How to move forward in shared decision-making in pediatric palliative care.

Pediatric palliative care has grown immensely in recent years in the world. However, shared decision-making remains a complex process, especially in pediatric palliative care. In particular, a number of issues are priorities to improve the shared decision-making process and ensure high-quality pediatric palliative care for every child. Working on these priorities will improve shared decision-making and thereby enhance high-quality pediatric palliative care around the globe.

Pediatric palliative care across continents: Communication and shared-decision-making.

Despite the significant growth and development of pediatric palliative care worldwide, significant challenges remain. One of those challenges is shared decision-making, by which parents, families and professionals all work together to develop a plan of care that reflects both the medical facts and the patient's family's values. Shared decision-making about palliative care and about death and dying may mean different things in different cultures and countries. It is therefore important to learn and compare practices around the world.

The Future of Newborn Genomic Testing.

Genome sequencing (GS) provides exciting opportunities to rapidly identify a diagnosis in critically ill newborns and children with rare genetic conditions. Nevertheless, there are reasons to remain cautious about the use of GS. Studies to date have been mostly in highly selected populations of babies with unusual clinical presentations. GS leads to diagnoses in many such infants. More rarely, it leads to beneficial changes in management. Parents and physicians whose babies meet these criteria and for whom GS is performed both find these results useful. The concern is this: we do not know how useful such testing will be in the general population. We can speculate that a number of problems will arise as the use of GS expands. First, the percentage of cases in which a valid molecular diagnosis is made will likely go down. The number of ambiguous results or false positives will rise. Genetic counseling will become more complex and challenging. We do not know the relative cost-effectiveness of whole genome, whole exome, or targeted panels in different populations. We do not know the relative contribution of a molecular diagnosis to the decision to withdraw life support. We will have to carefully evaluate the use of such testing in order to understand whether it truly improves outcome and survival or reduces symptoms in babies who are tested. Each of these concerns will require careful study of both the technology and the ethical issues to allow us to harness the potential of these new technologies while avoiding foreseeable problems. Studies are underway to see how the tests are used in general populations. These studies should generate important information to guide clinicians and policymakers. As part of informed consent, doctors should explain to parents that genetic results are not always straightforward. Sometimes, they confirm a diagnosis that was already suspected. Sometimes, they rule out a possible diagnosis. Sometimes, the results are ambiguous and difficult to interpret. Anticipatory discussions should try to give parents a realistic understanding of the likely impact of a genetic diagnosis. Diagnostic genomic testing for newborns is a science that is still in its infancy. More research is essential in order to establish how to personalize this promising but sometimes problematic tool.

Understanding the Clinical Utility of Genome Sequencing in Critically Ill Newborns.

Diagnostic genome sequencing (GS) in newborns may have many benefits. More accurate diagnosis could spur the development of innovative genomic therapies. A precise diagnosis could help doctors and parents anticipate clinical problems and inform a family's future reproductive choices. However, the integration of GS into neonatal care remains associated with a variety of ethical controversies, including concerns about informed consent, about interpreting uncertain results, about resource allocation and whether access to genomic services could exacerbate health disparities, and about the effect of genome diagnostics on people with disabilities. There also remains significant uncertainty about which babies should be tested and when and how the potential benefits of GS ought to be measured. Probably related to these challenges, some payors have been reluctant to cover the cost of GS for critically ill newborns. Much of the reluctance appears to turn on questions about the clinical benefit associated with GS and whether and for whom GS will be cost-effective. These situations point to the urgent need for careful assessments of the clinical utility of GS in critically ill infants. In this paper, we critically examine the ways in which the clinical utility of GS has been evaluated in this patient population. We focus on "change of management" (COM), a widely used measure of clinical utility for diagnostic GS. We suggest that this measure is often ambiguous because not all COMs can be attributed to genomic results and because not all COMs lead to patient benefit. Finally, we suggest ways that measurement of clinical utility could be improved.

Disposition Decisions in Cases of Medical Complexity and Health Inequity.

