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Objectives: Barriers to communication have been observed with patients and families who prefer a language other than English for medical conversations, referred to as individuals with limited English proficiency (LEP). We used the pediatric Family Satisfaction with ICU 24R (FS-ICU) survey to assess communication satisfaction for English-proficient (EP) and Spanish-speaking LEP caregivers. We added additional questions related to attendance at morning rounds, frequency of provider updates, interpreter use, and general satisfaction with communication., Methods: This was a single-center, prospective, observational cohort study in the pediatric intensive care unit (PICU) and cardiothoracic intensive care unit (CICU) of a tertiary, academic, free-standing children's hospital. Caregivers of children < 18 years old admitted for at least 48 h to the PICU or CICU between June and September 2022 were eligible for enrollment., Measurements and Main Results: 24 LEP and 74 EP caregivers completed the survey questions. The LEP group had lower household income and education levels and higher incidence of public insurance. FS-ICU scores for both LEP and EP caregivers suggested high satisfaction, without significant difference between the groups. However, qualitative analysis revealed dissatisfaction for LEP caregivers related to information, inclusion, and language barriers. EP caregivers had more positive references to information and emotional connection but indicated dissatisfaction around consistency and responsiveness. 18% of LEP caregivers reported regularly attending rounds, versus 67% of the EP group (p value < .001). 39% of LEP versus 52% of EP caregivers reported multiple daily updates, although the difference was not statistically significant. 29% of LEP respondents reported nonfluent MD/NPs using an interpreter never, rarely, or some of the time., Conclusions: There was no difference in satisfaction scores between LEP and EP caregivers. LEP caregivers had lower socioeconomic status based on public insurance and reported income and education level. Qualitative data allowed more nuanced understanding of communication satisfaction, which correlated with LEP caregivers' reported lower attendance at morning rounds, inconsistent interpreter use, and a trend toward less frequent provider updates., (© 2024. W. Montague Cobb-NMA Health Institute.)

Pediatric ethicists hold a privileged position of influence within health care institutions. Such a position confers a corresponding responsibility to address barriers to the health and flourishing of all children. A major barrier to children's health is racism. Pediatric ethicists can, and should, leverage their position to address racism both in institutional policy and the provision of pediatric care. Health care's historical and continued contributions to fostering and sustaining racist values and systems mean that those within all medical fields- regardless of race, ethnicity, gender, age, or profession-should consider ways they can work to offset and ultimately dismantle those values and systems. Institutional policy is a critical mechanism propagating racism in hospitals and an area where ethicists have a unique perspective to bring antiracism into ethical analysis. Many institutional and organizational policies have unintended consequences, negatively impacting children and families who have been historically marginalized and oppressed. In this paper, we report and discuss existing policies, along with how they are implemented (procedures) and how they are conducted (practices), identified through a workshop during a pediatric subgroup meeting at an annual bioethics conference. We highlight the need to focus on these structural factors and reference scholarship that can be used to correct institutional policies that uphold white supremacy. We conclude with actionable, concrete recommendations for change., (Copyright © 2023 by the American Academy of Pediatrics.)

Background: Up to 80% of pediatric intensive care unit (PICU) patients experience new morbidities upon discharge. Patients and families rely on clear communication to prepare for post-PICU morbidities., Methods: Surveys were given at PICU discharge to parents and attending physicians of patients who developed multi-organ dysfunction within 24 hours of PICU admission and whose parents completed an initial survey 5 to 10 days after PICU admission. Participants were asked about prognostic conversations regarding PICU mortality; patient post-PICU physical, cognitive, and psychological morbidities; and parent post-PICU psychological morbidities. Parents also indicated whether they wanted more prognostic information., Results: Forty-nine parents and 20 PICU attending physicians completed surveys for 49 patients. Thirty parent (61%) and 29 physician (59%) surveys reported participating in any prognostic conversations. Concordance between parents and physicians about prognostic conversations was slight (κ = 0.19). Parent (n = 22; 45%) and physician (n = 23; 47%) surveys most commonly reported prognostic conversations about post-PICU physical morbidities. Parents less commonly reported conversations about post-PICU cognitive morbidities (n = 10; 20%). According to parents, bedside nurses and physicians provided most prognostic information; social workers (54%) most commonly discussed parent psychological morbidities. Twenty-six parents (53%) requested more prognostic information., Conclusions: Most parents and physicians reported having prognostic conversations, primarily about post-PICU physical morbidities. More than half of parents wanted more information about potential post-PICU morbidities. More research is needed to understand how and when medical professionals should have prognostic conversations with parents., (©2023 American Association of Critical-Care Nurses.)

