Our aim in this article is to bring some clarity to the clinical ethics expertise debate by critiquing and replacing the taxonomy offered by the Core Competencies report. The orienting question for our taxonomy is: Can clinical ethicists offer justified, normative recommendations for active patient cases? Views that answer “no” are characterized as a “negative” view of clinical ethics expertise and are further differentiated based on (a) why they think ethicists cannot give justified normative recommendations and (b) what they think (...) ethicists can offer, if they cannot offer recommendations. Views that answer “yes” to the orienting question are characterized as a “positive” view of clinical ethics expertise. Positive views are distinguished according to four additional questions. First (P1), how are those recommendations generated? Second (P2), what is the nature of the recommendations? Third (P3), we ask, how are the recommendations justified? And finally (P4), how are the recommendations communicated? (shrink)

Legal precedent, professional‐society statements, and even many medical ethicists agree that some situations may call for a clinician to engage in an act of lying or nonlying deception of a patient or patient's family member. Still, the moral terrain of clinical deception is largely uncharted, and when it comes to practical guidance for clinicians, many might think that ethicists offer nothing more than the rule never to deceive. This guidance is insufficient to meet the real‐world demands of clinical practice, and (...) this article endeavors to articulate a framework to help clinicians better navigate the ethics of clinical deceit. The framework articulates four morally relevant dimensions of a potential deceptive act that should be examined to better determine the moral justification that might be required: the target of the act, the nature of the information, the nature of the act, and the context of the act. (shrink)

This article argues that while the presence and influence of “futility” as a concept in medical decision-making has declined over the past decade, medicine is seeing the rise of a new concept with similar features: suffering. Like futility, suffering may appear to have a consistent meaning, but in actuality, the concept is colloquially invoked to refer to very different experiences. Like “futility,” claims of patient “suffering” have been used (perhaps sometimes consciously, but most often unconsciously) to smuggle value judgments about (...) quality of life into decision-making. And like “futility,” it would behoove us to recognize the need for new, clearer terminology. This article will focus specifically on secondhand claims of patient suffering in pediatrics, but the conclusions could be similarly applied to medical decisions for adults being made by surrogate decision-makers. While I will argue that suffering, like futility, is not sufficient wholesale justification for making unilateral treatment decisions, I will also argue that claims of patient suffering cannot be ignored, and that they almost always deserve some kind of response. In the final section, I offer practical suggestions for how to respond to claims of patient suffering. (shrink)

In their article, Nielsen Busch and Mjaaland defend the moral permissibility of cDCD, suggesting that much of the controversy around this donation practice has been the result of a misinterpretatio...

Whether adolescents should be allowed to make their own medical decisions has been a topic of discussion in bioethics for at least two decades now. Are adolescents sufficiently capacitated to make their own medical decisions? Is the mature-minor doctrine, an uncommon legal exception to the rule of parental decision-making authority, something we should expand or eliminate? Bioethicists have dealt with the curious liminality of adolescents—their being neither children nor adults—in a variety of ways. However, recently there has been a trend (...) to rely heavily, and often exclusively, on emerging neuroscientific and psychological data to answer these questions. Using data from magnetic resonance imaging and functional MRI studies on the adolescent brain, authors have argued both that the adolescent brain isn't sufficiently mature to broadly confer capacity on this population and that the adolescent brain is sufficiently mature to assume adolescent capacity. Scholars then accept these data as sufficient for concluding that adolescents should or should not have decision-making authority. Two critical mistakes are being made here. The first is the expectation that neuroscience or psychology is or will be able to answer all our questions about capacity. The second, and more concerning, mistake is the conflation of decision-making capacity with decision-making authority. (shrink)

In accordance with standards published by the American Society for Bioethics and Humanities (ASBH), ethics consultants are expected to provide recommendations that align with scholarly literature, professional society statements, law, and policy. However, there are no studies to date that characterize the specific references that ethics consultants and educators use to inform their work. To address this gap, a convenience sample of clinical ethics consultants and educators was surveyed online through two major listservs for clinical ethics, the ASBH Clinical Ethics (...) Consultation Affinity Group (CECAG) and the Association of Bioethics Program Directors (ABPD). Ninety-five ethics consultants and/or educators with diverse educational background, credentials, and experience provided responses. In total, 451 references, 315 of which were unique, were reported. These references were broken into 6 categories after analysis: bioethics literature (divided into articles and books), professional society documents (divided into professional society statements and codes of ethics), federal/state/uniform/case law, hospital/health system policies, official religious teachings, and other. We found extensive variation and minimal overlap in the references respondents used for ethics consultation and education, even when referring to the same topics. Future research directions should include conducting more systematic efforts to characterize the references used by ethics consultants across the US; determining whether demographic characteristics of consultants influence the references used; and ascertaining whether the variation in references used reflects genuine disagreements in consultants’ and educators’ bioethical analysis or recommendations. (shrink)