The question of optimal disposition for children with complex medical and social circumstances has long challenged the well-intentioned clinician. The coronavirus disease 2019 pandemic created unique difficulties for patients, families, and health care providers, in addition to highlighting long-standing racial and socioeconomic inequities in health care. In pediatric hospitals, necessary public health measures such as visitor restrictions shifted many shared decision-making processes such as discharge planning from complicated to impossible. Here, we present the case of a medically complex adult (with a long-standing pediatric condition) whose surrogate decision-maker objected to discharge to a long-term care facility because of restrictions and risks associated with the coronavirus disease 2019 pandemic. We offer the commentary of experts in clinical ethics, intensive care, inpatient subacute care, and palliative care. Our discussion includes analysis of the ethical considerations involved in the case, concrete guidance on steps toward an ethically permissible discharge, and suggestions for how a health equity lens can improve communication and decision-making for families who are victims of systemic racism and economic discrimination.

Ethics knowledge, attitudes, and experiences of tertiary care pediatricians in Ethiopia.

BACKGROUND: Pediatricians in developing countries face different ethical dilemmas than do doctors working in settings with more resources. There are very few studies from developing countries analyzing pediatricians' knowledge and attitudes regarding the ethical dilemmas that arise in such settings. To address this gap, we explored the clinical ethical knowledge, attitude and experience of physicians who are working in the Department of Pediatrics and Child Health (DPCH) of St Paul's Hospital Millennium Medical College (SPHMMC), Addis Ababa, Ethiopia. STUDY POPULATION: All pediatric resident doctors and pediatric consultants who were working in the DPCH of SPHMMC in December, 2020. METHOD: A structured pretested self-administered questionnaire was distributed to all 79 of the residents and consultants in the department during the period December 15-27, 2020. The questionnaire assessed the knowledge (23 questions), attitude (9 questions) and experiences (9 questions) of the study participants regarding a variety of bioethical issues. Data were analyzed using SPSS version 20.0 for windows. The mean, median, standard deviation, and interquartile range of respondents' scores were determined and compared using Fisher's exact test. RESULT: A total of 59/79 (75%) physicians completed the questionnaire. The mean age of the participants was 30.7 ± 4.1 years. Thirty six (61.0%) were female. At the time of data collection, more than half (57.6%) served < 5 years as a physician. The mean ethics knowledge score of the respondents was 12.3 ± 2.34 out of 23 knowledge questions. The lowest and highest knowledge scores were 8 and 19 respectively. Scores were highest on questions about confidentiality (94.9% correct) and lowest on questions about genetic testing and diagnosis (13.6% correct). Only 13 (22.4%) physicians agreed with the practice of children should never be treated without consent of the parent. CONCLUSION: Tertiary care pediatricians at one hospital in Ethiopia lack knowledge about current standards in bioethics. There is a need for more ethics education in this setting.

Current controversies in neonatal resuscitation.

The goal of neonatal bioethics is to help clinicians navigate difficult decisions that arise every day in the care of critically ill newborns. Over the last few decades, there have been vigorous discussions of numerous ethical issues. For some, we have worked out a tentative societal agreement for appropriate responses. Others remain contentious and controversial. They evoke moral distress. In this article, we address some of these unresolved issues including the changing landscape of duration and viability threshold for newborn resuscitation, the issue of borderline of viability and the ethical controversies that arise when each center has its own policies, and some of the challenges that arise in Fetal Care Centers (FCC). Finally, we propose a generalizable model of shared decision making.

Ethics of care for the micropreemies. Just because we can, should we?

Debates about treatment for the tiniest premature babies focus on three different approaches - universal non-resuscitation, selective resuscitation, and universal resuscitation. Doctors, hospitals, and professional societies differ on which approach is preferable. The debate is evolving as studies show that survival rates for babies born at 22 and 23 weeks of gestation are steadily improving at centers that offer active treatment to these babies. Still, many centers do not offer such treatment or, if they do, actively discourage it. The doctors and centers that discourage treatment have concerns about the chances for survival, neurodevelopmental impairment among survivors, and cost. Centers that offer and encourage treatment cite evidence that many babies born at 22 weeks can survive, that most survivors have good neurodevelopmental outcomes, and that NICU care for tiny babies is cost-effective compared to many common and uncontroversial treatments. The debate touches on many fundamental ethical issues that have been present in neonatology since its inception as a medical specialty.

Next generation sequencing in neonatology: what does it mean for the next generation?

