Racial and Ethnic Differences in Inpatient Palliative Care for Pediatric Stem Cell Transplant Patients.

OBJECTIVES: Racial/ethnic disparities in utilizing inpatient palliative care services are well documented in the adult literature. However, the impact of racial/ethnic disparities in the context of pediatric palliative care is less well understood even in high-acuity patient populations such as stem cell transplant patients. We investigated racial/ethnic differences in the utilization of inpatient palliative care consultations (IPCCs) for pediatric stem cell transplant patients. STUDY DESIGN: A retrospective cohort study was conducted using the Pediatric Health Information System database. A generalized linear mixed effects model was developed to assess demographic and clinical characteristics associated with the likelihood of receiving IPCC. SETTING: Thirty-eight tertiary pediatric hospitals in the United States. PATIENTS: Pediatric patients undergoing stem cell transplantation for any indication from January 2017 to December 2019. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Of the 1,193 inpatient encounters studied, 12% (n = 143) included a palliative care consult. IPCC rates varied across hospitals with a median rate of 5.97% (interquartile range, 0.00-20.71). In multivariable analyses, Hispanic/Latinx patients were 59% less likely to receive IPCC compared with non-Hispanic White patients (odds ratio [OR], 0.41; 95% CI, 0.21-0.78). This difference persisted after adjusting for all other sociodemographic and clinical factors. In terms of the other clinical characteristics, having a malignant condition and mechanical ventilation were associated with significantly increased odds of receiving IPCC for the entire cohort (OR Malignancy: 1.93; 95% CI: 1.07-3.51; OR Mechanical Ventilation: 2.37; 95% CI: 1.36-4.13). The remainder of the variables were not found to be significantly associated with IPCC. CONCLUSIONS: Racial and ethnic differences exist in the likelihood of receiving palliative care consultations among hospitalized pediatric stem cell transplant recipients. Evaluating the impact of systemic racism and social determinants on palliative care medicine as well as standardizing early integration of IPCC may potentially mitigate disparities in this population.

Why the Individual Provider Approach to Pediatric Palliative Care Consultation Exacerbates Healthcare Disparities: A Moral Argument for Standard Referral Criteria.

Pediatric palliative care is specialized medical care for children who live with serious and life-limiting illnesses, with the central goal to improve quality of life for both children and their families. Presently, a majority of pediatric palliative care referrals are based on the traditional consultative model, in which primary providers serve as the gatekeepers to palliative care access. It is well-known that racial and ethnic healthcare disparities exist across the continuum of care, fraught with healthcare providers' biases that impact the care delivered. This includes the referral practices, allocation and utilization of palliative care services, and leaving vulnerable children and families with potentially unmet palliative care needs. We make the moral argument that the establishment of standard referral criteria for pediatric palliative care services is one simple step that must be taken to begin to address and hopefully ameliorate the impact of providers' biases and disparities that exist within pediatric palliative care.

Overall Health Following Pediatric Critical Illness: A Scoping Review of Instruments and Methodology.

OBJECTIVES: Families identify overall health as a key outcome after pediatric critical illness. We conducted a planned secondary analysis of a scoping review to determine the methods, populations, and instruments used to evaluate overall health outcomes for both children and their families after critical illness. DESIGN: Planned Secondary Analysis of a Scoping Review. SETTING: We searched PubMed, EMBASE, PsycINFO, Cumulative Index of Nursing and Allied Health Literature, and the Cochrane Controlled Trials Registry databases from 1970 to 2017 to identify studies which measured postdischarge overall health of children who survived critical illness and their families. SUBJECTS: Articles reporting overall health outcomes after pediatric critical illness. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Among the 407 articles which measured outcomes following pediatric critical illness, 161 (40%) measured overall health. The overall health domain was most commonly measured in traumatic brain injury (44%) and the general PICU populations (16%). In total, there were 39 unique measures used to evaluate overall health. Across all subjects, seven measures accounted for 89% of instruments, with the Glasgow Outcome Scale (47%) and the Pediatric Overall Performance Category (17%) being most commonly used. Excluding studies targeting survivors of traumatic brain injury, Pediatric Overall Performance Category, Glasgow Outcome Scale, and the General Health Questionnaire were the most commonly used instruments. Patients were followed for a median 10.5 months (interquartile range, 4.5-21 mo). CONCLUSIONS: Overall health was commonly assessed post-PICU discharge, especially in the traumatic brain injury population, using a heterogenous array of measures. Evaluation and consensus are imperative to identify the most appropriate method to measure overall health with the goal of improving care efficacy and facilitating recovery across populations of critically ill children.

