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.

Promoting COVID-19 vaccine acceptance: recommendations from the Lancet Commission on Vaccine Refusal, Acceptance, and Demand in the USA.

Since the first case of COVID-19 was identified in the USA in January, 2020, over 46 million people in the country have tested positive for SARS-CoV-2 infection. Several COVID-19 vaccines have received emergency use authorisations from the US Food and Drug Administration, with the Pfizer-BioNTech vaccine receiving full approval on Aug 23, 2021. When paired with masking, physical distancing, and ventilation, COVID-19 vaccines are the best intervention to sustainably control the pandemic. However, surveys have consistently found that a sizeable minority of US residents do not plan to get a COVID-19 vaccine. The most severe consequence of an inadequate uptake of COVID-19 vaccines has been sustained community transmission (including of the delta [B.1.617.2] variant, a surge of which began in July, 2021). Exacerbating the direct impact of the virus, a low uptake of COVID-19 vaccines will prolong the social and economic repercussions of the pandemic on families and communities, especially low-income and minority ethnic groups, into 2022, or even longer. The scale and challenges of the COVID-19 vaccination campaign are unprecedented. Therefore, through a series of recommendations, we present a coordinated, evidence-based education, communication, and behavioural intervention strategy that is likely to improve the success of COVID-19 vaccine programmes across the USA.

The case against COVID-19 vaccine mandates in pediatric solid organ transplantation.

BACKGROUND: The American Society of Transplantation in conjunction with the International Society for Heart and Lung Transplantation released a joint statement on August 13, 2021 in which they strongly recommend that solid organ transplant (SOT) recipients and their eligible household members and close contacts be vaccinated against SARS-CoV-2 with an approved COVID-19 vaccine. Some SOT programs have gone further and will refuse to list or transplant candidates unless the candidate and their household are vaccinated against SARS-CoV-2. METHODS: Two general pediatrician-ethicists use current best evidence and moral theory to argue why it is unethical to mandate COVID-19 vaccination for pediatric SOT candidates, their primary support person, and their households. RESULTS: Pediatric vaccine mandates are most justifiable when they prevent the harm of a serious vaccine preventable disease (VPD) in children in settings where transmission is highly likely and there are no alternatives that are effective in preventing transmission that intrude less on individual freedom. An additional justification for a vaccine mandate in the SOT context is stewardship of a scarce resource if there is significant risk of graft loss from the VPD to an unvaccinated SOT candidate or recipient. Current evidence does not support fulfillment of these criteria in pediatric solid organ transplantation. CONCLUSIONS: Making SOT listing contingent on COVID-19 vaccination is problematic. Though there is some risk of harm to a pediatric SOT candidate in remaining unvaccinated, the risk of harm of not being listed and transplanted is greater and overriding.

Living with the Unknown: A Qualitative Study of Parental Experience of Prognostic Uncertainty in the Neonatal Intensive Care Unit.

OBJECTIVE: This study aims to characterize the experience of prognostic uncertainty for neonatal intensive care unit (NICU) parents. STUDY DESIGN: We conducted a qualitative interview study of current and former NICU parents regarding their experience with prognostic uncertainty in the NICU. Interviews were transcribed and analyzed using a grounded theory methodology. RESULTS: Twenty-four parents were interviewed before achieving thematic saturation. Three phases of the parental experience of prognostic uncertainty emerged: shock, gray daze, and looking forward. These phases often, but not always, occurred sequentially. In shock, parents felt overwhelmed by uncertainty and were unable to visualize a future for their family. In gray daze, parents felt frustrated by the continued uncertainty. While accepting the possibility of a future for their family, they could not conceptualize a path by which to achieve it. In looking forward, parents accepted uncertainty as inevitable and incorporated it into their vision of the future. CONCLUSION: While each parent experienced the prognostic uncertainty in the neonatal intensive care unit in their own way, we found three common experiential phases. By understanding how a parent experiences prognostic uncertainty in these phases, providers may become better able to communicate and form therapeutic relationships with parents.

Caregiver and Clinician Perspectives on Missed Well-Child Visits.

PURPOSE: Despite the benefits of well-child care visits, up to one-half of these visits are missed. Little is known about why children miss them, so we undertook a qualitative study to elucidate these factors. METHODS: We interviewed 17 caregivers whose children had missed well-child visits and 6 clinicians, focusing on 3 areas: the value of well-child visits, barriers to attendance, and facilitators of attendance. Transcripts were analyzed with a grounded theory approach and thematic analysis. RESULTS: Caregivers and clinicians identified similar important aspects of well-child visits: immunizations, detection of disease, and monitoring of growth and development. Both groups identified similar barriers to attendance: transportation, difficulty taking time off from work, child care, and other social stressors. CONCLUSIONS: Further work to explore how addressing social determinants of health might improve attendance of well-child visits is needed.

Demonstrating 'respect for persons' in clinical research: findings from qualitative interviews with diverse genomics research participants.

The ethical principle of 'respect for persons' in clinical research has traditionally focused on protecting individuals' autonomy rights, but respect for participants also includes broader, although less well understood, ethical obligations to regard individuals' rights, needs, interests and feelings. However, there is little empirical evidence about how to effectively convey respect to potential and current participants. To fill this gap, we conducted exploratory, qualitative interviews with participants in a clinical genomics implementation study. We interviewed 40 participants in English (n=30) or Spanish (n=10) about their experiences with respect in the study and perceptions of how researchers in a hypothetical observational study could convey respect or a lack thereof. Most interviewees were female (93%), identified as Hispanic/Latino(a) (43%) or non-Hispanic white (38%), reported annual household income under US$60 000 (70%) and did not have a Bachelor's degree (65%); 30% had limited health literacy. We identified four key domains for demonstrating respect: (1) personal study team interactions, with an emphasis on empathy, appreciation and non-judgment; (2) study communication processes, including following up and sharing results with participants; (3) inclusion, particularly ensuring materials are understandable and procedures are accessible; and (4) consent and authorisation, including providing a neutral informed consent and keeping promises regarding privacy protections. While the experience of respect is inherently subjective, these findings highlight four key domains that may meaningfully demonstrate respect to potential and current research participants. Further empirical and normative work is needed to substantiate these domains and evaluate how best to incorporate them into the practice of research.

