Assessing Ethics Knowledge: Development of a Test of Ethics Knowledge in Neonatology.

OBJECTIVE: To develop and validate the Test of Ethics Knowledge in Neonatology (TEK-Neo) with good internal consistency reliability, item performance, and construct validity that reliably assesses interprofessional staff and trainee knowledge of neonatal ethics. STUDY DESIGN: We adapted a published test of ethics knowledge for use in neonatology. The novel instrument had 46 true/false questions distributed among 7 domains of neonatal ethics: ethical principles, professionalism, genetic testing, beginning of life/viability, end of life, informed permission/decision making, and research ethics. Content and correct answers were derived from published statements and guidelines. We administered the voluntary, anonymous test via e-mailed link to 103 participants, including medical students, neonatology fellows, neonatologists, neonatology nurses, and pediatric ethicists. After item reduction, we examined psychometric properties of the resulting 36-item test and assessed overall sample performance. RESULTS: The overall response rate was 27% (103 of 380). The test demonstrated good internal reliability (Cronbach α = 0.66), with a mean score of 28.5 ± 3.4 out of the maximum 36. Participants with formal ethics training performed better than those without (30.3 ± 2.9 vs 28.1 ± 3.5; P = .01). Performance improved significantly with higher levels of medical/ethical training among the 5 groups: medical students, 25.9 ± 3.7; neonatal nurses/practitioners, 27.7 ± 2.7; neonatologists, 28.8 ± 3.7; neonatology fellows, 29.8 ± 2.9; and clinical ethicists, 33.0 ± 1.9 (P < .0001). CONCLUSIONS: The TEK-Neo reliably assesses knowledge of neonatal ethics among interprofessional staff and trainees in neonatology. This novel tool discriminates between learners with different levels of expertise and can be used interprofessionally to assess individual and group performance, track milestone progression, and address curricular gaps in neonatal ethics.

Examining Permanent Contraception for Children, Adolescents, and Young Adults With Intellectual Developmental Disorder: Ethical, Legal, and Medical Considerations: Clinical Report.

There have been significant advances in the medical and surgical options available for contraception and management of menses for individuals, including those with intellectual developmental disorder. This new statement frames the ethical, legal, and medical issues of permanent contraception in children, adolescents, and young adults with intellectual developmental disorder, emphasizing the importance of utilizing long-acting reversible and minimally invasive treatments, whenever possible. The historical use and abuse of permanent contraception is briefly reviewed, providing the foundation for ongoing ethical and legal considerations, including issues of informed consent. The authors then discuss medical decision-making and patient preferences that should be considered and make recommendations to providers who are contemplating permanent contraception therapies in this population.

A Multifunctional, Low Cost and Sustainable Neonatal Database System.

Continuous improvement in the clinical performance of neonatal intensive care units (NICU) depends on the use of locally relevant, reliable data. However, neonatal databases with these characteristics are typically unavailable in NICUs using paper-based records, while in those using electronic records, the inaccuracy of data and the inability to customize commercial data systems limit their usability for quality improvement or research purposes. We describe the characteristics and uses of a simple, neonatologist-centered data system that has been successfully maintained for 30 years, with minimal resources and serving multiple purposes, including quality improvement, administrative, research support and educational functions. Structurally, our system comprises customized paper and electronic components, while key functional aspects include the attending-based recording of diagnoses, integration into clinical workflows, multilevel data accuracy and validation checks, and periodic reporting on both data quality and NICU performance results. We provide examples of data validation methods and trends observed over three decades, and discuss essential elements for the successful implementation of this system. This database is reliable and easily maintained; it can be developed from simple paper-based forms or used to supplement the functionality and end-user customizability of existing electronic medical records. This system should be readily adaptable to NICUs in either high- or limited-resource environments.

Wide Variation in Unplanned Extubation Rates Related to Differences in Operational Definitions.

OBJECTIVES: Unplanned extubation (UE) rate is a patient safety metric for which there are varied and inconsistently interpreted definitions. We aimed to test the sensitivity of UE rates to the application of different operational definitions. METHODS: We analyzed neonatal intensive care unit (NICU) quality improvement data on UE events defined inclusively as "any extubation that was not performed electively, or not previously intended for that time." Unplanned extubations were classified as involving an endotracheal tube (ETT) that was either objectively "dislodged" or "removed" without proof of prior dislodgement. We used descriptive statistics to explore how UE rates vary when applying alternate UE definitions. RESULTS: For 33 months, 241 UEs were documented, 70% involving dislodged tubes and 30% ETTs removed by staff. Among dislodged ETTs, only 9% were found completely externalized, whereas 77% were at an adequate depth but in the esophagus. Thirteen percent of events occurred outside the NICU and 13% were initially unreported. The overall UE rate was 4.9/100 ventilator days. If the least inclusive definition was used (i.e., counting only "self-extubations" by patients, requiring reintubation, and occurring within the NICU), 83% of UEs would have been excluded. CONCLUSIONS: Most UEs in our NICU population involved staff either removing ETTs from the trachea or partly removing them after internal dislodgement. In settings where ETTs removed by staff are not counted, UE rates may be substantially lower and associated risks underestimated. An inclusive, patient-centric operational definition along with a standardized classification would allow benchmarking, while enabling targeted approaches to minimize locally predominant causes of UEs.

The Ethics of Creating a Resource Allocation Strategy During the COVID-19 Pandemic.

The coronavirus disease 2019 pandemic has affected nearly every aspect of medicine and raises numerous moral dilemmas for clinicians. Foremost of these quandaries is how to delineate and implement crisis standards of care and, specifically, how to consider how health care resources should be distributed in times of shortage. We review basic principles of disaster planning and resource stewardship with ethical relevance for this and future public health crises, explore the role of illness severity scoring systems and their limitations and potential contribution to health disparities, and consider the role for exceptionally resource-intensive interventions. We also review the philosophical and practical underpinnings of crisis standards of care and describe historical approaches to scarce resource allocation to offer analysis and guidance for pediatric clinicians. Particular attention is given to the impact on children of this endeavor. Although few children have required hospitalization for symptomatic infection, children nonetheless have the potential to be profoundly affected by the strain on the health care system imposed by the pandemic and should be considered prospectively in resource allocation frameworks.