The ethics and practice of perinatal care at the limit of viability: FIGO recommendations.

An arbitrary gestational age limit of viability cannot be set, and in clinical practice the focus should be on a periviability interval-the so-called "gray zone" of prognostic uncertainty. For cases within this interval, the most appropriate decision-making process remains debatable and periviability has emerged as one of the greatest challenges in bioethics. Universally recognized ethical principles may be interpreted differently due to socioeconomic, cultural, and religious aspects. In the case of periviability, there is considerable uncertainty over whether interventions result in a greater balance of clinical good over harm. Furthermore, the fetus or neonate is unable to exercise autonomy and the physicians and parents will act as patient surrogates. When parents and physicians disagree about the infant's best interest, a dialogue without paternalistic attitudes is essential, whereby physicians should only offer, but not recommend, perinatal interventions. Parental choice, based on thorough information, should be respected within the limits of what is medically feasible and appropriate. When disagreements between parents and physicians occur, how is consensus to be achieved? Professional guidelines can be helpful as a framework and starting point for discussion. In reality, however, guidelines only rarely draw categorical lines and in many cases remain vague and ambiguously worded. Local ethics committees can provide counseling and function as moderators during discussions, but ethics committees do not have decision precedence. Counseling assumes the most significant role in periviability discussions, taking into consideration the particular fetal and maternal characteristics, as well as parental values. Several caveats should be observed relative to counseling: message fragmentation or inconsistence should be minimized, prognosis should preferably be presented in a positive framing, and overreliance on statistics should be avoided. It is recommended that decisions regarding neonatal resuscitation in the periviability interval be made before birth and not conditional on the newborn's appearance at birth. Regardless of decision, it is important to assure pre- and postnatal coherence. The present article describes how individual physicians, centers, and countries differ in the approach to the decision to initiate or forgo intensive care in the periviability interval. It is impossible to provide a global consensus view and there can be no unifying ethical, moral, or practical strategy. Nevertheless, ethically justified, quality care comprises early involvement of the obstetric and neonatal team to enable a coherent, comprehensible, nonpaternalistic, and balanced plan of care. Ultimately, physicians will need to adjust the expectations to the local standards, local outcome data, and local neonatal support availability.

Navigating the post-Dobbs landscape: ethical considerations from a perinatal perspective.

Restrictive abortion laws have impacts reaching far beyond the immediate sphere of reproductive health, with cascading effects on clinical and ethical aspects of neonatal care, as well as perinatal palliative care. These laws have the potential to alter how families and clinicians navigate prenatal and postnatal medical decisions after a complex fetal diagnosis is made. We present a hypothetical case to explore the nexus of abortion care and perinatal care of fetuses and infants with life-limiting conditions. We will highlight the potential impacts of limited abortion access on families anticipating the birth of these infants. We will also examine the legally and morally fraught gray zone of gestational viability where both abortion and resuscitation of live-born infants can potentially occur, per parental discretion. These scenarios are inexorably impacted by the rapidly changing legal landscape in the U.S., and highlight difficult ethical dilemmas which clinicians may increasingly need to navigate.

Professional integrity in maternal - fetal innovation and research: an essential component of perinatal medicine.

OBJECTIVES: Clinical innovation and research on maternal-fetal interventions have become an essential for the development of perinatal medicine. In this paper, we present an ethical argument that the professional virtue of integrity should guide perinatal investigators. METHODS: We present an historical account of the professional virtue of integrity and the key distinction that this account requires between intellectual integrity and moral integrity. RESULTS: We identify implications of both intellectual and moral integrity for innovation, research, prospective oversight, the role of equipoise in randomized clinical trials, and organizational leadership to ensure that perinatal innovation and research are conducted with professional integrity. CONCLUSIONS: Perinatal investigators and those charged with prospective oversight should be guided by the professional virtue of integrity. Leaders in perinatal medicine should create and sustain an organizational culture of professional integrity in fetal centers, where perinatal innovation and research should be conducted.

Respectful maternal and newborn care: measurement in one EN-BIRTH study hospital in Nepal.

