Frequency of Perceived Conflict between Families and Clinicians at Time of Clinical Ethics Consultation in Hospitalized Children.

BACKGROUND: Little is known about the frequency of conflict between clinicians and families at the time of pediatric clinical ethics consultation (CEC) and what factors are associated with the presence of conflict. METHODS: We conducted a retrospective cohort study at a single, tertiary urban US pediatric hospital that included all hospitalized patients between January 2008 and December 2019 who received CEC. Utilizing the hospital's CEC database that requires documentation of the presence of conflict by the consultant at the time of CEC, we determined the frequency and types of perceived conflict between families and clinicians. We also assessed the bivariable association between conflict and patient age, patient- or family-reported race/ethnicity, language for care, insurance status, clinical setting, and consultant involvement. RESULTS: Perceived conflict between clinicians and families was present in 44% (91/209) of CEC. We observed a higher occurrence of clinician-family conflict within certain consult topics than others, in particular, informed consent/parental permission (69%), cultural considerations (67%), benefit/harm assessment (58%), and limitation of life-sustaining treatment (58%). We found no other significant associations between the presence of perceived conflict and patient sociodemographic factors or CEC factors. CONCLUSIONS: Conflict between healthcare teams and families appears common in CEC, particularly with certain consult topics. Further study is needed to better understand conflict types, causes of conflicts, management and mediation strategies, and outcomes.

Family Responses to Different Types of Clinician Empathy Expression in Pediatric Care Conferences.

Background: Clinician empathy positively impacts patient outcomes. Few studies have assessed the effects of different types of empathic expression. Objective: To describe how families respond when clinicians express empathy in different ways. Design: Prospective, mixed-methods cohort. Setting/Subjects: English and interpreted pediatric inpatient care conferences at a U.S. quaternary hospital between January 1, 2018 and January 1, 2021. Measurements: Directed content analysis of clinician empathic statements and family responses. Results: Of 29 patient-family dyads, 11 (39%) used language interpretation. In response to 80 clinician empathic statements, families expressed agreement or shared more 84% (67/80) of the time. Families shared more about their perspective in response to explore statements 71.4% (10/14) of the time, in response to validate statements 61% (17/28) of the time, and in response to respect/support statements 39% (11/28) of the time. Conclusion: Certain types of empathic statements may be more effective at prompting families to share more about their perspective, a key element of shared decision-making.

Disparities in Clinical Ethics Consultation among Hospitalized Children: A Case-Control Study.

OBJECTIVE: To identify sociodemographic factors associated with pediatric clinical ethics consultation (CEC). STUDY DESIGN: Matched, case-control study at a single center, tertiary pediatric hospital in the Pacific Northwest. Cases (patients hospitalized January 2008-December 2019 with CEC) were compared with controls (those without CEC). We determined the association of the outcome (CEC receipt) with exposures (race/ethnicity, insurance status, and language for care) using univariate and multivariable conditional logistic regression. RESULTS: Of 209 cases and 836 matched controls, most cases identified as white (42%), had public/no insurance (66%), and were English-speaking (81%); most controls identified as white (53%), had private insurance (54%), and were English-speaking (90%). In univariate analysis, patients identifying as Black (OR: 2.79, 95% CI: 1.57, 4.95; P < .001), Hispanic (OR: 1.92, 95% CI: 1.24, 2.97; P = .003), with public/no insurance (OR: 2.21, 95% CI: 1.58, 3.10; P < .001), and using Spanish language for care (OR: 2.52, 95% CI: 1.47, 4.32; P < .001) had significantly increased odds of CEC, compared with patients identifying as white, using private insurance, and using English for care, respectively. In multivariable regression, Black race (adjusted OR: 2.12, 95% CI: 1.16, 3.87; P = .014) and public/no insurance (adjusted OR: 1.81, 95% CI: 1.22, 2.68; P = .003) remained significantly associated with receipt of CEC. CONCLUSIONS: We found disparities in receipt of CEC by race and insurance status. Further study is needed to determine the causes of these disparities.

Addressing Racism in Ethics Consultation: An Expansion of the Four-Box Method.

AbstractRacism is a pervasive issue in patient care and a key social determinant of health. Clinical ethicists, like others involved in patient care, have a duty to recognize and respond to racism on both individual and systems-wide levels to improve patient care. Doing so can be challenging and, like other skills in ethics consultation, may benefit from specialized training, standardized tools and approaches, and practice. Learning from existing frameworks and tools, as well as building new ones, can help guide clinical ethicists to systematically approach racism as it affects clinical cases. Here, we propose an expansion of the commonly used four-box method to clinical ethics consultation, where racism is considered as a potential factor in each of the four boxes. We apply this method to two clinical cases to highlight ethically salient information that might be missed using the standard formulation of the four boxes but captured with the expanded version. We argue that this expansion of an existing clinical ethics consultation tool is ethically justified insofar as it (a) creates a more just approach, (b) supports individual consultants and services, and (c) facilitates communication in contexts where racism impinges on effecting good patient care.

