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)

Definition of the problemIn medicine and bioethics, the term “suffering” is not clearly defined from a normative point of view. Nevertheless, suffering due to infertility is the starting point for medical interventions in assisted reproductive medicine. This implies that the unfulfilled desire to have children is a form of suffering, but the validity of this statement has not yet been clarified.ArgumentsBased on descriptions of some common concepts, certain characteristics of suffering are identified. We discuss the significance of suffering as an (...) anthropological condition in connection with the mission of medicine to alleviate human suffering. Furthermore, the risks of reproductive treatment and their significance for health are addressed.ConclusionWe conclude that the unfulfilled desire to have children is a form of suffering, and therefore has a normative value. The legitimacy of appropriate somatic intervention can only be established by taking the psycho-existential dimension of suffering into account. (shrink)

Der Begriff Leiden ist in der Medizin und in der Bioethik bisher kaum reflektiert und dahingehend in normativer Hinsicht wenig bestimmt. Dennoch bildet das Leiden an einer Unfruchtbarkeit den Ausgangspunkt für die medizintechnischen Interventionen der assistierten reproduktionsmedizinischen Behandlung. Dabei wird implizit angenommen, dass der unerfüllte Kinderwunsch ein Leiden ist. Ob der unerfüllte Kinderwunsch allerdings ein Leiden darstellt, ist bisher nicht eindeutig geklärt worden.Ziel dieses Beitrages ist es, die Annahme, dass es sich beim unerfüllten Kinderwunsch um ein Leiden handelt, zu überprüfen. (...) Anhand der Darstellung einiger gängiger Leidenskonzeptionen werden Merkmale von Leiden herausgearbeitet, die als treffende Grundannahmen für eine Leidensbestimmung gelten können. Es wird sich zeigen, dass der unerfüllte Kinderwunsch, entsprechend der Leidenskonzeptionen, als ein Leiden angesehen werden sollte, und ihm somit ein normativer Stellenwert zukommt. In einem weiteren Schritt ist zu klären, ob das Leiden an einem unerfüllten Kinderwunsch als ein Rechtfertigungsgrund für reproduktionsmedizinische Interventionen gelten kann. Dafür wird zum einen der Stellenwert von Leiden, als eine anthropologische Grundbedingung, im Zusammenhang mit dem Leidenslinderungsauftrag der Medizin diskutiert. Zum anderen werden die Risiken der reproduktionsmedizinischen Therapien sowie deren Bedeutung als Gesundheitsressourcen erörtert. Dabei wird deutlich, dass Leiden an einem unerfüllten Kinderwunsch immer ein psychosomatischer Komplex ist. Nur unter Berücksichtigung der psychoexistenziellen Dimension des Leidens ergibt sich eine Legitimation für eine angemessene somatische Intervention. (shrink)

Der Begriff Leiden ist in der Medizin und in der Bioethik bisher kaum reflektiert und dahingehend in normativer Hinsicht wenig bestimmt. Dennoch bildet das Leiden an einer Unfruchtbarkeit den Ausgangspunkt für die medizintechnischen Interventionen der assistierten reproduktionsmedizinischen Behandlung. Dabei wird implizit angenommen, dass der unerfüllte Kinderwunsch ein Leiden ist. Ob der unerfüllte Kinderwunsch allerdings ein Leiden darstellt, ist bisher nicht eindeutig geklärt worden.Ziel dieses Beitrages ist es, die Annahme, dass es sich beim unerfüllten Kinderwunsch um ein Leiden handelt, zu überprüfen. (...) Anhand der Darstellung einiger gängiger Leidenskonzeptionen werden Merkmale von Leiden herausgearbeitet, die als treffende Grundannahmen für eine Leidensbestimmung gelten können. Es wird sich zeigen, dass der unerfüllte Kinderwunsch, entsprechend der Leidenskonzeptionen, als ein Leiden angesehen werden sollte, und ihm somit ein normativer Stellenwert zukommt. In einem weiteren Schritt ist zu klären, ob das Leiden an einem unerfüllten Kinderwunsch als ein Rechtfertigungsgrund für reproduktionsmedizinische Interventionen gelten kann. Dafür wird zum einen der Stellenwert von Leiden, als eine anthropologische Grundbedingung, im Zusammenhang mit dem Leidenslinderungsauftrag der Medizin diskutiert. Zum anderen werden die Risiken der reproduktionsmedizinischen Therapien sowie deren Bedeutung als Gesundheitsressourcen erörtert. Dabei wird deutlich, dass Leiden an einem unerfüllten Kinderwunsch immer ein psychosomatischer Komplex ist. Nur unter Berücksichtigung der psychoexistenziellen Dimension des Leidens ergibt sich eine Legitimation für eine angemessene somatische Intervention. (shrink)

