This chapter highlighted some salient trends in pediatric ethicsEthics, pediatric from different parts of the globe. It is interesting to note that although diverse, there are many similarities between ethical challenges in pediatrics in different parts of the world.

There is an inconsistency in the ways that doctors make clinical decisions regarding the treatment of babies born extremely prematurely. Many experts now recommend that clinical decisions about the treatment of such babies be individualized and consider many different factors. Nevertheless, many policies and practices throughout Europe and North America still appear to base decisions on gestational age alone or on gestational age as the primary factor that determines whether doctors recommend or even offer life-sustaining neonatal intensive care treatment. These (...) policies are well intentioned. They aim to guide doctors and parents to make decisions that are best for the baby. That is an ethically appropriate goal. But in relying so heavily on gestational age, such policies may actually do the babies a disservice by denying some babies treatment that might be beneficial and lead to intact survival. In this paper, we argue that such policies are unjust to premature babies and ought to be abolished. In their place, we propose individualized treatment decisions for premature babies. This would treat premature babies as we treat all other patients, with clinical decisions based on an individualized estimation of likelihood that treatment would be beneficial. (shrink)

A recent American Academy of Pediatrics (AAP) clinical report states that it is an acceptable option for pediatric care clinicians to dismiss families who refuse vaccines. This is a clear shift in guidance from the AAP, which previously advised clinicians to “endeavor not to discharge” patients solely because of parental vaccine refusal. While this new policy might be interpreted as encouraging or recommending dismissal of vaccine-refusing families, it instead expresses tolerance for diverse professional approaches. This is unlike the earlier guidance, (...) which promoted a unified response to vaccine refusal. In fact, the resolution (which was presented at the AAP’s Annual Leadership Forum) that led to this clinical report also calls on the AAP “to continue to support pediatricians who continue to provide health care to children of parents who refuse to immunize their children.” However, the shift toward embracing dismissal as an acceptable response to vaccine refusal may erode professional solidarity. Pediatricians are clearly divided on this question; most do not dismiss vaccine-refusing families. By declaring that dismissal is an acceptable option, the AAP has sanctioned a practice that may be unfair to the many clinicians who do not dismiss these families. Clinicians who adopt a policy of dismissal toward families who refuse vaccines might impose burdens on colleagues who remain willing to offer care to those families, and their actions might show insufficient commitment to the efforts of their profession to promote health for all children. (shrink)

Marshall and O’Leary’s thoughtful response to our article suggests that dismissal policies are ethically justifiable because they might induce parents to immunize their children. This outcome is conceivable, but we have only anecdotes about how often it occurs. Such evidence became the thin reed on which the American Academy of Pediatrics rested its new policy of tolerating the practice of dismissing vaccine-hesitant parents. It seems likely that relatively few parents would agree to vaccinate because they were threatened with dismissal. Other (...) heavy-handed interventions have failed to move most such parents. When Washington state made nonmedical exemptions more difficult to obtain, nearly two-thirds of vaccine refusers were unmoved and their children remained unvaccinated. Even if dismissal threats led some parents to accept vaccines, this alone would not justify a dismissal policy. The benefits would still have to be weighed against the risks of dismissing those families who do not change their minds. (shrink)

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)

A commentary on “Were There ‘Additional Foreseeable Risks’ in the SUPPORT Study?,” by Henry J. Silverman and Didier Dreyfuss; “SUPPORT: Risks, Harms, and Equipoise,” by Robert M. Nelson; “The Controversy over SUPPORT Continues and the Hyperbole Increases,” by Alan R. Fleischman; and “SUPPORT and Comparative Effectiveness Trials: What's at Stake?,” by Lois Shepherd, all in the January‐February 2015 issue.