Empathy Expression in Interpreted and Noninterpreted Care Conferences of Seriously Ill Children.

BACKGROUND AND OBJECTIVES: Clinician empathy is associated with improved communication and clinical outcomes. We hypothesized that, when clinicians express empathy, families are more likely to deepen discussions, and that clinicians express less empathy in care conferences with language interpretation. METHODS: Prospective, mixed methods cohort study of English and interpreted audio-recorded transcripts of care conferences for pediatric patients with serious illness hospitalized at a single urban, quaternary medical institution between January 2018 and January 2021. Directed content analysis identified empathic opportunities, clinician empathetic statements or missed opportunities, and family responses. Clinician empathic statements were "buried" if immediately followed by more clinician medical talk. Descriptive analyses summarized demographics and codes. χ2 analyses summarized differences among language interpretation and family responses. RESULTS: Twenty-nine patient-family dyads participated. Twenty-two (81%) family members were female. Eleven (39%) used language interpretation (8 Spanish, 2 Vietnamese, 1 Somali). Families created 210 empathic opportunities. Clinicians responded with unburied empathy 80 times (38%, no differences for English versus interpreted care conferences, P = .88). When clinicians buried empathy or missed empathic opportunities, families responded with alliance (agreement, gratitude, or emotional deepening) 14% and 15% of the time, respectively. When clinicians responded with unburied empathy, families responded with alliance 83% of the time (P < .01). CONCLUSIONS: Our study suggests that clinician empathic expression does not differ when language interpretation is used in pediatric care conferences. Clinicians often miss opportunities to express empathy, or they bury it by medical talk. Although unburied empathy created opportunities for relationship-building and family-sharing, buried empathy negatively impacted these domains similarly to no empathic expression.

Risk Factors for Positive Post-Traumatic Stress Disorder Screening and Associated Outcomes in Children Surviving Acute Respiratory Failure: A Secondary Analysis of the Randomized Evaluation of Sedation Titration for Respiratory Failure Clinical Trial.

OBJECTIVES: To identify risk factors and outcomes associated with a positive post-traumatic stress disorder (PTSD) screen following pediatric acute respiratory failure treated with invasive mechanical ventilation. DESIGN: Nonprespecified secondary analysis of a randomized clinical trial. SETTING: Thirty-one U.S. PICUs. PATIENTS: Children in the Randomized Evaluation of Sedation Titration for Respiratory Failure (RESTORE) trial (NCT00814099, ClinicalTrials.gov ) over 8 years old who completed PTSD screening 6 months after discharge. INTERVENTIONS: RESTORE sites were randomized to a targeted, nurse-directed sedation strategy versus usual care. MEASUREMENTS AND MAIN RESULTS: PTSD screening was completed by 102 subjects using the Child Post-Traumatic Stress Disorder Symptom Scale; a score of greater than or equal to 11 was considered screening positive for PTSD. Cognitive status was categorized using Pediatric Cerebral Performance Category; health-related quality of life (HRQL) was evaluated using child-reported Pediatric Quality of Life Inventory, Version 4.0. Thirty-one children (30%) screened positive for PTSD. Children with a positive screen endorsed symptoms in all categories: reexperiencing, avoidance, and hyperarousal. Most endorsed that symptoms interfered with schoolwork ( n = 18, 58%) and happiness ( n = 17, 55%). Screening positive was not associated with RESTORE treatment group. In a multivariable logistic model adjusting for age, sex, and treatment group, screening positive was independently associated with lower median income in the family's residential zip code (compared with income ≥ $80,000; income < $40,000 odds ratio [OR], 32.8; 95% CI, 2.3-458.1 and $40,000-$79,999 OR, 15.6; 95% CI, 1.3-182.8), renal dysfunction (OR 5.3, 95% CI 1.7-16.7), and clinically significant pain in the PICU (OR, 8.3; 95% CI, 1.9-35.7). Children with a positive screen experienced decline in cognitive function and impaired HRQL more frequently than children with a negative screen. CONCLUSIONS: Screening positive for PTSD is common among children following acute respiratory failure and is associated with lower HRQL and decline in cognitive function. Routine PTSD screening may be warranted to optimize recovery.

Transformative Justice in Ethics Consultation.

