Purpose This systematic review aims to identify factors that influence parents’ decisions regarding pediatric diagnostic and predictive genetic testing (DT/PT). Factors are integrated into a conceptual model of decision-making. Implications for genetic counseling, research, and ethics are derived. Methods PubMed, PsychInfo, WebofScience and references of related reviews were searched for original publications between 2000 and 2023. Extracted factors were categorized into an existing model. Results Of 5843 publications, 56 met inclusion criteria. The included studies differentiate between DT, traditional, and expanded (...) PT and describe factors impacting parental decisions on both to have the child genetically tested and to be informed about additional findings. Factors included: 1. benefits/hopes, 2. worries/concerns, 3. values and beliefs, 4. individual circumstances, and 5. emotional states. Conclusion Our work extends an existing empirical decision model of family decisions about genome sequencing to genetic testing in pediatrics in general, adding the categories “individual circumstances” and “emotional states”. The factors can be further integrated into the Health Belief Model; the importance of emotional states is reflected in dual-process theories, such as Fuzzy Trace Theory. Research is required on emotional states, differences between DT and PT, parents’ decisions about result disclosure, and dyadic variables as decision-making predictors. (shrink)

In this article, I sort through some of the confusion surrounding what constitutes the controversial notion of a “good death” for children. I distinguish, first, between metaphysical and practical disagreements about the notion of a good death, and, second, between accounts of a good death that minimally and maximally promote the dying child’s interests. I propose a narrowed account of the dying child’s interests, because they differ from the interests of non-dying children. Importantly, this account illustrates how disagreements at the (...) end of a child’s life are sometimes the result of a shift from a future to a present-oriented understanding of the child’s interests on the part of some stakeholders but not others, and sometimes the result of a values-based disagreement about how different interests should be weighted. This brings into sharper focus the questions of for whom, and in what way, a child’s death might be considered good. (shrink)

Debates on morally acceptable and lawful end-of-life practices in pediatrics were reignited by the recent amendment in Belgian law to allow euthanasia for minors of any age who meet the criteria for capacity. Euthanasia and its legalization in pediatrics are often opposed based on the availability of aggressive palliative sedation. For terminally ill patients, this type of sedation is often identified as continuous and deep sedation until death. We demonstrate that this reasoning is based on flawed assumptions: CDS (...) is a morally preferable alternative to euthanasia; CDS can meet the same patient needs as euthanasia; children lack the capacity and experience to make EOL decisions; unlike euthanasia, CDS does not raise capacity issues. Our aim is not to reject CDS as a valid option at the EOL, nor to offer a clear-cut defense of euthanasia for minors, but to emphasize the ethical issues with both practices. (shrink)

The first regulations established for medical research involving children were intended to protect children from such research (like the Nuremberg Code).

Coronavirus disease 2019 can lead to respiratory failure. Some patients require extracorporeal membrane oxygenation support. During the current pandemic, health care resources in some cities have been overwhelmed, and doctors have faced complex decisions about resource allocation. We present a case in which a pediatric hospital caring for both children and adults seeks to establish guidelines for the use of extracorporeal membrane oxygenation if there are not enough resources to treat every patient. Experts in critical care, end-of-life care, bioethics, and (...) health policy discuss if age should guide rationing decisions. (shrink)

We begin this commentary with a brief analysis of “Making Medical Decisions for Children with Profound Cognitive Disabilities: Pluralism and the Best Interest Standard,” by Pierce Randall, and “A Life Worth Sustaining? Bestowed Worth and Pediatric Care,” by Daniel T. Kim and Xiang Yu, in the same issue of the Hastings Center Report. These two articles examine decision-making for children with profound cognitive disabilities and critique the relational potential standard found in pediatric ethics. We agree with the authors that the (...) relational potential standard risks using children as a means to other people's ends. We also raise two additional concerns: the standard is incongruent with parents’ self-descriptions, and it neglects the concept of goodness, which we take to be the fundamental concern of pediatric ethical analysis. We close with a brief discussion of goodness and consider how goodness might serve as the lodestar of pediatric ethics. (shrink)

As robots leave the lab and are deployed in hospital or other healthcare settings, the community of users may become overreliant on and overtrust such technology. Thus, there is a pressing need to examine the tendency to overtrust and develop strategies to mitigate the risk to children, parents, and healthcare providers that could occur due to an overreliance on pediatric robotics. To overcome this challenge, we seek to consider the broad range of ethical issues related to the use of robots (...) in pediatric healthcare. This chapter provides an overview of the current state of the art in pediatric robotics, describes relevant ethical issues, and examines the role that overtrust plays in these scenarios. We conclude with suggested strategies to mitigate the relevant risks and describe a framework for the future deployment of robots in the pediatric domain. (shrink)

