Advice to Clinicians From Expectant Parents at Extreme Prematurity: A Multimethod Study.

BACKGROUND AND OBJECTIVES: Despite recommendations for patient-centered counseling on extreme prematurity, clinicians often miss opportunities to communicate in a way that facilitates parental knowledge, decision-making, and emotional support. In this study, we aimed to determine empirical, parent-derived recommendations and advice for clinicians counseling on extreme prematurity. METHODS: Pregnant women (and their partners) admitted at 22 0/7 to 25 6/7 weeks' estimated gestation participated in postantenatal counseling semi-structured interviews or questionnaires to explore parental preferences in the counseling process, including advice to clinicians. Thematic analysis was performed. RESULTS: A total of 39 interviews and 47 questionnaires, representing 62 total prenatal consultations, were completed. Thematic analysis of participants' advice to clinicians from both interview and questionnaire data resulted in 14 parent-derived recommendations to clinicians who counsel expectant parents at extreme prematurity. Parental recommendations related to compassionately engaging, supporting, and communicating with families, as well as aligning teams and following up. CONCLUSIONS: We present an empirical parent-derived, family-centered, and practical approach for clinicians counseling on extreme prematurity. Future studies should include a more diverse patient population and assess the impact of these recommendations on the counseling process and outcomes.

Implementing modified family integrated care in a U.S. neonatal intensive care unit: nursing perspectives and effects on parents.

OBJECTIVES: (1) Assess effects of a modified Family Integrated Care (FICare) model on U.S. Neonatal Intensive Care Unit (NICU) parents; (2) Evaluate NICU nurses' perspectives. DESIGN: Case -control design with parental stress assessed before and after NICU-wide FICare implementation using Parent Stressor Scale: NICU (PSS:NICU) questionnaire. In addition, stratification by degree of participation evaluated associations with parental stress, parental-staff communication and discharge readiness. Questionnaires captured nursing perspectives on FICare. RESULTS: 79 parents (88%) participated prior to FICare; 90 (90%) after. Parent stress was lower (p < 0.001) with FICare. Parents learning 5-15 infant-care skills had lower stress compared to those learning <5 (p = 0.008). Parent utilization of an educational app was associated with improved communication frequency (p = 0.007) and quality (p = 0.012). Bedside NICU nurses reported multiple positive associations of FICare for parents and staff. CONCLUSIONS: Any degree of FICare participation decreases parental stress; increased participation has multiple positive associations.

A Qualitative Study of Parental Perspectives on Prenatal Counseling at Extreme Prematurity.

OBJECTIVE: To determine parental preferred language, terminology, and approach after prenatal counseling for an anticipated extremely preterm delivery. STUDY DESIGN: Pregnant persons (and their partners) admitted at 220/7-256/7 weeks of estimated gestation participated in post antenatal-counseling semistructured interviews to explore preferred language and decision-making approaches of their antenatal counseling session. Interviews were audio-recorded and transcribed, and thematic analysis of the data was performed. RESULTS: Thirty-nine interviews were conducted representing 28 total prenatal consults. Analysis identified 2 overarching themes impacting the whole counseling experience: the need for reassurance and compassionate communication, while parents traveled along a dynamic decision-making journey they described as fluid and ever-changing. Related themes included the following: (1) Finding Balance: parents reported the importance of balancing positivity and negativity as well as tailoring the amount of information, (2) The Unspoken: parents described assumptions and inferences surrounding language, resuscitation options, and values that can cloud the counseling process, (3) Making the Intangible Tangible: parents reported the importance of varied communication strategies, for example, visuals to better anticipate and prepare, and (4) Team Synergism: Parents expressed desire for communication and consistency among and between teams, which increased trust. CONCLUSIONS: Parents facing extremely premature delivery generally did not report remembering specific terminology used during prenatal consultation but rather how the language and counseling approach made them feel and affected the decision-making process. These findings have implications for further research and educational intervention design to improve clinicians' counseling practices to better reflect parental preferences and ultimately improve counseling outcomes.

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.

