Pediatric Ethics Research Articles

Everyday Ethics or Deference to Expertise: Experiences of Pediatric Palliative Care Teams with Ethics Consultancy.

Background: Little is known about the extent to which pediatric palliative care (PPC) clinicians are engaged in ethics consults or how they perceive interactions with ethics consultants. Objective: Describe the extent to which PPC team members serve in pediatric health care ethics (PHCE) consultancy roles and to describe their experiences interacting with pediatric ethic consultant services. Design: Online survey distributed to members of the American Academy of Pediatrics and American Academy of Hospice and Palliative Care pediatric and ethics section and special interest groups in the United States. Results: Eighty-six responses were obtained (response rate 45%) from PPC teams in 70 different children's hospitals located in 34 states. Almost all (97%) reported a functional ethics consult service such that PPC is not expected to meet the ethics need of the institution. A person involved on the PPC team also performed ethics consults in half (49%) of the settings, predominantly the PPC physician. Most respondents who perceive PPC teams engage in ethics-relevant work as part of their everyday PPC work. Formal ethics training was lacking among PPC members involved in ethics consults with few ethics degrees (15%), certifications (6%), or fellowships (2%). Discord (67%), conflict (49%), limitations to treatment (48%), and distress (41%) were cited as the most frequent reasons for which PPC teams consult ethics. PPC respondents identified role clarity, coordinated engagement, timely presence, and open communication as strong PHCE consultant practices. Conclusions: PPC team members performing ethics consults may benefit from additional ethics education and training. Further research is warranted to delineate scope of ethics consultancy relevant to PPC and role clarity.

Do Reasons Matter? Navigating Parents’ Reasons in Healthcare Decisions for Children

Bioethics has dedicated itself to exploring and defending both reasons for and against certain aspects of clinical care, biomedical research and health policy, including what decisions must be made, who should make them, and how they should be made. In pediatrics, it’s widely acknowledged that parents’ reasons may matter pragmatically; attending to parents’ reasons is important if we want to work with families. Yet the conventional view in pediatric ethics is that parents’ reasons are irrelevant to whether a decision is permissible or impermissible according to accepted ethical standards. In this paper, we explore whether parents’ reasons matter ethically and, if so, in what way and for whom. First, we clarify what we mean by ‘reasons.’ Second, we provide an overview of how reasons are typically treated in medical decision-making and pediatric ethics. Third, we analyze a hypothetical pediatric case to illustrate how changing reasons can transform ethical analyses, including by contributing to where and how clinicians and ethicists draw the boundaries intrinsic to common pediatric ethical frameworks. We push back against the conventional view and argue that parents’ reasons matter ethically in several ways. We call for further research on the role of parents’ reasons in clinical ethics deliberation.

Review of Outpatient Pediatric Ethics Consults at an Academic Medical Center.

Limited data exist in the specific content of pediatric outpatient ethics consults as compared to inpatient ethics consults. Given the fundamental differences in outpatient and inpatient clinical care, we aimed to describe the distinctive nature of ethics consultation in the ambulatory setting. This is a retrospective review at a large, quaternary academic center of all outpatient ethics consults in a 6-year period. Encounter-level demographic data was recorded, and primary ethical issue and contextual features were identified using qualitative conceptual content analysis. A total of 48 consults were identified representing 44 unique patients. The most common primary ethical issue was beneficence and best interest concern comprising 20 (42%) consults, followed by refusal of recommended treatment comprising 11 (23%) consults and patient preference/assent comprising 5 (10%) consults. The most common contextual features were staff-family communication dispute/conflict comprising 28 (58%) consults, followed by legal involvement comprising 25 (52%) consults and quality of life comprising 19 (40%) consults. The most common consulting specialty was hematology/oncology. Ethical issues encountered in the provision of outpatient pediatric care are distinct and differ from those in inpatient consults. Further research is necessary to identify strategies and educational gaps in outpatient ethics consultation to increase its effectiveness and utilization.

Optimizing early phase clinical trial washout periods: a report from the Therapeutic Advances in Childhood Leukemia and Lymphoma consortium.