Background: Pediatric nurses experience ethically difficult situations in their everyday work. Several studies have been conducted to reveal ethical issues among pediatric nurses; we do not think their ethical difficulties have been explored sufficiently from their own perspective. Objectives: This study aimed to explore the ethical difficulties faced by pediatric nurses during bedside care for hospitalized children. Methods: A phenomenological approach was used to collect and analyze interview data from 14 female pediatric nurses in South Korea. Ethical considerations: Ethical review (...) was obtained from an ethics committee. The participants were informed about the aim of the study, and voluntary participation, anonymous response, and confidentiality were explained to them. Findings: Three themes emerged from the analysis: ethical numbness in a task-oriented context, negative feelings toward family caregivers, and difficulty in expressing oneself in an authoritative climate. Conclusion and implications: We need to develop strategies to manage ethical difficulties at an institutional level. Furthermore, it is important that pediatric nurses have the opportunity to communicate with fellow nurses and other medical staff regarding ethical difficulties. In addition, cultivation of pediatric nurses’ moral, ethical, and philosophical thinking patterns requires the immediate provision of continuous education in nursing ethics at the site of clinical nursing, time to discuss ethical difficulties, and other supportive measures. Findings indicated that, to provide high-quality patient-centered care, we should enhance nurses’ ethical sensitivity and autonomy and improve the ethical climate in hospitals. (shrink)

With a view to addressing the moral concerns about the use of donor siblings, the Policy Statement of the American Academy of Pediatrics - Children as Hematopoietic Stem Cell Donors (the Policy) has laid out the criteria upon which tissue harvest from a minor would be permissible.

More than 20 years ago, the pioneering pediatric ethicist William Bartholome wrote a fiery letter to the editor of this journal because he thought a recently published statement on pediatric assent, from the Committee on Bioethics of the American Academy of Pediatrics (AAP), showed insufficient respect for children. That AAP statement, like its 2016 update, asserts that pediatric assent should be solicited only when a child’s dissent will be honored. Bartholome objected that pediatricians should always solicit children’s assent and (...) that they should acknowledge and apologize when they treat children over their objections even when they must do so to promote children’s best interests. We think Bartholome was right. In this brief commentary, we elaborate on his perspective about the moral value of pediatric assent, and we suggest improvements to the corresponding clinical guidance. (shrink)

We critically evaluate arguments in a recent Journal of Law, Medicine & Ethics article by Svoboda, Adler, and Van Howe disputing the 2012 affirmative infant male circumcision policy recommendations of the American Academy of Pediatrics. We provide detailed evidence in explaining why the extensive claims by these opponents are not supported by the current strong scientific evidence. We furthermore show why their legal and ethical arguments are contradicted by a reasonable interpretation of current U.S. and international law and ethics. (...) After all considerations are taken into account it would be logical to conclude that failure to recommend male circumcision early in infancy may be viewed as akin to failure to recommend childhood vaccination to parents. In each case, parental consent is required and the intervention is not compulsory. Our evaluation leads us to dismiss the arguments by Svoboda et al. Instead, based on the evidence, infant male circumcision is both ethical and lawful. (shrink)

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 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 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, were lower for respondents in all categories, and on three specific items. Patient outcomes before and after PEACE intervention showed a statistically significant decrease in PRISM indexed LOS, a statistically significant increase in both code status changes DNR, and in-hospital death, 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. (shrink)

Accepted standards of parental decisional autonomy and child best interests do not address adequately the complex moral problems involved in the care of critically ill children. A growing body of moral discourse is calling for the recognition of `tragedy' in selected human problems. A tragic dilemma is an irresolvable dilemma with forced terrible alternatives, where even the virtuous agent inescapably emerges with `dirty hands'. The shift in moral framework described here recognizes that the form of conduct called for by tragic (...) dilemmas is the practice of phronesis. The phronetic agent has acquired a capacity to discern good agency in tragic circumstances. This discernment is practiced through the artful creation of moral narratives: stories that convey that which is morally meaningful in a particular situation; that is, stories that are `meaning making'. The phronetic agent addresses tragic dilemmas involving children as a narrator of contextualized temporal embodied human (counter)stories. (shrink)

This article will explore pediatric consent through the analysis of a clinical case study using the principles of biomedical ethics approach. Application of the principles of autonomy, nonmaleficence, beneficence, and justice will be dissected in order to attempt to establish resolution of the ethical dilemma. The main conflict in this case study deals with whether the wishes of an adolescent for end-of-life care should be followed or should the desire of his parents outweigh this request. In terminal cancer, the hope (...) of early palliative care and dignity in dying serve as priorities in therapy. Application of the moral principles to both sides of the dilemma aided in providing an objective resolution to uphold pediatric consent. (shrink)

Background Nudging is a behavioral economics concept that describes subtle influences on decisions without restricting options or altering incentives. Though commonly studied in public health, the ethical implications in pediatric critical care are underexplored. This study investigates pediatric intensivists’ perspectives on the ethical permissibility of three nudging techniques—framing, saliency, and default.Methods This is a multi-center survey of pediatric intensivists in which a sample of physicians were presented with 4 clinical scenarios representing framing, saliency, and default nudges. Responses about ethical permissibility (...) for each scenario were assessed via Likert Scale and free text. Physician and institutional demographics were also collected. Data was collected in REDCap and analyzed using descriptive statistics for demographic data and scenario responses, with median and interquartile ranges (IQR) reported for Likert scale variables. Comparative and correlational analyses evaluated relationships between ethical permissibility, participant characteristic, and responses to nudging techniques across the scenarios.Results 402 surveys were distributed with 132 (33%) completed. Results show a wide range in ethical permissibility of nudging techniques with the widest variability in the application of saliency. An equal number of physicians found negative framing to be “not at all” ethically permissible as “extremely” ethically permissible. Negative saliency showed a statistically significant positive correlation with how often the physician uses the technique, and how much that physician believes saliency affects the family’s choice. There was also case-dependent variation in ethical permissibility with negative saliency found to be more ethically permissible in severe traumatic brain injury and positive saliency viewed as more ethically permissible when considering tracheostomy. Qualitatively, variable responses were given for each technique. Intensivists reported a wide range of use of nudging techniques.Conclusions Our study suggests there is wide variability in nudging utilization and perceived ethical permissibility. The use of framing, saliency, and default communication techniques is nuanced and further understanding of choice architecture is essential to understand how physicians can optimally engage in shared decision-making with families. (shrink)

