Barriers to initiating and implementing palliative and end-of-life care for children with life-limiting conditions: a mixed-methods study in a UK children's hospital.

BACKGROUND: To ensure that children with life-limiting conditions (LLC) and their families have access to a palliative care pathway from diagnosis to death and bereavement, a better understanding of the challenges experienced by paediatric healthcare professionals caring for children with LLC is needed. AIM: To explore the barriers paediatricians face in initiating and implementing palliative and end-of-life care for children with LLC. METHODS: Due to the challenges of COVID-19, the study was performed as a service evaluation using semi-structured interviews and an online questionnaire with consultant paediatricians in general paediatrics, community paediatrics and multiple subspecialties at a UK children's hospital between December 2020 and August 2021. Twelve interviews and 18 online questionnaires were completed. Interviews were analysed using reflexive thematic analysis, and descriptive statistics were used for questionnaire responses. RESULTS: Recurring themes from both data sets were further analysed and five themes were developed: (1) Problems with the leadership of palliative and end-of-life care; (2) Problems with preparing advanced care plans; (3) Lack of training in paediatric palliative care and advanced communication; (4) Problems communicating with families; and (5) Lack of recognition of children with LLC and high-profile cases. CONCLUSIONS: We found that the barriers to effective palliative and end-of-life planning are multifaceted and pervasive, so healthcare professionals must establish clearer pathways to overcome them. Approaches suggested included (1) discussing palliative care for children with LLC at professional encounters, for example, departmental meetings, peer-review meetings and morbidity and mortality meetings and (2) advanced communication training in palliative and end-of-life care.

European Academy of Paediatrics statement on the clinical management of children and adolescents with gender dysphoria.

Gender issues have become a polarised and political subject in modern paediatrics and indeed, in broader society. These include the management of infants with disorders of sex development and transgender sports participation, but especially recently regarding the management of gender dysphoria. The European Academy of Paediatrics (EAP) acknowledges that there are deeply held beliefs about this issue based on conscience and social norms. Several European countries, led by the UK, have recently reviewed the management of gender dysphoria in children and young people. Recognising the need for far more research into treatments such as pubertal suppression and cross-sex hormones in children and young people, we review the current ethical and legal dilemmas facing children with gender dysphoria, their families and the clinical teams caring for them. We suggest an approach that maintains the child's right to an open future whilst acknowledging that the individual child is the crucial person affected by decisions made and must receive appropriate support in decision-making and care for any associated mental health or psychological issues. Noting that national approaches to this vary and are in flux, the EAP advocates a child-centred individual rights-based analytical approach.

ADVANCING THE UNDERSTANDING OF CLINICAL SEPSIS USING GENE EXPRESSION-DRIVEN MACHINE LEARNING TO IMPROVE PATIENT OUTCOMES.

ABSTRACT: Sepsis remains a major challenge that necessitates improved approaches to enhance patient outcomes. This study explored the potential of machine learning (ML) techniques to bridge the gap between clinical data and gene expression information to better predict and understand sepsis. We discuss the application of ML algorithms, including neural networks, deep learning, and ensemble methods, to address key evidence gaps and overcome the challenges in sepsis research. The lack of a clear definition of sepsis is highlighted as a major hurdle, but ML models offer a workaround by focusing on endpoint prediction. We emphasize the significance of gene transcript information and its use in ML models to provide insights into sepsis pathophysiology and biomarker identification. Temporal analysis and integration of gene expression data further enhance the accuracy and predictive capabilities of ML models for sepsis. Although challenges such as interpretability and bias exist, ML research offers exciting prospects for addressing critical clinical problems, improving sepsis management, and advancing precision medicine approaches. Collaborative efforts between clinicians and data scientists are essential for the successful implementation and translation of ML models into clinical practice. Machine learning has the potential to revolutionize our understanding of sepsis and significantly improve patient outcomes. Further research and collaboration between clinicians and data scientists are needed to fully understand the potential of ML in sepsis management.

How should we decide how to treat the child: harm versus best interests in cases of disagreement.

Where parents seek treatment for their young child that healthcare professionals cannot agree to, the High Court can determine what is in the child's best interests. Some activists and academics seek change to impose threshold criteria that would bolster the decision-making rights of parents and reduce deference to clinicians and the courts. We defend the best interests standard against arguments that a higher threshold of 'significant harm' should apply. We do so from ethical, legal, and clinical perspectives. The matter is of significant moral and practical importance, especially in light of the divergence of academic opinion, the burgeoning number of cases coming before the courts and recent case law and statutory attempts to effect change. We begin by disputing ethical claims that a significant harm threshold is preferable to the best interests standard, and then we set out jurisprudential and practical arguments that demonstrate the imprudence of a significant harm threshold and defend the established yardstick of best interests.