BACKGROUND: Respectful maternal and newborn care (RMNC) is an important component of high-quality care but progress is impeded by critical measurement gaps for women and newborns. The Every Newborn Birth Indicators Research Tracking in Hospitals (EN-BIRTH) study was an observational study with mixed methods assessing measurement validity for coverage and quality of maternal and newborn indicators. This paper reports results regarding the measurement of respectful care for women and newborns. METHODS: At one EN-BIRTH study site in Pokhara, Nepal, we included additional questions during exit-survey interviews with women about their experiences (July 2017-July 2018). The questionnaire was based on seven mistreatment typologies: Physical; Sexual; or Verbal abuse; Stigma/discrimination; Failure to meet professional standards of care; Poor rapport between women and providers; and Health care denied due to inability to pay. We calculated associations between these typologies and potential determinants of health - ethnicity, age, sex, mode of birth - as possible predictors for reporting poor care. RESULTS: Among 4296 women interviewed, none reported physical, sexual, or verbal abuse. 15.7% of women were dissatisfied with privacy, and 13.0% of women reported their birth experience did not meet their religious and cultural needs. In descriptive analysis, adjusted odds ratios and multivariate analysis showed primiparous women were less likely to report respectful care (ß = 0.23, p-value < 0.0001). Women from Madeshi (a disadvantaged ethnic group) were more likely to report poor care (ß = - 0.34; p-value 0.037) than women identifying as Chettri/Brahmin. Women who had caesarean section were less likely to report poor care during childbirth (ß = - 0.42; p-value < 0.0001) than women with a vaginal birth. However, babies born by caesarean had a 98% decrease in the odds (aOR = 0.02, 95% CI, 0.01-0.05) of receiving skin-to-skin contact than those with vaginal births. CONCLUSIONS: Measurement of respectful care at exit interview after hospital birth is challenging, and women generally reported 100% respectful care for themselves and their baby. Specific questions, with stratification by mode of birth, women's age and ethnicity, are important to identify those mistreated during care and to prioritise action. More research is needed to develop evidence-based measures to track experience of care, including zero separation for the mother-newborn pair, and to improve monitoring.

Between a woman and her fetus: Bedouin women mediators advance the health of pregnant women and babies in their society.

INTRODUCTION: Bedouin women in Israel confront a challenging circumstance between their traditional patriarchal society and transition to modernity. In terms of reproductive health, they face grave disparities as women, pregnant women and mothers. In this article we aim to understand the challenges of Bedouin women who work as mediators in the promotion of Bedouin women's perinatal health. We explore their challenges with the dual and often conflictual role as health peer-instructors-mediators in mother-and-child clinics, and also as members of a Bedouin community, embodying a status as women, mothers, and family caretakers. Drawn upon a feminist interpretative framework, the article describes their challenges in matters of perinatal health. Our research question is: how do women who traditionally suffer from blatant gender inequality utilize health-promotion work to navigate and empower themselves and other Bedouin women. METHODS: Based on an interpretive feminist framework, we performed narrative analysis on eleven in-depth interviews with health mediators who worked in a project in the Negev area of Israel. The article qualitatively analyses the ways in which Bedouin women mediators narrate their challenging situations. RESULTS: This article shows how difficult health mediators' task may be for women with restricted education who struggle for autonomy and better social and maternal status. Through their praxis, women mediators develop a critical perspective without risking their commitments as women who are committed to their work as well as their society, communities, and families. These health mediators navigate their ways between the demands of their employer (the Israeli national mother and child health services) and their patriarchal Bedouin society. While avoiding open conflictual confrontations with both hegemonic powers, they also develop self-confidence and a critical and active approach. CONCLUSIONS: The article shows the ways by which the mediator's activity involved in perinatal health-promotion may utilize modern perinatal medical knowledge to increase women's awareness and autonomy over their pregnant bodies and their role as caregivers. We hope our results will be applicable for other women as well, especially for women who belong to other traditional and patriarchal societies.

Ethical Cultures in Perinatal Care: Do They Exist? Correlation of Provider Attitudes with Periviability Practices at Six Centers.

