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.
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)
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)
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.
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)
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.
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)
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)
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)
American Academy of Pediatrics and American College of Medical Genetics recently provided two recommendations about predictive genetic testing of children. The Clinical Sequencing Exploratory Research Consortium's Pediatrics Working Group compared these recommendations, focusing on operational and ethical issues specific to decision making for children. Content analysis of the statements addresses two issues: how these recommendations characterize and analyze locus of decision making, as well as the risks and benefits of testing, and whether the guidelines conflict or come to (...) different but compatible conclusions because they consider different testing scenarios. These statements differ in ethically significant ways. AAP/ACMG analyzes risks and benefits using best interests of the child and recommends that, absent ameliorative interventions available during childhood, clinicians should generally decline to order testing. Parents authorize focused tests. ACMG analyzes risks and benefits using the interests of the child and other family members and recommends that sequencing results be examined for additional variants that can lead to ameliorative interventions, regardless of age, which laboratories should report to clinicians who should contextualize the results. Parents must accept additional analysis. The ethical arguments in these statements appear to be in tension with each other. (shrink)
The current rise of neurodevelopmental disorders poses a critical need to detect risk early in order to rapidly intervene. One of the tools pediatricians use to track development is the standard growth chart. The growth charts are somewhat limited in predicting possible neurodevelopmental issues. They rely on linear models and assumptions of normality for physical growth data – obscuring key statistical information about possible neurodevelopmental risk in growth data that actually has accelerated, non-linear rates-of-change and variability encompassing skewed distributions. Here, (...) we use new analytics to profile growth data from 36 newborn babies that were tracked longitudinally for 5 months. By switching to incremental (velocity-based) growth charts and combining these dynamic changes with underlying fluctuations in motor performance – as the transition from spontaneous random noise to a systematic signal – we demonstrate a method to detect very early stunting in the development of voluntary neuromotor control and to flag risk of neurodevelopmental derail. (shrink)
Definition of the problem: In the field of vaccination in pediatrics, the interests of children, parents and the public health authorities have to be taken into consideration. Arguments: An ethical discussion exclusively in the context of informed consent is not sufficient. Vaccinations as a social duty can be legitimated under certain conditions, e. g., if the well-being of the child is in danger. However, a general duty to vaccinate cannot be justified. Empirical studies have demonstrated that non-vaccinators do not (...) use the same decision criteria as experts. Conclusion: The limits of informed consent and minors’ consent to vaccination have not yet been thoroughly discussed. Further empirical studies with parents are required to understand the attitudes of non-vaccinators. (shrink)
Global health experiences during medical education can have a profound effect on physicians-in-training. This reflection was written to capture a meaningful moment during the author’s experience in medical school—one that made real the contrast between children from different social circumstances. Now a resident physician in pediatrics, the author carries with him the lessons learned from his time in rural India.
Most recent thinking about thevulnerability of research subjects uses a``subpopulation'' focus. So conceived, theproblem is to work out special standards forprisoners, pregnant women, the mentally ill,children, and similar groups. In contrast, an``analytical'' approach would identifycharacteristics that are criteria forvulnerability. Using these criteria, one couldsupport a judgment that certain individuals arevulnerable and identify needed accommodationsif they are to serve as research subjects.Seven such characteristics can be evident inchildren: they commonly lack the capacity tomake mature decisions; they are subject to theauthority of (...) others; they (and their parents)may be deferential in ways that can maskunderlying dissent; their rights and interestsmay be socially undervalued; they may haveacute medical conditions requiring immediatedecisions not consistent with informed consent;they may have serious medical conditions thatcannot be effectively treated; and they (andtheir parents) may lack important sociallydistributed goods. Each of thesevulnerabilities can call for special care inthe design and implementation of researchprotocols. (shrink)
BackgroundPediatric oncology has a strong research culture. Most pediatric oncologists are investigators, involved in clinical care as well as research. As a result, a remarkable proportion of children with cancer enrolls in a trial during treatment. This paper discusses the ethical consequences of the unprecedented integration of research and care in pediatric oncology from the perspective of parents and physicians.MethodologyAn empirical ethical approach, combining a narrative review of qualitative studies on parents' and physicians' experiences of the pediatric oncology research practice, (...) and comparison of these experiences with existing theoretical ethical concepts about research. The use of empirical evidence enriches these concepts by taking into account the peculiarities that ethical challenges pose in practice.ResultsAnalysis of the 22 studies reviewed revealed that the integration of research and care has consequences for the informed consent process, the promotion of the child's best interests, and the role of the physician . True consent to research is difficult to achieve due to the complexity of research protocols, emotional stress and parents' dependency on their child's physician. Parents' role is to promote their child's best interests, also when they are asked to consider