Deliveries at extreme prematurity: outcomes, approaches, institutional variation, and uncertainty.

PURPOSE OF REVIEW: Medical decision making and practices surrounding extremely premature birth remains challenging for parents and care providers alike. Recently, concerns have been raised regarding wide practice variation, selection bias, and the limitations of outcomes data in this population. The purpose of this review is to summarize the recent literature relevant to deliveries at extreme prematurity with a focus on outcomes, approaches, and institutional variation. RECENT FINDINGS: Newer data suggest that evidence-based clinical guidelines and protocols for both pregnant women and infants at extreme prematurity are emerging and may improve care and outcomes at lower gestational ages. It has also been recently shown that wide practice variation, selection bias, and methodological limitations of outcomes data reporting with respect to deliveries at extreme prematurity exist. SUMMARY: Counseling at extreme prematurity should prioritize eliciting parental values and preferences with the goal of personalized shared decision-making. Providers should recognize limitations in counseling families at extreme prematurity, including selection bias, institutional variation, outcomes inaccuracies, prognostic uncertainty, and implicit biases. Standardized reporting of perinatal outcomes should be developed to help alleviate current outcomes misrepresentations and improve counseling at extreme prematurity. Education for providers in advanced communication skills is needed when counseling at extreme prematurity.

The therapeutic space and doctor-parent relationship in paediatrics: trainees' experiences and perspectives.

AIM: To explore paediatric trainees' experiences and perspectives regarding interactions and relationships between physicians and patients' parents. METHODS: Email survey was sent to AAP Section of Pediatric Trainees members. Trainees were asked about 40 interactions with parents as well as perceived benefits/risks and potential influences. Analysis of associations between variables and perspectives/experiences used chi-square and Fisher exact. RESULTS: Three hundred and seventy surveys were completed. Respondents participated in a median of nine interactions (IQR 7-13; range 0-37): 99.7% participated in at least one; 52% in 5-10; 41% in >10. 50% reported refusing to participate in at least one interaction following parental request; 8% refused 5-10; 1% refused >10. Electronic communication/social media domain had highest refusals and most interactions respondents believed should never be allowed. 94% agreed that interactions may be beneficial to providers: 75% identified at least one benefit; 86% one risk. Respondents who are parents or female reported increased interactions. CONCLUSION: A variety of interactions with patient's parents are common amongst paediatric trainees, who identify risks and benefits. Disagreements relative to acceptability of certain interactions points to the need for additional research. A reflective educational approach, rather than a prescriptive one, may help trainees better manage these relationships.

Do-Not-Resuscitate Orders in the Neonatal ICU: Experiences and Beliefs Among Staff.

OBJECTIVES: Studies in adult patients have shown that do-not-resuscitate orders are often associated with decreased medical intervention. In neonatology, this phenomenon has not been investigated, and how do-not-resuscitate orders potentially affect clinical care is unknown. DESIGN: Retrospective medical record data review and staff survey responses about neonatal ICU do-not-resuscitate orders. SETTING: Four academic neonatal ICUs. SUBJECTS: Clinical staff members working in each neonatal ICU. INTERVENTIONS: Survey response collection and analysis. MEASUREMENTS AND MAIN RESULTS: Participating neonatal ICUs had 14-48 beds and 120-870 admissions/yr. Frequency range of do-not-resuscitate orders was 3-11 per year. Two-hundred fifty-seven surveys were completed (46% response). Fifty-nine percent of respondents were nurses; 20% were physicians. Over the 5-year period, 44% and 17% had discussed a do-not-resuscitate order one to five times and greater than or equal to 6 times, respectively. Fifty-seven percent and 22% had cared for one to five and greater than or equal to 6 patients with do-not-resuscitate orders, respectively. Neonatologists, trainees, and nurse practitioners were more likely to report receiving training in discussing do-not-resuscitate orders or caring for such patients compared with registered nurses and respiratory therapists (p < 0.001). Forty-one percent of respondents reported caring for an infant in whom interventions had been withheld after a do-not-resuscitate order had been placed without discussing the specific withholding with the family. Twenty-seven percent had taken care of an infant in whom interventions had been withdrawn under the same circumstances. Participants with previous experiences withholding or withdrawing interventions were more likely to agree that these actions are appropriate (p < 0.001). CONCLUSIONS: Most neonatal ICU staff report experience with do-not-resuscitate orders; however, many, particularly nurses and respiratory therapists, report no training in this area. Variable beliefs with respect to withholding and withdrawing care for patients with do-not-resuscitate orders exist among staff. Because neonatal ICU patients with do-not-resuscitate orders may ultimately survive, withholding or withdrawing interventions may have long-lasting effects, which may or may not coincide with familial intentions.

