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This paper describes a practice innovation: the addition of formal weekly discussions of patients with prolonged PICU stay to reduce healthcare providers’ moral distress and decrease length of stay for patients with life-threatening illnesses. We evaluated the innovation using a pre/post intervention design measuring provider moral distress and comparing patient outcomes using retrospective historical controls. Physicians and nurses on staff in our pediatric intensive care unit in a quaternary care children's hospital participated in the evaluation. There were 60 patients in the interventional group and 66 patients in the historical control group. We evaluated the impact of weekly meetings (PEACE rounds) to establish goals of care for patients with longer than 10 days length of stay in the ICU for a year. Moral distress was measured intermittently and reported moral distress thermometer (MDT) scores fluctuated. \"Clinical situations\" represented the most frequent contributing factor to moral distress. Post intervention, overall moral distress scores, measured on the moral distress scale revised (MDS-R), were lower for respondents in all categories (non-significant), and on three specific items (significant). Patient outcomes before and after PEACE intervention showed a statistically significant decrease in PRISM indexed LOS (4.94 control vs 3.37 PEACE, p = 0.015), a statistically significant increase in both code status changes DNR (11 % control, 28 % PEACE, p = 0.013), and in-hospital death (9 % control, 25 % PEACE, p = 0.015), with no change in patient 30 or 365 day mortality. The addition of a clinical ethicist and senior intensivist to weekly inter-professional team meetings facilitated difficult conversations regarding realistic goals of care. The study demonstrated that the PEACE intervention had a positive impact on some factors that contribute to moral distress and can shorten PICU length of stay for some patients.

Families and clinicians approaching a child’s death in the paediatric intensive care unit (PICU) frequently encounter questions surrounding medical decision-making at the end of life (EOL), including defining what is in the child’s best interest, finding an optimal balance of benefit over harm, and sometimes addressing potential futility and moral distress. The best interest standard (BIS) is often marshalled by clinicians to help navigate these dilemmas and focuses on a clinician’s primary ethical duty to the paediatric patient. This approach does not consider a clinician’s potential duty to the patient’s family. This paper argues that when a child is dying in the PICU, the physician has a duty to serve both the patient and the family, and that in some circumstances, the duty to serve the family becomes as important as that owed to the child. We detail the limitations of the BIS in paediatric EOL care and propose the relational potential standard as an additional ethical framework to guide our decisions.

Background Working in neonatal intensive care units (NICUs) or pediatric intensive care units (PICUs) entails making difficult decisions about children at the end of their lives that raise significant ethical issues. This review identified the ethical content of the papers containing expert guidelines and recommendations in relation to end-of-life decision-making in NICUs and PICUs, by analyzing ethical positions and ethical principles behind them. Methods Systematic search was limited to the period from 1990 to 2023 and encompassed 6 bibliographic databases (Medline, PubMed, CINAHL, APA PsycINFO, Web of Science Core Collection, and Scopus), grey literature sources and relevant reference lists. The international, national, or institutional papers providing expert guidelines and recommendations comprehensively addressing either withholding/withdrawing of life sustaining treatment, palliative care, and/or intentional life terminating actions in NICUs and PICUs were included in analysis. Also, only papers published in English language were considered. Papers that were not developed by intensive care expert communities and those that were either too narrow (e.g., dealing with specific issues or specific patient groups) or broad (e.g., addressing issues of interest on general and abstract level) were excluded. The search data were gathered and deduplicated, partly by Mendeley software. Titles and abstracts were screened by three independent reviewers, and full-text papers further reviewed and assessed for eligibility. Subsequently, data of interest were extracted, and qualitative analysis was performed. Results Initial search retrieved 6784 papers from bibliographic databases and 363 from other utilized sources. Titles and abstracts from 2827 papers were screened. 17 full texts were further assessed resulting in a total number of 9 papers (6 from bibliographic databases and 3 from other sources) which met the inclusion criteria and were included for analysis. The papers were published from 2001 to 2021. Four papers primarily focus on NICU setting, while five on PICU. A total of 38 ethical positions were identified and were grouped under 5 themes according to the content of the positions, relating to: patients, parents, medical team, decision-making and treatment options. A total of 12 ethical principles were mentioned in the papers. The principle of beneficence emerged as the most prominent one. It was explicitly mentioned in all included papers except one. Conclusions This review has shown that papers containing guidelines and recommendations on end-of-life decision-making in the NICU and PICU promote similar stances. The ethical principle of beneficence is at the core of the decision-making process, and all decisions are made focusing on the child’s best interests.