OBJECTIVE: This study aimed to compare attitudes of providers regarding perinatal management and outcomes for periviable newborns of caregivers at centers with higher resuscitation (HR) and lower resuscitation (LR) rates in the delivery room. STUDY DESIGN: All obstetric and neonatal clinical providers at six U.S. sites were invited to complete an anonymous online survey. Survey responses were compared with clinical data collected from a previous retrospective study comparing centers' rates of planned resuscitation. Responses were analyzed by multivariable logistic and linear regression to assess how HR versus LR center respondents differed in management preferences and outcome predictions. RESULTS: Paradoxically, HR versus LR respondents, when adjusting for other variables, were less likely to respond that interventions such as antenatal steroids (odds ratio: 0.61, 95% confidence interval [CI]: 0.42-0.88, p < 0.009) and resuscitation (OR: 0.59, 95% CI: 0.44-0.78, p < 0.001) should be given at 22 weeks. HR versus LR respondents also reported lower likelihood of survival and acceptable quality of life (OR: 0.7, 95% CI: 0.53-0.93, p = 0.012) at 23 weeks. CONCLUSION: Despite higher rates of planned resuscitation at 22 and 23 weeks, steroid usage and survival rates did not differ between HR and LR sites. In this subsequent survey, respondents from HR centers had a less favorable outlook on interventions for these newborns than those at LR centers, suggesting that instead of driving practices, attitudes may be more closely associated with experiences of clinical outcomes.

Birth Behind Bars: The Need for Labor Support in the Incarcerated Population.

The population of women within carceral systems is growing rapidly. A portion of these individuals are pregnant and will deliver while incarcerated. Although shackling laws for pregnant persons have improved, incarcerated patients are forced to labor without the support of anyone but a carceral officer and their medical staff. We believe access to continuous labor support is critical for all pregnant persons. Carceral systems and their affiliated hospitals have the opportunity to change policies to reflect that continuous labor support is a basic human right and should be permitted for incarcerated pregnant persons in labor, either through a doula program or a selected person of choice.

Professionally responsible advocacy for women and children first during the COVID-19 pandemic: guidance from World Association of Perinatal Medicine and International Academy of Perinatal Medicine.

The goal of perinatal medicine is to provide professionally responsible clinical management of the conditions and diagnoses of pregnant, fetal, and neonatal patients. The New York Declaration of the International Academy of Perinatal Medicine, "Women and children First - or Last?" was directed toward the ethical challenges of perinatal medicine in middle-income and low-income countries. The global COVID-19 pandemic presents common ethical challenges in all countries, independent of their national wealth. In this paper the World Association of Perinatal Medicine provides ethics-based guidance for professionally responsible advocacy for women and children first during the COVID-19 pandemic. We first present an ethical framework that explains ethical reasoning, clinically relevant ethical principles and professional virtues, and decision making with pregnant patients and parents. We then apply this ethical framework to evidence-based treatment and its improvement, planned home birth, ring-fencing obstetric services, attendance of spouse or partner at birth, and the responsible management of organizational resources. Perinatal physicians should focus on the mission of perinatal medicine to put women and children first and frame-shifting when necessary to put the lives and health of the population of patients served by a hospital first.

Close to Home: Perinatal Palliative Care in a Community Hospital.

BACKGROUND: Advances in prenatal testing and diagnosis have resulted in more parents learning during pregnancy that their child may die before or shortly after birth. These advances in testing and diagnosis have also resulted in more parents choosing, despite the diagnosis, to continue their pregnancies and pursue a palliative approach to their infant's short life. Perinatal hospice and palliative care is a growing model of care developed in response to these parents' previously unmet needs. A seldom-discussed opportunity to provide this care exists in outlying community hospitals, which are ideally placed to provide care close to home for families who have chosen comfort measures and time with their child. PURPOSE: This article reviews the definition and utility of perinatal palliative care, the population it serves, attempts to support a rational for development of community-based programs, and describes one community hospital's experience with perinatal palliative care in their community. METHODS/SEARCH STRATEGY: This article describes the development and processes of a perinatal palliative care program at a community hospital in Fredericksburg, Virginia. IMPLICATIONS FOR PRACTICE: Perinatal palliative care can be developed with the assistance of already existing training materials, resources, and staff. While the cohort of patients may be small, implementing perinatal palliative care in a community setting may result in wider availability of this care and more accessible options for these families. IMPLICATIONS FOR RESEARCH: Research possibilities include developing a template for creating a perinatal palliative care program at community hospitals that could be replicated elsewhere; assessing parental satisfaction and quality indicators of perinatal palliative care at community hospitals and at referral hospitals; and assessing outcomes in various settings.