"Development of a Clinical Ethics Committee De Novo at a Small Community Hospital by Addressing Needs and Potential Barriers.

Hospital ethics committees are common, but not universal, in small hospitals. A needs assessment was completed at a 155-bed community hospital in order to adapt an academic tertiary center model for a clinical ethics committee to fit the needs of the small hospital community. Of 678 questionnaires distributed, 209 were completed. Data suggested that clinical staff frequently experienced ethical dilemmas. Significantly more nonphysicians indicated that they would utilize a consultation service, if available, compared to physicians (p = 0.0067). The data also indicated that the majority of staff (greater than 80 percent) desired more education in clinical ethics. Physicians preferred annual or bi-annual hospital-wide grand rounds, compared to nonphysicians, who preferred more frequent department-based teaching. The data presented in this article were used to subsequently develop a clinical ethics support committee, the process of which is also described.

National variability in neonatal resuscitation practices at the limit of viability.

OBJECTIVE: Delivery room management of extremely premature infants is not subjected to professional regulations. In the United States, legal definitions of human viability and statutes regulating elective abortions vary by state, placing providers in an often difficult position regarding whether to attempt resuscitation when faced with the delivery of an infant of 22 to 25 weeks gestation. The objective of this study was to delineate variations in delivery room resuscitation practices of periviable infants in the United States in 2012. STUDY DESIGN: Electronic survey was sent to the members of American Academy of Pediatrics Section of Perinatal Medicine. Chi-square, Fisher exact test, and multivariate logistic regression were performed. RESULTS: A total of 758 surveys returned out of which 637 were complete. Overall 68% of providers consider 23-week gestation to be the youngest age that should be resuscitated at parental request, while 25-week gestation is considered by 51% to be the youngest age of obligatory resuscitation even with parental refusal. Responses varied when providers were separated into geographical regions based on the U.S. Census Bureau (p < 0.05). When provided with delivery room scenarios, parental preference significantly affected resuscitation attempts of 22 to 25 weeks, but not 26-week infants. In scenarios of periviable elective terminations, providers' personal belief systems influenced management of aborted fetuses. CONCLUSIONS: Regional practice variation exists independent of specific state laws. Parental request is the most important factor to providers resuscitating 22 to 25-week infants. Providers' personal belief systems influence infant management infrequently.

Paediatric trainees and end-of-life care: a needs assessment for a formal educational intervention.

BACKGROUND: Literature suggests a paucity of formal training in end-of-life care in contemporary American medical education. Similar to trainees in adult medicine, paediatric trainees are frequently involved in end-of-life cases. OBJECTIVE: To determine current experience and comfort levels among paediatric trainees when caring for dying patients with the hypothesis that more clinical experience alone would not improve comfort. METHODS: Paediatric residents, subspeciality fellows and programme directors at the University of Chicago completed a voluntary electronic needs assessment in June and July 2013. Ten question pairs determined frequency of experiencing various aspects of end-of-life care in clinical practice and comfort levels during these encounters. RESULTS: 118 respondents participated (63.8 % response rate): 66.4 % were female; 53 % had previous education in end-of-life care. The proportion of those with experience in end-of-life care increased through the third year of training, and remained at 1.0 thereafter. Conversely, positive comfort scores increased gradually throughout all six years of training to a maximum proportion of 0.45. Comfort in many specific aspects of care lagged behind experience. Previous education had a significant positive effect on comfort levels of most, but not all, aspects of care. 58 % or more of trainees desired further education on specific end-of-life topics. CONCLUSIONS: Paediatric trainees are often involved in end-of-life care but may not be comfortable in this role. More experience alone does not improve comfort levels; however, there is a positive correlation with comfort and previous education. Trainees had a strong interest in further education on a variety of end-of-life care topics.