The National Cancer Institute (NCI) issued a 2021 memorandum adopting the American Society of Clinical Oncology (ASCO) and Friends of Cancer Research (Friends) task force recommendations to broaden clinical study eligibility criteria. They recommended that washout periods be eliminated for most prior cancer therapy and when required to utilize evidence- and/or rationale-based criteria. The Therapeutic Advances in Childhood Leukemia and Lymphoma (TACL) consortium responded to this guidance. A TACL task force reviewed the consortium's research portfolio, the relevant literature and guidance documents from ASCO-Friends, NCI, and US Food and Drug Administration to make expert consensus and evidence-based recommendations for modernizing, broadening, and codifying TACL-study washout periods while ensuring consistency with pediatric ethics, and federal regulations. TACL's screening log was reviewed to estimate the impact that updated washout periods would have on patient inclusivity and recruitment. Over a 19-year period, 42 (14.6% of all screened ineligible patients [n = 287]) patients were identified as excluded from TACL early phase studies exclusively because of not meeting washout criteria. An additional 6 (2.1%) did not meet washout and at least 1 other exclusion criterion. A new TACL washout guidance document was developed and then adopted for use. Where washout criteria were not eliminated, rationale- and/or evidenced-based criteria were established with citation. In an effort to reduce unnecessary exclusion from clinical trials, TACL created rationale- and/or evidenced-based washout period standards largely following guidance from the NCI and ASCO-Friends recommendations. These new, expanded eligibility criteria are expected to increase access to TACL clinical trials while maintaining safety and scientific excellence.

Analysis of 20 Years of Ethics Consultations at a U.S. Children's Hospital.

AbstractEmpirical studies of pediatric clinical ethics cases are scant in the biomedical and bioethics literature. In this study, more than 100 detailed records of clinical ethics consultations spanning from 2000 to 2020 at a moderately sized U.S. Mid-Atlantic children's hospital were abstracted and analyzed. Findings of the analysis were generally consistent with other studies in pediatric clinical ethics, with additional insight into aspects of moral distress associated with cases, family engagement with consultations, and other characteristics of interest also documented. Over the 20-year time frame, ethics consults were completed on average twice a year, with a detectable upward trend. Consultations were requested across the spectrum of services and units within the hospital, with critical care environments represented most frequently and genetic and neurological conditions being the most common primary diagnoses. Ethical analysis most commonly related to questions around the principles of autonomy and beneficence.

Bioethical, medical, and social problems in children with growth hormone deficiency

Background. Medical and practical advancements have brought about new possibilities for providing healthcare to people, but with it comes new bioethical challenges. In many pediatric medical institutions, consultations on pediatric ethics have become common practice. However, the bioethical problems related to short children have not been studied enough yet. The purpose of this study is to identify and analyze bioethical, medical, and social issues in children with growth hormone deficiency (GHD), which can potentially hinder timely diagnosis and adherence to replacement therapy. Materials and methods. The identification of bioethical, medical, and social problems was conducted at the Odesa Regional Children’s Hospital between 2012 and 2020. The study involved a cohort of 94 children with GHD and short stature (SDS 3.4 ± 0.1), aged 7.2 ± 0.4 years, as well as their parents (124 individuals). The study was based on a questionnaire survey, history taking, interviews, objective examination of patients, and analysis of medical records. Results. The study found evidence of violations of the Hippocratic principle of help and assistance (“do good”) in the form of delayed or incorrect diagnosis in 10.6 % of cases and incomplete adherence to local protocols for managing sick children in 6.4 % of cases. Violations of the Hippocratic principle of non-harm (“first, do no harm”) were evidenced by adverse events (16.0 %) and serious adverse events (3.2 %) during replacement therapy. Children with GHD were subject to violations of social justice, such as neglect (8.5 %), socio-economic problems in the family (12.8 %), and external environmental restrictions (9.6 %). Violations of the personal autonomy of children with GНD inclu­ded physical and psychological abuse in the family (29.8 and 38.3 % of cases, respectively), stigmatization (25.5 %), school bullying (27.2 %), medical neglect (5.3 %), medical paternalism (6.4 %), and overprotection (10.6 %). Conclusions. In the management of children with GHD, various bioethical, medical, and social issues have come to light. Low adherence to recombinant human growth hormone therapy can be considered an independent bioethical problem associated with medical paternalism and medical neglect.

Pediatric Ethics: Theory and Practice, edited by Nortje, N./Bester, J. C.

Pediatric Ethics: Theory and Practice, edited by Nortje, N./Bester, J. C.