Concern for mortality in the neonatal intensive care unit (NICU): parent and physician perspectives.

OBJECTIVE: The objectives of this study are as follows: (1) to determine the incidence of parental concern for mortality (PCM) and any potential predictors for it among parents of infants admitted to the Neonatal Intensive Care Unit (NICU), and (2) to explore physicians' perspectives with respect to PCM in the NICU and to examine current practices of addressing it. STUDY DESIGN: Separate questionnaires were distributed to members of the AAP Section on Perinatal-Neonatal Medicine District I and to NICU parents post discharge, to gather perspectives from each group. A χ2-analysis and linear regression were performed. RESULTS: Response rate was 29% for the physician survey and 63% for the parent survey. Physician respondents believed that PCM increased with decreasing gestational age (GA) and reported having fewer discussions with parents of older infants about PCM. Parental report of PCM incidence was 48% overall. PCM was not associated with GA. PCM was associated with infant length of stay and occurrence of at least one discussion about PCM with physicians. Fifty-three percent of parents reported never having a discussion regarding PCM. CONCLUSION: Although physicians believe that PCM increases with decreasing GA, parental report suggests that PCM is not associated with GA. Parents of full-term infants in particular may experience more PCM and desire for discussion than is currently recognized.

"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.

Attitudes towards the resuscitation of periviable infants: a national survey of American Muslim physicians.

AIM: To examine the associations between American Muslim physicians' characteristics and intended behaviours towards resuscitation of 22- and 23-week gestation infants. METHODS: This national survey of physician members of the Islamic Medical Association of North America inquired about physician religiosity, their practice of referring to Islamic resources for bioethical guidance, their preferred model of patient-doctor decision-making and the perceived importance of quality-of-life determinations with respect to medical decision-making. Four vignettes described birth of a 22- and a 23-week gestation infant. Respondents were given estimated survival data for each and asked whether they would attempt resuscitation. RESULTS: A total of 255 of 626 responses received. About 51% and 85% of respondents believed that a 22- and a 23-week gestation infant should be resuscitated, respectively. If parents opposed resuscitation, 44% (22 weeks) and 46% (23 weeks) of respondents still endorsed resuscitating. Respondents who were more religious, referred more often to Islamic bioethical resources and did not believe that quality-of-life determinations were tied to life's value had greater odds of endorsing resuscitation in many of the scenarios. CONCLUSION: American Muslim physicians have high rates of support for delivery room resuscitation of periviable infants. Their intended behaviour appears to associate with religious values.

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.

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.

Antenatal calcium channel blocker exposure and subsequent patent ductus arteriosus in extremely low-birth-weight infants.

This study aimed to assess whether tocolytic fetal exposure to antenatal calcium channel blockers (aCCB) increases the risk for hemodynamically significant patent ductus arteriosus (hsPDA) in extremely low-birth-weight (ELBW) infants. This case-control study investigated ELBW infants (<1,000 g) without cardiac defects in a level 3 neonatal intensive care unit who had survived at least 7 days. Nifedipine was the only aCCB used for this study population. The measurements included the history of aCCB exposure, selected maternal data, hsPDA diagnosis, gestational age at birth, birth weight, mode of delivery, sex, maternal race, location of birth, Apgar scores, and selected neonatal morbidities. The end point of the study was hsPDA, defined as an echocardiographically confirmed PDA with clinical symptoms. A total of 180 infants met the study criteria. The diagnosis was hsPDA for 56% of these patients, 20% of whom had aCCB exposure. Of the infants without hsPDA, 11% had aCCB exposure (p = 0.09). No statistically significant associations were found between aCCB exposure and hsPDA after adjustment for gestational age (odds ratio [OR], 1.5; 95% confidence interval [CI], 0.6-3.7) or for gestational age and cumulative aCCB exposure of 100 mg or more (OR, 2.0; 95% CI, 0.6-6.5). A history of aCCB exposure does not appear to increase hsPDA risk in ELBW infants. Studies using neonatal serum nifedipine concentrations after antenatal exposure should be performed to confirm this conclusion.