Rapid whole genome sequencing (WGS) and whole exome sequencing (WES), sometimes referred to as "next generation sequencing" (NGS) are now recommended by some experts as a first-line diagnostic test to diagnose infants with suspected monogenic conditions. Estimates of how often NGS leads to diagnoses or changes in management vary widely depending on the population being studied and the indications for testing. Finding a genetic variant that is classified as pathogenic may not necessarily equate with being able to predict the resultant phenotype or to give a reliable prognosis. Molecular diagnoses do not usually lead to changes in clinical management but they often end a family's diagnostic Odyssey and allow informed decisions about future reproductive choices. The likelihood that NGS will be beneficial for patients and families in the NICU remains uncertain. The goal of this paper is to highlight the implications of these ambiguities in interpreting the results of NGS. To do that, we will first review the types of cases that are admitted to NICUs and show why, at least in theory, NGS is unlikely to be useful for most NICU patients and families and may even be harmful for some, although it can help families in some cases. We then present a number of real cases in which NGS results were obtained and show that they often lead to unforeseen and unpredictable consequences. Finally, we will suggest ways to communicate with families about NGS testing and results in order to help them understand the meaning of NGS results and the uncertainty that surrounds them.

Ethical and epistemic issues in the design and conduct of pragmatic stepped-wedge cluster randomized clinical trials.

Stepped-wedge cluster randomized trial (SW-CRT) designs are increasingly employed in pragmatic research; they differ from traditional parallel cluster randomized trials in which an intervention is delivered to a subset of clusters, but not to all. In a SW-CRT, all clusters receive the intervention under investigation by the end of the study. This approach is thought to avoid ethical concerns about the denial of a desired intervention to participants in control groups. Such concerns have been cited in the literature as a primary motivation for choosing SW-CRT design, however SW-CRTs raise additional ethical concerns related to the delayed implementation of an intervention and consent. Yet, PCT investigators may choose SW-CRT designs simply because they are concerned that other study designs are infeasible. In this paper, we examine justifications for the use of SW-CRT study design, over other designs, by drawing on the experience of the National Institutes of Health's Health Care Systems Research Collaboratory (NIH Collaboratory) with five pragmatic SW-CRTs. We found that decisions to use SW-CRT design were justified by practical and epistemic reasons rather than ethical ones. These include concerns about feasibility, the heterogeneity of cluster characteristics, and the desire for simultaneous clinical evaluation and implementation. In this paper we compare the potential benefits of SW-CRTs against the ethical and epistemic challenges brought forth by the design and suggest that the choice of SW-CRT design must balance epistemic, feasibility and ethical justifications. Moreover, given their complexity, such studies need rigorous and informed ethical oversight.

Suicide Risk in Adolescents During the COVID-19 Pandemic.

BACKGROUND: The coronavirus disease 2019 (COVID-19) pandemic created high levels of psychological distress and may have increased suicide risk. METHODS: We used the 4-item Ask Suicide-Screening Questions (ASQ) to assess suicide risk among all patients 12 to 24 years of age at a children's hospital. We compared demographics, encounter type (telehealth or face-to-face [F2F]), and screening results from April to June 2020 (T2) to those from April to June 2019 (T1). RESULTS: Fewer patients were seen at T2 than T1 (17 986 vs 24 863). A greater proportion of visits at T2 were by telehealth (0% vs 43%). The rate of positive suicide screens was higher in T2 than in T1 (12.2% vs 11.1%, adjusted odds ration [aOR], 1.24; 95% confidence interval [CI], 1.15-1.35). The odds of a positive screen were greater for older patients (aOR of 1.12 for age in years; 95% CI, 1.10-1.14), female patients (aOR, 2.23; 95% CI, 2.00-2.48), patients with public versus private insurance (aOR, 1.88; 95% CI, 1.72-2.07), and lower for Black versus White patients (aOR, 0.85; 95% CI, 0.77-0.95). Rates of positive screens were highest among inpatients (20.0%), intermediate for emergency department patients (14.4%), and lowest in outpatient clinics (9.9%) (P < .05). CONCLUSIONS: Rates of positive suicide risk screens among adolescents rose in the pandemic's early months with differences related to sociodemographics and visit type. Changes in health care delivery highlight the complexities of assessing and responding to mental health needs of adolescents. Additional research might determine the effects of screening methods and patient populations on screening results.