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)

Se propone una distinción clave en la investigación de la experiencia dolorosa, tan común y tan desagradable para la experiencia humana. Los estudios que afrontan problemas afectados por un componente emocional poderoso nacen con el hándicap de la heterogeneidad de la experiencia emocional y la dificultad para aislar el sentimiento de la emoción. Dolor físico y sufrimiento moral cumplen este requisito. El artículo valora las ventajas que aportaría al conocimiento del dolor físico, como experiencia humana, una distinción básica entre sufrimiento (...) moral y dolor físico, en el convencimiento de que el concepto de sufrimiento a secas es inválido para una investigación socialmente útil y genera confusión. El asunto parece importante, porque el dolor físico es uno de los procesos neurológicos que más afectan nuestras vidas, por lo que su afrontamiento, previa comprensión, nos incumbe a todos durante toda la vida. (shrink)

This paper has three main aims. The first is to provide a critical assessment of two rival concepts of suffering, that proposed by Cassell and that proposed in this journal by van Hooft. The second aim of the paper is to sketch a more plausible concept of suffering, one which derives from a Wittgensteinian view of linguistic meaning. This more plausible concept is labeled an ‘intuitive concept’. The third aim is to assess the prospects for scientific understanding of suffering.

Canadian nursing practice has been profoundly influenced by the legalization of medical assistance in dying in 2016, requiring that nurses navigate new and sometimes highly challenging experiences. Findings from our longitudinal studies of nurses' experiences suggest that these include deep emotional responses to medical assistance in dying, an urgency in orchestrating the perfect death, and a high degree of relational impact, both professionally and personally. Here we propose a theoretical explanation for these experiences based upon a relational ontology. Drawing upon (...) the work of Wildman, we understand a relational ontology to be one in which relationships are more fundamentally central than the conceptual entities that provide the context to practice. It is in a relationship that conceptual entities, and their affiliated values, are created and recreated. Seen as causal, relationships have ontological status, with important implications for how we consider the concepts of death, suffering, and time in this context. From a conceptual perspective, suffering is primarily self‐defined based upon personal histories, time reflects the potential remaining until death, and death is primarily biological and amoral, although social discourses of a good and bad death surround the death trajectory. However, within a relational ontology of medical assistance in dying, these understandings shift. Death becomes primarily social rather than biological, suffering is shared, and time until death is now clearly delimited. Accordingly, nurses assume a profound responsibility for influencing outcomes that are authentically person‐centered. These understandings provide important insights into nurses' experiences, enabling us to recognize the causal effects, both intended and unintended, of nurses' relational practices amidst the complexities of assisted death. Drawing on such a perspective, we find implications for how we provide spaces for nurses to reflect on, and have conversations about, their experiences with some of the greatest mysteries of life—death, suffering, and time. (shrink)

In his influential theory of health Nordenfelt bases the concepts of health and illness on the notions of ability and disability. A premise for this is that ability and disability provide a more promising, adequate, and useful basis than well-being and suffering. Nordenfelt uses coma and manic episodes as paradigm cases to show that this is so. Do these paradigm cases (and thus the premise) hold? What consequences does it have for the theory of health and illness if it they (...) do not? These are the key questions in this article, which first presents the relationship between pain and disability in Nordenfelt’s theory and the paradigm cases he uses to argue for the primacy of disability over pain. Then, Nordenfelt’s concepts of illness are outlined, highlighting its presumptions and arguments. The main point is that if you do not have an action-theoretical perspective, it is not obvious that disability is the core concept for illness. The compelling effect of the paradigm cases presupposes that you see ability as the primary issue. To those who do not share this presumption, people in coma may not be ill. There are alternative well founded arguments for the primacy of first person experiences for the concept of illness. Hence, we need better arguments for the primacy of disability over first person experiences in illness, or first-person experience should be more primarily included in the concept of illness. (shrink)