Pediatric research without the potential for clinical benefit is vital to improving pediatric medical care. This research also raises ethical concern and is regarded by courts and commentators as unethical. While at least 10 justifications have been proposed in response, all have fundamental limitations. This article describes and defends a new justification based on the fact that enrollment in clinical research offers children the opportunity to contribute to a valuable project. Contributing as children to valuable projects can benefit individuals in (...) two ways. First, individuals may come to ?embrace? the contributions they made as children. Second, contributing to valuable projects can lead to a better overall life. Because these potential benefits can outweigh small research risks, they provide a justification for pediatric research without the potential for clinical benefit, when it poses low risks and has the potential to benefit others in important ways. (shrink)

This letter responds to the Other Voices commentaries “Troubling Trends in Health Misinformation Related to Gender-Affirming Care,” by Stef M. Shuster and Meredithe McNamara; “Values and Evidence in Gender-Affirming Care,” by Os Keyes and Elizabeth Dietz; “Breaking Binaries: The Critical Need for Feminist Bioethics in Pediatric Gender-Affirming Care,” by Lisa Campo-Engelstein, Grayson Jackson, and Jacob Moses; and “Minors Lack the Autonomy to Consent to Gender-Affirming Care: Best Interests Must Be Primary,” by John C. Bester, in the May-June 2024 issue of (...) the Hastings Center Report. (shrink)

Background This study assesses how pediatric assent is conceptualized and justified within the therapeutic context. Pediatric ethicists generally agree that children should participate in medical care decisions in developmentally appropriate ways. Much attention has been paid to pediatric assent for research participation, but ambiguities persist in how assent is conceptualized and operationalized in the therapeutic context where countervailing considerations such as the child’s best interest and parental permission must also be weighed.Methods Searches were conducted in 11 databases including PubMed, Embase, (...) Cochrane Library, and Web of Science. Articles published between 2010 and 2020 were screened in COVIDENCE for meeting each of four criteria: (1) focusing on pediatric assent, (2) focusing on clinical care, (3) including normative claims, and (4) containing substantive statements about the meaning of pediatric assent. Full texts were abstracted for (1) operational definitions of assent, (2) discussion of the temporal nature of assent, (3) description of the concept of “understanding,” and (4) ethical justifications for soliciting assent. These excerpts were coded and code patterns formed themes presented in the results.Results The final analytic data set contained 29 articles. Analysis yielded three key themes. First, valid assent varies by treatment, population (e.g., younger versus older), and geographic/cultural context. Second, assent represents two distinct longitudinal processes: One involves eliciting preferences over a disease course or care episode; the other focuses on children’s developmental maturation. Third, ethical justifications for assent draw variously on instrumental and intrinsic reasons, but often remain ambiguous.Conclusions There is widespread agreement that assent is morally valuable, but there remain substantial ambiguities or disagreements about its meaning, process, and ethical justification. (shrink)

Pediatric participation in non-therapeutic research that poses greater than minimal risk has been the subject of considerable thought-provoking debate in the research ethics literature. While the need for more pediatric research has been called morally imperative, and concerted efforts have been made to increase pediatric medical research, the importance of protecting children from undue research risks remains paramount.United States research regulations are derived largely from the deliberations and report of the National Commission for the Protection of Human Subjects of Biomedical (...) and Behavioral Research. The authors of this report specifically designated children as a vulnerable population and suggested additional protections, most of which became U.S. law. One of the more contested sets of regulations surrounds non-therapeutic research, e.g., research that does not offer the potential for direct benefit to participants. Federal regulations allow local Institutional Review Boards to approve non-therapeutic research posing a minor increase above minimal risk when it involves children who have the disease or medical condition that the research addresses. (shrink)

Children’s preferences about medical treatment—like the preferences of other patients—hold moral weight in decision-making that is independent of considerations of autonomy or best interests. In light of this understanding of the moral value of patient preferences, the American Academy of Pediatrics could strengthen the ethical foundation for its formal guidance on pediatric assent.