Coping strategies and interventions to alleviate moral distress among pediatric ICU nurses: A scoping review.

Moral distress significantly affects pediatric ICU nurses, leading to nurse burnout, increased turnover and reducing patient care quality. Despite its importance, there's a notable gap in knowledge on how to manage it effectively. This review aimed to systematically identify and analyze coping strategies and interventions targeting moral distress among pediatric nurses in ICU, uncovering research gap and future studies directions. A scoping review was conducted followed framework by Levac, Colquhoun, and O'Brien and Arksey and O'Malley. Searches were performed in 11 electrical databases, like PubMed and China Biology Medicine disc, within a timeframe of the database construction to November 2023, and performed literature screening and data extraction. Sixteen articles were ultimately included. Coping strategies adopted by pediatric ICUs nurses can be categorized into adaptive and maladaptive strategies, with the latter including passive acceptance, taking leave, and drinking, while the former involve pursuing interests outside of work, reflection and philosophizing, and communication. Nine articles described and evaluated the effectiveness of interventions for moral distress, categorizing them into individual and institutional levels. Individual-level interventions include Interprofessional Perspective-Taking, the PICU Resiliency Bundle, Ethics Education/Skills, and the Center for Caring. Institutional-level interventions encompasses Comprehensive Care Round, Goals of Care Conversations, Pediatric Ethics and Communication Excellence Rounds, Nursing Ethics Council, and Medical Ethical Decision-Making, though not all were effective in alleviating moral distress. Nurses often use self-adjustment strategies for moral distress, institutional ethical support focusing on enhancing nurses' moral resilience, promoting reflective thinking and improving communication remains crucial. Various interventions for moral distress are currently available, but nurse engagement is low and their effectiveness remained to be verified. Future studies should explore what aids or hinders these interventions. There's also a need for large, multicenter trials and ongoing evaluations to create effective support systems for pediatric ICU nurses.

Optimizing pediatric periprocedural pain management part I-Evolving ethics and topical anesthetics.

Pediatric procedure-related pain management is often incompletely understood, inadequately addressed, and critical in influencing a child's lifelong relationship with the larger health care community. We highlight the evolution of ethics and expectations around optimizing periprocedural pain management as a fundamental human right. We investigate the state-of-the-art of topical anesthetics, reviewing their mechanisms of action and providing comparisons of their relative safety and efficacy data to help guide clinical selection. In total, this two-part review offers a combination of conventional approaches and innovative techniques that should be used multimodally-in series and in parallel-to help optimize pain management and provide alternatives to sedation medication and general anesthesia.

Competence or Experience

Competence or Experience

Ankyloglossia in newborns: incidence and breastfeeding follow-up at 1 and 6 months.

Ankyloglossia is an anatomical variation of the lingual frenulum that negatively interferes with the functionality of the tongue. This condition can affect breastfeeding negatively. The aim of this study is to assess the prevalence of ankyloglossia among healthy babies born in Siena Hospital and the correlation between ankyloglossia and breastfeeding difficulties. We performed an observational prospective study conducted on healthy and breastfed newborns born in Siena Hospital in the period between January and June 2022. The evaluation of lingual frenulum in the first few days of life was performed by Martinelli's Lingual Frenulum Protocol with scores for Infants (MLFPI), while the clinical assessment of breastfeeding initiation was performed by the Breastfeeding Observation and Evaluation Form according to WHO-UNICEF guidelines. We also compared the reliability in predicting breastfeeding of a tool that measured the features of the tongue frenulum: the Bristol Tongue Assessment Tool (BTT). Breastfeeding at one and six months of babies' age was assessed by telephone interview, and information among children's nutrition, weight growth and difficulties found in breastfeeding was also collected. This study was approved by the Pediatric Ethics Committee for Clinical Trials of the Tuscany Region. One hundred and ninety infants were included in the study; 21 (11.05%) had a MLFPI score ≥13. Data at one month of age showed a statistically higher MLFPI score (P value <0.001) in babies with breastfeeding difficulties (median score 13.0, IQR 5.5-14), than in those without (median score 5.0, IQR 2.0-7.5). Data at 6 months of age showed a similar difference in babies with and without breastfeeding difficulties (median 12.0, IQR 4.0-14.0 vs. 5.0, IQR 2.0-8.0 respectively). A MLFPI score ≥13 is positively associated with breastfeeding difficulties at 1 and 6 months. Also, the BTT was positively a risk factor for problems in breastfeeding at 1 and 6 months. A high MLFPI score is a risk factor of breastfeeding difficulties. In these cases, a referral to experienced personnel is advisable: they can provide the emotional and professional support to the mother-child dyad, and/or refer for surgical evaluation and frenotomy. In our cohort, the usefulness of either MLFPI score or BTT was evident in predicting breastfeeding difficulties; the rate of surgical removal of the frenulum was nonetheless low.

