The Effects of Introducing a Harm Threshold for Medical Treatment Decisions for Children in the Courts of England & Wales: An (Inter)National Case Law Analysis.

The case of Charlie Gard sparked an ongoing public and academic debate whether in court decisions about medical treatment for children in England & Wales the best interests test should be replaced by a harm threshold. However, the literature has scantly considered (1) what the impact of such a replacement would be on future litigation and (2) how a harm threshold should be introduced: for triage or as standard for decision-making. This article directly addresses these gaps, by first analysing reported cases in England & Wales about medical treatment in the context of a S31 order, thus using a harm threshold for triage and second comparing court decisions about medical treatment for children in England & Wales based on the best interest test with Dutch and German case law using a harm threshold. The investigation found that whilst no substantial increase of parental discretion can be expected an introduction of a harm threshold for triage would change litigation. In particular, cases in which harm is limited, currently only heard when there are concerns about parental decision-making, may be denied a court hearing as might cases in which the child has lost their capacity to suffer. Applying a harm threshold for triage in decisions about withholding or withdrawing life-sustaining treatment might lead to a continuation of medical treatment that could be considered futile.

Metaphors and decision making in parental blogs about their children with life-limiting diseases: who's afraid of the war metaphor?

The use of metaphors aids understanding by allowing us to think of complex problems in terms of relatively simple and more concrete information. As such, metaphors shape thought and guide future action. While metaphors are known to play a role in medical treatment decision-making, the effect of particular metaphors is unknown.This paper explores the metaphors West-European parents use for their child suffering from a life-limiting condition by analysing 15 blogs from Dutch, German and English and Welsh parents. The analysis found that all parents use war metaphors to describe their child and their disease. Describing their child in war metaphors, for example, 'fighter', 'hero' or 'trooper' allows parents to express their pride in their child. To describe the familial situation parents use both 'life as a fight' and a 'time as space' metaphor. Time is conceptualised as a space to be filled with positive experiences to allow the child to live as full a life as possible. In medical treatment decisions, parents balance 'fighting the disease' against their child's ability to live a good life. No evidence was found that the use of war metaphors increase a tendency to treat when benefit is unlikely. Instead, parents primarily use war metaphors as a conduit to express their love for their child and to empower them to manage the familial situation.

Parental Ethical Decision Making and Implications for Advance Care Planning: A Systematic Review and Secondary Analysis of Qualitative Literature from England and Wales, Germany, and the Netherlands.

Background: Clinicians and parents are expected to make medical treatment decisions in the child's best interests. To reach their decisions, clinicians typically apply a principled approach outlined by Beauchamp and Childress. How parents make ethical decisions is an under-researched area. A possible model for parental decision making is the Ethics of Care (EoC) theory. Ethical decision making within this framework aims to preserve the caring relationship. What is right or wrong depends on the circumstances at the time. Objective: To identify the parental ethical values and determine whether parental decision making is consistent with EoC, a systematic review and secondary analysis of qualitative research from England and Wales, the Netherlands, and Germany was performed. As part of a larger project investigating conflicts between parents and clinicians about children's medical treatment, the choice of countries was determined by differences in litigation. Methods: Eight databases were searched for articles published between 2010 and 2020 reporting on at least one medical treatment decision made by parents of a child with any life-limiting condition and analyzed using reflexive thematic analysis. Twelve included articles directly addressing advance care planning (ACP) were reanalyzed to investigate whether this specific decision parents are increasingly being asked to make is also consistent with EoC. Results: Forty-three articles were included. Parents use the same 6 ethical values which, consistent with EoC, are mostly in the context of their relationship with the child. All values contributed to the previously identified theme of "being a good parent/person." Analysis of parental decision making in ACP confirmed consistency with EoC. Conclusion: The parental decision-making process is consistent with EoC. That parental decisions aim to maintain the caring relationship and are dependent on the circumstances at the time has implications for parental decision making in ACP and should be reflected in future policies.

