Decision-Making for Extremely Preterm Infants: A Qualitative Systematic Review.

OBJECTIVE: To synthesize and describe important elements of decision-making during antenatal consultation for threatened preterm delivery at the margin of gestational viability. STUDY DESIGN: Data sources including PubMed, EMBASE, Web of Science, and CINAHL Plus were searched. We included all qualitative literature published on decision-making from 1990 to July 2021. Two authors independently screened and evaluated each study using the Critical Appraisal Skills Programme checklist; studies reaching moderate and high quality were included. We developed an extraction tool to collect and categorize data from each qualitative article, then used thematic analysis to analyze and describe the findings. RESULTS: Twenty-five articles incorporating the views of 504 providers and 352 parents were included for final review. Thematic analysis revealed 4 main themes describing the experience of health care providers and parents participating in decision-making: factors that influence decision-making, information sharing, building a partnership, and making the decision. Parents and providers were not always in agreement upon which elements were most essential to the process of decision-making. Articles published in languages other than English were excluded. CONCLUSIONS: Qualitative literature highlighting key factors which are important during antenatal counseling can inform and guide providers through the process of shared decision-making. Communicating clear, honest, and balanced information; avoiding artificially dichotomized options; and focusing on partnership building with families will help providers use the antenatal consultation to reach personalized decisions for each infant.

Living with the Unknown: A Qualitative Study of Parental Experience of Prognostic Uncertainty in the Neonatal Intensive Care Unit.

OBJECTIVE: This study aims to characterize the experience of prognostic uncertainty for neonatal intensive care unit (NICU) parents. STUDY DESIGN: We conducted a qualitative interview study of current and former NICU parents regarding their experience with prognostic uncertainty in the NICU. Interviews were transcribed and analyzed using a grounded theory methodology. RESULTS: Twenty-four parents were interviewed before achieving thematic saturation. Three phases of the parental experience of prognostic uncertainty emerged: shock, gray daze, and looking forward. These phases often, but not always, occurred sequentially. In shock, parents felt overwhelmed by uncertainty and were unable to visualize a future for their family. In gray daze, parents felt frustrated by the continued uncertainty. While accepting the possibility of a future for their family, they could not conceptualize a path by which to achieve it. In looking forward, parents accepted uncertainty as inevitable and incorporated it into their vision of the future. CONCLUSION: While each parent experienced the prognostic uncertainty in the neonatal intensive care unit in their own way, we found three common experiential phases. By understanding how a parent experiences prognostic uncertainty in these phases, providers may become better able to communicate and form therapeutic relationships with parents.

Buy-in and breakthroughs: the Overton window in neonatology for the resuscitation of extremely preterm infants.

To understand the future of neonatology, it is important to reflect upon the past and the factors that lead to significant advances in the field. In this article, we explore the evolving landscape of neonatology and the shifting practices in the resuscitation of extremely premature infants, with a particular focus on societal influences that have driven these changes. Using the political policy concept of an Overton Window, we explore how breakthroughs move from unthinkable to acceptable practice and how the increasing involvement of parents and their advocacy efforts have played a pivotal role in that progress. In the era of expanded shared decision making, it is crucial that we apply that same approach to setting priorities in our field, acknowledging the crucial perspectives of both parents and former premature infants in shaping the future of neonatology.

Mandating the COVID-19 Vaccine for U.S. Service Members: An Exploration of Ethical Arguments.

As the COVID-19 pandemic continues across the globe, the advent of novel vaccines has created a possible path to prepandemic life for many. Still, many individuals, including those in the U.S. military, remain hesitant about getting vaccinated. The U.S. Food and Drug Administration recently granted full approval to the Pfizer-BioNTech mRNA vaccine (Comirnaty). Consistent with messaging from President Biden, the Department of Defense leadership has instructed the military to prepare for mandatory vaccination. While many have praised this declaration, others have raised concerns regarding the suppression of individual service member autonomy. This commentary explains the different ethical principles relevant to individual autonomy and how they are understood in a military context and then explores the ethical arguments both for and against mandating vaccination for all U.S. service members.

Battlefield Triage and Resource Allocation during a Pandemic: Learning from the Past and Adapting for the Future.

The principle of medical triage, where patients are sorted into categories to guide the order in which they receive treatment, dates back to Baron Dominique Jean Larrey, the surgeon general of Napolean's armies. The concept evolved with military conflicts throughout the 19th century, was subsequently adapted to situations off the battlefield, and is now widely practiced where resources are limited.2 Military medical providers are taught triage principles early in their careers and its use is routinely integrated into military training scenarios and operational planning.

Uncertainty: An Uncomfortable Companion to Decision-making for Infants.

Although parents are typically the most appropriate decision-makers for their children, there are limits to this authority. Medical providers may be ethically obligated to seek state intervention against a parental decision if the parent places a child at significant and imminent risk of serious harm. When parents make medical decisions for their children, they assess both the projected benefits and risks of their choices for their family. These assessments are impacted by uncertainty, which is a common feature of neonatal intensive care. The relative presence or absence of uncertainty may impact perceptions of parental decisions and a medical provider's decision to seek state intervention to overrule parents. In this article, we propose a model integrating prognostic uncertainty into pediatric decision-making that may aid providers in such assessments. We will demonstrate how to apply this model to 3 neonatal cases and propose that the presence of greater uncertainty ought to permit parents greater latitude to incorporate family values into their decision-making even if these decisions are contradictory to the recommendations of the medical team.

Neonatologists' preferences regarding guidelines for periviable deliveries: do we really know what we want?

OBJECTIVE: To examine neonatology providers' preferences regarding periviability guidelines. STUDY DESIGN: An online cross-sectional survey of American Academy of Pediatrics Section on Neonatal-Perinatal Medicine members. RESULTS: Most of the 480 respondents desired standardized guidelines for upper (85%) and lower (87%) gestational age limits for offering resuscitation and comfort care. Standardization was most to least frequently desired at the national, institutional, and regional levels. Within scenarios involving parents' preferences conflicting with institutional guidelines, respondents chose parent-preferred options more often (66 vs. 34%). Overall, resuscitation (48%) versus comfort care (52%) were nearly equally chosen. In emergency scenarios, more versus less experienced respondents favored parent-preferred options over guidelines (55 vs. 46%, p = 0.003) and chose resuscitation over comfort care (50 vs. 36%, p < 0.001). CONCLUSIONS: Neonatal providers desire age-based periviability guidelines, but do not agree on the level of standardization. Such limits may be insufficient to guide clinical practice. Policies should include processes that direct providers through fair transparent decision-making.