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.

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)

“Moral hazard” is a term familiar in economics and business ethics that illuminates why rational parties sometimes choose decisions with bad moral outcomes without necessarily intending to behave selfishly or immorally. The term is not generally used in medical ethics. Decision makers such as parents and physicians generally do not use the concept or the word in evaluating ethical dilemmas. They may not even be aware of the precise nature of the moral hazard problem they are experiencing, beyond a general (...) concern for the patient's seemingly excessive burden. This article brings the language and logic of moral hazard to pediatrics. The concept reminds us that decision makers in this context are often not the primary party affected by their decisions. It appraises the full scope of risk at issue when decision makers decide on behalf of others and leads us to separate, respect, and prioritize the interests of affected parties. (shrink)

Since Clinical Ethics Consultation has become important in the public health sector in the last decade in Germany, there are on-going questions about effectiveness. Targets have been established by the Ethics Committees, in regard to assisting patients, families and health care teams at times of ethical conflicts during the decision-making process in medical care. Of all the ethics consultations over the last eight years at Erlangen University Hospital the consultations carried out in the pediatric department were chosen to be reviewed (...) by a pediatrician and an ethicist. These were evaluated on the basis of team formation, interdisciplinary orientation, ethical criteria, completeness and methods of documentation. Results of the analysis of those records show a well-organized consultation team with regard to its personnel composition. Discrepancies with ethical questions posed in the literature are revealed, and also some partially incomplete documentation regarding medical facts and descriptions of the patients' or parents' opinion. (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: Pediatrics ethics education should enhance medical students' skills to deal with ethical problems that may arise in the different settings of care. This study aimed to analyze the ethical problems experienced by physicians who have medical education and pediatric care responsibilities, and if those problems are associated to their workplace, medical specialty and area of clinical practice. Methods: A self-applied semi-structured questionnaire was answered by 88 physicians with teaching and pediatric care responsibilities. Content analysis was performed to analyze (...) the qualitative data. Poisson regression was used to explore the association of the categories of ethical problems reported with workplace and professional specialty and activity. Results: 210 ethical problems were reported, grouped into five areas: physician-patient relationship, end-of-life care, health professional conducts, socioeconomic issues and health policies, and pediatric teaching. Doctors who worked in hospitals as well as general and subspecialist pediatricians reported fewer ethical problems related to socioeconomic issues and health policies than those who worked in Basic Health Units and who were family doctors. Conclusions: Some ethical problems are specific to certain settings: those related to end-of-life care are more frequent in the hospital settings and those associated with socioeconomic issues and public health policies are more frequent in Basic Health Units. Other problems are present in all the setting of pediatric care and learning and include ethical problems related to physician-patient relationship, health professional conducts and the pediatric education process. These findings should be taken into consideration when planning the teaching of ethics in pediatrics.Trial registrationThis research article didn't reports the results of a controlled health care intervention. The study project was approved by the Institutional Ethical Review Committee (Report CEP-HIJG 032/2008). (shrink)

Autism is a chronic neurodevelopmental disorder that presents unique challenges to bioethicists. In particular, bioethicists ought to reconsider pediatric consent in light of disparity between beliefs that are held about the disorder by parents and adults with autism. The neurodiverse community ought to be given some consideration in this debate, and, as such, there may be a role for autistic narratives in clarifying this problem.

Volume 20, Issue 7, July 2020, Page 147-150.

In this article, we first review the development of clinical ethics in pediatrics in the United States. We report that, over the last 40 years, most children’s hospitals have ethics committees but that those committees are rarely consulted. We speculate that the reasons for the paucity of ethics consults might be because ethical dilemmas are aired in other venues. The role of the ethics consultant, then, might be to shape the institutional climate and create safe spaces for the discussion (...) of difficult and sometimes contentious issues. Finally, we report how pediatric clinical ethics has evolved differently in a number of other countries around the world. (shrink)

Historically, parents looking for guidance turned to a small cadre of trusted individuals such as grandparents and pediatricians. In the Internet era, this paradigm has shifted. With a few keystrokes, anxious parents have access to a seemingly endless array of opinions from faceless sources with unknown agendas. For some parents, this can cause more uncertainty, and for the parents of a child with a medical condition, navigating this information can be overwhelming. In this modern paradigm, the pediatrician's duty has also (...) become more complex, especially with the shift from paternalism to patient autonomy in medical decision-making. It is within this context that Alan Fleischman's book, Pediatric Ethics: Protecting the Interests of Children, should be examined. A pediatrician and neonatologist, Fleischman has witnessed this evolution over more than five decades of practice. As a clinical and academic bioethicist, he has also witnessed a transformation in the field of bioethics, with shifting perspectives on areas such as research ethics and medical decision-making. Because of his rich experience and deep understanding of the past and present of ethical issues in pediatrics, Fleischman approaches this subject with a perspective that warrants attention and thoughtful consideration. (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)

