Variation in States' Implementation of CAPTA's Substance-Exposed Infants Mandates: A Policy Diffusion Analysis.

In 2016, federal law changed state child welfare mandates related to prenatally substance-exposed infants. Little is known regarding the status or implications of policy implementation. The current study examined thematic clusters among states' policies responsive to this 2016 mandate. Cluster analysis identified four distinct categories of states' implementation: (1) "innovators/early adopters," (2) "early majority," (3) "late majority," and (4) "laggards." Innovator/early adopter states (n = 14) were most likely to have implemented plan of safe care policies consistent with Child Abuse Prevention and Treatment Act (CAPTA). Early majority states (n = 15) have started developing some aspects of CAPTA 2016 but have some aspects that are still in development. Late majority states (n = 17) have adopted few aspects of CAPTA 2016 but had implemented more CAPTA 2003 and 2010 aspects than states in the laggard cluster. Laggard states (n = 6) have implemented the fewest CAPTA prenatal substance exposure domains. In bivariate analyses, the only variable associated with clusters was Census region (e.g., New England), suggesting that states' implementation decisions may be influenced by their regional neighbors.

Differing Thresholds for Overriding Parental Refusals of Life-Sustaining Treatment.

When should doctors seek protective custody to override a parent's refusal of potentially lifesaving treatment for their child? The answer to this question seemingly has different answers for different subspecialties of pediatrics. This paper specifically looks at different thresholds for physicians overriding parental refusals of life-sustaining treatment between neonatology, cardiology, and oncology. The threshold for mandating treatment of premature babies seems to be a survival rate of 25-50%. This is not the case when the treatment in question is open heart surgery for a child with congenital heart disease. Most cardiologists would not pursue legal action when parents refuse treatment, unless the anticipated survival rate after surgery is above 90%. In pediatric oncology, there are case reports of physicians requesting and obtaining protective custody for cancer treatment when the reported mortality rates are 40-50%. Such differences might be attributed to differences in care, a reasonable prioritization of quality of life over survival, or the role uncertainty plays on prognoses, especially for the extremely young. Nonetheless, other, non-medical factors may have a significant effect on inconsistencies in care across these pediatric subspecialties and require further examinations.

Designation of neonatal levels of care: a review of state regulatory and monitoring policies.

OBJECTIVE: Summarize policies on levels of neonatal care designation among 50 states and District of Columbia (DC). STUDY DESIGN: Systematic review of publicly available, web-based information on levels of neonatal care designation policies for each state/DC. Information on designating authorities, designation oversight, licensure requirement, and ongoing monitoring for designated levels of care abstracted from 2019 published rules, statutes, and regulations. RESULT: Thirty-one (61%) of 50 states/DC had designated authority policies for neonatal levels of care. Fourteen (27%) incorporated oversight of neonatal levels of care into the licensure process. Among jurisdictions with designated authority, 25 (81%) used a state agency and 15 (48%) had direct oversight. Twenty-two (71%) of 31 states with a designating authority required ongoing monitoring, 14 (64%) used both hospital reporting and site visits for monitoring with only ten requiring site visits. CONCLUSIONS: Limited direct oversight influences regulation of regionalized systems, potentially impacting facility service monitoring and consequent management of vulnerable infants.

Communication-related allegations against physicians caring for premature infants.

OBJECTIVE: Maternal-fetal medicine physicians (MFMp) and neonatal-perinatal medicine physicians (NPMp) caring for premature infants and their families are exposed to significant risk for malpractice actions. Effective communication practices have been implicated to decrease litigious intentions but the extent of miscommunication as a cause of legal action is essentially unknown in this population. Analysis of communication-related allegations (CRAs) may help toward improving patient care and physician-patient relationships as well as decrease litigation risks. STUDY DESIGN: We retrospectively reviewed the Westlaw database, a primary online legal research resource used by United States lawyers and legal professionals, for malpractice cases against physicians involving premature infants. Inclusion criteria were: 22 to 36 weeks gestational age, cases related to peripartum events through infant discharge and follow-up, and legal records with detailed factual narratives. RESULTS: The search yielded 736 legal records, of which 167 met full inclusion criteria. A CRA was identified in 29% (49/167) of included cases. MFMp and/or NPMp were named in 104 and 54 cases, respectively. CRAs were identified in 26% (27/104) and 35% (19/54) of MFMp- and NPMp-named cases, respectively, with a majority involving physician-family for both specialties (81% and 74%, respectively). Physician-family CRAs for MFMp and NPMp most often regarded lack of informed consent (50% and 57%, respectively), lack of full disclosure (41% and 29%, respectively) and lack of anticipatory guidance (36% and 21%, respectively). CONCLUSIONS: This study of a major legal database identifies CRAs as significant causes of legal action against MFMp and NPMp involved in the care of high-risk women and infants delivered preterm. Physicians should be especially vigilant with obtaining genuine informed consent and maintaining open communication with families.

Outcomes in Continuing Pregnancies Diagnosed with a Severe Fetal Abnormality and Implication of Antenatal Neonatology Consultation: A 10-Year Retrospective Study.

