Influence of Genetic Information on Neonatologists' Decisions: A Psychological Experiment.

BACKGROUND AND OBJECTIVES: Genetic testing is expanding among ill neonates, yet the influence of genetic results on medical decision-making is not clear. With this study, we sought to determine how different types of genetic information with uncertain implications for prognosis influence clinicians' decisions to recommend intensive versus palliative care. METHODS: We conducted a national study of neonatologists using a split sample experimental design. The questionnaire contained 4 clinical vignettes. Participants were randomly assigned to see one of 2 versions that varied only regarding whether they included the following genetic findings: (1) a variant of uncertain significance; (2) a genetic diagnosis that affects neurodevelopment but not acute survival; (3) a genetic versus nongenetic etiology of equally severe pathology; (4) a pending genetic testing result. Physicians answered questions about recommendations they would make for the patient described in each vignette. RESULTS: Vignette versions that included a variant of uncertain significance, a diagnosis foreshadowing neurodevelopmental impairment, or a genetic etiology of disease were all associated with an increased likelihood of recommending palliative rather than intensive care. A pending genetic test result did not have a significant effect on care recommendations. CONCLUSIONS: Findings from this study of hypothetical cases suggest neonatologists apply uncertain genetic findings or those that herald neurodevelopmental disability in problematic ways. As genetic testing expands, understanding how it is used in decision-making and educating clinicians regarding appropriate use are paramount.

Moral Distress in Neonatology.

BACKGROUND AND OBJECTIVES: To longitudinally examine the nature of moral distress (MoD) experienced by clinicians caring for extremely low gestational age neonates. METHODS: Neonatologists, medical trainees, and nurses were surveyed at regular intervals on their experience of MoD and their preferred level of care in relation to 99 neonates born <28 weeks' gestational age managed from birth until discharge or death in 2 tertiary NICUs. Clinicians reporting significant distress (≥6 of 10 on Wocial's Moral Distress Thermometer) were asked to provide open-ended responses on why they experienced MoD. Descriptive statistics were used to analyze frequency and intensity of MoD across different clinician characteristics. Open-ended responses were analyzed by using mixed methods. RESULTS: Over 18 months, 4593 of 5332 surveys (86% response rate) were collected. MoD was reported on 687 (15%) survey occasions; 91% of neonates elicited MoD during their hospitalization. In their open-ended answers, clinicians invoked 5 main themes to explain their distress: (1) infant-centered reasons (83%), including illness severity, predicted outcomes, and disproportionate care; (2) management plans (26%); (3) family-centered reasons (19%); (4) parental decision-making (16%); and (5) provider-centered reasons (15%). MoD was strongly associated with the perception of "parents wanting too much." Neonatologists experienced less distress and were more likely than nurses and trainees to align preferred levels of care with family wishes. CONCLUSIONS: The majority of preterm infants will generate some MoD; however, it is rarely shared and of a sustained nature. The main constraint reported by clinicians was "parents wanting too much," leading to disproportionate care.

End-of-life decisions in neonatal care: a conversation analytical study.

OBJECTIVE: To understand the dynamics of conversations between neonatologists and parents concerning limitation of life-sustaining treatments. DESIGN: Formal conversations were recorded, transcribed and analysed according to the conventions and methods of conversation analysis. SETTING: Two tertiary neonatal intensive care units. PARTICIPANTS: Consultant neonatal specialists and families. MAIN OUTCOME MEASURES: We used conversation analysis and developed an inductive coding scheme for conversations based on the introduction of limiting life-sustaining treatments and on the parental responses. RESULTS: From recordings with 51 families, we identified 27 conversations about limiting life support with 20 families and 14 doctors. Neonatologists adopted three broad strategies: (1) 'recommendations', in which one course of action is presented and explicitly endorsed as the best course of action, (2) a 'single-option choice' format (conditional: referring to a choice that should be made, but without specifying or listing options), and (3) options (where the doctor explicitly refers to or lists options). Our conversation analysis-informed coding scheme was based on the opportunities available for parents to ask questions and assert their preference with minimal interactional constraint or pressure for a certain type of response. Response scores for parents presented with conditional formats (n=15, median 5.0) and options (n=10, median 5.0) were significantly higher than for those parents presented with 'recommendations' (n=16, median 3.75; p=0.002) and parents were more likely to express preferences (p=0.005). CONCLUSION: Encouraging different approaches to conversations about limitation of life-supporting treatment may lead to better parent engagement and less misalignment between the conversational partners.

A Yoga-Based Program Decreases Physician Burnout in Neonatologists and Obstetricians at an Academic Medical Center.