Living bioethics, theories and children's consent to heart surgery.

Background: This analysis is about practical living bioethics and how law, ethics and sociology understand and respect children's consent to, or refusal of, elective heart surgery. Analysis of underlying theories and influences will contrast legalistic bioethics with living bioethics. In-depth philosophical analysis compares social science traditions of positivism, interpretivism, critical theory and functionalism and applies them to bioethics and childhood, to examine how living bioethics may be encouraged or discouraged. Illustrative examples are drawn from research interviews and observations in two London paediatric cardiac units. This paper is one of a series on how the multidisciplinary cardiac team members all contribute to the complex mosaic of care when preparing and supporting families' informed consent to surgery. Results: The living bioethics of justice, care and respect for children and their consent depends on theories and practices, contexts and relationships. These can all be undermined by unseen influences: the history of adult-centric ethics; developmental psychology theories; legal and financial pressures that require consent to be defined as an adult contract; management systems and daily routines in healthcare that can intimidate families and staff; social inequalities. Mainstream theories in the clinical ethics literature markedly differ from the living bioethics in clinical practices. Conclusion: We aim to contribute to raising standards of respectful paediatric bioethics and to showing the relevance of virtue and feminist ethics, childhood studies and children's rights.

Shared decision-making experiences in child long-term ventilation: a systematic review.

INTRODUCTION: Recent decades have seen an increase in children receiving long-term ventilation. To ensure that long-term ventilation decisions incorporate the perspectives of stakeholders, it is vital that empirical evidence is gathered to substantiate frameworks and guidance on shared decision-making for long-term ventilation. This systematic review and qualitative evidence synthesis aimed to clarify what shared decision-making constitutes in relation to long-term ventilation initiation for children and young people (<21 years). METHODS: A systematic review of qualitative research was undertaken. Searches were conducted in MEDLINE, Embase, CINAHL, PsycINFO and Web of Science. RESULTS: Findings from 13 studies were included representative of 363 caregivers and 143 healthcare professional experiences. Components that support shared decision-making included acknowledging the unique positionality of caregivers and ensuring caregivers were informed about the implications of long-term ventilation. Beneficial qualities of engagement between stakeholders included honest, clear and timely dialogue using lay, tactful and sensitive language. CONCLUSION: Our findings clarify components and approaches supportive of shared decision-making in discussions about long-term ventilation. This review therefore provides a valuable resource to implement shared decision-making practices in the context of long-term ventilation decisions for children and young people.

A TRANSCRIPTOMIC APPRECIATION OF CHILDHOOD MENINGOCOCCAL AND POLYMICROBIAL SEPSIS FROM A PRO-INFLAMMATORY AND TRAJECTORIAL PERSPECTIVE, A ROLE FOR VASCULAR ENDOTHELIAL GROWTH FACTOR A AND B MODULATION?

ABSTRACT: This study investigated the temporal dynamics of childhood sepsis by analyzing gene expression changes associated with proinflammatory processes. Five datasets, including four meningococcal sepsis shock (MSS) datasets (two temporal and two longitudinal) and one polymicrobial sepsis dataset, were selected to track temporal changes in gene expression. Hierarchical clustering revealed three temporal phases: early, intermediate, and late, providing a framework for understanding sepsis progression. Principal component analysis supported the identification of gene expression trajectories. Differential gene analysis highlighted consistent upregulation of vascular endothelial growth factor A (VEGF-A) and nuclear factor κB1 (NFKB1), genes involved in inflammation, across the sepsis datasets. NFKB1 gene expression also showed temporal changes in the MSS datasets. In the postmortem dataset comparing MSS cases to controls, VEGF-A was upregulated and VEGF-B downregulated. Renal tissue exhibited higher VEGF-A expression compared with other tissues. Similar VEGF-A upregulation and VEGF-B downregulation patterns were observed in the cross-sectional MSS datasets and the polymicrobial sepsis dataset. Hexagonal plots confirmed VEGF-R (VEGF receptor)-VEGF-R2 signaling pathway enrichment in the MSS cross-sectional studies. The polymicrobial sepsis dataset also showed enrichment of the VEGF pathway in septic shock day 3 and sepsis day 3 samples compared with controls. These findings provide unique insights into the dynamic nature of sepsis from a transcriptomic perspective and suggest potential implications for biomarker development. Future research should focus on larger-scale temporal transcriptomic studies with appropriate control groups and validate the identified gene combination as a potential biomarker panel for sepsis.