Objective: Social health is an important component of recovery following critical illness as modeled in the pediatric Post-Intensive Care Syndrome framework. We conducted a scoping review of studies measuring social outcomes (measurable components of social health) following pediatric critical illness and propose a conceptual framework of the social outcomes measured in these studies., Data Sources: PubMed, EMBASE, PsycINFO, CINAHL, and the Cochrane Registry., Study Selection: We identified studies evaluating social outcomes in pediatric intensive care unit (PICU) survivors or their families from 1970-2017 as part of a broader scoping review of outcomes after pediatric critical illness., Data Extraction: We identified articles by dual review and dual-extracted study characteristics, instruments, and instrument validation and administration information. For instruments used in studies evaluating a social outcome, we collected instrument content and described it using qualitative methods adapted to a scoping review., Data Synthesis: Of 407 articles identified in the scoping review, 223 (55%) evaluated a social outcome. The majority were conducted in North America and the United Kingdom, with wide variation in methodology and population. Among these studies, 38 unique instruments were used to evaluate a social outcome. Specific social outcomes measured included individual (independence, attachment, empathy, social behaviors, social cognition, and social interest), environmental (community perceptions and environment), and network (activities and relationships) characteristics, together with school and family outcomes. While many instruments assessed more than one social outcome, no instrument evaluated all areas of social outcome., Conclusions: The full range of social outcomes reported following pediatric critical illness were not captured by any single instrument. The lack of a comprehensive instrument focused on social outcomes may contribute to under-appreciation of the importance of social outcomes and their under-representation in PICU outcomes research. A more comprehensive evaluation of social outcomes will improve understanding of overall recovery following pediatric critical illness.

Objectives: Parents value clear communication with PICU clinicians about possible patient and family outcomes (prognostic conversations). We describe PICU parent and attending physician reports and agreement regarding the occurrence of prognostic conversations. We queried parents and physicians about prognostic conversation content, which healthcare providers had prognostic conversations, and whether parents wanted more prognostic information., Design: Prospective cross-sectional survey study., Setting: University-based 40-bed PICU., Participants: Parents and attending physicians of PICU patients with multiple organ dysfunction within 24 hours of PICU admission., Interventions: Surveys administered to parents and attending PICU physicians 5-10 days after PICU admission., Measurements and Main Results: Surveys asked parents and physicians to report the occurrence of prognostic conversations related to PICU length of stay, risk of PICU mortality, and anticipated post-PICU physical, neurologic, and psychologic morbidities for patients and post-PICU psychologic morbidities for parents. Of 101 participants, 87 parents and 83 physicians reported having prognostic conversations. Overall concordance between parents and physicians was fair (Kappa = 0.22). Parents and physicians most commonly reported prognostic conversations about PICU length of stay (67.3% and 63.3%, respectively) and patient post-PICU physical morbidity (n = 48; 48.5% and n = 45; 44.5% respectively). Conversations reported less often by parents and physicians were about patient post-PICU psychologic morbidity (n = 13; 12.9% and n = 20; 19.8%, respectively). Per parent report, bedside nurses and physicians provided most prognostic information. Chaplains (n = 14; 50%) and social workers (n = 17; 60%) were more involved in conversations regarding parent psychologic morbidities. Most commonly, parents requested more information about length of stay and their child's physical morbidities. Parents less frequently wanted information about their own psychologic morbidities., Conclusions: Most parents and physicians report having prognostic conversations, primarily about length of stay and post-ICU physical morbidities. Concordance between parents and physicians is suboptimal. Future studies should evaluate prognostic conversations at other timepoints, how information is delivered, and how these conversations impact the PICU experience., Competing Interests: Dr. Rissman received support for article research from Northwestern McGaw’s Center for Bioethics Department. Drs. Derrington’s and Michelson’s institutions received funding from Northwestern University Feinberg School of Medicine, Center for Bioethics and Medical Humanities. Dr. Derrington received funding from Loma Linda University Medical Center and the American Society for Bioethics and Humanities. Dr. Michelson’s institution received funding from the National Palliative Care Research Center, the National Institute of Diabetes and Digestive and Kidney Diseases, and Northwestern University Alliance for Research in Chicagoland Communities. Dr. Rychlik has disclosed that she does not have any potential conflicts of interest., (Copyright © 2021 by the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies.)