BACKGROUND: Nearly half of U.S. pediatricians have symptoms of burnout. This pilot study examined the feasibility of a 6-week yoga-based program (RISE) for neonatologists and obstetricians at Brigham and Women's Hospital and studied the effects on burnout, professional fulfillment, and psychological health. METHODS: Participants were recruited via email to participate either in both program and research study, or exclusively the program. RISE was delivered 1 hour/week during the workday for 6 consecutive weeks either in-person or remotely; 18 physicians participated, 12 completed post-program, and 11 completed 2-month follow-up. The questionnaires assessed burnout and measures of psychological health, professional fulfillment, work exhaustion, interpersonal disengagement/burnout (PFI), mindfulness (FFMQ), perceived stress (PSS), positive/negative affect (PANAS), resilience (RS), anxiety/depression/sleep disturbances (PROMIS), at baseline, post-program, and 2 months after RISE. FINDINGS: Average attendance in-person was 2.8 sessions and remotely 1.4 sessions (4.2/6 sessions). Participants demonstrating total burnout reduced from 50.0% at baseline to 9.1% post-program. Participants demonstrating professional fulfillment were 8.3% at baseline and 27.3% post-program. Paired samples t-tests revealed statistically significant improvements in burnout, professional fulfillment, interpersonal disengagement, stress, resilience, anxiety, and depression at post-program compared with baseline (N = 12, all ps < .05). At 2-month follow-up, statistically significant improvements in interpersonal disengagement, resilience, and mindfulness (N = 11, all ps < .05) compared with baseline were reported. CONCLUSIONS/APPLICATION TO PRACTICE: RISE is feasible within a workday and may address burnout and other psychological health measures in physicians with effects potentially sustainable over 2 months. Occupational health practitioners in health care should consider this type of intervention for their workers.

Limitation of life-sustaining treatment in NICU: Physicians' beliefs and attitudes in the Buenos Aires region.

OBJECTIVE: To explore the ethical beliefs and attitudes of Argentinean neonatologists regarding limitation of life-sustaining treatment (LST) for very sick infants. METHODS: We used an anonymous questionnaire including direct questions and hypothetical clinical cases (inevitable demise and anticipated survival with severe long-term disability). Multivariable analysis was carried out to assess the relation between type of clinical case and physicians' LST attitudes. RESULTS: Overall, 315 neonatologists in 34 units in the Buenos Aires region participated (response rate 54%). Most responders would agree with decisions to start or continue LST. In both clinical cases, continuing current treatment with no therapeutic escalation was the only form of LST limitation acceptable to a substantial proportion (about 60%) of neonatologists. Agreement with LST limitation was slightly but significantly more likely when death was inevitable. CONCLUSION: Argentinean neonatologists showed a conservative attitude regarding LST limitation. Patient prognosis and options of non-treatment decision significantly influenced their choices.

Psychological support in end-of-life decision-making in neonatal intensive care units: Full population survey among neonatologists and neonatal nurses.

BACKGROUND: Moral distress and burnout related to end-of-life decisions in neonates is common in neonatologists and nurses working in neonatal intensive care units. Attention to their emotional burden and psychological support in research is lacking. AIM: To evaluate perceived psychological support in relation to end-of-life decisions of neonatologists and nurses working in Flemish neonatal intensive care units and to analyse whether or not this support is sufficient. DESIGN/PARTICIPANTS: A self-administered questionnaire was sent to all neonatologists and neonatal nurses of all eight Flemish neonatal intensive care units (Belgium) in May 2017. The response rate was 63% (52/83) for neonatologists and 46% (250/527) for nurses. Respondents indicated their level of agreement (5-point Likert-type scale) with seven statements regarding psychological support. RESULTS: About 70% of neonatologists and nurses reported experiencing more stress than normal when confronted with an end-of-life decision; 86% of neonatologists feel supported by their colleagues when they make end-of-life decisions, 45% of nurses feel that the treating physician listens to their opinion when end-of-life decisions are made. About 60% of both neonatologists and nurses would like more psychological support offered by their department when confronted with end-of-life decisions, and 41% of neonatologists and 50% of nurses stated they did not have enough psychological support from their department when a patient died. Demographic groups did not differ in terms of perceived lack of sufficient support. CONCLUSION: Even though neonatal intensive care unit colleagues generally support each other in difficult end-of-life decisions, the psychological support provided by their department is currently not sufficient. Professional ad hoc counselling or standard debriefings could substantially improve this perceived lack of support.

End-of-Life Decisions 20 Years after EURONIC: Neonatologists' Self-Reported Practices, Attitudes, and Treatment Choices in Germany, Switzerland, and Austria.