Dystonia is a movement disorder that can have a debilitating impact on motor functions and quality of life. There are 250,000 cases in the United States, most with childhood onset. Due to the limited effectiveness and side effects of available treatments, pediatric deep brain stimulation has emerged as an intervention for refractory dystonia. However, there is limited clinical and neuroethics research in this area of clinical practice. This paper examines whether it is ethically justified to offer pDBS to children with (...) refractory dystonia. Given the favorable risk-benefit profile, it is concluded that offering pDBS is ethically justified for certain etiologies of dystonia, but it is less clear for others. In addition, various ethical and policy concerns are discussed, which need to be addressed to optimize the practice of offering pDBS for dystonia. Strategies are proposed to help address these concerns as pDBS continues to expand. (shrink)

For children with severe physical and cognitive disabilities (e.g. iatrogenic neurologic injury, congenital myelopathy, or quadriplegic cerebral palsy), there are limited therapeutic options. Scientific and clinical developments in implantable brain-computer interface (BCI) technology are in clinical trials in adults. The ethical issues around implantable BCI research in adults have recently been examined, but to date, only limited literature is available on the ethical issues that are attendant with implantable pediatric BCI research. Here, we summarize the ethical issues, focusing on (1) (...) whether invasive BCI research should proceed in children, (2) regulatory considerations, (3) study design considerations, (4) pediatric recipient selection for invasive BCI trials, (5) special problems regarding informed consent in this context, and (6) related psychosocial and public perception considerations. We conclude with specific recommendations regarding ethically informed design of invasive pediatric BCI trials. (shrink)

Brain-computer interfaces (BCIs) are being investigated as an access pathway to communication for individuals with physical disabilities, as the technology obviates the need for voluntary motor control. However, to date, minimal research has investigated the use of BCIs for children. Traditional BCI communication paradigms may be suboptimal given that children with physical disabilities may face delays in cognitive development and acquisition of literacy skills. Instead, in this study we explored emotional state as an alternative access pathway to communication. We developed (...) a pediatric BCI to identify positive and negative emotional states from changes in hemodynamic activity of the prefrontal cortex (PFC). To train and test the BCI, 10 neurotypical children aged 8–14 underwent a series of emotion-induction trials over four experimental sessions (one offline, three online) while their brain activity was measured with functional near-infrared spectroscopy (fNIRS). Visual neurofeedback was used to assist participants in regulating their emotional states and modulating their hemodynamic activity in response to the affective stimuli. Child-specific linear discriminant classifiers were trained on cumulatively available data from previous sessions and adaptively updated throughout each session. Average online valence classification exceeded chance across participants by the last two online sessions (with 7 and 8 of the 10 participants performing better than chance, respectively, in Sessions 3 and 4). There was a small significant positive correlation with online BCI performance and age, suggesting older participants were more successful at regulating their emotional state and/or brain activity. Variability was seen across participants in regards to BCI performance, hemodynamic response, and discriminatory features and channels. Retrospective offline analyses yielded accuracies comparable to those reported in adult affective BCI studies using fNIRS. Affective fNIRS-BCIs appear to be feasible for school-aged children, but to further gauge the practical potential of this type of BCI, replication with more training sessions, larger sample sizes, and end-users with disabilities is necessary. (shrink)

There is little information about the content of ethics consultations in pediatrics. We sought to describe the reasons for consultation and ethical principles addressed during EC in pediatrics through retrospective review and directed content analysis of EC records at St. Jude Children's Research Hospital. Patient-based EC were highly complex and often involved evaluation of parental decision making, particularly consideration of the risks and benefits of a proposed medical intervention, and the physician's fiduciary responsibility to the patient. Nonpatient consultations (...) provided guidance in the development of institutional policies that would broadly affect patients and families. This is one of the few existing reviews of the content of pediatric EC and indicates that the distribution of ethical issues and reasons for moral distress are different than with adults. Pediatric EC often facilitates complex decision making among multiple stakeholders, and further prospective research is need.. (shrink)

Recently published consensus recommendations on pediatric decision-making by Salter and colleagues (2023) did not address neonatal decision-making, due to the unique complexities of neonatal care. This essay explores three areas that impact neonatal decision-making: legal and policy considerations, rapid technological advancement, and the unique emotional burdens faced by parents and clinicians during the medical care of neonates. The authors evaluate the six consensus recommendations related to these considerations and conclude that the consensus recommendations apply to neonates.

In summer 2022, six points of consensus emerged from a symposium addressing the question, “In the context of U.S. pediatric care, what moral precepts ought to guide parents and clinicians in medical decision making for children?” (Salter et al. 2023). The authors of this statement wrote, however, that the points of consensus may require modification or may not apply in their entirety to children in state custody. This article addresses the consensus recommendations in the context of the thousands of children (...) removed annually from the custody of their parents. While the consensus statements developed at the symposium provide a good starting point for decision-making in the context of these children, some alterations and nuance must be applied to attend to the specific needs of this population. The article works through what special considerations and changes ought to be made to expand the reach of the original points of consensus without neglecting the particular conditions of children in state custody, as well as their parents and caregivers. (shrink)

As a matter of respect for the person, it is considered an ethical duty to offer to return research results to participants where appropriate. Nevertheless, the return of individual research results to participants raises many socio-ethical issues and greater challenges when the participant is a child. This discrepancy arises partly because the return of individual pediatric research results entails a tripartite relationship between researcher, child, and parent and is embroiled in numerous considerations.Extra caution is required in the pediatric research context (...) because children cannot generally decide whether they want to be informed of their own research results or whether the results should be disclosed to parents. Children have long been considered a special and vulnerable group, and their parents, as guardians, play a critical role in the consent process. However, with regards to the return of individual research results, this might pose a potential conflict of interest between the current or future desires of the child and those of the parents. (shrink)

Neonatal pediatrics has made stunning and completely unprecedented progress in recent years. Nonetheless, an increasing number of voices now ask, Where is this field of medicine going? Is it, dare one ask, even headed in the right direction? These are reasonable questions, but first we need to know where this subspecialty of pediatrics has been. The current phenomenon is all the more remarkable because it differs so completely from the past.