Parents respond to the death of a child in very different ways. Some parents may be violent or angry, some sad and tearful, some quiet and withdrawn, and some frankly delusional. We present a case in which a father’s reaction to his daughter’s death is a desire to protect his wife from the stressful information. The wife is in the second trimester of a high-risk pregnancy and so is particularly fragile. We asked pediatricians and bioethicists to discuss the ways in (...) which they might respond to the father’s understandable but troubling request. -/- The death of a young child is one of the most stressful events that can happen to parents. The stress of such a loss is compounded if the parents are in a foreign country, far from home, and without a network of family and friends to provide social support. The stress may be more difficult to deal with if the parents have acute health problems of their own. In this month’s “Ethics Rounds,” we present a case in which a father whose daughter died requested that the doctors delay telling his wife. His reason: She is pregnant, in the second trimester, and on bed rest because of preterm labor. He does not want to add to her stress. We asked both pediatricians and bioethicists to respond to this request. (shrink)

Liver transplantation is the treatment of choice for many forms of liver disease. Unfortunately, the scarcity of cadaveric donor livers limits the availability of this technique. To improve the availability of liver transplantation, surgeons have developed the capability of removing a portion of liver from a live donor and transplanting it into a recipient. A few liver transplants using living donors have been performed worldwide.Our purpose was to analyze the ethics of liver transplants using living donors and to propose guidelines (...) for the procedure before it was introduced in the United States. We used a process of research ethics consultation that involves a collaboration between clinical investigators and clinical ethicists. We concluded that it was ethically appropriate to perform liver transplantation using living donors in a small series of patients on a trial basis, and we published our ethical guidelines in a medical journal before the procedure was introduced. We recommend this prospective, public approach for the introduction of other innovative therapies in medicine and surgery. (shrink)

Scientists and laypeople alike use the sense of understanding that an explanation conveys as a cue to good or correct explanation. Although the occurrence of this sense or feeling of understanding is neither necessary nor sufficient for good explanation, it does drive judgments of the plausibility and, ultimately, the acceptability, of an explanation. This paper presents evidence that the sense of understanding is in part the routine consequence of two well-documented biases in cognitive psychology: overconfidence and hindsight. In light of (...) the prevalence of counterfeit understanding in the history of science, I argue that many forms of cognitive achievement do not involve a sense of understanding, and that only the truth or accuracy of an explanation make the sense of understanding a valid cue to genuine understanding. (shrink)

The growth of managed care was accompanied by concern about the impact that changes in health care organization would have on the doctor-patient relationship. We now are in a “post-managed care era,” where some of these changes in health care delivery have come to pass while others have not. A re-examination of the DPR in this setting suggests some surprising results. Rather than posing a new and unprecedented threat, managed care was simply the most recent of numerous strains on the (...) DPR that have occurred throughout the century. These strains are a constant, inevitable consequence of the varying needs and concerns of patient and physicians as they seek to balance their desires for a certain type of DPR with their simultaneous desire for other aspects of care such as lower costs, greater technological sophistication, and improved outcomes. (shrink)

Most bioethicists and professional medical societies condemn the practice of ?slow codes.? The American College of Physicians ethics manual states, ?Because it is deceptive, physicians or nurses should not perform half-hearted resuscitation efforts (?slow codes?).? A leading textbook calls slow codes ?dishonest, crass dissimulation, and unethical.? A medical sociologist describes them as ?deplorable, dishonest and inconsistent with established ethical principles.? Nevertheless, we believe that slow codes may be appropriate and ethically defensible in situations in which cardiopulmonary resuscitation (CPR) is likely (...) to be ineffective, the family decision makers understand and accept that death is inevitable, and those family members cannot bring themselves to consent or even assent to a do-not-resuscitate (DNR) order. In such cases, we argue, physicians may best serve both the patient and the family by having a carefully ambiguous discussion about end-of-life options and then providing resuscitation efforts that are less vigorous or prolonged than usual. (shrink)

The Surfactant, Positive Pressure, and Oxygenation Randomized Trial (SUPPORT) has been the focal point of many different criticisms regarding the ethics of the study ever since publication of the trial's findings in 2010 and 2012. In this article, we focus on a concern that the technical design and implementation details of the study were ethically flawed. While the federal Office Human Research Protections focused on the consent form, rather than on the study design and implementation, OHRP's critiques of the consent (...) form reveal views about the study design and implementation that we believe are fundamentally flawed. These criticisms about the design and implementation of SUPPORT, if generalized, become relevant concerns about these aspects of many comparative effectiveness research studies.Our analytical approach will be to use SUPPORT as a prime example of comparative effectiveness research and show why it challenges some prevailing assumptions about the riskiness of research. We will address five aspects of the study design and implementation: 1) randomization, 2) treatment by protocol, 3) choice of endpoints, 4) lack of a “standard care” control group, and 5) the use of altered oximeters. Examining these aspects will allow us to answer two specific central questions. The first is a methodological question with ethical implications: was the study designed in such a way as to answer the primary study question? The second question is whether the study design added or decreased risk to the babies enrolled in the study compared to babies who were not in the study. (shrink)