OBJECTIVE: To assess changes in attitudes of neonatologists regarding the care of extremely preterm infants and parental involvement over the last 20 years. STUDY DESIGN: Internet-based survey (2016) involving 170 tertiary neonatal intensive care units in Austria, Switzerland, and Germany using the European Project on Parents' Information and Ethical Decision Making in Neonatal Intensive Care Units questionnaire (German edition) with minor modifications to the original survey from 1996 to 1997. RESULTS: The 2016 survey included 104 respondents (52.5% response rate). In 2016, significantly more neonatologists reported having ever withheld intensive care treatment (99% vs 69%) and withdrawn mechanical ventilation (96% vs 61%) or life-saving drugs (99% vs 79%), compared with neonatologists surveyed in 1996-1997. Fewer considered limiting intensive care as a slippery slope possibly leading to abuse (18% vs 48%). In the situation of a deteriorating clinical condition despite all treatment, significantly more neonatologists would ask parental opinion about continuation of intensive care (49% vs 18%). In 2016, 21% of German neonatologists would resuscitate a hypothetical infant at the limits of viability, even against parental wishes. CONCLUSIONS: Withholding or withdrawing intensive care for extremely preterm infants at the limits of viability with parental involvement has become more acceptable than it was 20 years ago. However, resuscitating extremely preterm infants against parental wishes remains an option for up to one-fifth of the responding neonatologists in this survey.

Physicians' standpoints on end-of-life decisions at the neonatal intensive care units in Jordan.

The purpose of this cross-sectional descriptive study is to explore pediatricians' and neonatologists' attitudes and standpoints on end-of-life (EOL) decision-making in neonates. Seventy-five physicians, employed fulltime to care for newborns in 23 hospitals in Jordan, completed internationally accepted questionnaires. Most physicians (75%) were supportive of using life-sustaining interventions, irrespective of the severity of the newborns' prognosis and the potential burden of the neonates' disabilities on their families. The general attitude of the physicians (59-88%) was against making decisions that limit life support at EOL; even those infants with what are, in fact, untreatable and disabling medical conditions (56-88%). Most physicians (77%) indicated that ethics committees should be involved in EOL decision-making based on requests from parents, physicians, or both. The results of this study indicate strong pro-life attitudes among the physicians whose role is to take care of infants in Jordan. The results also emphasize the need for (1) the creation of clear EOL-focused regulations and guidelines, (2) the establishment of special ethical committees to inform and assist healthcare providers' efforts during EOL care, and (3) raised awareness and competencies regarding EOL and ethical decision-making among physicians taking care of newborns in Jordan's intensive care units.

Neonatologists' Attitudes About Diagnostic Whole-Genome Sequencing in the NICU.

Using focus group methodology, we studied the attitudes of neonatologists regarding diagnostic rapid genome sequencing for newborns who were critically ill in a NICU. One focus group took place within the first year after whole-genome sequencing testing became available, and another focus group took place 3 years later. Focus groups were audiotaped, transcribed, and analyzed by using standard techniques of grounded theory. Different analysts coded them for themes. The analysts then discussed differences and agreed on major themes. Twelve doctors participated in the first focus group, and 9 doctors participated in the second; 62% were attending physicians, and the rest were fellows. There were 14 women and 7 men. We did not collect any other demographic information on participants. Surprisingly, we found few differences between the earlier focus group and the later one. Comments were categorized as falling into 4 domains: (1) uncertainty about the interpretation of results, (2) issues about parental consent and limits on their right to know genomic information, (3) different opinions about whether and how genomic results could be clinically useful, and (4) potential harms of genomic testing.

Neonatologists less frequently discuss long term complications: A simulation-based study of prenatal consults beyond the threshold of viability.

BACKGROUND: Guidelines exist for counseling expectant families of infants at periviable gestational ages (22-25 weeks), but it is much more common for neonatologists to counsel families at gestational ages beyond the threshold of viability when several aspects of these guidelines do not apply. We aimed to develop an understanding of what information is shared with mothers at risk of preterm delivery beyond periviability and to evaluate communication skills of our participants. METHODS: We developed a checklist of elements to include in counseling based on a comprehensive literature review. The checklist was divided into an information sharing section and a connect score. The information sharing list was sub-divided into general information and specific complications. Neonatologists engaged in a simulated prenatal counseling session with a standardized patient. Videotaped encounters were then analyzed for checklist elements. RESULTS: Neonatologists all scored well in communication using our tool and two other validated communication tools - the SEGUE and the analytic global OSCE. There was no difference in scoring based on years of experience or level of training. Information sharing from neonatologists more often discussed general information over specific. Neonatologists also focused more on early outcomes over long-term outcomes. Only 12% of neonatologists quoted the correct survival rate for the case. CONCLUSIONS: Neonatologists generally communicate well but share less information specific to prematurity and the long-term sequelae of prematurity. Our tool may be used to test if other interventions improve information sharing or communication.

Why Do Neonatologists in Scandinavian Countries and the Netherlands Make Life-and-death Decisions So Different?

