In this paper I aim to show why pediatric suffering must be understood as a judgment or evaluation, rather than a mental state. To accomplish this task, first I analyze the various ways that the label of suffering is used in pediatric practice. Out of this analysis emerge what I call the twin poles of pediatric suffering. At one pole sits the belief that infants and children with severe cognitive impairment cannot suffer because they are nonverbal or lack subjective life (...) experience. At the other pole exists the idea that once child suffering reaches some threshold it is ethical to eliminate the sufferer. Concerningly, at both poles, any particular child vanishes from view. Second, in an attempt to identify a theory of suffering inclusive of children, I examine two prominent so-called experiential accounts of suffering. I find them both wanting on account of their absurd entailments and their flawed assumptions regarding the subjective experiences of people who cannot communicate expressively. Finally, I extend arguments found in Alastair MacIntyre’s Dependent Rational Animals to argue that child suffering can be understood only as a set of absences—absences of conditions such as love, warmth, and freedom from pain. An evaluation of these absences reveals the exquisite dependency of children. It also discloses why pediatric suffering is necessarily a social and political event. Unlike adults, children will never be either the authors or the mitigators of their own suffering. Rather, children must rely wholly on others in order to resist suffering, grow, and flourish. (shrink)

How can we draw the line between health and disease? This crucial question of demarcation has immense practical implications and has troubled scholars for ages. The question will be addressed in three steps. First, I will present an important contribution by Rogers and Walker who argue forcefully that no line can be drawn between health and disease. However, a closer analysis of their argument reveals that a line-drawing problem for disease-related features does not necessarily imply a line-drawing problem for disease (...) as such. The second step analyzes some alternative approaches to drawing the line between health and disease. While these approaches do not provide full answers to the question, they indicate that the line-drawing question should not be dismissed too hastily. The third step investigates whether the line-drawing problem can find its solution in the concept of suffering. In particular, I investigate whether returning to the origin of medicine, with the primary and ultimate goal of reducing suffering, may provide sources of demarcation between health and disease. In fact, the reason why we pay attention to particular phenomena as characteristics of disease, consider certain processes to be relevant, and specific functions are classified as dys-functions, is that they are related to suffering. Accordingly, using suffering as a criterion of demarcation between health and disease may hinder a wide range of challenges with modern medicine, such as unwarranted expansion of disease, overdiagnosis, overtreatment, and medicalization. (shrink)

When talking about decisionmaking for children with a life-threatening condition, the death of children with brain tumors deserves special attention. The last days of the lives of these children can be particularly harsh for bystanders, and raise questions about the suffering of these children themselves. In the Netherlands, these children are part of the group for whom a wide range of end-of-life decisions are discussed, and questions raised. What does the end-of-life for these children look like, and what motivates physicians (...) and parents to make decisions that may affect the life and death of these children? This article highlights the story of the parents of the sisters Roos and Noor. When both their daughters were diagnosed with a hereditary brain tumor, they had to make similar decisions twice. Their story sheds light on the suffering of children in the terminal phase, and how this suffering may motivate parents and physicians to make decisions that influence the end of life of these children’s lives.We argue that complete knowledge about suffering in the terminal phase of children with brain tumors is impossible. However, by collecting experiences like those of Roos and Noor, we can move toward an experienced-based understanding and better guide parents and physicians through these hardest of decisions. (shrink)

The best interests principle is commonly utilized in acute care settings to assist with decision making about life-saving and life-sustaining treatment. This ethical principle demands that the decision maker refers to some conception of quality of life that is relevant to the individual patient. The aim of this article is to describe the factors that are required to be incorporated into an account of quality of life that will provide a morally justifiable basis for making a judgement about the future (...) quality of life, and therefore the best interests, of critically ill patients who are mentally incompetent. This account consists of three major components - pain and suffering, body functioning, and autonomy - and is applicable in situations where very limited information is available to guide decision making. This framework helps to make decisions about the provision of life-saving treatment that are as consistent as possible in all patient situations. (shrink)