Relational suffering and the moral authority of love and care.

Suffering is a ubiquitous yet elusive concept in health care. In a field devoted to the pursuit of objective data, suffering is a phenomenon with deep ties to subjective experience, moral values, and cultural norms. Suffering's tie to subjective experience makes it challenging to discern and respond to the suffering of others. In particular, the question of whether a child with profound neurocognitive disabilities can suffer has generated a robust discourse, rooted in philosophical conceptualizations of personhood as well as the academic and experiential expertise of practiced health-care professionals. The issue remains unresolved because it is difficult, perhaps impossible, to ever truly know an infant's lived experience. But what if this is not the best question? What if instead of asking "can this infant suffer?" the discourse is broadened to ask "is there suffering here?" This latter question demands attention to patients' subjective experiences of suffering, but also to the web of relationships that envelop them. Without losing sight of the importance of patients' experiences, consideration of their relationships may elucidate the presence of suffering when the patients themselves are unable to provide the same clarity. In this essay, care ethics frames an examination of how suffering manifests in the loving and caring relationships that surround an infant with profound neurocognitive disabilities, changing those relationships and affecting the individuals within them. Exploring suffering through these relationships may offer clarity on the presence and content of suffering for infants with profound cognitive disabilities, in turn offering moral guidance for responding to suffering and supporting flourishing in this context.

Who Is the Next "Baby Doe?" From Trisomy 21 to Trisomy 13 and 18 and Beyond.

The "Baby Doe" case of the early 1980s was marked by considerable controversy, primarily regarding the legal response of the federal government to the case at the time. In the decades that followed, the decision-making for children with trisomy 21, like Baby Doe, has been substantially reevaluated. The data, the assumptions about quality of life that were based on those data, and the ethical principles underpinning the decision-making in the Baby Doe case have all evolved significantly over time. The present strategies for decision-making for children with trisomy 13 and 18 appear to be following a similar pattern. The data, quality-of-life assumptions based on those data, and even the ethical principles underlying the decision-making for these children are currently being reexamined. Children with trisomy 13 and 18 are, in this regard, the next Baby Doe(s).

The multidisciplinary fetal center: clinical expertise is only part of the experience.

AIM: Multidisciplinary foetal centres have recently emerged in partnership with children's hospitals throughout the United States. The aim of this investigation was to describe the patient experience of pregnant women who were referred to our foetal centres for the evaluation of foetal congenital anomalies. METHODS: A qualitative interview study of women referred to our foetal centres was conducted using semi-structured telephone interviews. The data were coded and analysed using thematic networks analysis. RESULTS: Six themes were identified (i) foetal centre evaluations had a far-reaching impact on participants' lives, (ii) participants appreciated both expertise and support from providers, (iii) participants recognised the need to cope with uncertainty, (iv) participants sought additional support from multiple arenas, (v) participants specifically looked to the Internet for both information and support and (vi) participants had pre-established views about pregnancy termination. CONCLUSION: Multidisciplinary foetal centres can provide a unified source of clinical expertise to women who are carrying a foetus with a suspected or identified congenital anomaly. Despite this diagnostic acumen, uncertainty is pervasive and patients seek support and additional information from a variety of other sources. This investigation is an important initial step in the evaluation of this emerging model of care.

Prenatal Consultation for Extremely Preterm Neonates: Ethical Pitfalls and Proposed Solutions.

In current practice, decisions regarding whether or not to resuscitate infants born at the limits of viability are generally made with expectant parents during a prenatal consultation with a neonatologist. This article reviews the current practice of prenatal consultation and describes three areas in which current practice is ethically problematic: (1) risks to competence, (2) risks to information, and (3) risks to trust. It then reviews solutions that have been suggested in the literature, and the drawbacks to each. Finally, it suggests that the model of prenatal consultation be altered in three ways: (1) that the prenatal consultation be viewed as a process over time, rather than a onetime event; (2) that decision making in the prenatal consultation be framed as a choice between nonresuscitation and a trial of neonatal intensive care, rather than a choice between "doing nothing" and "doing everything"; and (3) that the prenatal consultation process devote serious attention to both the transfer of information and the non-informational needs of families, rather than focus on the transfer of information alone.