Improving the Experience of Care: Results of the American Association of Birth Centers Strong Start Client Experience of Care Registry Pilot Program, 2015-2016.

In 2018, the Center for Medicare and Medicaid Innovation in the United States (US) released report demonstrating birth centers as the appropriate level of care for most Medicaid beneficiaries. A pilot project conducted at 34 American Association of Birth Centers (AABC) Strong Start sites included 553 beneficiaries between 2015 and 2016 to explore client perceptions of high impact components of care. Participants used the AABC client experience of care registry to report knowledge, values, and experiences of care. Data were linked to more than 300 process and outcome measures within the AABC Perinatal Data Registry™. Descriptive statistics, t tests, χ analysis, and analysis of variance were conducted. Participants demonstrated high engagement with care and trust in pregnancy, birth, and parenting. Beneficiaries achieved their preference for vaginal birth (89.9%) and breastfeeding at discharge through 6 weeks postpartum (91.7% and 87.6%). Beneficiaries reported having time for questions, felt listened to, spoken to in a way they understood, being involved in decision making, and treated with respect. There were no variations in experience of care, cesarean birth, or breastfeeding by race. Medicaid beneficiaries receiving prenatal care at AABC Strong Start sites demonstrated high levels of desired engagement and reported receiving respectful, accessible care and high-quality outcomes. More investment and research using client-reported data registries are warranted as the US works to improve the experience of perinatal care nationwide.

Hurricane Harvey: One Hospital's Journey Toward Organizational Resilience.

One hospital's experiences during the Hurricane Harvey disaster are reviewed and detailed using the strategic technique of strengths, weaknesses, opportunities, and threats analysis. Three leadership behaviors, adaptability, empowerment, and social justice, are discussed relative to organizational resiliency. This hospital's journey during Hurricane Harvey is analyzed using these leadership behaviors in a detailed strengths, weaknesses, opportunities, and threats analysis format. Key lessons learned from this exercise are presented and are applicable to other disaster situations facing hospital performance.

The Ethics of Perinatal Care for Black Women: Dismantling the Structural Racism in "Mother Blame" Narratives.

Perinatal and neonatal nurses have a critical role to play in effectively addressing the disproportionate prevalence of adverse pregnancy outcomes experienced by black childbearing families. Upstream inequities in maternal health must be better understood and addressed to achieve this goal. The importance of maternal health before, during, and after pregnancy is illustrated with the growing and inequitable prevalence of 2 common illnesses, pregestational diabetes and chronic hypertension, and 2 common conditions during and after pregnancy, gestational diabetes and preterm birth. New care models are needed and must be structured on appropriate ethical principles for serving black families in partnership with nurses. The overarching purpose of this article is to describe the ethics of perinatal care for black women; to discuss how social determinants of health, health disparities, and health inequities affecting women contribute to poor outcomes among their children; and to provide tools to dismantle structural racism specific to "mother blame" narratives." Finally, strategies are presented to enhance the provision of ethical perinatal care for black women by nurses.

Mothers' experience of maternity and neonatal care when babies die: A quantitative study.

BACKGROUND: The death of a newborn baby is devastating. While clinical issues may be a primary concern, interpersonal aspects can impact significantly. Mothers in this situation are not easy to access for research and little quantitative evidence is available. In this study we aimed to describe their experience of care, emphasising associations with infant gestational age. METHODS: Secondary analysis of population-based survey data collected through the Office for National Statistics following neonatal death in England in 2012-13. Women were asked about clinical events and care during pregnancy, labour and birth, when the baby died, postnatally and in the neonatal unit. RESULTS: 249 mothers returned completed questionnaires (30% response rate), 50% of births were at 28 weeks' gestation or less and 66% had babies admitted for neonatal care. 24% of women were left alone and worried during labour and 18% after birth. Only 49% felt sufficiently involved in decision-making at this time. Postnatally only 53% were cared for away from other mothers and babies, 47% could not have their partner stay with them, and 55% were not located close to their baby. Mothers of term babies were significantly less likely to report confidence in staff, feeling listened to and having concerns taken seriously during labour, and postnatally many felt insufficiently informed about their baby's condition, and that neonatal staff were not always aware of parental needs. However, most mothers (84%) were satisfied with neonatal care. CONCLUSIONS: There is room for improvement if women whose babies die in the neonatal period are to receive the care and support they need. Women who have a baby admitted to a neonatal unit should be cared for nearby, with room for their partner and with greater involvement in decision-making, particularly where withdrawal of life support is considered.