Limits on Parental Discretion in Medical Decision-Making: pediatric intervention principles converge.

Pediatric intervention principles help clinicians and health-care institutions determine appropriate responses when parents' medical decisions place children at risk. Several intervention principles have been proposed and defended in the pediatric ethics literature. These principles may appear to provide conflicting guidance, but much of that conflict is superficial. First, seemingly different pediatric intervention principles sometimes converge on the same guidance. Second, these principles often aim to solve different problems in pediatrics or to operate in different background conditions. The potential for convergence between intervention principles-or at least an absence of conflict between them-matters for both the theory and practice of pediatric ethics. This article builds on the recent work of a diverse group of pediatric ethicists tasked with identifying consensus guidelines for pediatric decision-making.

Childhood Interests: what they are and why it matters.

This paper examines the concept and moral significance of "childhood interests." This concept is important in medical decision-making for children and more broadly in the field of pediatric ethics. The authors argue that childhood interests are identifiable components of childhood well-being that carry moral weight. Parents have a special role in protecting and promoting these interests and special obligations to do so. These parental obligations are grounded by the independent interests of the child, as well as the good of society more generally. Because parents have these child-rearing obligations, they must also have the authority and wide discretion necessary to fulfill them. However, while parental discretion is wide, it is not unlimited, for it must be used to safeguard and advance childhood interests.

Frequency of Perceived Conflict between Families and Clinicians at Time of Clinical Ethics Consultation in Hospitalized Children

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. We also assessed the bivariable association between conflict and patient age, patient- or family-reported race/ethnicity, language for care, insurance status, clinical setting, and consultant involvement. Results Perceived conflict between clinicians and families was present in 44% (91/209) of CEC. We observed a higher occurrence of clinician-family conflict within certain consult topics than others, in particular, informed consent/parental permission (69%), cultural considerations (67%), benefit/harm assessment (58%), and limitation of life-sustaining treatment (58%). We found no other significant associations between the presence of perceived conflict and patient sociodemographic factors or CEC factors. Conclusions Conflict between healthcare teams and families appears common in CEC, particularly with certain consult topics. Further study is needed to better understand conflict types, causes of conflicts, management and mediation strategies, and outcomes.

Newborn Male Circumcision.

This symposium includes twelve personal narratives from parents about making the decision whether to circumcise their infant male children. The authors of the narratives include five fathers and seven mothers. Nine of the 12 parent authors opted to circumcise their infant sons, though the reasons they stated for doing so varied. Most of the parent authors relied on cultural or social beliefs, religious guidance, or a desire for sameness with the infant's father. Parents who didn't circumcise their male infants discuss their convictions about autonomy, bodily rights, and the medical benefits of circumcision versus the harm or pain caused by the procedure. The symposium includes four expert commentaries on the narratives that are informed and enriched by the commentators' expertise in pediatric bioethics, healthcare ethics, gender studies, Jewish law and tradition, and the medical and surgical techniques of circumcision.

Concordance of International Regulation of Pediatric Health Research

To assess the comparability of international ethics principles and practices used in regulating pediatric research as a first step in determining whether reciprocal deference for international ethics review is feasible. Prior studies by the authors focused on other aspects of international health research, such as biobanks and direct-to-participant genomic research. The unique nature of pediatric research and its distinctive regulation by many countries warranted a separate study. A representative sample of 21 countries was selected, with geographical, ethnic, cultural, political, and economic diversity. A leading expert on pediatric research ethics and law was selected to summarize the ethics review of pediatric research in each country. To ensure the comparability of the responses, a 5-part summary of pediatric research ethics principles in the US was developed by the investigators and distributed to all country representatives. The international experts were asked to assess and describe whether principles in their country and the US were congruent. Results were obtained and compiled in the spring and summer of2022. Some of the countries varied in their conceptualization or description of one or more ethical principles for pediatric research, but overall, the countries in the study demonstrated a fundamental concordance. Similar regulation of pediatric research in 21 countries suggests that international reciprocity is a viable strategy.