We argue against Christopher Meyers’s call for clinical ethicists to participate in deceiving patients, surrogate decision-makers, or family members. While we acknowledge that some forms of deception may be ethically appropriate in highly circumscribed situations, the type of case Meyers describes as involving justifiable deception differs in at least two important ways. First, Meyers fails to distinguish acts of deception based on the critical feature of who is being deceived—patient, surrogate, or family member—and the overarching duty to respect the autonomy (...) of relevant decision-makers to make rationally-informed decisions. Second, Meyers’s analysis relies on an assessment of harm, a value-laden concept which health care professionals and ethicists should not presumptively assess without considering how the patient, surrogate, or family might assess specific harms. (shrink)

This article enumerates and critically examines the potential grounds on which we might treat the case of a patient with an advance directive who attempted suicide, differently from one whose injuries were the result of an accident. Grounds for differentiation are distilled into two potential justifications. The first addresses the concern that withholding or withdrawing care from a patient with self-inflicted injuries would be aiding and abetting suicide. The second examines concerns about the patient’s decisionmaking capacity. Ultimately, it is argued (...) that while there might be legitimate reasons to hold the advance directive of a suicidal patient to a different standard of scrutiny, the fact that the patient’s medical state was self-inflicted should not, in and of itself, necessarily invalidate the guidance of the directive. Finally, four practical recommendations are offered for negotiating similar cases. (shrink)

Hastings Center Report, Volume 52, Issue 1, Page 12-14, January/February 2022.

Teaching healthcare ethics at the doctoral level presents a particular challenge. Ethics is often taught to medical students, but rarely is medicine taught to graduate students in health care ethics. In this paper, Medicine for Ethicists [MfE] — a course taught both didactically and experientially — is described. Eight former MfE students were independently interviewed in a semi-structured, open-ended format regarding their experience in the experiential component of the course. Themes included concrete elements about the course, elements related to the (...) broader PhD student learning experience, and themes related to the students’ past and future career experiences. Findings are related to the educational philosophy of John Dewey and David Kolb’s experiential learning theory. Broader implications of this work are explored. (shrink)

This article describes the process engaged by 17 expert scholars in the development of a set of six consensus recommendations about the normative foundations of pediatric decision-making. The process began with a robust pre-reading assignment, followed by three days of in-person symposium discussions that resulted in a publication in _Pediatrics_ entitled “Pediatric Decision-Making: Consensus Recommendations” (Salter et al. 2023). This article next compares the six recommendations to existing statements about pediatric decision-making (specifically those developed by the American Academy of Pediatrics), (...) highlighting similarities and differences. Finally, the article discusses the value of finding consensus in the field of pediatric bioethics. (shrink)

This article critically examines, and ultimately rejects, the best interest standard as the predominant, go-to ethical and legal standard of decision making for children. After an introduction to the presumption of parental authority, it characterizes and distinguishes six versions of the best interest standard according to two key dimensions related to the types of interests emphasized. Then the article brings three main criticisms against the best interest standard: (1) that it is ill-defined and inconsistently appealed to and applied, (2) that (...) it is unreasonably demanding and narrow, and (3) that it fails to respect the family. Finally, it argues that despite the best interest standard’s potent rhetorical power, it is irreparably encumbered by too much inconsistency and confusion and should be rejected. (shrink)