Clinical ethics consultants bear witness to the direct harms of intersecting axes of oppression-such as racism and classism-as they impinge on elucidating and resolving ethical dilemmas in health care. Health Care Ethics Consultation (HCEC) professional guidance supports recognizing and analyzing power dynamics and social-structural obstacles to good care. However, the most relied upon bioethical principles in clinical ethics have been criticized for insufficiency in this regard. While individual ethics consultants have found ways to expand their approaches, they do so in an ad hoc way without frameworks to guide consistency. Motivated by the practical expertise of clinical ethicists, this essay offers a new framework to support openness to analyzing power imbalances and respecting marginalized voices and values. This framework is grounded in transformative justice, where the aim is to take responsibility for oppression by centering and responding to moral perspectives and value systems that are all too often silenced.

Association Between Language Use and ICU Transfer and Serious Adverse Events in Hospitalized Pediatric Patients Who Experience Rapid Response Activation.

Background: Hospitalized patients and caregivers who use a language other than English have worse health outcomes, including longer length of stay, more frequent readmissions, and increased rates of in-hospital adverse events. Children who experience clinical deterioration (as measured by a Rapid Response Team event) during a hospitalization are at increased risk for adverse events and mortality. Methods: We describe the results of a retrospective cohort study using hospital records at a free-standing, quaternary children's hospital, to examine the association of language of care with outcomes (transfer to intensive care, adverse event, mortality prior to discharge) following Rapid Response Team event, and whether increased interpreter use among patients who use a language other than English is associated with improved outcomes following Rapid Response Team event. Results: In adjusted models, Rapid Response Team events for patients who use a language other than English were associated with higher transfer rates to intensive care (RR 1.1, 95% CI 1.01, 1.21), but not with adverse event or mortality. Among patients who use a language other than English, use of 1-2 interpreted sessions per day was associated with lower transfer rates to intensive care compared to use of less than one interpreted session per day (RR 0.79, 95% 0.66, 0.95). Conclusion: Rapid Response Team events for hospitalized children of families who use a language other than English are more often followed by transfer to intensive care, compared with Rapid Response Team events for children of families who use English. Improved communication with increased interpreter use for hospitalized children who use a language other than English may lead to improvements in Rapid Response Team outcomes.

Narrative, Compassion, and Counter Stories.

Critical race theory (CRT) tools of evaluating stock stories and counter stories can help clinicians and researchers illuminate experiences of those at the margins in order to gain insights into the normalized injustices that are hidden from view in a dominant narrative. To do this work requires vigilance and intentionality. Here, CRT is applied to a patient case involving overevaluation for nonaccidental trauma (NAT) to describe the impact on patient care and experience of competing perspectives. CRT is also applied to assess the literature on the harms of inequities in NAT evaluations.

Parental Enrollment Decision-Making for a Neonatal Clinical Trial.

OBJECTIVE: To describe the parental experience of recruitment and assess differences between parents who participated and those who declined to enroll in a neonatal clinical trial. STUDY DESIGN: This was a survey conducted at 12 US neonatal intensive care units of parents of infants who enrolled in the High-dose Erythropoietin for Asphyxia and encephaLopathy (HEAL) trial or who were eligible but declined enrollment. Questions assessed 6 factors of the parental experience of recruitment: (1) interactions with research staff; (2) the consent experience; (3) perceptions of the study; (4) decisional conflict; (5) reasons for/against participation; and (6) timing of making the enrollment decision. RESULTS: In total, 269 of 387 eligible parents, including 183 of 242 (75.6%) of those who enrolled their children in HEAL and 86 of 145 (59.3%) parents who declined to enroll their children in HEAL, were included in analysis. Parents who declined to enroll more preferred to be approached by clinical team members rather than by research team members (72.9% vs 49.2%, P = .005). Enrolled parents more frequently reported positive initial impressions (54.9% vs 10.5%, P < .001). Many parents in both groups made their decision early in the recruitment process. Considerations of reasons for/against participation differed by enrollment status. CONCLUSIONS: Understanding how parents experience recruitment, and how this differs by enrollment status, may help researchers improve recruitment processes for families and increase enrollment. The parental experience of recruitment varied by enrollment status. These findings can guide future work aiming to inform optimal recruitment strategies for neonatal clinical trials.

Grounded in Justice: An Equity Framework for Chief Residents.

