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. (shrink)

Background Some have hypothesized that talk about suffering can be used by clinicians to motivate difficult decisions, especially to argue for reducing treatment at the end of life. We examined how talk about suffering is related to decision-making for critically ill patients, by evaluating transcripts of conversations between clinicians and patients’ families.Methods We conducted a secondary qualitative content analysis of audio-recorded family meetings from a multicenter trial conducted in the adult intensive care units of five hospitals from 2012–2017 to look (...) at how the term “suffering” and its variants were used. A coding guide was developed by consensus-oriented discussion by four members of the research team. Two coders independently evaluated each transcript. We followed an inductive approach to data analysis in reviewing transcripts; findings were iteratively discussed among study authors until consensus on key themes was reached.Results Of 146 available transcripts, 34 (23%) contained the word “suffer” or “suffering” at least once, with 58 distinct uses. Clinicians contributed 62% of first uses. Among uses describing the suffering of persons, 57% (n = 24) were related to a decision, but only 42% (n = 10) of decision-relevant uses accompanied a proposal to limit treatment, and only half of treatment-limiting uses (n = 5) were initiated by clinicians. The target terms had a variety of implicit meanings, including poor prognosis, reduced functioning, pain, discomfort, low quality of life, and emotional distress. Suffering was frequently attributed to persons who were unconscious.Conclusions Our results did not support the claim that the term “suffering” and its variants are used primarily by clinicians to justify limiting treatment, and the terms were not commonly used in our sample when decisions were requested. Still, when these terms were used, they were often used in a decision-relevant fashion. (shrink)

Neonatal suffering has been the focus of recent debate in pediatric bioethics and suffering theory. How to access and conceptualize the suffering that can be attributed to newborns? How to discern the suffering of newborns who, due to being non-neurotypical, may have a short life and severe neurocognitive disabilities, in addition to being entirely dependent on people or life-sustaining technologies? Phenomenology has provided valuable tools for analysing human experiences of suffering, but its application to the neonatal suffering experience is not (...) without fundamental challenges. In this article, I will consider recent contributions to elucidating the phenomenon of neonatal suffering, especially those in the field of non-experiential theories of suffering. Based on this review, a recent phenomenological approach to suffering will be examined. Explicitly directed toward narrative persons, this approach appears to be inherently limited in elucidating the phenomenon of neonatal pediatric suffering. Nevertheless, a suggestion will be offered to partially elaborate the theoretical foundations of a phenomenological theory of neonatal suffering. This suggestion points to the program of a phenomenology of the existential feelings of newborns. (shrink)