Pediatrics is a medical specialty involving the medical care of infants, children, and adolescents. The first medical textbook on diseases of children was published in 1764 and the first pediatric hospital was established in Paris in 1802.

Neuroimaging has provided insight into numerous neurological disorders in children, such as epilepsy and cerebral palsy. Many clinicians and investigators believe that neuroimaging holds great promise, especially in the areas of behavioral and cognitive disorders. However, concerns about the risks of various neuroimaging modalities and the potential for misinterpretation of imaging results are mounting. Imaging evaluations also raise questions about stigmatization, allocation of resources, and confidentiality. Children are particularly vulnerable in this milieu and require special attention with regards to safety (...) guidelines and modality adaptations. This article examines pediatric neuroimaging practice through an ethics lens. Most authors in the field of neuroethics focus on the future concerns of neuroimaging. In contrast, our paper examines ethical matters surrounding current clinical applications in the pediatric population. We first provide a brief overview of the neuroimaging technologies most commonly used in a pediatric clinical context and then discuss a variety of ethical issues arising from the use of these technologies. (shrink)

Clinical ethics consultants face a wide range of ethical dilemmas that require broad knowledge and skills. Although there is considerable overlap with the approach to adult consultation, ethics consultants must be aware of differences when they work with infant, pediatric, and adolescent cases. This article addresses unique considerations in the pediatric setting, reviews foundational theories on parental authority, suggests practical approaches to pediatric consultation, and outlines current available resources for clinical ethics consultants who wish to deepen their skills in this (...) area. (shrink)

This article provides practical guidance for researchers who wish to enroll and collect data from pediatric research participants through online and mobile platforms, with a focus on the involvement of both children and their parents in the decision to participate.

Adolescents present a puzzle. There are foundational unclarities about how they should be regarded as decision-makers. Although superficially adolescents may appear to have mature decisional capacity, their decision-making is in many ways unlike that of adults. Despite this seemingly obvious fact, a concern for the claims of autonomy has led to the development of the legal doctrine of the mature minor. This legal construct considers adolescents, as far as possible, as equivalent to adults for the purpose of medical decision-making. The (...) movement to support independent decision-making by adolescents through providing information to them and securing their consent apart from their parents is encouraged by those legal understandings that hold that unemancipated minors should generally be considered as possessing effective decisional capacity. Such legal structures, however, do not adequately take account of the wide variations in adolescent capacities, the immaturity of most adolescent decision-makers, or the important contributions made by parents to the development of their adolescents through parental partnering in the adolescent’s decision-making. The data available indicate that in general adolescents should be regarded as apprentice decision-makers who should make decisions in collaboration with their parents until at least the age of 18. Steps should not be taken pre-emptively to isolate adolescents from the guidance of their parents. As a general rule, what Piker has referred to as “collaborative paternalism” appears most likely both to protect adolescents from their own untoward choices, while also very importantly helping them with parental guidance to develop into mature decision-makers with the capacity to make medical choices on their own. (shrink)

This book assists health care providers to understand the specific interplay of the roles and relationships currently forming the debates in pediatric clinical ethics. It builds on the fact that, unlike adult medical ethics, pediatric ethics begins within an acutely and powerfully experienced dynamic of patient-family-state-physician relationship. The book provides a unique perspective as it interacts with established approaches as well as recent developments in pediatric ethics theory, and then explores these developments further through cases. The book first focuses on (...) setting the stage by introducing a theoretical framework and elaborating how pediatric ethics differ from non-pediatric ethics. It approaches different theoretical frameworks in a critical manner drawing on their strengths and weaknesses. It helps the reader in developing an ability to engage in ethical reasoning and moral deliberation in order to focus on the wellbeing of the child as the main participant in the ethical deliberation, as well as to be able to identify the child’s moral claims. The second section of the book focuses on the practical application of these theoretical frameworks and discusses specific areas pertaining to decision-making. These are: the critically ill child, new and enduring ethical controversies, and social justice at large, the latter of which includes looking at the child’s place in society, access to healthcare, social determinants of health, and vaccinations. With the dynamic changes and challenges pediatric care faces across the globe, as well as the changing face of new technologies, no professional working in the field of pediatrics can afford not to take due note of this resource. (shrink)

