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.
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.
In this article, our analysis of empathy in the clinical context hinges on the complexities of patients who are acutely suffering. Using a case concerning a heart transplant patient with Duchenne muscular dystrophy, Alex, and his nurse, Joe, we investigate how empathy’s phenomenological nebulousness can generate doubts about its virtue. Even when asking, “How are you, Alex?” Joe hates the question; it seems empty, silly. Cases like this show both that the enactment of empathy is sometimes challenging and that it can be reasonable to wonder if empathy is a virtue at all. Perhaps Alex’s suffering is simply too massive: Joe cannot possibly know how he feels, so why try? Perhaps empathy would only cause Joe to suffer along with Alex. Not only is empathy difficult to produce in the context of Alex’s suffering; it may not even be possible; and if we simply cannot muster empathy, what is the point of morally demanding it?
In response, we distinguish different kinds of empathic engagements from one another and offer separate counsel. We argue that it is important to understand empathy as something that must be honed across varied contexts before it can be called a virtue. Conceptualizing and operationalizing empathy in this way helps to ground its possibility and virtue even in the most challenging and complex clinical encounters.
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