The 2019-2020 academic year was unprecedented, with navigating the COVID-19 pandemic and meaningfully engaging with the causes and consequences of long-standing racism and social injustice in the United States. In this article, the authors, all former chief residents, reflect on how they carried out their role during this last year using an approach that was grounded in equity and justice. They describe a framework based on their experiences, including setting the tone and culture of the residency program; providing medical education, teaching, and feedback; advocating for resident well-being and inclusion; participating in quality improvement and hospital policymaking; and partnering for institutional change. They end with a call to action to reconceptualize the role of the chief resident to include the genuine work of diversity, equity, and inclusion to ensure a more equitable future.

Parental Factors Associated With the Decision to Participate in a Neonatal Clinical Trial.

Importance: It remains poorly understood how parents decide whether to enroll a child in a neonatal clinical trial. This is particularly true for parents from racial or ethnic minority populations. Understanding factors associated with enrollment decisions may improve recruitment processes for families, increase enrollment rates, and decrease disparities in research participation. Objective: To assess differences in parental factors between parents who enrolled their infant and those who declined enrollment for a neonatal randomized clinical trial. Design, Setting, and Participants: This survey study conducted from July 2017 to October 2019 in 12 US level 3 and 4 neonatal intensive care units included parents of infants who enrolled in the High-dose Erythropoietin for Asphyxia and Encephalopathy (HEAL) trial or who were eligible but declined enrollment. Data were analyzed October 2019 through July 2020. Exposure: Parental choice of enrollment in neonatal clinical trial. Main Outcomes and Measures: Percentages and odds ratios (ORs) of parent participation as categorized by demographic characteristics, self-assessment of child's medical condition, study comprehension, and trust in medical researchers. Survey questions were based on the hypothesis that parents who enrolled their infant in HEAL differ from those who declined enrollment across 4 categories: (1) infant characteristics and parental demographic characteristics, (2) perception of infant's illness, (3) study comprehension, and (4) trust in clinicians and researchers. Results: Of a total 387 eligible parents, 269 (69.5%) completed the survey and were included in analysis. This included 183 of 242 (75.6%) of HEAL-enrolled and 86 of 145 (59.3%) of HEAL-declined parents. Parents who enrolled their infant had lower rates of Medicaid participation (74 [41.1%] vs 47 [55.3%]; P = .04) and higher rates of annual income greater than $55 000 (94 [52.8%] vs 30 [37.5%]; P = .03) compared with those who declined. Black parents had lower enrollment rates compared with White parents (OR, 0.35; 95% CI, 0.17-0.73). Parents who reported their infant's medical condition as more serious had higher enrollment rates (OR, 5.7; 95% CI, 2.0-16.3). Parents who enrolled their infant reported higher trust in medical researchers compared with parents who declined (mean [SD] difference, 5.3 [0.3-10.3]). There was no association between study comprehension and enrollment. Conclusions and Relevance: In this study, the following factors were associated with neonatal clinical trial enrollment: demographic characteristics (ie, race/ethnicity, Medicaid status, and reported income), perception of illness, and trust in medical researchers. Future work to confirm these findings and explore the reasons behind them may lead to strategies for better engaging underrepresented groups in neonatal clinical research to reduce enrollment disparities.

Teaching Pediatric Peritoneal Dialysis Globally through Virtual Simulation.

BACKGROUND AND OBJECTIVES: Despite the increasing prevalence of childhood kidney disease worldwide, there is a shortage of clinicians trained to provide peritoneal dialysis (PD). E-learning technologies may provide a solution to improve knowledge in PD. We describe the development of a virtual PD simulator and report the first 22 months of online usage. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: The PD simulator was developed and released on OPENPediatrics in January of 2016. A prospective study of international, multidisciplinary healthcare providers was conducted from January of 2016 through October of 2017. User action data were analyzed with descriptive statistics and linear regression. Paired t tests compared user pre- and post-test scores. User satisfaction was assessed by survey. RESULTS: The simulator was accessed by 1066 users in 70 countries. Users spent a median of 35 minutes (interquartile range [IQR] 14-84) in the simulator. Users who completed the structured learning curriculum (n=300) spent a median of 85 minutes (IQR 46-95), and those who completed the entire simulator (n=63) spent a median of 122 minutes (IQR 69-195). Users who completed the simulator were more likely to scroll through text and access the simulator in multiple sessions. The 300 users that completed testing showed statistically significant increases in the post- versus pretest scores, with a mean increase of 36.4 of 100 points, SD 19.9 (95% confidence interval, 34.1 to 38.6, P<0.001). Eighty-seven percent (20 of 23) of survey respondents felt the simulator was relevant to their clinical practice, and 78% (18 of 23) would recommend it to others. CONCLUSIONS: This is the first reported virtual PD simulator. Increased test scores were observed between pre- and post-tests by clinicians who completed testing, across disciplines, training levels, and resource settings.