Peter Murray

Decisions for patients in the neonatal intensive care unit (NICU) are made under the auspices of the shared decision-making model, which uses the best interests standard as a guide. Decisions made regarding the withdrawal of life-sustaining measures (WLSM) are also made using the shared decision-making model with attention to either physiological parameters indicative of survival or the potential for disability. The two dominant frameworks for considering disability are the medical and social models. At its core, the medical model views disability as something broken within the person, something in need of being fixed. On the other hand, the social model of disability asserts that disability is a socially constructed process consisting of a multitude of barriers encountered by people with various impairments. The social and medical models of disability fail to represent disability in the NICU accurately. The former neglects the biological aspect, as a neonate in the NICU is primarily a physiological being. In contrast, the latter overlooks the possibility that the neonate may not yet be impacted by their impairment and, therefore, would technically not be considered disabled per specific criteria outlined in the medical model. An alternative framework that incorporates the neonate’s current medical requirements in conjunction with the prognostication of disability as a method by which parents might make decisions regarding WLSM is desperately needed.

Linguistic relativity—the idea that the particular language one uses can shape how one thinks and experiences the world—has been the focus of centuries of philosophical debate. Today, anthropologists, linguists, psychologists, and philosophers have been using empirical techniques to raise that debate from the level of mere speculation into the realm of testable hypotheses. Beginning from Chiang’s novella “Story of Your Life,” this chapter considers the contemporary debate around linguistic relativity and assesses the current state of that debate, both empirically and philosophically.

Background Moral distress, or the inability to carry out what one believes to be ethically appropriate because of constraints or barriers, is understudied in obstetrics and gynecology. We sought to characterize moral distress among Maternal-Fetal Medicine (MFM) fellows using a standardized survey. Methods We disseminated a national anonymized survey study of MFM fellows electronically regarding moral distress using a validated questionnaire with supplemental questions pertaining to specific challenges within MFM clinical care. Multivariable linear regression modeling was used to examine the association between abortion restrictions, maternal mortality, and moral distress, controlling for demographic variables. Thematic analysis was performed for the free text responses elaborating upon moral distress and grouped by thematic elements. We hypothesized that training in states with more abortion restrictions and higher maternal mortality would be associated with higher moral distress scores. Results Among 245 total responses (61% response rate), 177 complete responses (44% complete response rate) were included for analysis. Most of our respondents identified as female (78.5%), White (71.8%), and training in urban programs (83.1%). 37.9% of respondents reported training in the Northeast, with the remainder of respondents evenly distributed across the United States. The mean score for the validated questions was 85.9 ± 48.8, with female gender identity associated with higher measures of moral distress on the validated portion of the questionnaire as compared to male gender identity (90.1 ± 49.2 vs. 70.4 ± 44.7, p < 0.05), whereas more advanced training was associated with higher measures of moral distress on the supplemental questions as compared to those less advanced in training (20.9 ± 11.8 vs. 28.5 ± 15.9 vs. 25.9 ± 15.6 for PGY-5 vs. PGY-6 vs. PGY-7 and PGY-8 combined, respectively, p < 0.05). After adjustment, higher measure of moral distress on the validated questionnaire was associated with training in states designated “Abortion restrictive” as compared to “Abortion most protective” (beta estimate 27.80 and p < 0.01). Of 34 free responses, 65% referred to limitations on abortion access and reproductive justice as causes of significant moral distress. Conclusion MFM fellows who identify as female reported higher measures of moral distress, as well as those training in states with more abortion restrictions. Among free text respondents, abortion restrictions underlie a significant proportion of moral distress.