Objectives: When healthcare systems are overwhelmed, accurate assessments of patients' predicted mortality risks are needed to ensure effective allocation of scarce resources. Organ dysfunction scores can serve this essential role, but their evaluation in this context has been limited so far. In this study, we sought to assess the performance of three organ dysfunction scores in both critically ill adults and children at clinically relevant mortality thresholds and timeframes for resource allocation and compare it with two published prioritization schemas., Design: Retrospective observational cohort study., Setting: Three large academic medical centers in the United States., Patients: Critically ill adults and children., Interventions: None., Measurements and Main Results: We calculated the daily Sequential Organ Failure Assessment score in adults and the Pediatric Logistic Organ Dysfunction 2 score and the Pediatric Sequential Organ Failure Assessment score in children. There were 49,290 (11.6% mortality) and 19,983 children (2.5% mortality) included in the analysis. Both the Sequential Organ Failure Assessment and Pediatric Sequential Organ Failure Assessment scores had adequate discrimination across relevant timeframes and adequate distribution across relevant mortality thresholds. Additionally, we found that the only published state prioritization schema that includes pediatric and adult patients had poor alignment of mortality risks, giving adults a systematic advantage over children., Conclusions: In the largest analysis of organ dysfunction scores in a general population of critically ill adults and children to date, we found that both the Sequential Organ Failure Assessment and Pediatric Sequential Organ Failure Assessment scores had adequate performance across relevant mortality thresholds and timeframes for resource allocation. Published prioritization schemas that include both pediatric and adult patients may put children at a disadvantage. Furthermore, the distribution of patient and mortality risk in the published schemas may not adequately stratify patients for some high-stakes allocation decisions. This information may be useful to bioethicists, healthcare leaders, and policy makers who are developing resource allocation policies for critically ill patients., Competing Interests: Drs. Sanchez-Pinto, Parker, and Mayampurath received support for article research from the National Institutes of Health (NIH). Dr. Mayampurath received funding from Litmus Health. Dr. Derrington received funding from the American Society for Bioethics and Humanities. Dr. Michelson’s institution received funding from the National Palliative Care Research Center and the National Alliance for Grieving Children. Dr. Sanchez-Pinto has disclosed that he does not have any potential conflicts of interest., (Copyright © 2020 by the Society of Critical Care Medicine and Wolters Kluwer Health, Inc. All Rights Reserved.)

Patients and families with limited English proficiency (LEP) face barriers to health care service access, experience lower quality care, and suffer worse health outcomes. LEP is an independent driver of health disparities and exacerbates other social determinants of health. Disparities due to language are particularly unjust because LEP is morally irrelevant and a source of unfair, unnecessary disadvantage. Clinicians and health care organizations have duties to intervene, which this article describes., (© 2021 American Medical Association. All Rights Reserved.)