Psychiatric diagnosis and prognosis is fraught with important philosophical and conceptual problems. This chapter focuses on some epistemological issues and moral issues that arise in contemporary psychiatric practice. It examines various clinical and actuarial techniques for psychiatric diagnosis, ordered very loosely in terms of how "structured" or "automated" they are. The chapter makes the case for assessing psychiatric treatments with controlled experiments, raises several epistemological dangers that arise from relying on uncontrolled investigations, and considers some of the unique methodological and (...) ethical issues that arise when trying to assess talk therapy. (shrink)

There is a standard story told about the rise and fall of ordinary language philosophy: it was a widespread, if not dominant, approach to philosophy in Great Britain in the aftermath of World War II up until the early 1960s, but with the development of systematic approaches to the study of language—formal semantic theories on one hand and Gricean pragmatics on the other—ordinary language philosophy more or less disappeared. In this paper we present quantitative evidence to evaluate the standard story (...) of the rise and fall of ordinary language philosophy, building on the topic model of over 30,000 philosophy articles in Weatherson (2022). Using a combination of qualitative judgment and a topic-model-based measurement of similarity between individual articles, we find evidence that supports the first part of the standard story, according to which ordinary language philosophy arises in the 1940s, peaks between the early 1950s and the late 1960s, and then rapidly declines. But we argue that there is also evidence of a "new wave" of ordinary language philosophy in the early 21st century that defies the second part of the standard story. (shrink)

It is astoundingly difficult—and may not be desirable—to be rational about decisions to let our babies die. Parents in these situations are caught in a maelstrom of overpowering and often contradic...

Physicians have special professional obligations to respond to medical emergencies. A bioterrorism attack would be a medical emergency. Thus, it seems that physicians would have an obligation to respond to a bioterrorist attack. However, the scope of those obligations, and their limits, are vexed topics. General rules may be comforting but the details and nuances of particular situations will always be relevant.

Many scientists and doctors hope that affordable genome sequencing will lead to more personalized medical care and improve public health in ways that will benefit children, families, and society more broadly. One hope in particular is that all newborns could be sequenced at birth, thereby setting the stage for a lifetime of medical care and self‐directed preventive actions tailored to each child's genome. Indeed, commentators often suggest that universal genome sequencing is inevitable. Such optimism can come with the presumption that (...) discussing the potential limits, cost, and downsides of widespread application of genomic technologies is pointless, excessively pessimistic, or overly cautious. We disagree. Given the pragmatic challenges associated with determining what sequencing data mean for the health of individuals, the economic costs associated with interpreting and acting on such data, and the psychosocial costs of predicting one's own or one's child's future life plans based on uncertain testing results, we think this hope and optimism deserve to be tempered.In the analysis that follows, we distinguish between two reasons for using sequencing: to diagnose individual infants who have been identified as sick and to screen populations of infants who appear to be healthy. We also distinguish among three contexts in which sequencing for either diagnosis or screening could be deployed: in clinical medicine, in public health programs, and as a direct‐to‐consumer service. Each of these contexts comes with different professional norms, policy considerations, and public expectations. Finally, we distinguish between two main types of genome sequencing: targeted sequencing, where only specific genes are sequenced or analyzed, and whole‐exome or whole‐genome sequencing, where all the DNA or all the coding segments of all genes are sequenced and analyzed.In a symptomatic newborn, targeted or genome‐wide sequencing can help guide other tests for diagnosis or for specific treatment that is urgently needed. Clinicians use the infant's symptoms (or phenotype) to interrogate the sequencing data. These same complexities and uncertainties, however, limit the usefulness of genome‐wide sequencing as a population screening tool. While we recognize considerable benefit in using targeted sequencing to screen for or detect specific conditions that meet the criteria for inclusion in newborn screening panels, use of genome‐wide sequencing as a sole screening tool for newborns is at best premature. We conclude that sequencing technology can be beneficially used in newborns when that use is nuanced and attentive to context. (shrink)