Through an exploration of the experience of severe and profound intellectual disability, this essay will attempt to expose the predominant, yet usually obscured, medical anthropology of the child and examine its effects on pediatric bioethics. I will argue that both modern western society and modern western medicine do, actually, have a robust notion of the child, a notion which can find its roots in three influential thinkers: Aristotle, Immanuel Kant and Jean Piaget. Together, these philosophers offer us a compelling vision: (...) the child is primarily a future rational, autonomous adult. While this tacit understanding has arguably widespread effects on such things as our concept of good parenting, of proper schooling, and so on, I will focus on the effect is has on the treatment of children with severe developmental disabilities. When examined in light of this population, the dominant medical anthropology of the child will be shown to be deficient. Instead, I argue for an expansion—indeed, a full reimagining—of our notions of childhood, not only to re-infuse dignity into the lives of children with SDD, but to better represent the goods of childhood, generally. (shrink)

This article examines the role of context in the development and deployment of standards of medical decision-making. First, it demonstrates that bioethics, and our dominant standards of medical decision-making, developed out of a specific historical and philosophical environment that prioritized technology over the person, standardization over particularity, individuality over relationship and rationality over other forms of knowing. These forces de-contextualize the patient and encourage decision-making that conforms to the unnatural and contrived environment of the hospital. The article then explores several (...) important differences between the home health care and acute care settings. Finally, it argues that the personalized, embedded, relational and idiosyncratic nature of the home is actually a much more accurate reflection of the context in which real people make real decisions. Thus, we should work to “re-contextualize” patients, in order that they might be better equipped to make decisions that harmonize with their real lives. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Introduction to the Special Issue on Pediatric Decision-MakingErica K. SalterUnlike in the traditional decisional dyad in adult-based care, pediatric decision-making typically involves a triadic relationship among the patient, their parents, and the health-care providers. This complex relationship raises questions and concerns regarding each party’s expectations, obligations, and authority. For example, should a parent be allowed to withhold a poor diagnosis from an adolescent patient? Should an HLA-matched six-year-old sister (...) be permitted to serve as a bone marrow donor for her older sibling with lysosomal storage disease? Or, should parents be given decisional authority to consent to gender-affirming care for an adolescent with gender dysphoria? Cases like these are among the most ethically challenging decisions faced by parents and health-care providers because they present competing interests and values, and it’s not always clear what is in the best interests of the child.In the context of American medicine, the best interest standard has been identified as the primary ethical and legal guide for decision-making. In its most prominent form, the best interest standard requires parents and pediatric practitioners to choose the medical treatment that maximizes benefits and minimizes harms to the particular child in question. However, over the past few decades, the standard has come under significant scrutiny, with discussions and debate in the academic bioethics literature asking whether the standard is able to serve the [End Page 181] purposes it is thought to serve and whether alternative standards might be better suited to the task(s). Despite vigorous interest in these issues, the academic literature did not seem to generate any sense of identifiable consensus about how others ought to make health-care decisions on behalf of children.Thus, in June 2022, 17 scholar-experts on pediatric decision-making standards gathered in St. Louis, MO, for a three-day symposium of discussion and consensus-building. The participating authors represented different disciplinary perspectives and different viewpoints in the debate about guidance principles that underlie pediatrics. Despite apparent disagreement about such standards in the literature, the group was able to generate a set of six consensus-based recommendations (see Table 1) for pediatric decision-making. These recommendations, as well as their application, justification, and limitations, were published as a special article in Pediatrics in August 2023 (Salter et al. 2023), which was composed with the primary goals of accessibility, teachability, and implementability for practicing pediatric clinicians. Click for larger view View full resolutionTable 1.Six consensus recommendations for pediatric decision-makingWhile the group was able to find agreement about these six central principles of pediatric decision-making, there remained several related issues that were outside of the scope of the symposium aims. For example, should these recommendations apply to neonates, children in state custody, or adolescents, and if so, how would their application be operationalized? What specific conditions should justify state intervention on parental authority? How should parents and health-care providers think about obligations to siblings in health-care decisions? This [End Page 182] special issue of Perspectives in Biology and Medicine provides a forum for our authors and collaborators to further explore these, and other, important questions.The issue opens with a piece by the symposium organizers and editors of this special issue, Erica Salter, Lainie Friedman Ross, and D. Micah Hester, describing the symposium’s inspiration and design, its execution, and the implications it might have for pediatric ethics. This contribution compares the six symposium recommendations with existing statements about pediatric decision-making, in particular the statements developed by the American Academy of Pediatrics (AAP). In “How We Found Consensus on Pediatric Decision-Making and Why It Matters,” readers will find a detailed account of the process engaged to develop the six consensus-based recommendations, as well as a discussion of the value and limitations of such a process, which may serve as a model of consensus-building useful for other unsettled topics of interest in the bioethics community.The issue’s second article, “Childhood Interests: What They Are, and Why It Matters,” by Johan Bester and Jeffrey Blustein, dives into the conceptual foundation of the symposium’s first two recommendations. This... (shrink)

