No abstract

In this era of rapidly advancing biomedical technologies, it is not unusual for parents of children with profound cognitive disabilities to ask clinicians to provide invasive life‐sustaining treatments. Parental requests for such interventions pose a moral dilemma to the treating medical team, as there may be a discrepancy between the team's perception of the child's best interest and the apparent rationale underlying a parent's request. This gap highlights the limitation of the best interest standard in cases where, due to a neurodevelopmental disorder or brain injury, the child's capabilities are severely limited and their interests may be difficult to discern. The harm principle is also inadequate for decision‐making in response to these parental requests. To address these limitations, and inspired in part by John Arras's work on the relational potential standard, we propose an integration of care ethics within pediatric decision‐making using a new version of this standard. The potential for children to be in caring and loving relationships with their parents, what we will call “relational potential,” may provide an ethical justification for clinicians to support parental requests for life‐sustaining treatments.

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.

OBJECTIVE: Fetal care centers have recently emerged in affiliation with children's hospitals throughout the United States. Few studies have evaluated this new multidisciplinary model of care. STUDY DESIGN:We conducted a survey of multidisciplinary fetal care centers in the United States; survey data was analyzed using descriptive statistics. RESULTS: 59 centers were identified; 29 centers (49%) returned completed surveys. Most centers are located in a children's hospital (54%), and the majority of centers (76%) opened in the past 10 years. The majority of centers (62%) are administered by a specialist in Maternal Fetal Medicine or Obstetrics and Gynecology. A specialist in MFM or Ob/Gyn evaluates every patient at 90% of centers; a neonatologist evaluates every patient at 52% of centers. All responding centers have the capability to perform ultrasounds although fewer centers perform fetoscopic surgery (38%) or open fetal surgery (31%). Many centers (41%) conduct research protocols in fetal medicine. Most centers (61%) considered the provision of information to families as their most important goal. CONCLUSIONS: This is the first study to describe multidisciplinary fetal centers in the United States. It demonstrates variability between centers. More research is needed in order to evaluate the impact of this variability.

Doctors have no ethical obligation to provide futile treatment. This has been true since the time of Hippocrates who warned physicians not to treat patients who were “overmastered by their disease.” This principle remains valid today but, as the Society for Critical Care Medicine notes, it is difficult to identify treatment as absolutely futile in all but a few clinical situations. Far more common, they note, are “treatments that are extremely unlikely to be beneficial, are extremely costly, or are of uncertain benefit.” These, they say, “may be considered inappropriate and hence inadvisable, but should not be labeled futile.” So what should doctors do when they have a case that seems close to the futility threshold but does not, perhaps, quite cross it? In such cases, is it appropriate to make unilateral decisions to withhold life-sustaining treatment even if the family objects? Or should treatment be provided knowing that it might cause pain and suffering to an infant with no likelihood of benefit? To address these questions, we present a case of an extremely premature infant with a giant omphalocele and ask 3 neonatologists, Dr Dalia Feltman of Evanston Hospital, Dr Theophil Stokes of the Walter Reed Medical Center, and Dr Jennifer Kett, a neonatologist and fellow in bioethics at Seattle Children’s Hospital, to comment.