Industry 4.0 represents the latest phase of industrial evolution, characterized by the seamless integration of cyber-physical systems, the Internet of Things, big data analytics, artificial intelligence, advanced robotics, and cloud computing, enabling smart, adaptive, and interconnected processes where physical, digital, and biological realms converge. In parallel, healthcare has progressed from the traditional, physician-centered model of Healthcare 1.0 by introducing medical devices and digitized records to Healthcare 4.0, which leverages Industry 4.0 technologies to create personalized, data-driven, and patient-centric systems. In this (...) context, we hereby introduce Pediatrics 4.0 as a new paradigm that adapts these innovations to children’s unique developmental, physiological, and ethical considerations and aims to improve diagnostic precision, treatment personalization, and continuous monitoring in pediatric populations. Key applications include AI-driven diagnostic and predictive analytics, IoT-enabled remote monitoring, big data-powered epidemiological insights, robotic assistance in surgery and rehabilitation, and 3D printing for patient-specific devices and pharmaceuticals. However, realizing Pediatrics 4.0 requires addressing significant challenges—data privacy and security, algorithmic bias, interoperability and standardization, equitable access, regulatory alignment, the ethical complexities of consent, and long-term technology exposure. Future research should focus on explainable AI, pediatric-specific device design, robust data governance frameworks, dynamic ethical and legal guidelines, interdisciplinary collaboration, and workforce training to ensure these transformative technologies translate into safer, more effective, and more equitable child healthcare. (shrink)

Bioethical decision‐making in pediatrics diverges from similar decisions in other medical domains because the young child is not an autonomous decision‐maker, while the teen is developing—and should be encouraged to develop—autonomy and decisional capacity. Thus the balance between autonomy and beneficence is fundamentally different in pediatrics than in adult medicine. While ethical dilemmas that reflect these fundamental issues are common, many pediatric physician and nursing training programs do not delve into the issues or offer specific training about how (...) to deal with borderline cases.To meet this need, the Children's Mercy Bioethics Center in Kansas City, Missouri, created a program specifically dedicated to serving practicing, experienced pediatric health professionals. Our students come from various professional disciplines: they are doctors, nurses, social workers, chaplains, lawyers, psychologists, counselors, and hospital administrators practicing in pediatrics. (shrink)

This article analyzes the pediatric material in the Arabic commentaries (written tenth–fifteenth centuries) on the Hippocratic Aphorisms by exploring the traces of its late-antique origins and highlighting the influences of contemporary Islamic sources. This study demonstrates, first, how the commentaries assimilate Galenic pediatric theory through intricate elaborations and innovations; and second, that the commentators on the Aphorisms exhibit a strict theoretical interest in the causes and nature of childood diseases as opposed to their remedies. Consequently, it shows that therapeutic pediatric (...) material was restricted to other nonexegetical genres, such as the encyclopedias of Ibn Sīnā and Ibn Rabban al-Ṭabarī. The commentary material is thus a unique example of medieval Islamic theoria or theoretical medicine, which transmitted and transformed Galenic and early medieval theoretical explanations of childhood illnesses through the centuries. (shrink)

Background: Moral distress is a very common experience in the nursing profession, and it is one of the main reasons for job dissatisfaction, burnout, and quitting among nurses. For instance, morally difficult situations in taking care of child patients who are severely ill may lead to moral distress for nurses. However, most of the studies about moral distress have been conducted on nurses of special wards and adult medical centers with much focus on developed countries. Subsequently, little has been researched (...) on this topic among nurses in other nations such as Iran, and most certainly, there has been hardly any such research involving Iranian pediatric nurses. Aim/objectives: This study was conducted to evaluate moral distress among nurses in selected pediatric hospitals in Tehran, Iran. Research design: This cross-sectional study was conducted on eligible nurses who were selected through proportional stratified sampling and who completed demographic characteristics and the pediatric version of Moral Distress Scale-Revised questionnaires. Data were analyzed using descriptive statistics, t test, one-way analysis of variance, and Pearson correlation coefficient. Participants and research context: In total, 195 pediatric nurses working at three selected children’s specialized university hospitals in Tehran participated in this study. Ethical considerations: This study was evaluated and approved by the institutional review board of Tehran University of Medical Sciences. Findings: The mean and standard deviation of total score of moral distress was 106.41 ± 61.64 within a range of 10–257. Also, the difference between the mean score of moral distress of the group who had not quitted their position and those who have quit in the past was statistically significant (p = 0.043). The situation that was associated with the highest moral distress was “observing medical students performing painful procedures on patients just to gain some skill.” Total score of moral distress was significantly higher among male nurses (p = 0.014), while nurses with a master’s degree experienced just a higher intensity of moral distress compared to those who had a bachelor’s degree (p = 0.006). Conclusion: Since many pediatric nurses clearly face moral distress while taking care of children, it is necessary to consider measures for preventing or decreasing situations that would lead to this distress. (shrink)

Controversies surrounding the determination of death by neurologic criteria (DNC), also known as brain death, have become increasingly common over the last decade, occasionally leading to parental refusal of all or part of an evaluation or declaration of DNC. We performed a prospective, crosssectional study of pediatric neurologists and intensivists who participate in professional listservs to ascertain perspectives and practices concerning the evaluation of DNC, specifically on obtaining permission for evaluations and managing refusals. Of the 334 respondents who had performed (...) an evaluation for DNC, 35 percent reported they had experienced at least one parental refusal, and 64.4 percent reported that they did not seek permission to perform an evaluation. Pediatric neurologists, careproviders who had less experience doing evaluations, and careproviders who had experienced parental refusal of an evaluation were more likely to obtain permission from parents. Most (80.8 percent) of respondents reported that their institution had a DNC policy. We found variability in many aspects of DNC evaluations and declarations, as well as the handling of refusals. Lack of consistency may make it more difficult for careproviders and families. Greater understanding of parental refusal of DNC evaluation is essential to inform efforts to increase consistency. (shrink)

