BACKGROUND:Children whose families use a language other than English are known to experience poorer medical care, including during serious illnesses. Information sharing is essential to achieve optimal communication outcomes, but little is known about differences across caregiver language. OBJECTIVE:We explored differences in quantity and complexity of bidirectional information sharing in English and interpreted care conferences for seriously ill children. DESIGN/METHODS:Care conferences for pediatric patients with serious illness from linguistically diverse families at a single institution were audio-recorded, transcribed, and analyzed using content analysis. Clinician and caregiver information sharing statements were characterized as biomedical, logistical, or psychosocial; caregiver categories also included patient wellness and values/goals. Clinician communication practices known to impact information sharing were also tabulated. Mann-Whitney U tests compared median information shared by conference language. RESULTS:We analyzed 29 inpatient care conferences from 2018 to 2021, including 11 (38%) professionally interpreted conferences. On average, clinicians made 156 statements per conference while caregivers made 71 (P < .001). Clinicians made significantly fewer biomedical statements in interpreted conferences than English ones (117 vs 176, P = .01). Caregivers made a similar number of statements per conference, regardless of language (78 vs 66, P = .95). Overall, clinicians rarely used practices supporting information sharing, only asking about information preferences in 1 conference and prior understanding in 3 conferences and checking for understanding open-endedly in 0 conferences. Jargon was rampant, particularly in English conferences (P = .02). CONCLUSIONS:Strategies to reduce disparities in information sharing may support equitable outcomes for patients and families from all language backgrounds.

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.

BACKGROUND AND OBJECTIVES: Children with new tracheostomy and invasive mechanical ventilation (IMV) require transitional care involving caregiver education and nursing support. To better understand hospital resource use during this transition, our study aimed to: (1) define and characterize low-resource days (LRDs) for this population and (2) identify factors associated with LRD occurrence. METHODS: This retrospective cohort analysis included children ≤21 years with new tracheostomy and IMV dependence admitted to an ICU from 2017 to 2022 using the Pediatric Health Information System database. A LRD was defined as a post tracheostomy day that accrued nonroom charges <10% of each patient’s accrued nonroom charges on postoperative day 1. Factors associated with LRDs were analyzed using negative binomial regression. RESULTS: Among 4048 children, median post tracheostomy stay was 69 days (interquartile range 34–127.5). LRDs were common: 38.6% and 16.4% experienced ≥1 and ≥7 LRDs, respectively. Younger age at tracheostomy (0–7 days rate ratio [RR] 2.42 [1.67–3.51]; 8–28 days RR 1.8 (1.2–2.69) versus 29–365 days; Asian race (RR 1.5 [1.04–2.16]); early tracheostomy (0–7 days RR 1.56 [1.2–2.04]), and longer post tracheostomy hospitalizations (31–60 days RR 1.85 [1.44–2.36]; 61–90 days RR 2.14 [1.58–2.91]; >90 days RR 2.21 [1.71–2.86]) were associated with more LRDs. CONCLUSIONS: Approximately 1 in 6 children experienced ≥7 LRDs. Younger age, early tracheostomy, Asian race, and longer hospital stays were associated with increased risk of LRDs. Understanding the postacute phase, including bed utilization, serves as an archetype to explore care models for children with IMV dependence.

Olszewski, Aleksandra; Shah, Seema; Barrera, Leonardo; Castillo, Leopoldo; Kolaitis, Irini; Goodman, Denise; Basu, Rajit; Paquette, Erin Author Information

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.

Click to increase image sizeClick to decrease image sizeThis article is referred to by:Response to Open Peer Commentaries on "Ethical Issues in Using Behavior Contracts to Manage the 'Difficult' Patient Family"This article refers to:Ethical Issues in Using Behavior Contracts to Manage the "Difficult" Patient and Family DISCLOSURE STATEMENTNo potential conflict of interest was reported by the author(s).Additional informationFundingDr. Paquette reports funding support under the NIH NICHD L40 HD089260, K12HD047349, and 1K23HD09828901A1, which supported time during which the manuscript was completed.

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.

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.

Racism 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.

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.

Cases involving death by neurologic criteria are complex and challenging, particularly when families object to the determination or declaration of death. As with other controversies surrounding death by neurologic criteria, family objections have increased in recent years, in both clinical and legal settings. Importantly, there are multiple stages in the process of determination and declaration of death by neurologic criteria where families might refuse testing or request accommodation. Understanding what a family is truly requesting or refusing and why is a key step all clinical teams must take in order to partner with families and address objections. Families may refuse the evaluation for determination of death or the declaration of death itself, or request accommodation, for a variety of reasons, ranging from seeking more time to religious objections. In this chapter, we discuss the more commonly described reasons for family objections to evaluation for determination of death or declaration of death by neurologic criteria, highlight contemporary legal cases, and describe strategies for management of objections.

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.

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.

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.

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 encepha-Lopathy (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.

This article is referred to by:Looking Forward: A Response to Commentaries on "Race, Power and COVID-19: A Call for Advocacy within Bioethics"

Earp, Lewis, and Hart (2021) write about the racism entrenched in policies criminalizing drug use and possession and describe the disparate impact that these policies have on certain racialized com...

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.

The “Executive Order on Protecting Vulnerable Newborn and Infant Children” threatens decades of progress in shared decision-making for imperiled newborns.