Objectives: Communication breakdowns in PICUs contribute to inadequate parent support and poor post-PICU parent outcomes. No interventions supporting communication have demonstrated improvements in parental satisfaction or psychologic morbidity. We compared parent-reported outcomes from parents receiving a navigator-based parent support intervention (PICU Supports) with those from parents receiving an informational brochure., Design: Patient-level, randomized trial., Setting: Two university-based, tertiary-care children's hospital PICUs., Participants: Parents of patients requiring more than 24 hours in the PICU., Interventions: PICU Supports included adding a trained navigator to the patient's healthcare team. Trained navigators met with parents and team members to assess and address communication, decision-making, emotional, informational, and discharge or end-of-life care needs; offered weekly family meetings; and did a post-PICU discharge parent check-in. The comparator arm received an informational brochure providing information about PICU procedures, terms, and healthcare providers., Measurements and Main Results: The primary outcome was percentage of "excellent" responses to the Pediatric Family Satisfaction in the ICU 24 decision-making domain obtained 3-5 weeks following PICU discharge. Secondary outcomes included parental psychologic and physical morbidity and perceptions of team communication. We enrolled 382 families: 190 received PICU Supports, and 192 received the brochure. Fifty-seven percent (216/382) completed the 3-5 weeks post-PICU discharge survey. The mean percentage of excellent responses to the Pediatric Family Satisfaction in the ICU 24 decision-making items was 60.4% for PICU Supports versus 56.1% for the brochure (estimate, 3.57; SE, 4.53; 95% CI, -5.77 to 12.90; p = 0.44). Differences in secondary outcomes were not statistically significant. Most parents (91.1%; 113/124) described PICU Supports as "extremely" or "somewhat" helpful., Conclusions: Parents who received PICU Supports rated the intervention positively. Differences in decision-making satisfaction scores between those receiving PICU Supports and a brochure were not statistically significant. Interventions like PICU Supports should be evaluated in larger studies employing enhanced recruitment and retention of subjects.

Medical decision-making in children is not a static process. In pediatrics, parents and health professionals actively participate in clinical decision-making. They always consider what is in the child's best interest and sometimes weigh that against other considerations. As children get older, the level of participation in this process may change according to their own cognitive development and maturity level. In this article, we present a case of an adolescent with a life-limiting condition at the end of life. He wants to participate in his health management and speak for himself. He does not always prefer interventions that his parents think are best. Health care practitioners must include mature minors in the decision-making process and be willing to listen to their voices., Competing Interests: POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose., (Copyright © 2020 by the American Academy of Pediatrics.)

Most lawyers and bioethicists recommend that patients enact a durable power of attorney for health care designating somebody as their proxy decision maker should they become unable to make decisions. Most people choose family members as their agent. But what if a patient wants his or her doctor to be his or her proxy decision maker? Can the doctor be both physician and surrogate decision maker? Or should those roles necessarily be kept separate? We present a case in which those issues arose, and sought comments from Sabrina Derrington, a pediatric palliative care physician; Arthur Derse, an emergency department physician and lawyer; and Phil Black, a pulmonologist.

Background and Aim: We report the process of creating a new palliative care service at a large, urban children's hospital. Our aim was to provide a detailed guide to developing an inpatient consultation service, along with reporting on the challenges, lessons, and evaluation., Methods: We examined the hiring process of personnel and marketing strategies, a clinical database facilitated ongoing quality review and identified trends, and a survey project assessed provider satisfaction and how referring physicians used the palliative care service., Results and Conclusion: The pilot phase of service delivery laid the groundwork for a more effective service by creating documentation templates and identifying relevant data to track growth and outcomes. It also allowed time to establish a clear delineation of team members and distinction of roles. The survey of referring physicians proved a useful evaluation starting point, but conclusions could not be generalized because of the low response rate. It may be necessary to reconsider the survey technique and to expand the sample to include patients and families. Future research is needed to measure the financial benefits of a well-staffed inpatient pediatric palliative care service.

Balance is a major issue facing the geriatric population. Nine participants from a local community center for seniors completed a five-week study to assess improvement in balance. Measures of balance, performance times, and scores on the Berg Balance Scale (BBS) and the Wii Fit Age (WFA) were recorded before and after the entire intervention. An analysis of variance (ANOVA) with repeated measures was used to assess change in BBS and WFA scores. An analysis of covariance with repeated measures was used to asses the impact of possible contributing factors of age, gender, BMI and total balance board training time over the five-week period. The analysis indicated that use of the Indo Balance Board three times a week for ten minutes can significantly improve balance and potentially decrease the risk of falls, as measured by the BBS. Age was the only factor that significantly influenced balance (p = .006). These improvements are postulated to be due to an increase in subjects' core and lower extremity muscle strength and improved proprioception; a result of balance board usage.