Pediatric basic course goes virtual: transition from face to face to hybrid learning in pediatric critical care.

BACKGROUND: To explore the impact of the transition from a traditional face-to-face course delivering essential contents in pediatric critical care to a hybrid format consisting of an online pre-course self-directed learning, an online facilitated discussion, and a face-to-face edition. METHODS: Attendees and faculty were surveyed after the face-to-face course and the hybrid version to evaluate the effectiveness and satisfaction of participants with the course. RESULTS: Fifty-seven students attended multiple formats of the Pediatric Basic Course between January 2020 and October 2021 in Udine, Italy. We compared course evaluation data from the 29 attendees of the face-to-face course with the 28 of the hybrid edition. Data collected included participant demographics, participant self-assessed pre and post-course ''confidence'' with a range of pediatric intensive care-related activities, and their satisfaction with elements of the course. There were no statistical differences in participant demographics or pre and post-course confidence scores. Overall satisfaction with the face-to-face course was marginally higher, 4.59 vs. 4.25/5, but did not reach significance. Pre-recorded lectures which could be viewed several times, were highlighted as a positive for the hybrid course. Residents found no significant differences comparing the two courses in rating the lectures and the technical skills stations. Hybrid course facilities (online platform and uploaded material) were reported to be clear, accessible, and valuable by 87% of attendees. After six months, they still find the course relevant to their clinical practice (75%). Candidates considered the respiratory failure and mechanical ventilation modules the most relevant modules. CONCLUSIONS: The Pediatric Basic Course helps residents strengthen their learning and identify areas to improve their knowledge. Both face-to-face and hybrid model versions of the course improved attendees' knowledge and perceived confidence in managing the critically ill child.

What is the impact of high-profile end-of-life disputes on paediatric intensive care trainees?

INTRODUCTION: This study explores UK paediatric intensive care (PIC) trainees' thoughts and feelings about high-profile end-of-life cases recently featured in the press and social media and the impact on their career intentions. METHODS: Semi-structured interviews were conducted with nine PIC-GRID trainees (April to August 2021). Interview transcripts were analysed using thematic analysis. RESULTS: Six main themes were identified: (1) All participants wished to do what was best for the child, feeling conflicted if this meant disagreeing with parents. (2) Interviewees felt unprepared and expressed deep concern about the effect of high-profile cases on their future career; all had reconsidered their training in PIC due to concerns about future high-profile end-of-life disputes, despite this all were still in training. (3) Specific training on the ethical and legal nuances of such cases is required, alongside targeted communication skills. (4).All cases are unique. (5) All had purposefully minimised their social media presence. (6) Working in a supportive environment is crucial, underscoring the importance of clear and unified team communication. CONCLUSION: UK PIC trainees feel unprepared and anxious about future high-profile cases. A parallel can be drawn to child protection improvements following significant educational investment after government reports into preventable child abuse deaths. Models for supporting trainees and establishing formal PIC training are required to improve trainees' confidence and skills in managing high-profile cases. Further research with other professional groups, the families involved and other stakeholders would provide a more rounded picture.

Involving parents in paediatric clinical ethics committee deliberations: a current controversy.

In cases where the best interests of the child are disputed or finely balanced, Clinical Ethics Committees (CECs) can provide a valuable source of advice to clinicians and trusts on the pertinent ethical dimensions. Recent judicial cases have criticised the lack of formalised guidance and inconsistency in the involvement of parents in CEC deliberations. In Manchester University NHS FT v Verden [2022], Arbuthnot J set out important procedural guidance as to how parental involvement in CEC deliberations might be managed. She also confirmed substantive guidance on the role of parental views in determining the child's best interests. We agree that it is good practice to ensure that the patient voice is heard in ethics processes, but how that is achieved is controversial. Surely it is best that what matters most to a patient and their family, whether facts or values, is conveyed directly to those considering the moral issues involved, rather than via a prism of another party. The approach suggested in the Verden case has much in common with the process used by our CEC. In this article, we commend Arbuthnot J's approach, provide an example of its effective operation and consider what it might mean for ethics processes.

Living bioethics, clinical ethics committees and children's consent to heart surgery.