Background Ethical dilemmas in pediatric oncology represent a major challenge for nurses, significantly impacting their well-being and motivation at work. Research aim The objective of this study was to identify the ethical dilemmas experienced by nurses through a sample recruited from two pediatric cancer treatment units. Research design This study adopts an interpretative phenomenological qualitative approach based on interviews conducted with nurses working in pediatric oncology. Ethical considerations The study adhered to ethical principles. Institutional authorization was obtained prior to data (...) collection, and participants’ confidentiality and anonymity were strictly ensured. Findings The findings revealed that nurses face ethical dilemmas on a daily basis, structured around four main thematic domains: communication and decision-making, pain and care practices, professional integrity and safety, and systemic and contextual constraints. These dilemmas encompass issues such as truth-telling, treatment refusal, pain management, medication errors, resource allocation, confidentiality, and end-of-life decisions, including treatment futility. These situations have a significant impact on nurses’ well-being and on the quality of care provided. Discussion and conclusion Our findings align with international literature, highlighting that poor service management, institutional conflicts, heavy workloads, and unrealistic expectations from some families also contribute to the psychological and moral distress of nurses. This study underscores the need to implement support mechanisms to help nurses navigate ethical dilemmas. Improving healthcare organization, providing continuous training, and ensuring appropriate supervision could reduce moral distress among caregivers and enhance the quality of care for children with cancer. (shrink)

Can Covid-19 vaccines be used off-label? Should they be? These were questions on the minds of parents, pediatricians, and the media when the FDA fully approved the Pfizer-BioNTech Covid-19 vaccine for people aged 16 and up. Yet the American Academy of Pediatrics cautioned against pediatric off-label use of the vaccine, and the CDC Covid-19 Vaccine Provider Agreement appears to prohibit it. After briefly contextualizing ethical and legal precedents regarding off-label use, we offer an analysis of the ethical permissibility of (...) and considerations for pediatric off-label Covid-19 vaccination based on individual benefits, risks, and available alternatives. Our analysis challenges the ethics of a blanket prohibition on off-label pediatric Covid-19 vaccination, as it limits clinician ability to provide care they may determine to be clinically and ethically appropriate. At the same time, our analysis acknowledges that Covid-19 creates population-level ethical considerations that are at times in tension with individual health interests. (shrink)

Despite the reported limited success of conventional treatments and growing evidence of the effectiveness of adult bariatric surgery, weight loss operations for (morbidly) obese children and adolescents are still considered to be controversial by health care professionals and lay people alike. This paper describes an explorative, qualitative study involving obesity specialists, morbidly obese adolescents, and parents and identifies attitudes and normative beliefs regarding pediatric bariatric surgery. Views on the etiology of obesity—whether it should be considered primarily a medical condition or (...) more a psychosocial problem—seem to affect the specialists’ normative opinions concerning the acceptability of bariatric procedures as a treatment option, the parents’ feelings regarding both being able to influence their child’s health and their child being able to control their own condition, and the adolescents’ sense of competence and motivation for treatment. Moreover, parents and adolescents who saw obesity as something that they could influence themselves were more in favor of non-surgical treatment and vice versa. Conflicting attitudes and normative views—e.g., with regard to concepts of disease, personal influence on health, motivation, and the possibility of a careful informed consent procedure—play an important role in the acceptability of bariatric surgery for childhood obesity. (shrink)

Neonatal suffering has been the focus of recent debates in pediatric bioethics and suffering theory. How can we access and conceptualize the suffering that can be attributed to newborns? How are we to discern the suffering of newborns who are non-neurotypical and may have short lives and severe neurocognitive disabilities, in addition to being entirely dependent on people or life-sustaining technologies? Phenomenology has provided valuable tools for analyzing the human experiences of suffering, but its application to neonatal suffering comes with (...) fundamental challenges. In this paper, I consider recent contributions for elucidating the phenomenon of neonatal suffering, especially those in the field of non-experiential theories of suffering. Based on this review, a recent phenomenological approach to suffering is examined. Explicitly directed toward narrative persons, that approach appears to be inherently limited in elucidating the phenomenon of neonatal pediatric suffering. A suggestion is offered for partially elaborating the theoretical foundations of a phenomenological theory of neonatal suffering. This suggestion points towards a program for a phenomenology of the existential feelings of newborns. (shrink)