Parental Refusal of Childhood Vaccines and Medical Neglect Laws.

OBJECTIVES: To examine the relation of vaccine refusal and medical neglect under child welfare laws. METHODS: We used the Westlaw legal database to search court opinions from 1905 to 2016 and identified cases in which vaccine refusal was the sole or a primary reason in a neglect proceeding. We also delineated if religious or philosophical exemptions from required school immunizations were available at the time of adjudication. RESULTS: Our search yielded 9 cases from 5 states. Most courts (7 of 9) considered vaccine refusal to constitute neglect. In the 4 cases decided in jurisdictions that permitted religious exemptions, courts either found that vaccine refusal did not constitute neglect or considered it neglect only in the absence of a sincere religious objection to vaccination. CONCLUSIONS: Some states have a legal precedent for considering parental vaccine refusal as medical neglect, but this is based on a small number of cases. Each state should clarify whether, under its laws, vaccine refusal constitutes medical neglect.

Informed consent in pediatric anesthesiology.

BACKGROUND: Informed consent for pediatric anesthesia is unique because it is (1) obtained from surrogates (ie, parents) rather than from the patient and (2) sought after parents have authorized the surgical intervention. There are limited data on how pediatric anesthesia informed and consent discussions are conducted. The purpose of this study was to characterize the content of preanesthesia informed consent discussions and assess their impact on parent recall and understanding. METHODS: We conducted a cross-sectional observational study at a tertiary pediatric hospital. We audio-recorded and transcribed preanesthesia consent discussions between pediatric anesthesia providers and parents of children undergoing elective surgery. Parents were recruited on the day of surgery and completed a survey postdiscussion to assess their recall and perceived understanding. We used directed content analysis to identify 7 informed consent elements: (i) description of the plan; mention of (ii) alternatives, (iii) risks, and (iv) benefits; (v) discussion of uncertainties; (vi) assessment of comprehension; and (vii) solicitation of a decision. We used multivariable logistic regression to explore the association between discussions that included 3 informed consent elements (description of plan, mention of risks, and mention of benefits) and parent recall and understanding of these elements. RESULTS: We analyzed 97 discussions involving 41 different anesthesia providers. The element most frequently included in preanesthesia discussions was a description of the plan (100%); the least frequently included was decision solicitation (18%). Seventy-one percent of discussions included ≥5 informed consent elements and 70% included a description of the plan, mention of risks, and mention of benefits. Parental recall of these 3 informed consent elements was associated with their inclusion in the preanesthesia discussion (75% vs 34%), and more parents understood all 3 elements if they had reported (vs not reported) recall of all 3 elements (97% vs 53%). CONCLUSION: Most pediatric preanesthesia discussions include ≥5 informed consent elements and describe the plan, mention risks, and mention benefits. Inclusion of these latter 3 consent elements was associated with parental recall of these elements but not understanding.

The Influence of Provider Communication Behaviors on Parental Vaccine Acceptance and Visit Experience.

OBJECTIVES: We investigated how provider vaccine communication behaviors influence parental vaccination acceptance and visit experience. METHODS: In a cross-sectional observational study, we videotaped provider-parent vaccine discussions (n = 111). We coded visits for the format providers used for initiating the vaccine discussion (participatory vs presumptive), parental verbal resistance to vaccines after provider initiation (yes vs no), and provider pursuit of recommendations in the face of parental resistance (pursuit vs mitigated or no pursuit). Main outcomes were parental verbal acceptance of recommended vaccines at visit's end (all vs ≥ 1 refusal) and parental visit experience (highly vs lower rated). RESULTS: In multivariable models, participatory (vs presumptive) initiation formats were associated with decreased odds of accepting all vaccines at visit's end (adjusted odds ratio [AOR] = 0.04; 95% confidence interval [CI] = 0.01, 0.15) and increased odds of a highly rated visit experience (AOR = 17.3; 95% CI = 1.5, 200.3). CONCLUSIONS: In the context of 2 general communication formats used by providers to initiate vaccine discussions, there appears to be an inverse relationship between parental acceptance of vaccines and visit experience. Further exploration of this inverse relationship in longitudinal studies is needed.

A quality of life quandary: a framework for navigating parental refusal of treatment for co-morbidities in infants with underlying medical conditions.

Parental refusal of a recommended treatment is not an uncommon scenario in the neonatal intensive care unit. These refusals may be based upon the parents' perceptions of their child's projected quality of life. The inherent subjectivity of quality of life assessments, however, can exacerbate disagreement between parents and healthcare providers. We present a case of parental refusal of surgical intervention for necrotizing enterocolitis in an infant with Bartter syndrome and develop an ethical framework in which to consider the appropriateness of parental refusal based upon an infant's projected quality of life.

How you start the conversation matters.

Immunization rates are one of the many measures of quality care that are of interest to physicians. Immunization rates for children younger than 3 years of age in Minnesota have held steady between 80% and 90%. One reason they have not increased is because of emerging hesitancy among some parents to vaccinate their children. This article describes what research has taught us about working with vaccine-hesitant parents and how starting a conversation in a way that presumes parents will vaccinate may improve the odds of children getting immunized.