PURPOSE: To describe a population choosing to continue their pregnancy despite a severe fetal abnormality and to evaluate the role of antenatal neonatology consultation in perinatal decision-making. METHODS: A 10-year (2005-2015) retrospective descriptive study in a single Multidisciplinary Prenatal Diagnosis Center in South France. A series of pregnancies with severe fetal abnormalities were collected by a person outside the decision making process and/or the child's care. RESULTS: Thirty-nine pregnancies were included, among which 12 couples chose the perinatal palliative care. In total, there were 25 live births (10 later died, with median of survival of 52.5 h [16-943.5]); only five infants received a palliative care plan at birth. CONCLUSION: The choice to continue a pregnancy diagnosed with severe fetal pathology is on the rise in France. Treatment options point to standardize perinatal palliative care provided by trained perinatal professionals using standardized practices.

Presentación: Los desafíos Bioéticos de la neonatología / Presentation: The bioethics challenges in neonatolgy

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Ethics of birth at the limits of viability: the risky business of prediction.

Infants born at the limits of viability present neonatologists in particular and society in general with difficult challenges. Ethical and legal considerations establish a framework for action, although this varies between countries, departments and individuals and shows dynamic changes over time. This brief review includes a vignette telling a familiar story. In this case, the parents ask searching questions and the caring, knowledgeable neonatologist uses up-to-date information to offer empathic and thoughtful guidance - a challenge for all.

[Parental Information and Consent in Neonatology]. / Aufklärung in der Neonatologie.

Careful analysis of current adjudication reveals increasing demand of adequate record-keeping as well as meticulously documented informed consent forms regarding all aspects of medicine. Although standardized informed consent forms or explicit guidelines for obtaining procedural consent already exist in surgical disciplines there is strong evidence that, however, in neonatology (and paediatric intensive care) these processes are still incomplete and qualitatively insufficiently implemented. Therefore the author discussed all existing information prescriptions with the legal department and quality management of a large German clinic group especially in terms of relevant legislation, recent case law and specialist literature in order to obtain potential for improvement. Based on the results of this audit of expert opinions improved recommendations could be implemented in the daily practise of a department of neonatology and paediatric intensive care on a tertiary level.

La Neonatología, primera Área de Capacitación Específica de la Pediatría en Espana / Neonatology, the First Specific Training Area of Paediatrics in Spain

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Ethical issues in the care of the neurologically devastated infant.

The debate surrounding neurologically devastated newborns, whether due to severe prematurity or genetic malformations, has continued for over 40 years. Duff and Campbell (1973) first discussed allowing these children to die in the 1970s. In the 1980s, others fought to make sure these children with disabilities were afforded all the rights of other children. Recently, some commentators have advocated for withdrawal of therapies and even euthanasia in the Netherlands. Who is right? What are the ethical principles that should be followed? What decisions are appropriate for distraught parents to make? This chapter reviews international views, laws, and guidelines surrounding the therapies and limitations of care for these imperiled newborns. An ethical argument is presented for how to determine best interests for these special children utilizing the best interest standard. Parents and physicians need to use their individual expertise and values to work together to determine each individual child's best interests. Physicians may have to carry the burden for making final determinations to alleviate the guilt families may have in deciding to limit therapies.

Medical practice and legal background of decisions for severely ill newborn infants: viewpoints from seven European countries.

AIM: To comparing attitudes towards end-of-life (EOL) decisions in newborn infants between seven European countries. METHODS: One paediatrician and one lawyer from seven European countries were invited to attend a conference to discuss the practice of EOL decisions in newborn infants and the legal aspects involved. RESULTS: All paediatricians/neonatologists indicated that the best interest of the child should be the leading principle in all decisions. However, especially when discussing cases, important differences in attitude became apparent, although there are no significant differences between the involved countries with regard to national legal frameworks. CONCLUSION: Important differences in attitude towards neonatal EOL decisions between European countries exist, but they cannot be explained solely by medical or legal reasons.

[Recommendations on making decisions and end of life care in neonatology]. / Recomendaciones sobre toma de decisiones y cuidados al final de la vida en neonatología.

Healthcare-professionals who work in neonatal units believe that a very important part of their work is the care of sick newborns, and their families if the neonate has an incurable disease or will die. The effort is focused on preventing disproportionate and unnecessary treatments that result in pain and discomfort, and also separate the child from his family. These situations usually occur when the infant has a terminal illness, extreme immaturity with complications, or severe birth defects. In this paper, the Ethics Working Group of the Spanish Society of Neonatology reflects on decision making at this time of life. The ethical aspects are reviewed, including, limiting treatment, the basis of decision-making process (that should include adequate information), the relationship of trust, and deliberation between parents and professionals to make the right decision. It highlights the importance of caring for the family in a complex situation and of great suffering, when faced with the recommendation of professionals to limit treatment because their child suffers from a disease with a poor prognosis. The care of the sick neonate care at the end of life, and their families requires a considerable effort, dedication and training of all health personnel. The repeated experience of being close to suffering and death can adversely affect the professionals involved. Finally, there is mention of the legal aspects of limiting treatment, how to perform and document decision process, the withdrawal of life support, assessment of symptoms and pain control and sedation.

Neonatal hyperbilirubinaemia: time for Italian recommendations?

The introduction of effective therapies for hyperbilirubinemia might have led to a general overconfidence among neonatal healthcare providers. National guidelines have been issued in many countries though they hardly stand the challenge of evidence-based medicine. A comparative appraisal shows significant discrepancies among different documents. As new, compelling evidence sheds a different light on bilirubin toxicity, this heterogeneity that borders confusion should be solved by implementing both clinical and basic research on the complex issue of neonatal hyperbilirubinemia.