Pediatric bioethics

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...

Learning that one's child is seriously ill can be devastating, requiring families to decide when and how to share information about diagnosis and prognosis with their child. In most cases, this disclosure is made thoughtfully and collaboratively with the medical team. Some parents, however, may be concerned that disclosure will take away their child's hope, cause emotional pain, or exceed the child's capacity for understanding. Faced with competing obligations of truth-telling to their patient and respect for parental wishes, pediatricians may be unsure how to proceed...

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...

To understand whether they found a two-step decision process helpful and why, adolescent-parent dyads participating in a study investigating return of genomic testing results were asked about their decision-making experience. Responses were qualitatively coded and analyzed using thematic analysis. Adolescents and parents found both joint and independent decision-making stages helpful. Regarding independent decision-making, adolescents appreciated exercising independence, while parents valued both adolescent and parental independence...

BACKGROUND: Sharing of genomic data aims to make efficient use of limited resources, which may be particularly valuable in rare disease research. Adult research participants and parents of pediatric research participants have shown support for data sharing with protections, but little is known about adolescent attitudes on genomic privacy and data sharing. METHODS: In-depth interviews were conducted with 10 adolescents and 18 parents of children enrolled in a pediatric genomic research repository...

This policy statement aims to enhance comfort and increase knowledge of pediatric organ donation and transplantation to the general pediatric community, specifically focusing on the pediatric health care professional and the medical home. The pediatric health care professional will care for neonates, infants, children, and adolescents who may become donors or transplant recipients and, thus, is a crucial member of the pediatric patient's care team. Understanding donation, transplantation, and follow-up care are important to primary care engagement...

OBJECTIVES: Pediatric health-care workers often care for families of minority religious backgrounds, but little is known about their perspective in providing culturally and spiritually appropriate care for Muslim patients. We aimed to (1) characterize the attitudes, knowledge, and skills of health-care workers in the care of critically ill Muslim children and (2) evaluate preferences for different educational interventions to improve care of critically ill Muslim children. METHODS: We administered a single-center, cross-sectional, 33-question, electronic survey of interdisciplinary health-care workers in a large pediatric intensive care unit in New York City to characterize their attitudes, knowledge, and skills in caring for critically ill Muslim children...

Muslims comprise nearly a quarter of the worldwide population, with significant populations in the United States, Canada, and Europe. As clinicians, it is important to be familiar with Islamic religious and cultural perspectives on medical treatment, life-prolonging measures and comfort and palliative care, but historically, this has been a gap in the literature. Recently, there have been multiple papers discussing Islamic bioethics, particularly in regards to end of life care in adults; however, there has been a lack of literature discussing the Islamic perspective on issues related to neonatal and perinatal end of life care...

No abstract text is available yet for this article.

It was a strong and long-standing demand of people born of gamete donation: to know who is the person who allowed them to come into the world. The French legislator seemed to take this need into account during the last revision of the bioethics law. But if the rules have already changed for donors, for whom anonymity becomes fixed-term, for individuals born from a donation, access to their origins is far from being guaranteed to this day.

Background and Objectives : In 1989, the United Nations (UN) General Assembly adopted the United Nations Convention on the Rights of the Child (UNCRC), with a considerable number of the Articles of the Convention being related to the health status of children. Therefore, adhering to and assessing the implementation of the rights of children during hospitalization is a very important step towards child protection. Herein, we attempt to highlight the depth of knowledge of employees working in children's hospitals with regard to children's rights as well as the degree of adherence to the UNCRC with respect to hospitalized children...

Ultra-rapid genomic sequencing (urGS) is increasingly used in neonatal and pediatric intensive care settings (NICU/PICU), demonstrating high diagnostic and clinical utility. This study aimed to explore the perspectives of healthcare professionals (HPs) and the challenges raised by urGS, particularly when making treatment decisions. Four focus groups and two interviews were conducted with HPs who had experience using urGS in NICU/PICU. Inductive content analysis was used to analyze the data. Nineteen HPs participated overall (eight clinical geneticists, nine genetic counselors, and two intensivists)...

No abstract text is available yet for this article.

OBJECTIVE: To assess which potential future outcomes are most important to parents of children with bronchopulmonary dysplasia (BPD), a disease that affects future respiratory, medical, and developmental outcomes for children born preterm. STUDY DESIGN: We recruited parents from two children's hospitals' neonatal follow-up clinics and elicited their importance rating for 20 different potential future outcomes associated with BPD. These outcomes were identified and selected through a literature review and discussions with panels of parents and clinician stakeholders, via a discrete choice experiment...

BACKGROUND: Families whose child has unexplained intellectual or developmental differences often hope that a genetic diagnosis will lower barriers to community-based therapeutic and support services. However, there is little known about efforts to mobilize genetic information outside the clinic or how socioeconomic disadvantage shapes and constrains outcomes. METHODS: We conducted an ethnographic study with predominantly socioeconomically disadvantaged families enrolled in a multi-year genomics research study, including clinic observations and in-depth interviews in English and Spanish at multiple time points...

Maternal-fetal interventions-such as prenatal fetal myelomeningocele (MMC) repair-are at the forefront of clinical innovation within maternal-fetal medicine, pediatric surgery, and neonatology. Many centers determine eligibility for innovative procedures using pre-determined inclusion and exclusion criteria based on seminal studies, for example, the "Management of Myelomeningocele Study" for prenatal MMC repair. What if a person's clinical presentation does not conform to predetermined criteria for maternal-fetal intervention? Does changing criteria on a case-by-case basis (i...

OBJECTIVE: To investigate long-term outcomes of infants who survive despite life-and-death discussions with families and a decision to withdraw or withhold life-sustaining interventions (WWLST) in one neonatal intensive care unit (NICU). STUDY DESIGN: Medical records for NICU admissions from 2012-2017 were reviewed for presence of WWLST discussions or decisions, as well as the 2-year outcome of all children who survived. WWLST discussions were prospectively recorded in a specific book; follow-up up to age two was determined by retrospective chart review...

OBJECTIVES: To identify sociodemographic factors associated with pediatric clinical ethics consultation (CEC). We hypothesized CEC would be higher among Black patients, patients with public/no insurance, and those using language interpretation. STUDY DESIGN: Matched, case-control study at a single-center, tertiary pediatric hospital in the Pacific Northwest. Cases (patients hospitalized January 2008 to December 2019 with CEC) were compared with controls (those without CEC)...

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...

In a recent article, Tyler Tate argues that the suffering of children - especially children with severe cognitive impairments - should be regarded as the antithesis of flourishing, where flourishing is relative to one's individual characteristics and essentially involves receiving care from others. Although initially persuasive, Tate's theory is ambiguous in several ways, leading to significant conceptual problems. By identifying flourishing with receiving care, Tate raises questions about the importance of care that he does not address, giving rise to a bootstrapping problem...