Written with poignancy and compassion, Do We Still Need Doctors? is a personal account from the front lines of the moral and political battles that are reshaping America's health care system. Using compelling firsthand experiences, clinical vignettes, and moral arguments, John D. Lantos, a pediatrician, asks whether, as we proceed with the redesign of our health care system, doctors will -- or should -- continue to fulfill the roles and responsibilities that they have in the past. Interspersing moving personal stories (...) of his young patients suffering from AIDS, cancer, and other chronic or terminal illnesses with his own stirring dilemmas of truth telling, creative navigation of HMO bureaucracy, and reflections on the identity crisis of medical education, Dr. Lantos reveals how changes in out health care system and new technologies are fostering new ways of understanding and responding to illness. He taps into the public's sense of wanting doctors and hospitals to do something other than what they do now and the frustrating disagreement about what they should do in the future. (shrink)

Many babies with trisomy 13 and 18 die in the first year of life. Survivors all have severe cognitive impairment. There has been a debate among both professionals and parents about whether it is appropriate to provide life-sustaining interventions to babies with these serious conditions. On one side of the debate are those who argue that there is no point in providing invasive, painful, and expensive procedures when the only outcomes are either early death or survival with severe cognitive impairment. (...) Others suggest that, although mortality is high and cognitive impairment universal, babies with these conditions have an acceptable quality of life. In this paper, we will discuss both points of view. We will review the ways in which these conditions are portrayed in pediatrics textbooks and on social media sites that offer support to parents. We will then suggest an appropriate way to deal with clinical decisions for babies with these trisomies. (shrink)

Collection of essays on the connection between medicine and literature and how novelists and physicians are both, in a sense, diagnosticians; the book focuses, in particular, on Walker Percy, a writer who had trained as a pathologist.

Dominic Wilkinson suggests that one of Schubert’s songs has relevance for neonatologists today. In the song, Schubert suggests that death sometimes comes as a friend. Wilkinson ponders whether the song has a message for doctors and parents, who sometimes struggle to figure out whether death is an enemy or a friend to a dying baby. Wilkinson reflects on the case of baby ‘Hal’, who was born with serious cardiomyopathy. Hal’s parents and doctors disagree about whether to withdraw life-support. Through his (...) recreations of their discussions, Wilkinson shows how hard it is to confront—and maybe even welcome—death for a child. While adults often frame their own decision to forego life-sustaining treatment with thoughts that they have lived a good life, death in childhood can seem unfair because it robs the child of their opportunity to live a good or completed life. Much as we try, we cannot really imagine what a critically ill neonate experiences or desires. We have very little insight into Hal’s interests or subjective experience. Without direct access to the child’s experience, it is impossible to know whether, like an adult, a child would choose to allow death to occur. We cannot verify the claim that the child’s death was good in the sense that it was good for them. Wilkinson proposes that a prolonged dying process …. (shrink)

Neonatal intensive care units (NICUs) and medical intensive care units (MICUs) are both very expensive. The cost-effectiveness of NICUs has been extensively evaluated, as has the long-term outcomes of subpopulations of NICU patients. NICU treatment is among the most cost-effective of high-tech interventions. And most patients do well. There are fewer evaluations of cost-effectiveness in the MICU and almost no long-term outcome studies. Policymakers who scrutinize expensive high-tech interventions would do well to study the examples found in the NICU.

I was recently invited to talk about ethics with the staff of a level‐three neonatal intensive care unit. They presented a case featuring a full‐term baby born by emergency caesarean‐section after a cord prolapse that caused prolonged anoxia. Her initial pH was 6.7. She was intubated and resuscitated in the delivery room. Her Apgar score remained at 1 for ten minutes. Further evaluation over the next two days revealed severe brain damage. Her prognosis was dismal.The doctors recommended a do‐not‐resuscitate order. (...) The parents agreed. The doctors suggested a gastrostomy tube. The parents disagreed. Instead, they requested that fluid and nutrition be discontinued. The emotions in the room, as we started to discuss the case, were strong and discordant. Eventually, the conversation wound down. They turned, expectantly, to the visiting bioethicist. (shrink)

