sustaining medical treatment. By addressing each of these components, we were able to coordinate palliative transport to enhance cross-cultural care and meaning at end of life for children with life-limiting illness.

Incompatible with Care: Examining Trisomy 18 Medical Discourse and Families' Counter-discourse for Recuperative Ethos.

Parents whose child is diagnosed with a serious disease such as trisomy 18 first rely on the medical community for an accurate description and prognosis. In the case of trisomy 18, however, many families are told the disease is "incompatible with life" even though some children with the condition live for several years. This paper considers parents' response to current medical discourse concerning trisomy 18 by examining blogs written by the parents of those diagnosed. Using interpretive humanistic reading and foregrounding Cathryn Molloy's recuperative ethos theory (2015), we find that parents demonstrate recuperative ethos in response to physicians' descriptions of trisomy 18, particularly in rhetoric addressing survival, medicalized language, and religious and/or spiritual rhetoric. We argue that, by using language such as "incompatible with life," physicians distance themselves from families, creating not care, but the very gulf that requires recuperation. We conclude that medical professionals would do well to engage with the trisomy 18 community-including learning from blogs and online forums- employ palliative care practices, and seek more accurate, descriptive language that is compatible with care.