In pediatric critical care, nurses are the primary caregivers for critically ill children and are particularly vulnerable to moral distress. There is limited evidence on what approaches are effective to minimize moral distress among these nurses. To identify intervention attributes that critical care nurses with moral distress histories deem important to develop a moral distress intervention. We used a qualitative description approach. Participants were recruited using purposive sampling between October 2020 to May 2021 from pediatric critical care units in a (...) western Canadian province. We conducted individual semi-structured interviews via Zoom. A total of 10 registered nurses participated in the study. Four main themes were identified: (1) “I’m sorry, there’s nothing else”: increasing supports for patients and families; (2) “someone will commit suicide”: improving supports for nurses: (3) “Everyone needs to be heard”: improving patient care communication; and (4) “I didn’t see it coming”: providing education to mitigate moral distress. Most participants stated they wanted an intervention to improve communication among the healthcare team and noted changes to unit practices that could decrease moral distress. This is the first study that asks nurses what is needed to minimize their moral distress. Although there are multiple strategies in place to help nurses with difficult aspects of their work, additional strategies are needed to help nurses experiencing moral distress. Moving the research focus from identifying moral distress towards developing effective interventions is needed. Identifying what nurses need is critical to develop effective moral distress interventions. (shrink)

Training residents to become humanistic physicians capable of empathy, compassionate communication, and holistic patient care is among our most important tasks as physician educators. Narrative medicine aims to foster those highly desirable characteristics, and previous studies have shown it to be successful in fostering self-reflection, emotional processing, and preventing burnout. We aimed to evaluate pediatric residents’ perceptions of a novel narrative medicine curriculum. After the initiation of a longitudinal narrative medicine curriculum, focus groups were conducted with residents who participated in (...) at least one narrative medicine session. The curriculum was viewed positively, and residents found the sessions to be helpful in developing empathy, offering a space for reflection, and introducing new perspectives. Challenges noted were perception of relevance, timing of sessions, and interpretation by non-native English-speaking residents. With attention to linguistics and thematic undertones, narrative medicine is a feasible, replicable, and accepted teaching modality for pediatric residents to foster empathy, process emotions, and participate in self-reflection. (shrink)

Children in the pediatric intensive care unit are indisputably in a vulnerable position, dependent on nurses to acknowledge their needs. It is assumed that children should be approached from a holistic perspective in the caring situation to meet their caring needs. The aim of the study was to unfold the meaning of nursing care through nurses’ concerns when caring for children in the pediatric intensive care unit. To investigate the qualitative aspects of practice embedded in the caring situation, the interpretive (...) phenomenological approach was adopted for the study. The findings revealed three patterns: medically oriented nursing—here, the nurses attend to just the medical needs, and nursing care is at its minimum, leaving the children’s needs unmet; parent-oriented nursing care—here, the nursing care emphasizes the parents’ needs in the situation, and the children are viewed as a part of the parent and not as an individual child with specific caring needs; and smooth operating nursing care orientation—here, the nursing care is focused on the child as a whole human being, adding value to the nursing care. The conclusion drawn suggests that nursing care does not always respond to the needs of the child, jeopardizing the well-being of the child and leaving them at risk for experiencing pain and suffering. The concerns present in nursing care has been shown to be the divider of the meaning of nursing care and need to become elucidated in order to improve the cultural influence of what can be seen as good nursing care within the pediatric intensive care unit. (shrink)

Many neurological disorders currently lack effective treatments, thereby setting the stage where gene therapies can represent an attractive option. Given the early onset of many genetic conditions, including neurodevelopmental disorders, proponents of gene therapy advocate for earlier therapeutic interventions, meaning pediatric or even fetal gene therapy. From an ethical point of view, therapies targeting children and fetuses differ in crucial ways from therapies where the patients are adults. Neurodevelopmental disorders are sometimes argued to affect the ethical implications of therapeutics differently (...) from other non-neurodevelopmental genetic conditions, in that neurodevelopmental disorders are often seen to affect human identity in particularly salient ways. This chapter focuses on the ethical implications set up specifically by gene therapies occurring early in life (either post- or pre-natally) and targeting neurodevelopmental disorders. We argue that the way the extant bioethical literature overwhelmingly (but not exclusively) presents the arguments results from individualistic theoretical positions, even though several calls for ethically assessing these health technologies from a relational position have been made for more than a decade now. We are not looking here to dismiss important ethical questions as irrelevant, but rather to draw attention to the (often humanist) assumptions implicit in their formulations, in order to re-formulate them, thereby avoiding unnecessary paradoxes introduced by the framing of the ethical analyses, and not inherent to the technologies in question. This re-formulation results in considering the relevant ethical principles (such as justice, beneficence, autonomy) in the context of each other, as opposed to in isolation (and additively). (shrink)

When talking about decisionmaking for children with a life-threatening condition, the death of children with brain tumors deserves special attention. The last days of the lives of these children can be particularly harsh for bystanders, and raise questions about the suffering of these children themselves. In the Netherlands, these children are part of the group for whom a wide range of end-of-life decisions are discussed, and questions raised. What does the end-of-life for these children look like, and what motivates physicians (...) and parents to make decisions that may affect the life and death of these children? This article highlights the story of the parents of the sisters Roos and Noor. When both their daughters were diagnosed with a hereditary brain tumor, they had to make similar decisions twice. Their story sheds light on the suffering of children in the terminal phase, and how this suffering may motivate parents and physicians to make decisions that influence the end of life of these children’s lives.We argue that complete knowledge about suffering in the terminal phase of children with brain tumors is impossible. However, by collecting experiences like those of Roos and Noor, we can move toward an experienced-based understanding and better guide parents and physicians through these hardest of decisions. (shrink)