In this paper, we examine healthcare organizations’ responses to high profile cases of doctor–parent disagreement. We argue that, once a conflict crosses a certain threshold of public interest, the stakes of the disagreement change in important ways. They are no longer only the stakes of the child’s interests or who has decision‐making authority, but also the stakes of public trust in healthcare practitioners and organizations and the wide scale spread of medical misinformation. These higher stakes call for robust organization‐level responses. (...) There are responsible and thoughtful ways for healthcare organizations to directly engage with these cases. Hospitals should seek an alliance with the parents around the goal of public discussion and utilize web‐based platforms to provide the public with information about medical conditions, experimental treatments, and how clinical ethics deliberation in hospitals works. We outline five important lessons for healthcare organizations to keep in mind when responding to such cases. Approached with care, these cases could become “teachable moments” for both healthcare organizations and society. (shrink)

The focus of this study was to analyze the content, distribution, and comparative genome relationships of 996 chromosome bin-mapped expressed sequence tags accounting for 2266 restriction fragments on the homoeologous group 3 chromosomes of hexaploid wheat. Of these loci, 634, 884, and 748 were mapped on chromosomes 3A, 3B, and 3D, respectively. The individual chromosome bin maps revealed bins with a high density of mapped ESTs in the distal region and bins of low density in the proximal region of the (...) chromosome arms, with the exception of 3DS and 3DL. These distributions were more localized on the higher-resolution group 3 consensus map with intermediate regions of high-mapped-EST density on both chromosome arms. Gene ontology classification of mapped ESTs was not significantly different for homoeologous group 3 chromosomes compared to the other groups. A combined analysis of the individual bin maps using 537 of the mapped ESTs revealed rearrangements between the group 3 chromosomes. Approximately 232 of the consensus mapped ESTs matched sequences on rice chromosome 1 and revealed large- and small-scale differences in gene order. Of the group 3 mapped EST unigenes ∼21 and 32% matched the Arabidopsis coding regions and proteins, respectively, but no chromosome-level gene order conservation was detected. (shrink)

Providing care for a baby born at 24 weeks of gestation in a neonatal intensive care unit is one of the most expensive medical treatments in the United States today. The cost can easily run over $300,000 for one baby. Furthermore, many extremely premature babies who survive are left with chronic diseases or disabilities that require further medical expenses and other specialized services throughout childhood or throughout life. When all these expenditures are totaled up, it can seem that neonatal intensive (...) care is just not worth it.Concerns about the cost-effectiveness of NICUs have led to persistent critical scrutiny of these specialized units by physicians, economists, and epidemiologists. These analysts have examined NICUs and the patients in them in order to determine whether there are subpopulations of babies for whom neonatal intensive care is so demonstrably ineffective or so costly that it should not be provided. Such examinations have been carried out in many different countries, at many times over the last 30 years, and have analyzed outcomes for babies by gestational age, birthweight, and illness severity. (shrink)

There is a debate at the highest levels of government about how to classify the risks of research studies that evaluate therapies that are in widespread use. Should the risks of those therapies be considered as risks of research that is designed to evaluate those therapies? Or not? The Common Rule states, “In evaluating risks and benefits, the IRB should consider only those risks and benefits that may result from the research.” ). By contrast, the Office of Human Research Protections, (...) in a proposed “guidance” states, “The reasonably foreseeable risks of research include already-identified risks of the standards of care being evaluated as a purpose of the research.”.In this paper, I argue that the Common Rule got it right and OHRP got it wrong. When treatments are in widespread use, the risks of those treatments are ever-present for all patients. By enrolling in formal studies that use rigorous methods to compare one treatment with another and that carefully monitor outcomes and adverse events, patients are protected from the risks of idiosyncratic practice variation. Their risks are decreased, rather than increased.If OHRP's approach becomes the law of the land, patients will be misinformed about the relative risks of treatment and research in ways that undermine autonomy rather than promoting it and that make truly informed consent impossible. (shrink)

Five years ago, remarkable animal experiments on artificial womb technology (AWT) at Children’s Hospital of Philadelphia (CHOP) got us thinking about the ethical for premature babies. We recognized...