Pediatric Decision-Making: ethical aspects specific to neonates.

Recently published consensus recommendations on pediatric decision-making by Salter and colleagues (2023) did not address neonatal decision-making, due to the unique complexities of neonatal care. This essay explores three areas that impact neonatal decision-making: legal and policy considerations, rapid technological advancement, and the unique emotional burdens faced by parents and clinicians during the medical care of neonates. The authors evaluate the six consensus recommendations related to these considerations and conclude that the consensus recommendations apply to neonates.

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.

On Pellegrino and Thomasma's Admission of a Dilemma and Inconsistency.

Edmund Pellegrino and David Thomasma's writings have had a worldwide impact on discourse about the philosophy of medicine, professionalism, bioethics, healthcare ethics, and patients' rights. Given their works' importance, it is surprising that commentators have ignored their admission of an unresolved and troubling dilemma and inconsistency in their theory. The purpose of this article is to identify and state what problems worried them and to consider possible solutions. It is argued that their dilemma stems from their concerns about how to justify professional rules restricting colleagues from performing acts they view as direct, active, and formal (intentional) killings, such as physician-assisted suicide, mercy killing, and abortion. It is further argued that their inconsistency is that they both assert and deny that professional colleagues should not use their moral or theological values to impose professional restrictions on other colleagues without adequate philosophical grounds. At risk are their arguments about the nature of an internal morality for medicine, a secular and multicultural basis for medical ethics, and a nonarbitrary way to determine what acts fall outside the ends of medicine. These are arguments they claim also apply to other healthcare professions. The article begins with a brief overview of their key positions to provide the context in which they make their admission.

The Forced Marriage of Minors: A Neglected Form of Child Abuse.

The forced marriage of minors is child abuse, consequently duties exist to stop them. Yet over 14 million forced marriages of minors occur annually in developing countries. The American Bar Association (ABA) concludes that the problem in the US is significant, widespread but largely ignored, and that few US laws protect minors from forced marriages. Although their best chance of rescue often involves visits to health care providers, US providers show little awareness of this growing problem. Strategies discussed to stop forced marriages include recommendations from the UN, the ABA, and the UK. The author anticipates and responds to criticisms that first, no duty to intervene exists without better laws and practice guidelines; and second, that such marriages are not child abuse in traditions where parental rights or familism allegedly justify them.

Make her a virgin again: when medical disputes about minors are cultural clashes.

Recalcitrant disputes among health care providers and patients or their families may signal deep cultural differences about what interventions are needed or about clinicians's professional duties. These issues arose in relation to a mother's request for hymenoplasty or revirgination for her minor daughter to enable an overseas, forced marriage and protect her from an honor killing. The American College of Obstetrics and Gynecology committee recommends against members performing a hymenoplasty or other female genital cosmetic surgeries due to a lack of data concerning their safety and efficacy. A key issue in such cases is how to determine what is in the minor's best interest and the scope of health care moral or professional's duties. The Best Interests Standard can serve as a powerful moral tool for resolving cross-cultural disputes and identifying needed policy.

Disputes over moral standards guiding treatments for imperiled infants.

Two incompatible policies govern medical decision-making for infants aged < 1 year in the United States. One is the Best Interests Standard, which is the older policy, and the other is the Child Abuse Prevention and Treatment Act amendments widely known as the "Baby Doe" rules. The debate over which policy to adopt, however, is more far-reaching than treatment for one group in one country as it involves how to rank important medical values when they come into conflict. These are the values of prolonging biological life and of providing comfort and relief from pain and suffering for imperiled and incompetent persons. For reasons of justice and compassion, the Best Interests Standard is superior to Child Abuse Prevention and Treatment Act's Baby Doe Rules for guiding decision for infants and others lacking decision-making capacity.

Bioethics as public discourse and second-order discipline.

Bioethics is best viewed as both a second-order discipline and also part of public discourse. Since their goals differ, some bioethical activities are more usefully viewed as advancing public discourse than academic disciplines. For example, the "Universal Declaration on Bioethics and Human Rights" sponsored by the United Nations Educational, Scientific, and Cultural Organization seeks to promote ethical guidance on bioethical issues. From the vantage of philosophical ethics, it fails to rank or specify its stated principles, justify controversial principles, clarify key terms, or say what is meant by calling potentially conflicting norms "foundational." From the vantage of improving the public discourse about bioethical problems and seeking ethical solutions in the public arena, however, this document may have an important role. The goals and relations between bioethics as a second-order discipline and public discourse are explored.

Using a new analysis of the best interests standard to address cultural disputes: whose data, which values?