Background Nurses working in NICU and PICU frequently encounter ethical dilemmas that can erode their moral sensitivity and trigger distress that can jeopardize patient safety, undermine staff well-being, and hinder interprofessional collaboration. Traditional lecture-based ethics education often fails to engage nurses deeply or produce durable improvements in ethical reasoning. The flipped classroom (FC) model, which delivers core content before class and uses face-to-face time for interactive case discussions, may offer a more effective route to strengthening ethical insight and reflective practice in critical care settings. Methods In this randomized controlled trial, 80 NICU and PICU nurses at Afzalipour Hospital in Kerman, Iran, were enrolled by census sampling and randomly assigned (1:1) to an FC intervention group ( n  = 40) or a control group ( n  = 40). Both groups received the hospital’s standard ethics in-service program. The FC group additionally reviewed five digital pre-class modules over 20 days and attended three 2-hour interactive workshops on managing moral distress, building resilience, and heightening moral sensitivity. Outcomes were assessed at baseline, immediately post-intervention, and at two-week follow-up using Corley’s Moral Distress Scale–Revised and Lützén’s Moral Sensitivity Questionnaire. Within-group changes were evaluated with paired t-tests and between-group differences with independent t-tests (α = 0.05). Results Baseline demographic and professional characteristics were similar between groups (all p  > 0.05). The FC group’s mean moral distress score decreased from 70.44 ± 26.35 at baseline to 50.60 ± 36.46 immediately post-intervention ( p  < 0.001) and remained significantly lower at two-week follow-up ( p  < 0.01). Their mean moral sensitivity score increased from 171.37 ± 23.15 to 182.97 ± 18.24 immediately after training ( p  = 0.003) and remained elevated at follow-up ( p  = 0.005). The control group indicated no significant reduction in moral distress ( p  = 0.07) and only a non-sustained rise in moral sensitivity ( p  = 0.20). Conclusions Flipped classroom–based ethics education substantially mitigates moral distress and enhances moral sensitivity among NICU and PICU nurses compared with conventional training. Incorporating FC strategies into critical care nursing curricula may strengthen ethical competence in demanding clinical settings. Trial registration IRCT20220203053920N4 (Registered 03 February 2022).

Whether pediatric dialysis is morally obligatory is an ethical issue. The study's aim was to understand neonatal and pediatric intensive care unit (ICU) nurses' beliefs regarding the ethical use of pediatric dialysis. A single center study was conducted using theoretical and case-based surveys. Sixty-three (63) registered nurses completed at least part of the survey. The most important factors influencing nurses' beliefs on the appropriateness of dialysis were patient quality of life, prognosis, and severity of comorbidities. Nurses with experience vs. nurses without experience caring for patients on dialysis ranked family wishes as more important (p < 0.05) and were more likely to express their beliefs when they disagreed with the decision (p < 0.005). The data suggest that beliefs of nurses vary based on demographic and situational factors. Consideration of these factors may improve care team communication.

ObjectiveIn English paediatric practice, English law requires that parents and clinicians agree the ‘best interests’ of children and, if this is not possible, that the courts decide. Court intervention is rare and the concept of best interests is ambiguous. We report qualitative research exploring how the best interests standard operates in practice, particularly with decisions related to planned non-treatment. We discuss results in the light of accounts of best interests in the medical ethics literature.DesignWe conducted 39 qualitative interviews, exploring decision making in the paediatric intensive care unit, with doctors, nurses, clinical ethics committee members and parents whose children had a range of health outcomes. Interviews were audio-recorded and analysed thematically.ResultsParents and clinicians indicated differences in their approaches to deciding the child’s best interests. These were reconciled when parents responded positively to clinicians’ efforts to help parents agree with the clinicians’ view of the child’s best interests. Notably, protracted disagreements about a child’s best interests in non-treatment decisions were resolved when parents’ views were affected by witnessing their child’s physical deterioration. Negotiation was the norm and clinicians believed avoiding the courts was desirable.ConclusionsSensitivity to the long-term interests of parents of children with life-limiting conditions is defensible but must be exercised proportionately. Current approaches emphasise negotiation but offer few alternatives when decisions are at an impasse. In such situations, the instrumental role played by a child’s deterioration and avoidance of the courts risks giving insufficient weight to the child’s interests. New approaches to decision making are needed.