End-of-life decisions and practices for very preterm infants in the Wallonia-Brussels Federation of Belgium.

BACKGROUND: Very preterm birth (24 to < 32 week's gestation) is a major public health issue due to its prevalence, the clinical and ethical questions it raises and the associated costs. It raises two major clinical and ethical dilemma: (i) during the perinatal period, whether or not to actively manage a baby born very prematurely and (ii) during the postnatal period, whether or not to continue a curative treatment plan initiated at birth. The Wallonia-Brussels Federation in Belgium counts 11 neonatal intensive care units. METHODS: An inventory of key practices was compiled on the basis of an online questionnaire that was sent to the 65 neonatologists working in these units. The questionnaire investigated care-related decisions and practices during the antenatal, perinatal and postnatal periods, as well as personal opinions on the possibility of standardising and/or legislating for end-of-life decisions and practices. The participation rate was 89% (n = 58). RESULTS: The results show a high level of homogeneity pointing to overall agreement on the main principles governing curative practice and the gestational age that can be actively managed given the current state of knowledge. There was, however, greater diversity regarding principles governing the transition to end-of-life care, as well as opinions about the need for a common protocol or law to govern such practices. CONCLUSION: Our results reflect the uncertainty inherent in the complex and diverse situations that are encountered in this extreme area of clinical practice, and call for qualitative research and expert debates to further document and make recommendations for best practices regarding several "gray zones" of end-of-life care in neonatology, so that high quality palliative care may be granted to all neonates concerned with end-of-life decisions.

How Should Trainees Respond in Situations of Obstetric Violence?

Argentina passed a law for humanized birth in 2004 and another law against obstetric violence in 2009, both of which stipulate the rights of women to achieve respectful maternity care. Clinicians and women might still be unaware of these laws, however. In this article, we discuss the case of a fourth-year medical student who, while visiting Argentina from the United States for his obstetric rotation, witnesses an act of obstetric violence. We show that the student's situation can be understood as one of moral distress and argue that, in this specific instance, it would be appropriate for the student to intervene by providing supportive care to the patient. However, we suggest that medical schools have an obligation to better prepare students for rotations conducted abroad.

When Should Screening and Surveillance Be Used during Pregnancy?

Using the ethical and legal concept of shared responsibility for healthy births, this article considers social, cultural, and historical contexts in which medicalization and criminalization have worked in tandem to widen surveillance in ways that intensify scrutiny of women's lives under the guise of child protection, bringing women who are pregnant, postpartum, or parenting under criminal justice control. Although pregnant and postpartum women are prime candidates for medication-assisted treatment (MAT), the expanding carceral system has not prioritized drug treatment or reproductive justice. This article investigates ethical and historical dimensions of the question, According to which principles and practices should screening and surveillance be carried out to reduce harm, safeguard civil and human rights-including reproductive autonomy-and ensure that treatment, when necessary, occurs in the least coercive settings possible?

Ethics and palliative care in the perinatal world.

The perinatal world is unique in its dutiful consideration of two patients along the lines of decision-making and clinical management - the fetus and the pregnant woman. The potentiality of the fetus-newborn is intertwined with the absolute considerations for the woman as autonomous patient. From prenatal diagnostics, which may be quite extensive, to potential interventions prenatally, postnatal resuscitation, and neonatal management, the fetus and newborn may be anticipated to survive with or without special needs and technology, to have a questionable or guarded prognosis, or to live only minutes to hours. This review will address the ethical ramifications for prenatal diagnostics, parental values and goals clarification, birth plans, the fluidity of decision-making over time, and the potential role of prenatal and postnatal palliative care support.