This discussion paper considers how seldom recognised theories influence clinical ethics committees. A companion paper examined four major theories in social science: positivism, interpretivism, critical theory and functionalism, which can encourage legalistic ethics theories or practical living bioethics, which aims for theory-practice congruence. This paper develops the legalistic or living bioethics themes by relating the four theories to clinical ethics committee members' reported aims and practices and approaches towards efficiency, power, intimidation, justice, equality and children's interests and rights. Different approaches to framing ethical questions are also considered. Being aware of the four theories' influence can help when seeking to understand and possibly change clinical ethics committee routines. The paper is not a research report but is informed by a recent study in two London paediatric cardiac units. Forty-five practitioners and related experts were interviewed, including eight members of ethics committees, about the work of informing, preparing and supporting families during the extended process of consent to children's elective heart surgery. The mosaic of multidisciplinary teamwork is reported in a series of papers about each profession, including this one on bioethics and law and clinical ethics committees' influence on clinical practice. The qualitative social research was funded by the British Heart Foundation, in order that more may be known about the perioperative views and needs of all concerned. Questions included how disputes can be avoided, how high ethical standards and respectful cooperation between staff and families can be encouraged, and how minors' consent or refusal may be respected, with the support of clinical ethics committees.

Clinical ethics support services in paediatric practice: protocol for a mixed studies systematic review on structures, interventions and outcomes.

INTRODUCTION: Clinical ethics support services (CESS) have been developing worldwide with growing interest in evaluating their quality. Paediatric-specific CESSs (p-CESS) have received little attention, and evidence from adult services might not be generalisable. Evidence on service models and practices is crucial to inform further research and debate on quality evaluation and minimum standards for p-CESSs. We aim to systematically identify, appraise and synthesise evidence for p-CESS structures, processes and outcomes. METHODS AND ANALYSIS: We will conduct a mixed-studies systematic review including peer-reviewed empirical studies published in English or Spanish language providing data on the evaluation and/or impact on any aspect of p-CESS. We will search seven electronic databases: MEDLINE, Philosopher's Index, EMBASE, PsycINFO, LILACS, Web of Science and CINHAL, without filters applied. Search terms will be related to "clinical ethics support" AND "paediatrics" AND "structure/process/outcome". Reference and citation list of included studies will be handsearched. A 10% random sample of retrieved titles/abstracts and all full texts will be independently dual-screened. We will conduct narrative and thematic synthesis for quantitative and qualitative data, respectively, following sequential explanatory synthesis guided by Donabedian's framework of structure, process and outcomes. Quality will be assessed using the Mixed-Methods Appraisal Tool (2018). The review will be reported using the adapted Preferred Reporting Items for Systematic Reviews and Meta-Analyses for reporting systematic reviews of qualitative and quantitative evidence template. Stakeholders will be involved twice in the review process; prior to data extraction and synthesis and after preliminary results. ETHICS AND DISSEMINATION: As a systematic review of published data, no ethical approval is necessary. Results will be published in a relevant academic peer-reviewed journal. PROSPERO REGISTRATION NUMBER: CRD42021280978.

Children's informed signified and voluntary consent to heart surgery: Professionals' practical perspectives.

BACKGROUND: The law and literature about children's consent generally assume that patients aged under-18 cannot consent until around 12 years, and cannot refuse recommended surgery. Children deemed pre-competent do not have automatic rights to information or to protection from unwanted interventions. However, the observed practitioners tend to inform young children s, respect their consent or refusal, and help them to "want" to have the surgery. Refusal of heart transplantation by 6-year-olds is accepted. RESEARCH QUESTION: What are possible reasons to explain the differences between theories and practices about the ages when children begin to be informed about elective heart surgery, and when their consent or refusal begins to be respected? RESEARCH DESIGN, PARTICIPANTS AND CONTEXT: Research methods included reviews of related healthcare, law and ethics literature; observations and conversations with staff and families in two London hospitals; audio-recorded semi-structured interviews with a purposive sample of 45 healthcare professionals and related experts; interviews and a survey with parents and children aged 6- to 15-years having elective surgery (not reported in this paper); meetings with an interdisciplinary advisory group; thematic analysis of qualitative data and co-authorship of papers with participants. ETHICAL CONSIDERATIONS: Approval was granted by four research ethics committees/authorities. All interviewees gave their informed written consent. FINDINGS: Interviewees explained their views and experiences about children's ages of competence to understand and consent or refuse, analysed by their differing emphases on informed, signified or voluntary consent. DISCUSSION: Differing views about children's competence to understand and consent are associated with emphases on consent as an intellectual, practical and/or emotional process. Conclusion: Greater respect for children's practical signified, emotional voluntary and intellectual informed consent can increase respectful understanding of children's consent. Nurses play a vital part in children's practitioner-patient relationships and physical care and therefore in all three elements of consent.

Ethical responsibilities of European children's teams facing the resurgent COVID-19 pandemic.