Clinicians sometimes disagree about how much to honor surrogates' deeply held cultural values or traditions when they differ from those of the host country. Such a controversy arose when parents requested a cultural accommodation to let their infant die by withdrawing life saving care. While both the parents and clinicians claimed to be using the Best Interests Standard to decide what to do, they were at an impasse. This standard is analyzed into three necessary and jointly sufficient conditions and used to resolve the question of how much to accommodate cultural preferences and how to treat this infant. The extreme versions of absolutism and relativism are rejected. Properly understood, the Best Interests Standard can serve as a powerful tool in settling disputes about how to make good decisions for those who cannot decide for themselves.

Using the Best Interests Standard to decide whether to test children for untreatable, late-onset genetic diseases.

A new analysis of the Best Interests Standard is given and applied to the controversy about testing children for untreatable, severe late-onset genetic diseases, such as Huntington's disease or Alzheimer's disease. A professional consensus recommends against such predictive testing, because it is not in children's best interest. Critics disagree. The Best Interests Standard can be a powerful way to resolve such disputes. This paper begins by analyzing its meaning into three necessary and jointly sufficient conditions showing it: 1. is an "umbrella" standard, used differently in different contexts, 2. has objective and subjective features, 3. is more than people's intuitions about how to rank potential benefits and risks in deciding for others but also includes evidence, established rights, duties and thresholds of acceptable care, and 4. can have different professional, medical, moral and legal uses, as in this dispute. Using this standard, support is given for the professional consensus based on concerns about discrimination, analogies to adult choices, consistency with clinical judgments for adults, and desires to preserve of an open future for children. Support is also given for parents' legal authority to decide what genetic tests to do.

The best interests standard for incompetent or incapacitated persons of all ages.

When making decisions for adults who lack decision-making capacity and have no discernable preferences, widespread support exists for using the Best Interests Standard. This policy appeals to adults and is compatible with many important recommendations for persons facing end-of-life choices. Common objections to the policy are discussed as well as different meanings of this Standard identified, such as using it to express goals or ideals and to make practical decisions incorporating what reasonable persons would want. For reasons of consistency, fairness, and compassion, this standard should be used for all incapacitated persons.

Bioethics as a second-order discipline: who is not a bioethicist?

A dispute exists about whether bioethics should become a new discipline with its own methods, competency standards, duties, honored texts, and core curriculum. Unique expertise is a necessary condition for disciplines. Using the current literature, different views about the sort of expertise that might be unique to bioethicists are critically examined to determine if there is an expertise that might meet this requirement. Candidates include analyses of expertise based in "philosophical ethics," "casuistry," "atheoretical or situation ethics," "conventionalist relativism," "institutional guidance," "regulatory guidance and compliance," "political advocacy," "functionalism," and "principlism." None succeed in identifying a unique area of expertise for successful bioethicists that could serve as a basis for making it a new discipline. Rather expertise in bioethics is rooted in many professions, disciplines and fields and best understood as a second-order discipline.

Children as research subjects: moral disputes, regulatory guidance, and recent court decisions.

The millennium has ushered in a new era of oversight for pediatric research, with renewed moral and legal attention to the upper thresholds of potential harms to which children may be exposed in studies. Watershed events discussed include: First, the deaths of two research subjects, allegedly due to insufficient oversight by the investigators and their institutional review boards. Second, the courts expressed concerns about research policies for incompetent persons or children in two cases, T.D. v. N.Y. and Grimes v. Kennedy Krieger Institute, and reinforcement of the principle that the best interest standard must be used for incompetent persons even in research. Third, the Best Pharmaceutical for Children Act and the Pediatric Rule created incentives as well as uncertainty among Institutional Review Boards and researchers about conducting pediatric studies. Fourth, the Office of Human Research Protection signaled the start of more rigorous oversight with its public rebuke and suspension of a National Institute of Child Health and Human Development pediatric obesity study. Failure to clarify the meaning of the pediatric regulations has sometimes misled generally risk-averse institutions and dedicated investigators about what is permissible.

The incompatibility of the United Nations' goals and conventionalist ethical relativism.

The Universal Draft Declaration on Bioethics and Human Rights seeks to provide moral direction to nations and their citizens on a series of bioethical concerns. In articulating principles, it ranks respect for human rights, human dignity and fundamental freedoms ahead of respect for cultural diversity and pluralism. This ranking is controversial because it entails the rejection of the popular theory, conventionalist ethical relativism. If consistently defended, this theory also undercuts other United Nations activities that assume member states and people around the world can reach trans-cultural judgments having moral authority about health, pollution, aggression, rights, slavery, and so on. To illustrate problems with conventionalist ethical relativism and the importance of rejecting it for reasons of health, human rights, human dignity and fundamental freedoms, the widespread practice of female genital circumcision or cutting is discussed. These surgeries are virtually a test case for conventionalist ethical relativism since they are widely supported within these cultures as religious and health practices and widely condemned outside them, including by the United Nations.