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)

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)

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)