Management Options and Outcomes for Neonatal Hypoplastic Left Heart Syndrome in the Early Twenty-First Century.

Without surgical treatment, neonatal hypoplastic left heart syndrome (HLHS) mortality in the first year of life exceeds 90 % and, in spite of improved surgical outcomes, many families still opt for non-surgical management. The purpose of this study was to investigate trends in neonatal HLHS management and to identify characteristics of patients who did not undergo surgical palliation. Neonates with HLHS were identified from a serial cross-sectional analysis using the Healthcare Cost and Utilization Project's Kids' Inpatient Database from 2000 to 2012. The primary analysis compared children undergoing surgical palliation to those discharged alive without surgery using a binary logistic regression model. Multivariate logistic regression was conducted to determine factors associated with treatment choice. A total of 1750 patients underwent analysis. Overall hospital mortality decreased from 35.3 % in 2000 to 22.9 % in 2012. The percentage of patients undergoing comfort care discharge without surgery also decreased from 21.2 to 14.8 %. After controlling for demographics and comorbidities, older patients at presentation were less likely to undergo surgery (OR 0.93, 0.91-0.96), and patients in 2012 were more likely to undergo surgery compared to those in prior years (OR 1.5, 1.1-2.1). Discharge without surgical intervention is decreasing with a 30 % reduction between 2000 and 2012. Given the improvement in surgical outcomes, further dialogue about ethical justification of non-operative comfort or palliative care is warranted. In the meantime, clinicians should present families with surgical outcome data and recommend intervention, while supporting their option to refuse.

Language Matters: Race, Trust, and Outcomes in the Pediatric Emergency Department.

OBJECTIVE: Trust in physicians and health care system has been positively associated with health care outcomes. The purpose of this study is to explore the relationships among race, ethnicity, language, trust, and health care outcomes. METHODS: This prospective cross-sectional study took place in the pediatric emergency department of an intercity hospital. English- and Spanish-speaking guardians were asked to complete a demographic survey, the Pediatric Trust in Physicians Scale, and the Group-Based Medical Mistrust Scale. RESULTS: Four hundred seventy-five parents were surveyed, of which 21.35% identified as white, 35.05% as African American, and 53.26% as Hispanic; with respect to language: 88% English-speaking and 12% Spanish-speaking. No significant difference was seen in trust scores for sex, ethnicity, or religious affiliation. Non-Hispanics and English speakers demonstrated an overall higher trust in their physician. English-speaking participants were found to have higher percentages in all measured emergency department variables compared to Spanish speakers, including admittance (9.09% and 0.93%, respectively) as well as receiving interventions (42.34% and 5.53%, respectively). CONCLUSIONS: Our study shows that race and ethnicity influence trust and mistrust as well as actual health care outcomes. Interestingly, language barrier proved to be one of the greatest causes of health care disparities. Therefore, more research is needed to find a way to bridge the increasing language barrier between physicians and patients.

Improving the potential for organ donation in an inner city Muslim American community: the impact of a religious educational intervention.

OBJECTIVE: We aimed to assess the willingness of Muslim Americans to be potential organ donors, to describe potential religious barriers to organ donation, and to evaluate the efficacy of a brief religious educational intervention. METHODS: Face-to-face survey with English-, Arabic-, and Urdu-speaking Muslim American adults in places of worship and gatherings. The two-part survey included questions about demographics and organ donation. A brief educational intervention followed, which included an explanation of organ donation, along with the evidence for Islam's support for organ donation. After this intervention, the questions about organ donation and brain death were repeated. RESULTS: The response rate was 81% (231 of 285). Fifty percent of the respondents would donate their organs. Twenty-five percent changed their opinion and accepted the idea of being donors after the educational intervention. Lack of awareness of the support of Islam to organ donation and fear of disfigurement were the most common barriers cited. CONCLUSION: Muslim Americans are less likely than Caucasian Americans to be organ donors, and the perceived lack of support from Islam for organ donation is a factor. The effectiveness of our brief religious education intervention suggests that further education may improve organ donation rates among the Muslim community.

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.

Futility: unilateral decision making is not the default for pediatric intensivists.