enrolling their child in a trial. Parents are almost never in equipoise on trial participation, which leaves them with the agonizing situation of wanting to do what is best for their child, while being fearful of making the wrong decision. Furthermore, a therapeutic misconception endangers correct assessment of participation, making parents inaccurately attribute therapeutic intent to research procedures. Physicians prefer the perspective of a therapist over a researcher. Consequently they may truly believe that in the research setting they promote the child's best interests, which maintains the existence of a therapeutic misconception between them and parents.ConclusionDue to the integration of research and care, their different ethical perspectives become intertwined in the daily practice of pediatric oncology. Increasing awareness of what this means for the communication between parents and physicians is essential. Future research should focus on efforts that overcome the problems that the synchronicity of research and care evokes. (shrink)
Since children are considered incapable ofgiving informed consent to participate inresearch, regulations require that bothparental permission and the assent of thepotential child subject be obtained. Assent andpermission are uniquely bound together, eachserving a different purpose. Parentalpermission protects the child from assumingunreasonable risks. Assent demonstrates respectfor the child and his developing autonomy. Inorder to give meaningful assent, the child mustunderstand that procedures will be performed,voluntarily choose to undergo the procedures,and communicate this choice. Understanding theelements of informed consent has been theparadigm for (...) assessing capacity to give assent.This method leaves the youngest, leastcognitively mature children vulnerable towaiver of assent and forced researchparticipation. Voluntariness can also becompromised by the influence of authorityfigures who can exert undue influence andcoerce children to participate in research. This paper discusses factors that may influencethe decision to give assent/permission,potential parent-child conflict in theassent/permission process and how it isresolved, and potential parental undueinfluence on research participation. Theseissues are illustrated with quotations drawnfrom a larger qualitative study of parentalpermission and child assent (data notpresented). We suggest a developmentalapproach, viewing assent as a continuum rangingfrom mere affirmation in the youngest childrento the equivalent of the informed consentprocess in the mature adolescent. (shrink)
There is a broadly held view that neonatologists are ethically obligated to act to override parental nontreatment decisions for imperiled premature newborns when there is a reasonable chance of a good outcome. It is argued here that three types of uncertainty undercut any such general obligation: (1) the vagueness of the boundary at which an infant’s deficits become so intolerable that death could be reasonably preferred; (2) the uncertainty about whether aggressive treatment will result in the survival of a reasonably (...) healthy child or, alternatively, the survival of a child with intolerable deficits; and (3) the inability to determine an acceptable ratio between the likelihoods of those two outcomes. It is argued that the broadly held view accords insufficient weight to the fact that newborn intensive care increases the likelihood of harm to the child by effecting survival with intolerable deficits. Though treatment may offer a reasonable chance of a good outcome, it is argued that there are situations in which neonatologists should nonetheless defer to parental nontreatment decisions. (shrink)
In der Medizin gehören Kinder neben Ausländern, Behinderten und psychiatrisch Erkrankten zu den besonders vulnerablen Patientengruppen. Im Folgenden soll die Frage nach der Würde der Kinder in medizinethischer Hinsicht behandelt werden. Dazu werden drei Thesen erläutert und begründet: (1.) das Prinzip der Menschenwürde kann nicht ganz außer Acht gelassen werden, wenn Kinder als Patienten in medizinethischer Hinsicht thematisiert werden; (2.) das Prinzip der Menschenwürde wird in der Medizinethik nicht schon vollständig durch die medizinethischen Prinzipien der Patientenautonomie und der Fürsorge für (...) die Patienten abgedeckt; (3.) die habituelle und bewusste Achtung der Würde des Menschen bringt immer wieder neue und bisher noch wenig beachtete Aspekte des medizinischen, therapeutischen und pflegerischen Umgangs mit Patienten und Kindern als Patienten ans Licht. Diskussionen über den Gehalt des Prinzips der Menschenwürde gehen nicht nur in der Medizinethik, sondern auch in anderen Bereichen der angewandten Ethik in der Regel von Erwachsenen aus. Erwachsene gelten als die paradigmatischen Subjekte und Objekte der Wahrnehmung, Zuschreibung und Anerkennung von Würde. Meistens denkt man nur an Erwachsene, wenn man darauf besteht, dass die menschliche Würde (1.) vom moralischen und rechtlichen Standpunkt aus grundsätzlich zu achten ist, (2.) unter bestimmten psychologischen, sozialen und politischen Umständen gefährdet ist und (3.) in bestimmten Handlungssituationen mit anderen ethischen Forderungen in Konflikt geraten kann. Bei Erwachsenen ist es relativ leicht, ethische Intuitionen darüber, ob in bestimmten medizinischen Handlungssituationen die Würde eines Menschen verletzt wird, zu formulieren und zu begründen. Denn bei Erwachsenen steht die Würdeverletzung in einem engen Zusammenhang mit der Berücksichtigung verschiedener ethischer Forderungen: (1.) nach Achtung der willentlichen Selbstbestimmung und der normativen Autonomie, (2.) nach Berücksichtigung von persönlichen Lebenszielen und Wertpräferenzen, (3.) nach Bewahrung von mutmaßlichen Lebenschancen (4.) nach Berücksichtigung personaler Bedürfnisse nach Anerkennung, Gegenseitigkeit, Intimität, Integrität, etc. sowie (5.) nach Wahrnehmung und Anerkennung der unverwechselbaren Individualität des Anderen. Die Angemessenheit und Erfüllbarkeit dieser ethischen Forderungen hängt nun aber von soziologischen und psychologischen Gegebenheiten ab, die bei Kindern je nach Altersgruppe und individueller Ausprägung nicht in gleicher Weise gegeben sind. Deswegen soll hier gezeigt werden, welche besondere und zusätzliche Rolle eine medizinethische Erinnerung an die Würde der Kinder im Spannungsfeld zwischen Autonomie und Fürsorge spielen kann. Dabei zeigt sich, dass es gerade die Achtung vor der Würde des Kindes ist, die uns überhaupt erst ermöglicht, das Kind als Kind und damit als ein eigenständiges Subjekt und als ein besonderes menschliches Wesen zu entdecken. (shrink)