Background: Pediatric guidelines recommend that children and adolescents participate in a developmentally appropriate way in end-of-life decision making. Shared decision making in pediatrics is unique because of the triadic relationship of patient, parents, and physician. The involvement of the patient may vary on a continuum from no involvement to being the sole decision maker. However, the effects of child participation have not been thoroughly studied. The aims of this literature review are to identify studies on end-of-life decision making in (...) pediatrics, to explore patient participation, and to assess the effects of such participation. Methods: Five databases—PubMed, PsycInfo, Medline, CINAHL, and Sociological Abstract—were searched for empirical studies on end-of-life decision making in pediatrics. Selected articles fulfilling the criteria were assessed for type of decision, participants’ characteristics, reports on participation of the minor patient, and outcome. Results: Fifty-seven articles on end-of-life decision making in pediatrics were identified. The majority of papers (n = 43, 75%) investigated parents’ and clinicians’ perspectives, while only 14 articles (25%) included perspectives of children and adolescents. Twenty-two articles (39%) reported some details on various forms of children's participation (e.g., receive information, plan care details, consulted before or after a decision was made). Positive (e.g., respect for patient's preferences) and negative (e.g., conflict due to diverging opinions) effects of children's participation in end-of-life decision making were reported. Conclusions: This systematic review highlights the need for research to identify factors that contribute to a favorable participation of minors in decision-making processes, as well as strategies to solve possible conflicts. More research should take into account the dynamics in the triadic process of decision making and emphasize children and adolescents’ perspectives. A better understanding of how to meaningfully involve children and adolescents in end-of-life decision making could facilitate the practice of patient participation in pediatrics. (shrink)

Bei der Durchführung von Impfungen in der Pädiatrie sind die Interessen von Kind, Eltern und öffentlicher Gesundheitsvorsorge zu berücksichtigen. Eine ethische Diskussion allein auf Grundlage der informierten Einwilligung wird der vielschichtigen Dimension der Impfproblematik nicht gerecht. In bestimmten Fällen erscheint eine Impfung auch gegen den Willen der Eltern legitim, z. B. wenn das Kindeswohl gefährdet ist. Ein genereller Impfzwang ist jedoch ethisch nicht zu rechtfertigen. Untersuchungen haben gezeigt, dass impfkritische Eltern andere Entscheidungskriterien verwenden als bislang von Experten angenommen. Für die (...) weitere Diskussion sind die Grenzen der informierten Einwilligung sowie der Einwilligungsspielraum älterer Kinder zu präzisieren. Schließlich sollten unbedingt empirische Untersuchungen durchgeführt werden, um insbesondere die Beweggründe impfkritischer Eltern besser zu verstehen. (shrink)

Bei der Durchführung von Impfungen in der Pädiatrie sind die Interessen von Kind, Eltern und öffentlicher Gesundheitsvorsorge zu berücksichtigen. Eine ethische Diskussion allein auf Grundlage der informierten Einwilligung wird der vielschichtigen Dimension der Impfproblematik nicht gerecht. In bestimmten Fällen erscheint eine Impfung auch gegen den Willen der Eltern legitim, z. B. wenn das Kindeswohl gefährdet ist. Ein genereller Impfzwang ist jedoch ethisch nicht zu rechtfertigen. Untersuchungen haben gezeigt, dass impfkritische Eltern andere Entscheidungskriterien verwenden als bislang von Experten angenommen. Für die (...) weitere Diskussion sind die Grenzen der informierten Einwilligung sowie der Einwilligungsspielraum älterer Kinder zu präzisieren. Schließlich sollten unbedingt empirische Untersuchungen durchgeführt werden, um insbesondere die Beweggründe impfkritischer Eltern besser zu verstehen. (shrink)

Process logic described by A. V. Smirnov is based on materials from the arab-muslim cul­ture as a whole. Process logic is contrasted with the substance logic which forms the foundation of European culture as a whole. It has been proven theoretically that any situation could be interpreted using any logic of sense. The article provides an empirical illustration of the use of the process logic in a consultation of a preschool educational in­stitution psychologist on problems connected with a mental disorder (...) of one of the pupils of the institution. On the basis of this single example it is demonstrated how process logic allows the shift of the focus of attention retaining the rational basis of the actions. Situa­tions relating to the health are difficult to describe using substantial logic as the course of the disease depends on the actions of the patient and on the actions of people in his/her immediate surroundings. This limits the usability of the law of identity which is funda­mental to substantial logic. The disease is “not that very same” disease – it is changing as the result of the actions. This creates a persistent uncertainty which is of remarkable im­portance in pediatric healthcare, where the actions of the parents are complicating the sit­uation much more significantly compared to the adult healthcare. In contrast to this, process logic allows us to observe the course of the ailment as such, as being a process, which eliminates the uncertainty. The process determines the actions regarding the ail­ment as well as their evaluation. If an action is changing the course of the ailment to the better we consider it successful. In the case described, the logic of understanding the situation used by the consultant has changed the client’s logic of understanding the situation. The person stopped seeing the problem as something rigid and insurmount­able. The change of the logic didn’t require any special training of the client. It follows that the shift of understanding from the substance logic to the process logic can help to solve practical pediatric problems. (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.

