Antiracism: An Ethical Imperative.

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.

Debriefing After Critical Events Is Feasible and Associated With Increased Compassion Satisfaction in the Pediatric Intensive Care Unit.

BACKGROUND: Repeated exposure to death and dying increases health care professionals' risk for burnout and secondary traumatic stress. Pediatric critical care providers are at particularly high risk because the death and dying of children are associated with even greater psychological impact. LOCAL PROBLEM: A charge nurse in the pediatric intensive care unit identified a need for additional staff support after critical patient events. METHODS: The aim of this quality improvement project was to design and implement a debriefing process, the Rapid Review of Resuscitation, in a 40-bed, high-acuity pediatric intensive care unit at an urban children's hospital in the midwestern United States. A preintervention-postintervention survey used the Professional Quality of Life Scale, version 5, to evaluate staff members' compassion satisfaction, burnout, and secondary traumatic stress before and 1 year after implementation. The debriefing process was designed and implemented on the basis of interview data and literature review. RESULTS: Preimplementation (104 of 222 staff members [47%]) and postimplementation (72 of 184 staff members [39%]) survey responses were compared. Compassion satisfaction scores (mean [SD] T scores: preimplementation, 54.10 [7.52]; postimplementation, 56.71 [6.62]) were significantly higher (P = .02) 1 year after implementation. Burnout (P = .69) and secondary traumatic stress (P = .06) scores were not significantly different. After implementation, 74% of respondents reported that the debriefing process was "very helpful" or "somewhat helpful" after critical patient events. CONCLUSIONS: Compassion satisfaction improved and burnout and secondary traumatic stress did not change with implementation of the debriefing process after critical patient events.

The Shifting Landscape of Death by Neurologic Criteria in Pediatrics: Current Controversies and Persistent Questions.

Since the concept of death by neurologic criteria (DNC) or "brain death" was articulated by the Harvard Ad Hoc Committee in 1968, efforts to establish and uphold DNC as equivalent to biologic death have been supported through federal and state legislation, professional guidelines, and hospital policies. Despite these endeavors, DNC remains controversial among bioethics scholars and clinicians and is not universally accepted by patient families and the public. In this focused review, we outline the current points of contention surrounding the diagnosis of DNC in pediatric patients. These include physiologic, legal, and philosophical inconsistencies in the definition of DNC, controversy regarding the components of the clinical exam, variability in clinical practice, and ethical concerns regarding justice and role of informed consent. By better understanding these controversies, clinicians may serve families grappling with the diagnosis of DNC more effectively, compassionately, and equitably.

Prognostic Conversations Between Parents and Physicians in the Pediatric Intensive Care Unit.

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.

Measuring Social Health Following Pediatric Critical Illness: A Scoping Review and Conceptual Framework.

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.

Parent and Physician Report of Discussions About Prognosis for Critically Ill Children.

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.

How Should Clinicians Respond to Language Barriers That Exacerbate Health Inequity?

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.

Evaluation of Organ Dysfunction Scores for Allocation of Scarce Resources in Critically Ill Children and Adults During a Healthcare Crisis.

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.

A Randomized Comparative Trial to Evaluate a PICU Navigator-Based Parent Support Intervention.

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.

Palliative care for pediatric intensive care patients and families.

PURPOSE OF REVIEW: Children with medical or surgical critical illness or injury require skillful attention to physical, emotional, psychological, and spiritual needs, whereas their families need support and guidance in facing life-threatening or life-changing events and gut-wrenching decisions. This article reviews current evidence and best practices for integrating palliative care into the pediatric intensive care unit (PICU), with a focus on surgical patients. RECENT FINDINGS: Palliative care is best integrated in a tiered approach, with primary palliative care provided by the PICU and surgical providers for all patients and families, including basic symptom management, high-quality communication, and end-of-life care. Secondary and tertiary levels of care involve unit or team-based 'champions' with additional expertise, and subspecialty palliative care teams, respectively. PICU and surgical providers should be able to provide primary palliative care, to identify patients and families for whom a palliative care consult would be helpful, and should be comfortable introducing the concept of palliative care to families. SUMMARY: This review provides a framework and tools to enable PICU and surgical providers to integrate palliative care best practices into patient and family care.

"Take Out This Thing": A Teen's Decision About Removal of a Gastrostomy Tube.

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.

Cross-cultural Interactions and Shared Decision-making.

Shared decision-making (SDM) depends on high-quality communication between the physician and the decision maker. The shared beliefs, values, behaviors, and traditions that make up an individual's culture affect the way he or she communicates and receives information and impacts complex decision-making. Cultural differences between medical providers and patients or their families may lead to wrong assumptions, disparate priorities, a lack of shared goals, and conflict. When it comes to SDM in cross-cultural encounters, we recommend that clinicians acknowledge their own cultural beliefs and values (including those stemming from the culture of medicine), maintain awareness of potential biases and assumptions, appreciate the complexity of patient and family identities and narratives, practice cultural humility, understand the moral relevance of culture, and respect patient and family preferences for SDM. We present a case that illustrates many of these issues.

Biobanking in the Pediatric Critical Care Setting: Adolescent/Young Adult Perspectives.

Biorepository research in children raises numerous ethical questions that are heightened in the pediatric intensive care unit (PICU) setting. We conducted a cross-sectional, interview-based study of 20 adolescent/young adult (A/YA) PICU patients and 75 parents of PICU patients to elucidate perspectives on biorepository research. A/YAs had a positive attitude toward biobanking. In young adults, comprehension was higher for knowledge of a choice to withdraw and participate in the research and lower for purpose, procedures, risks, and benefits of participation. All but one A/YA wanted to have a say in whether their samples would be used. Parent views on child assent were mixed; 55% of parents favored child involvement in decisions. Efforts should be made to improve comprehension by A/YAs and involvement of A/YAs in decisions.