Disparities in Clinical Ethics Consultation among Hospitalized Children: A Case-Control Study

To identify sociodemographic factors associated with pediatric clinical ethics consultation (CEC). 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. 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. We found disparities in receipt of CEC by race and insurance status. Further study is needed to determine the causes of these disparities.

Pediatric Ethics Consultation Services.

Although guidelines call for the presence of pediatric ethics consultation services (PECS), their existence in children's hospitals remains unquantified. This study determined the prevalence of PECS in children's hospitals and compared the practice environments of those with versus without PECS. The Children's Hospital Association Annual Benchmark Report survey from 2020 and PECS data were analyzed for the association of PECS with domains of care. Two hundred thirty-one hospitals received survey requests, with 148 submitted and 144 reachable to determine PECS (62% response rate), inclusive of 50 states. Ninety-nine (69%) reported having ethics consultation services. Freestanding children's hospitals (28% of all hospitals) were more likely to report the presence of PECS (P <.001), making up 41% of hospitals with a PECS. The median number of staffed beds was 203 (25th quartile 119, 75th quartile 326) for those with PECS compared with 80 for those without (25th quartile 40, 75th quartile 121). Facilities with palliative care, higher trauma ratio, intensive care, and comprehensive programs were more likely to have PECS. Academic affiliation was associated with PECS presence (P <.001). Settings associated with skilled nursing facilities or long-term care programs were not more likely to have PECS. Hospitals designated as federally qualified health centers (P = .04) and accountable care organizations (P = .001) were more likely to have PECS. Although PECS function as formal means to clarify values and mitigate conflict, one-third of children's hospitals lack PECS. Future research is needed to understand barriers to PECS and improve its presence.

Pediatric Ethics Consultation Services, Scope, and Staffing.

National standards and guidelines call for a mechanism to address ethical concerns and conflicts in children's hospitals. The roles, responsibilities, and reach of pediatric ethics consultation services (PECS) remain unmeasured. The purpose of this study is to quantify staffing, structure, function, scope, training, and funding of PECS. Cross-sectional online survey was shared with an ethics informant at 181 children's hospitals in the United States from March to June 2022. Data were summarized descriptively and with semantic content analyses. One hundred seventeen surveys were received from individual children's hospitals in 45 states and Washington DC (response rate 65%), with 104 qualifying for survey completion. Almost one-quarter of settings received 50 or more pediatric ethics consults in the past 12 months. On average, 7.4 people at each institution have responsibility for completing ethics consults. Estimated full-time equivalent salary support for ethics is on average 0.5 (range 0-3, median 0.25). One-third (33%) of facilities do not offer any salary support for ethics and three-quarters do not have an institutional budget for the ethics program. Clinical staff primarily initiate consults. End-of-life, benefits versus burdens of treatments, and staff moral distress were the most frequently consulted themes. Almost one-quarter (21%) of children's hospitals do not receive any consults from patients or families. The findings from this study reveal wide variation in PECS practices and raise concern about the lack of financial support provided for PECS despite substantial workloads.

Demand and Supply: Association between Pediatric Ethics Consultation Volume and Protected Time for Ethics Work

Background Despite national increase in pediatric ethics consultation volume over the past decade, protected time and resources for healthcare ethics consultancy work has lagged. Methods Correlation study investigating potential associations between ethics consult volume reported by recent national survey of consultants at children’s hospitals and five programmatic domains. Results 104 children’s hospitals in 45 states plus Washington DC were included. There was not a statistically significant association between pediatric ethics consult volume and hospital size, rurality of patient population, or number of consultants. Academically-affiliated children’s hospitals had fewer ethics consults compared to nonacademically affiliated. Association was found between full-time equivalent (FTE) hours and number of ethics consults (p < 0.0001). Spearman rank correlation between ethics consult volume and FTE was 0.5. Conclusions While the results of this study should be interpreted with caution, investment in protected time for ethics consultancy work may translate into increased volume of pediatric ethics consults.