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)

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)

Ethics education is recognized as an integral component of health professionals’ education and has been occurring in various guises in the curricula of health professional training in many countries since at least the 1970s. However, there are a number of different aims and approaches adopted by individual educators, programs, and, importantly, different health professions that may be characterized according to strands or trends in ethics education.

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)

Key legislations in many countries emphasize the importance of involving children in decisions regarding their own health at a level commensurate with their age and capacities. Research is engaged in developing tools to assess capacity in children in order to facilitate their responsible involvement. These instruments, however, are usually based on the cognitive criteria for capacity assessment as defined by Appelbaum and Grisso and thus ill adapted to address the life-situation of children. The aim of this paper is to revisit (...) and critically reflect upon the current definitions of decision-making capacity. For this purpose, we propose to see capacity through the lens of essential contestability as it warns us against any reification of what it means to have capacity. Currently, capacity is often perceived of as a mental or cognitive ability which somehow resides within the person, obscuring the fact that capacity is not just an objective property which can be assessed, but always operates within a dominant cultural framework that “creates” that same capacity and defines the threshold between capable and incapable in a specific situation. Defining capacity as an essentially contested concept means using it in a questioning mode and giving space to alternative interpretations that might inform and advance the debate surrounding decision-making. (shrink)

Medical anthropologists have long recognized variation between cultures with regard to the locus of healing in different systems and traditions: that is, in some cultures, the human body is a “bounded physical unit” and healing is thus focused on the body alone. This perspective will be most familiar to Western health-care providers, and indeed, many providers do not imagine an alternative perspective. However, in many cultures, experiences of health, illness, disease, and healing are intricately connected with the social spheres. In (...) these contexts, healing practices and rituals may seek to address family dynamics, alter roles within a community, and resolve social rifts, and illness itself may be... (shrink)

The following hypothetical case study was developed for bioengineering students and is concerned with choosing between two devices used for development of a pediatric tissue engineered heart valve (TEHV). This case is intended to elicit assessment of the devices, possible future outcomes, and ramifications of the decision making. It is framed in light of two predominant ethical theories: utilitarianism and rights of persons. After the case was presented to bioengineering graduate students, they voted on which device should be released. The (...) results revealed that these bioengineering students preferred the more reliable (and substantially more expensive) design, though this choice precludes the majority of the world from having access to this technology. This case is intended to examine and explore where the balance lies between design, cost, and adequate distribution of biomedical devices. (shrink)

Two core questions in pediatric ethics concern when and how physicians are ethically permitted to intervene in parental treatment decisions (intervention principles), and the goals or values that should direct physicians’ and parents’ decisions about the care of children (guidance principles). Lainie Friedman Ross argues in this issue of The Journal of Clinical Ethics that constrained parental autonomy (CPA) simultaneously answers both questions: physicians should intervene when parental treatment preferences fail to protect a child’s basic needs or primary goods, and (...) both physicians and parents should be guided by a commitment to protect a child’s basic needs and primary goods. In contrast, we argue that no principle—neither Ross’s CPA, nor the best interest standard or the harm threshold—can serve as both an intervention principle and a guidance principle. First, there are as many correct intervention principles as there are different kinds of interventions, since different kinds of interventions can be justified under different conditions. Second, physicians and parents have different guidance principles, because the decisions physicians and parents make for a child should be informed by different values and balanced by different (potentially) conflicting commitments. (shrink)

Viola and Ben, two pediatric oncology patients, need to undergo chemotherapy that might decrease their fertility. Both of them want to participate in the decisions related to their cancer treatment and fertility preservation. Should they be involved, and if so when and how?In many jurisdictions, children are not entitled to provide legally valid consent for medical decisions.1 As a result, others, usually parents, take on the role of surrogate decision-makers who act in their best interest. Still, it is important to (...) keep in mind that the age limit for competence set by legislation does not necessarily coincide with children’s clinical decision-making capacity: some children may be able to make certain health-care... (shrink)