An examination of the policies regarding the care of extremely premature newborns reveals unexpected differences between Scandinavian countries and the Netherlands. Three topics related to decision-making at the beginning and at the end of life are identified and discussed.

Thresholds for Resuscitation of Extremely Preterm Infants in the UK, Sweden, and Netherlands.

BACKGROUND: It is widely acceptable to involve parents in decision-making about the resuscitation of extremely preterm infants (EPIs) in the gray zone. However, there are different views about where the boundaries of the gray zone should lie. Our aim in this study was to compare the resuscitation thresholds for EPIs between neonatologists in the United Kingdom, Sweden, and the Netherlands. METHODS: We distributed an online survey to consultant neonatologists and neonatal registrars and fellows that included clinical scenarios in which parents requested resuscitation or nonresuscitation. Respondents were asked about the lowest gestational age and/or the worst prognosis at which they would provide resuscitation and the highest gestational age and/or the best prognosis at which they would withhold resuscitation. In additional scenarios, influence of the condition at birth or consideration of available health care resources was assessed. RESULTS: The survey was completed by 162 neonatologists (30% response rate). There was a significant difference between countries; the gray zone for most UK respondents was 23 + 0/7 to 23 + 6/7 or 24 weeks' gestation, compared with 22 + 0/7 to 22 + 6/7 or 23 weeks' gestation in Sweden and 24 + 0/7 to 25 + 6/7 or 26 weeks' gestation in the Netherlands. Resuscitation thresholds were higher if an infant was born in poor condition. There was wide variation in the prognosis that warranted resuscitation or nonresuscitation. Consideration of resource scarcity did not alter responses. CONCLUSIONS: In this survey, we found significant differences in approach to the resuscitation of EPIs, with a spectrum from most proactive (Sweden) to least proactive (Netherlands). Most survey respondents indicated shifts in decision-making that were associated with particular weeks' gestation. Despite the different approaches to decision-making in the 3 countries, there was relatively little difference between countries in neonatologists' prognostic thresholds for resuscitation.

End-of-life decisions and practices for very preterm infants in the Wallonia-Brussels Federation of Belgium.

BACKGROUND: Very preterm birth (24 to < 32 week's gestation) is a major public health issue due to its prevalence, the clinical and ethical questions it raises and the associated costs. It raises two major clinical and ethical dilemma: (i) during the perinatal period, whether or not to actively manage a baby born very prematurely and (ii) during the postnatal period, whether or not to continue a curative treatment plan initiated at birth. The Wallonia-Brussels Federation in Belgium counts 11 neonatal intensive care units. METHODS: An inventory of key practices was compiled on the basis of an online questionnaire that was sent to the 65 neonatologists working in these units. The questionnaire investigated care-related decisions and practices during the antenatal, perinatal and postnatal periods, as well as personal opinions on the possibility of standardising and/or legislating for end-of-life decisions and practices. The participation rate was 89% (n = 58). RESULTS: The results show a high level of homogeneity pointing to overall agreement on the main principles governing curative practice and the gestational age that can be actively managed given the current state of knowledge. There was, however, greater diversity regarding principles governing the transition to end-of-life care, as well as opinions about the need for a common protocol or law to govern such practices. CONCLUSION: Our results reflect the uncertainty inherent in the complex and diverse situations that are encountered in this extreme area of clinical practice, and call for qualitative research and expert debates to further document and make recommendations for best practices regarding several "gray zones" of end-of-life care in neonatology, so that high quality palliative care may be granted to all neonates concerned with end-of-life decisions.

Neonatologists can impede or support parents' participation in decision-making during medical rounds in neonatal intensive care units.

AIM: We explored the dynamics of neonatologist-parent communication and decision-making during medical rounds in a level three neonatal intensive care unit. METHODS: This was a qualitative study, with an ethnographic approach, that was conducted at Turku University Hospital, Finland, from 2013 to 2014. We recruited eight mothers and seven couples, their 11 singletons and four sets of twins and two neonatologists and observed and video recorded 15 medical rounds. The infants were born at 23 + 5 to 40 + 1 weeks, and the parents were aged 24-47. The neonatologists and parents were interviewed separately after the rounds. RESULTS: Four patterns of interaction emerged. The collaborative pattern was most consistent, with the ideal of shared decision-making, as the parents' preferences were genuinely and visibly integrated into the treatment decisions. In the neonatologist-led interactional pattern, the decision-making process was only somewhat inclusive of the parents' observations and preferences. The remaining two patterns, emergency and disconnected, were characterised by a paternalistic decision-making model where the parents' observations and preferences had minimal to no influence on the communication or decision-making. CONCLUSION: The neonatologists played a central role in facilitating parental participation and their interaction during medical rounds were characterised by the level of parent participation in decision-making.