How We Found Consensus on Pediatric Decision-Making and Why It Matters.

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.

Pediatric Decision Making: Consensus Recommendations.

Despite apparent disagreement in the scholarly literature on standards of pediatric decision making, a recognition that similar norms underpin many of the dominant frameworks motivated a June 2022 symposium "Best Interests and Beyond: Standards of Decision Making in Pediatrics" in St Louis, MO. Over the course of this 3-day symposium, 17 expert scholars (see author list) deliberated on the question "In the context of US pediatric care, what moral precepts ought to guide parents and clinicians in medical decision making for children?" The symposium and subsequent discussion generated 6 consensus recommendations for pediatric decision making, constructed with the primary goals of accessibility, teachability, and feasibility for practicing clinicians, parents, and legal guardians. In this article, we summarize these recommendations, including their justification, limitations, and remaining concerns.

Mapping the Moral Terrain of Clinical Deception.

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.

Triage Policies at U.S. Hospitals with Pediatric Intensive Care Units.

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.

Reasonableness as a Relational Principle: An Integrated Framework for Pediatric Decision-Making.

We modified and applied the surrogate decision-making framework of Buchanan and Brock for pediatrics, and present an integrated framework of pediatric health care decision-making, specifying authority and intervention principles, 2 guidance principles, and an additional category of relational principles, governing stakeholder interactions.

"We have nothing left to bury."

After miscarrying in the hospital at eleven weeks, a patient gratefully accepts the hospital's offer to take advantage of a program for low-income patients that provides burial for fetal remains and a memorial plaque for the gravesite. However, a hospital employee accidentally incinerates the remains, and the error is not discovered until after the ashes are discarded. Two commentaries offer opposing arguments in response to the question whether, to avoid adding to the patient's grief, it is ethically permissible for the clinicians not to disclose the error to her and to proceed with having the name put on a plaque at the burial ground.

The new futility? The rhetoric and role of "suffering" in pediatric decision-making.

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.

When Specialty Care Is Unavailable to Rural Families.

We present the case of a 2-year-old boy with epidermolysis bullosa and supraglottic stenosis whose parents refuse an elective tracheostomy because of the significant care the tracheostomy would require. The patient's family lives in a rural area with few health care resources and his parents are already handling hours of daily skin care for his epidermolysis bullosa. In an attempt to convince the parents to pursue the intervention, the medical team recommends that the family move to an area with additional resources to assist in the child's care. The parents refuse to move, citing the many benefits their home environment provides for their son. The medical team calls an ethics consultation, questioning whether this decision constitutes medical neglect. This case raises important questions about medical decision-making in pediatrics. First, is a parent's refusal of a recommended medical intervention because it would require moving their family to a new environment a reasonable decision? Second, how broadly can parents define their child's best interest? Should only physical interests be included when making medical decisions? Is there a limit to what can be considered a relevant interest? Third, can parents only consider the interests of the individual child, or can they consider the interests of other members of the family? Finally, what is the threshold for overruling a parental decision? Is it whenever the parent's definition of a patient's best interest is different from the medical team's, or do other criteria have to be met?

Taxonomizing Views of Clinical Ethics Expertise.

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?

Reimagining Childhood: Responding to the Challenge Presented by Severe Developmental Disability.

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.

Introduction: Childhood and Disability.

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 (parents and caregivers) 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 (or indifferences) to the disabled child.

Conflating Capacity & Authority: Why We're Asking the Wrong Question in the Adolescent Decision-Making Debate.

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.

The Re-contextualization of the Patient: What Home Health Care Can Teach Us About Medical Decision-Making.

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.