Can mediation avoid litigation in conflicts about medical treatment for children? An analysis of previous litigation in England and Wales.

OBJECTIVE: To investigate the reasons why parents disagree with their clinicians in cases reaching the court and to estimate the number of cases in which mediation might have avoided litigation. DESIGN: Analysis of 83 published cases regarding medical treatment decisions for children initiated either by an NHS Trust or Local Authority between 1990 and 1 July 2022. RESULTS: The analysis found that the main areas of contention are different value judgements, different interpretations of observable events such as the health of the child, their quality of life or burden of treatment and relational issues (ie, loss of trust). More than half of the cases are estimated not to have been preventable by mediation because either no conflict existed (n=13) or the parental decision was based on strongly held, mostly faith-based, views unlikely to be open for discussion (n=31). CONCLUSION: The potential of mediation to avoid future litigation may be more limited than hoped for.

Polypharmacy in Children and Young People With Life-limiting Conditions From 2000 to 2015: A Repeated Cross-sectional Study in England.

CONTEXT: Polypharmacy is often appropriate for children with life-limiting conditions but is associated with an increase in hospitalizations and inappropriate prescribing, and can affect the quality of life of children and their families as they manage complex medication schedules. Despite this, little is known about polypharmacy in this population. OBJECTIVE: To describe the prevalence and patterns of polypharmacy in children with a life-limiting condition in a nationally representative cohort in England. METHODS: Observational study of children (age 0-19 years) with a life-limiting condition in a national database from 2000 to 2015. Common definitions of polypharmacy were used to determine polypharmacy prevalence in each year based on unique medications and regular medications. Hierarchical regression analyses were used to explore factors associated with polypharmacy. RESULTS: Data on 15,829 individuals were included. Each year 27%-39% of children were prescribed ≥5 unique medications and 8%-12% were prescribed ≥10. Children with a respiratory (OR 7.6, 95%CI 6.4-9.0), neurological (OR 2.8, 95%CI 2.4-3.2), or metabolic (OR 2.2, 95%CI 1.7-2.8) condition were more likely than those with a congenital condition to experience polypharmacy. Increasing age, being diagnosed with a LLC under one year of age, having >1 life-limiting or chronic condition or living in areas of higher deprivation were also associated with higher prevalence of polypharmacy. CONCLUSION: Children with life-limiting conditions have a high prevalence of polypharmacy and some children are at greater risk than others. More research is needed to understand and address the factors that lead to problematic polypharmacy in this population.

H. pylori infection in childhood chronic immune thrombocytopenic purpura.

Several studies have reported remission of immune thrombocytopenic purpura ( ITP) after eradication of a coexistent Helicobacter pylori infection in adults. Data in children are limited. Here we report the results of a prospective study of Helicobacter pylori determination and eradication in children with chronic ITP in the Netherlands.

A genome-wide association study identifies susceptibility loci for Wilms tumor.

Wilms tumor is the most common renal malignancy of childhood. To identify common variants that confer susceptibility to Wilms tumor, we conducted a genome-wide association study in 757 individuals with Wilms tumor (cases) and 1,879 controls. We evaluated ten SNPs in regions significantly associated at P < 5 × 10(-5) in two independent replication series from the UK (769 cases and 2,814 controls) and the United States (719 cases and 1,037 controls). We identified clear significant associations at 2p24 (rs3755132, P = 1.03 × 10(-14); rs807624, P = 1.32 × 10(-14)) and 11q14 (rs790356, P = 4.25 × 10(-15)). Both regions contain genes that are plausibly related to Wilms tumorigenesis. We also identified candidate association signals at 5q14, 22q12 and Xp22.

The use of PET/CT in evaluating disease recurrence following Ewing's tumour resection of the chest wall.

Limitations exist with the use of computer tomography (CT) in evaluating tumour recurrence at the site of previous chest wall reconstruction due to poor differentiation between inflammatory change and tumour recurrence. This case highlights the value of combined positron emission tomography and CT, which generates detailed anatomical and metabolic profiles in this diagnostic dilemma.