Religion is an important element of end-of-life care on the paediatric intensive care unit with religious belief providing support for many families and for some staff. However, religious claims used by families to challenge cessation of aggressive therapies considered futile and burdensome by a wide range of medical and lay people can cause considerable problems and be very difficult to resolve. While it is vital to support families in such difficult times, we are increasingly concerned that deeply held belief in religion can lead to children being potentially subjected to burdensome care in expectation of ‘miraculous’ intervention. We reviewed cases involving end-of-life decisions over a 3-year period. In 186 of 203 cases in which withdrawal or limitation of invasive therapy was recommended, agreement was achieved. However, in the 17 remaining cases extended discussions with medical teams and local support mechanisms did not lead to resolution. Of these cases, 11 (65%) involved explicit religious claims that intensive care should not be stopped due to expectation of divine intervention and complete cure together with conviction that overly pessimistic medical predictions were wrong. The distribution of the religions included Protestant, Muslim, Jewish and Roman Catholic groups. Five of the 11 cases were resolved after meeting religious community leaders; one child had intensive care withdrawn following a High Court order, and in the remaining five, all Christian, no resolution was possible due to expressed expectations that a ‘miracle’ would happen.

Law’s processes are likely always to be needed when particularly intractable conflicts arise in relation to the care of a critically ill child like Charlie Gard. Recourse to law has its merits, but it also imposes costs, and the courts’ decisions about the best interests of such children appear to suffer from uncertainty, unpredictability and insufficiency. The insufficiency arises from the courts’ apparent reluctance to enter into the ethical dimensions of such cases. Presuming that such reflection is warranted, this article explores alternatives to the courts, and in particular the merits of specialist ethics support services, which appear to be on the rise in the UK. Such specialist services show promise, as they are less formal and adversarial than the courts and they appear capable of offering expert ethical advice. However, further research is needed into such services – and into generalist ethics support services – in order to gauge whether this is indeed a promising development.

Background: Despite a gradual shift in the focus of medical care among terminally ill patients to a palliative model, studies suggest that many children with life-limiting chronic illnesses continue to die in hospital after prolonged periods of inpatient admission and mechanical ventilation. Objectives: To (1) examine the characteristics and location of death among hospitalised children, (2) investigate yearwise trends in these characteristics and (3) test the hypothesis that professional ethical guidance from the UK Royal College of Paediatrics and Child Health (1997) would lead to significant changes in the characteristics of death among hospitalised children. Methods: Routine administrative data from one large tertiary-level UK children’s hospital was examined over a 7-year period (1997–2004) for children aged 0–18 years. Demographic details, location of deaths, source of admission (within hospital vs external), length of stay and final diagnoses (International Classification of Diseases-10 codes) were studied. Statistical significance was tested by the Kruskal–Wallis analysis of ranks and median test (non-parametric variables), χ2 test (proportions) and Cochran–Armitage test (linear trends). Results: Of the 1127 deaths occurring in hospital over the 7-year period, the majority (57.7%) were among infants. The main diagnoses at death included congenital malformations (22.2%), perinatal diseases (18.1%), cardiovascular disorders (14.9%) and neoplasms (12.4%). Most deaths occurred in an intensive care unit (ICU) environment (85.7%), with a significant increase over the years (80.1% in 1997 to 90.6% in 2004). There was a clear increase in the proportion of admissions from in-hospital among the ICU cohort (14.8% in 1998 to 24.8% in 2004). Infants with congenital malformations and perinatal conditions were more likely to die in an ICU (OR 2.42, 95% CI 1.65 to 3.55), and older children with malignancy outside the ICU (OR 6.5, 95% CI 4.4 to 9.6). Children stayed for a median of 13 days (interquartile range 4.0–23.25 days) on a hospital ward before being admitted to an ICU where they died. Conclusions: A greater proportion of hospitalised children are dying in an ICU environment. Our experience indicates that professional ethical guidance by itself may be inadequate in reversing the trends observed in this study.

Critical illness and treatment modalities change pharmacokinetics and pharmacodynamics of medications used in critically ill children, in addition to age-related changes in drug disposition and effect. Hence, to ensure effective and safe drug therapy, research in this population is urgently needed. However, conducting research in the vulnerable population of the pediatric intensive care unit (PICU) presents with ethical challenges. This article addresses the main ethical issues specific to drug research in these critically ill children and proposes several solutions. The extraordinary environment of the PICU raises specific challenges to the design and conduct of research. The need for proxy consent of parents (or legal guardians) and the stress-inducing physical environment may threaten informed consent. The informed consent process is challenging because emergency research reduces or even eliminates the time to seek consent. Moreover, parental anxiety may impede adequate understanding and generate misconceptions. Alternative forms of consent have been developed taking into account the unpredictable reality of the acute critical care environment. As with any research in children, the burden and risk should be minimized. Recent developments in sample collection and analysis as well as pharmacokinetic analysis should be considered in the design of studies. Despite the difficulties inherent to drug research in critically ill children, methods are available to conduct ethically sound research resulting in relevant and generalizable data. This should motivate the PICU community to commit to drug research to ultimately provide the right drug at the right dose for every individual child.