The COrona VIrus Disease 2019 (COVID-19) pandemic is posing an unprecedented challenge to healthcare systems around the globe. Europe has been struggling for 1 year now, and despite some encouraging progress (above all, the beginning of vaccination), the second wave is ongoing. Even though children are less affected than adults, the COVID-19 pandemic-and in particular the measures to counter it-is having a considerable impact on the paediatric healthcare setting. It is, therefore, the duty of paediatric teams in Europe to prepare for the challenges ahead. We wish to contribute to this necessary preparedness in two ways: firstly, by assessing the direct and indirect impact of the pandemic on children and on the paediatric setting; secondly, and more importantly, by identifying the various responsibilities of paediatric healthcare professionals, in light of established ethical principles. Only abiding by these responsibilities will it be possible to ensure that ill children and their families are properly supported even in these difficult times and to grant that decisions about children's healthcare remain morally justified and lawful. What is Known: • The COVID-19 outbreak is posing an unprecedented challenge to healthcare systems around the globe • Despite the children are less affected than adults, the COVID-19 pandemic is having a huge impact also on paediatric setting What is New: • The COVID-19 pandemic lays out specific responsibilities of paediatric professionals towards our pa-tients, society and ourselves • The paediatric teams in Europe should assess the direct and indirect impact of the pandemic on the chil-dren and on the paediatric settings, ensuring consistency between centres and across regions in Europe.

Ethical advice in paediatric care.

The need for local ethics advice during the COVID-19 pandemic has put a spotlight on clinical ethics committees (CECs) and services. In this review, we focus on paediatric CECs that raise both generic questions and specific issues. In doing this, we acknowledge the broader roles of education, research and staff support some bioethics teams have developed but focus on the main areas of clinical ethics support to clinical teams. We raise 12 questions about the role, remit and responsibilities of CECs, provide preliminary answers to these and set out the next steps for the development of ethics support both in paediatric practice and more generally.

COVID-19, children, clinical trials and compassion: The ethical case for using innovative or compassionate treatments.

AIM: Safe, effective SARS-CoV-2 treatment has not yet been determined, though some drugs have favourable mortality and morbidity benefits in specific situations. No treatments have been explicitly tested in children, who are, therefore, once again therapeutic orphans. METHOD: We echo calls to enrol patients, including children, into trials but those children recruited to date have largely been additions to adult studies. Few were recruited during the initial pandemic despite the emergence of PIMS-TS/MIS-C, which surely demands paediatric-specific research. RESULT: Must children be proscribed treatments effective in adults until child-specific data emerges, even in a pandemic? Will appropriately powered dedicated trials ever determine specific child-COVID-19 treatment pathways? Is the protracted time frame to assemble such data acceptable to children with severe COVID-19 today? Such factors are relevant in considering whether children should have access to compassionate, innovative, pandemic-disease treatment. CONCLUSION: We argue that children should be permitted, indeed have a right, to access innovative treatments early in any future pandemic, following an individual best interests consideration. This will remain the case until formal studies powered to determine children's optimal treatment commence, when the moral duty switches to ensuring children are enrolled, with any preceding innovative-use data made available to researchers.

Use of home parenteral nutrition in severely neurologically impaired children.

OBJECTIVE: To review the outcome of children with severe neurological impairment (NI) and intestinal failure (IF) referred to our specialist multidisciplinary IF rehabilitation service and to discuss implications. DESIGN: Case report series, descriptive analysis. SETTING: IF rehabilitation programme at a tertiary children's hospital in the UK. PATIENTS: Children with severe NI referred to our IF rehabilitation programme from 2009 to 2019. MAIN OUTCOME MEASURES: Demographic and social data, diagnosis, clinical condition, use of home parenteral nutrition (HPN), complications, ethics review outcome and advance care plans. RESULTS: Six patients with severe NI were referred to our IF rehabilitation service. Consent for publication was obtained from five families. After thorough medical review and clinical ethics committee assessment, three children started HPN, one had intravenous fluids in addition to enteral feed as tolerated and one intravenous fluids only. The HPN children survived 3-7.08 years (median 4.42 years) on treatment. Objective gastrointestinal signs, for example, bleeding improved without excessive HPN-related complications. Symptomatic improvement was less clear. Analgesia was reduced in three of the five children. All cases had detailed symptom management and advance care plans regularly updated. CONCLUSIONS: HPN can play a role in relieving gastrointestinal signs/symptoms in children with severe NI and IF. HPN can be conceptualised as part of good palliative care if judged to be in the child's best interests. However, given its risks and that HPN has the potential to become inappropriately life-sustaining, a thorough ethics review and evaluation should be performed before it is initiated, withheld or withdrawn in children with severe NI.