Objectives To characterize the prevalence and content of pediatric triage policies.Methods We surveyed and solicited policies from U.S. hospitals with pediatric intensive care units. Policies were analyzed using qualitative methods and coded by 2 investigators.Results Thirty-four of 120 institutions (28%) responded. Twenty-five (74%) were freestanding children’s hospitals and 9 (26%) were hospitals within a hospital. Nine (26%) had approved policies, 9 (26%) had draft policies, 5 (14%) were developing policies, and 7 (20%) did not have policies. Nineteen (68%) institutions shared (...) their approved or draft policy. Eight (42%) of those policies included neonates. The polices identified 0 to 5 (median 2) factors to prioritize patients. The most common factors were short- (17, 90%) and long- (14, 74%) term predicted mortality. Pediatric scoring systems included Pediatric Logistic Organ Dysfunction-2 (12, 63%) and Score for Neonatal Acute Physiology and Perinatal Extensions-II (4, 21%). Thirteen (68%) policies described a formal algorithm. The most common tiebreakers were random/lottery (10, 71%) and life cycles (9, 64%). The majority (15, 79%) of policies specified the roles of triage team members and 13 (68%) precluded those participating in patient care from making triage decisions.Conclusions While many institutions still do not have pediatric triage policies, there appears to be a trend among those with policies to utilize a formal algorithm that focuses on short- and long-term predicted mortality and that incorporates age-appropriate scoring systems. Additional work is needed to expand access to pediatric-specific policies, to validate scoring systems, and to address health disparities. (shrink)

In “Acquiescence is Not Agreement,” Caruso Brown (2022) offers a comprehensive framework for identifying and empowering marginalized voices in pediatric decision-making. She does so through both a...

From growth attenuation therapy for severely developmentally disabled children to the post-natal management of infants with trisomy 13 and 18, pediatric treatment decisions regularly involve assessments of the probability and severity of a child’s disability. Because these decisions are almost always made by surrogate decision-makers and because these decision-makers must often make decisions based on both prognostic guesses and potentially biased quality of life judgments, they are among the most ethically complex in pediatric care. As the introduction to HEC Forum’s (...) special thematic issue on Childhood and Disability, this article orients the reader to the history of bioethics’ relationship to both pediatric ethics and disability studies and introduces the issue’s five manuscripts. As clinicians, disability scholars, philosophers and clinical ethicists writing on various aspects of pediatric disability, the articles’ authors all invite readers to dig beneath an overly-simplified version of what disability might mean to children and families and instead embrace a posture of genuine humility, recognizing both the limits and harms of traditional medical and bioethical responses to the disabled child. (shrink)

Cases like Mr. Walker’s are distressing, and for good reason. The Supreme Court has given clear moral and legal reasons to distinguish life-saving treatment refusal from suicide, and physicians are...

This case analysis examines the pediatric clinical ethics issues of adolescent autonomy and parental authority in medical decision–making. The case involves a dying adolescent whose parents request that the medical team withhold diagnosis and prognosis information from the patient. The analysis engages two related ethical questions: Should Annie be given information about her medical condition? And, who is the proper decision–maker in Annie’s case? Ultimately, four practical recommendations are offered.

In this commentary, the author discusses two strengths and two weaknesses of “Better than Best (Interest Standard) in Pediatric Decision-Making,” in which Lainie Friedman Ross critiques the best interest standard and proposes her own model of constrained parental autonomy (CPA) as a preferable replacement for both an intervention principle and a guidance principle in pediatric decision making. The CPA’s strengths are that it detaches from the language and concept of “best” and that it better respects the family as a distinct (...) and intimate decision-making unit. The first weakness of the framework, as an intervention principle, is that because it imports a Rawlsian understanding of basic interests, it neglects certain populations of children (for example, children with intellectual disabilities). The second weakness is that, as a guidance principle, it is unclear what actual guidance the CPA is positioned to offer and how that guidance would be justified. To conclude, this commentary offers suggestions for what should be required of both an intervention principle and a guidance principle in pediatric decision making. (shrink)