OBJECTIVE: Many hospitals have established medical futility policies allowing a physician to withdraw or withhold treatment considered futile against families' wishes, although little is known on how these policies are used. The goal of our study was to elucidate the perspective of pediatric critical care physicians on futility. METHODS: We sent an anonymous survey to all active members of the American Academy of Pediatrics Section of Critical Care, using Survey Monkey http://www.surveymonkey.com as the questionnaire tool. The survey included four clinical vignettes where families desired care that could be perceived as futile care. In each scenario, participants were asked if they would go against the families' wishes and how they would resolve the conflict. RESULTS: There were 266 of 618 (43%) respondents. For an infant with severe hypoxic ischemic injury and intestinal failure, the majority of physicians (83.7%) would not enact a unilateral do not attempt resuscitation order. For an oncology patient with multiorgan system failure and encephalopathy, the majority (90.4%) would not enact a unilateral donotattemptresuscitation. In the case where a child was declared brain dead, 54.3% of physicians would support unilateral donotattemptresuscitation, yet a third (33.1%) would continue mechanical ventilation. In the case of cardiac surgery for a patient with trisomy 13, the majority (67.1%) would not advocate for surgery. In most scenarios, intensivists cited consultation from the ethics committee (53.8%-76.6%) as the most appropriate way to resolve the conflict. Qualitative data revealed intensivists would prefer to honor families' wishes and utilize time with support from a multidisciplinary team rather than unilateral do not attempt resuscitation to resolve these conflicts. CONCLUSIONS: The majority of pediatric intensivists are not in support of unilateral do-not-attempt resuscitation or withholding care against families' wishes for a variety of reasons. Given this understandable reluctance on the part of the physicians for enforcing decisions, providing unqualified support to families at this difficult time is imperative. Further research is needed to facilitate decision making that respects the moral integrity of families and physicians.

Palliative Care Utilization Following Out-of-Hospital Cardiac Arrest in Pediatrics.

OBJECTIVES: Pediatric out-of-hospital cardiac arrest (OHCA) is associated with significant morbidity and mortality. Pediatric palliative care (PPC) services could provide an integral component of the comprehensive care necessary for these patients and their families. The main objectives of this study are to examine the utilization of PPC following OHCA and compare the differences in characteristics between children who received PPC with those who did not. DESIGN: Retrospective cohort study. SETTING: An urban, tertiary PICU. PATIENTS: Children less than 21 years old admitted from October 2009 to October 2019 with an admitting diagnosis of OHCA and minimum PICU length of stay (LOS) of 48 hours. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Of the 283 patient charts reviewed, 118 patient encounters met inclusion criteria. Of those, 34 patients (28.8%) received a PPC consultation during hospitalization. Patients who received PPC had a longer PICU LOS (14.5 vs 4.0 d), a greater number of ventilator days (12.5 vs 4.0 d), and a larger proportion of do-not-resuscitate (DNR) statuses (41% vs 19%). When comparing the disposition of survivors, a greater proportion was discharged to rehab or nursing facilities (47% vs 28%), with no difference in mortality rates (53% vs 50%). In the multivariate logistic regression model, older age, longer LOS, and code status (DNR) were all associated with higher likelihood of PPC utilization. Data were analyzed using descriptive, Mann-Whitney U, and Fisher exact statistics. CONCLUSIONS: Our study demonstrates PPC services following OHCA are underutilized given the high degree of morbidity and mortality. The impact of automatic PPC consultation in all OHCA patients who survive beyond 48 hours should be explored further. Future studies are warranted to understand the benefits and barriers of PPC integration into standard postarrest care for patients and families.

Palliative Care Across the Continuum of Childhood.

Palliative care should be integrated along the continuum for all children living with life-limiting illness. Many misconceptions about palliative care exist, including the misunderstanding that palliative and curative care are mutually exclusive. Many associate palliative care with hospice and do not recognize that palliative care is available and beneficial before end of life. Palliative care should be initiated at the time a family receives a life-limiting diagnosis and should continue throughout the child's life. Children may have a better quality of life and even longer life span when palliative care has an earlier initiation. In this article, we discuss these common misconceptions and describe how children and families benefit from palliative care when it is integrated along the illness continuum. In addition, we discuss how pediatricians can incorporate these principles into their practice to support their families. [Pediatr Ann. 2022;51(1):e40-e46.].