Despite the central place of suffering in medical care, suffering in infants and nonverbal children remains poorly defined. There are epistemic problems in the detection and treatment of suffering in infants and normative problems in determining what is in their best interests. A lack of agreement on definitions of infant suffering leads to misunderstanding, mistrust, and even conflict amongst clinicians and parents. It also allows biases around intensive care and disability to affect medical decision-making on behalf of infants. In this (...) paper, I propose the concept of suffering pluralism, which is a novel multidimensional view of infant suffering based on subjective and objective components. The concept of suffering pluralism is more inclusive of the multiple ways in which infant suffering can occur. It acknowledges and defines a subjective component to infant suffering, while also focusing moral attention on objective well-being by describing it using the language of suffering. This concept allows us to better weigh up subjective and objective components of well-being. It also encourages clarity and consistency in claiming suffering, which is likely to improve communication and reduce conflict in medical decision-making for unwell infants and children. I will end by exploring possible critiques and limitations of this concept. (shrink)

In pediatric health care, parents and clinicians sometimes have competing ideas of what should be done for a child. In this article, we explore the idea that notions of what should be done for a child partly depend on one's perception of one's role in the child's life and care. Although role‐based appeals are common in health care, role‐differentiated approaches to understanding parent‐clinician conflicts are underexplored in the pediatric bioethics literature. We argue that, while the parental role is recognized as (...) having social content or value, and sometimes legal force, it is not always recognized as having ethical content or value, as the clinician's role is. We draw together key insights from the normative and empirical literature on parental roles to show how a role‐based lens might inform clinicians’ and clinical ethicists’ approach to cases in which parents and clinicians disagree. (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)

This essay discusses sentient robot research through the lens of suffering. First three kinds of suffering are considered: physical, psychological, and existential. Physical pain is shown to b...

Suffering is an elusive aspect of healthcare, erroneously assumed to be located solely within the patient in the clinical encounter—an assumption that fails to acknowledge the pervasiveness of suffering endured by the physician. This flawed perception is morally problematic in the context of treating contested invisible disabilities (CIDs), which are often associated with medical ambiguity and uncertainty. In this paper, we argue for a relational reconceptualization of suffering in the context of CID to promote more effective care and improved physician-patient (...) relationships. We propose, through the lens of an ethics of care, that a relational ontology of suffering makes salient certain aspects of patient-physician relationships that co-produce suffering, such as professional incompetence, empathetic distress, and epistemic and hermeneutic injustice, rendering the experience of having and treating a CID more visible. We then discuss the important implications of this understanding for this invisibly disabled identity and the therapeutic alliance between physician and patient and explore the potential of narrative-based medicine to better equip physicians with the knowledge, guidance, and skill to fulfil their ethical responsibility to care for and respond to not only the suffering of this population, but their own suffering as well. (shrink)