This paper has two aims. The first is to defend a recent critique of the leading medical theory of suffering, which alleges too narrow a focus on violent experiences of suffering. Although sympathetic to this critique, I claim that it lacks a counterexample of the kinds of experiences the leading theory is said to neglect. Drawing on recent clinical cases and the longer intellectual history of suffering, my paper provides this missing counterexample. I then answer some possible objections to my (...) defence, before turning to my second aim: an expansion of my counterexample into a spectrum of suffering that varies according to the selves and purposes that suffering affects. Next, I connect this spectrum to the tolerability of suffering, which I distinguish from its affective intensity. I conclude by outlining some applications of this distinction for the psychometric reliability of assessment instruments that measure suffering in clinical contexts. (shrink)

BackgroundThis article aims to contribute to a better conceptualization of pain and suffering by providing non-essential and non-naturalistic definitions of both phenomena. Contributions of classical evidence-based medicine, the humanistic turn in medicine, as well as the phenomenology and narrative theories of suffering and pain, together with certain conceptions of the person beyond them are critically discussed with such purpose.MethodsA philosophical methodology is used, based on the review of existent literature on the topic and the argumentation in favor of what are (...) found as better definitions of suffering and pain.ResultsPain can be described in neurological terms but cognitive awareness, interpretation, behavioral dispositions, as well as cultural and educational factors have a decisive influence on pain perception. Suffering is proposed to be defined as an unpleasant or even anguishing experience, severely affecting a person at a psychophysical and existential level. Pain and suffering are considered unpleasant. However, the provided definitions neither include the idea that pain and suffering can attack and even destroy the self nor the idea that they can constructively expand the self; both perspectives can b e equally useful for managing pain and suffering, but they are not defining features of the same. Including the existential dimension in the definition of suffering highlights the relevance of suffering in life and its effect on one’s own attachment to the world. An understanding of pain and suffering life experiences is proposed, meaning that they are considered aspects of a person’s life, and the self is the ever-changing sum of these experiences.ConclusionsThe provided definitions will be useful to the identification of pain and suffering, to the discussion of how to relieve them, and to a better understanding of how they are expressed and experienced. They lay the groundwork for further research in all these areas, with the twofold aim of a) avoiding epistemological mistakes and moral injustices, and b) highlighting the limitations of medicine in the treatment of suffering and pain. (shrink)

ZusammenfassungDas Lindern von Leiden ist eine zentrale Aufgabe der Medizin. Seit einigen Jahren ist eine verstärkte Inanspruchnahme des Leidensbegriffs im medizinischen Kontext zu beobachten. Eine Reflexion und Klärung dessen, was mit dem Begriff „Leiden“ und Begriffen wie „unerträgliches Leiden“ gemeint ist, bleibt aber weitgehend aus. Diese Tatsache wirft eine Reihe von theoretischen und praktischen Problemen auf, die im vorliegenden Beitrag identifiziert und diskutiert werden. Dazu werden zunächst die Schwierigkeiten bei der Anwendung des Leidensbegriffs in der medizinischen Praxis am Beispiel der (...) Indikationsstellung für eine tiefe und kontinuierliche palliative Sedierung dargestellt. Anschließend wird das Problem auf theoretischer Ebene angegangen. Es wird sich zeigen, dass im medizinischen Kontext mit einem Konzept des Leidens operiert wird, das a) eine starke normative Valenz hat, b) bei dem primär der subjektive Charakter des Leidens im Vordergrund steht und das c) inhaltlich nicht ausreichend differenziert ist. Anschließend werden zwei Konzepte des Leidens vorgestellt und im Hinblick auf ihre Operationalisierbarkeit im medizinischen Kontext befragt. Auf dem Hintergrund anthropologischer Vorannahmen, werden schließlich in einem letzten Abschnitt Perspektiven zum Umgang mit dem Leidensbegriff in der Medizin entwickelt. (shrink)

In this project, I argue that the conventional view of personal autonomy that is operational in contemporary American culture, bioethics and medical practice places undue emphasis on individualism and a limited range of personal qualities and attributes (such as self-sufficiency). Instead, I argue in favor of a relational approach to autonomy which recognizes that each person that exists has certain minimal connections or relations to others, and these connections/relations are identity-forming. Unfortunately, current medical practices have tended to overemphasize individuality and (...) choice (consistent with the conventional view) while minimizing or excluding these relational aspects. As a result, informed consent and patient choice have taken the place of a more robust, relational sense of autonomy in these contexts. But this approach fails to appreciate the ways that illness, uncertainty, and suffering may threaten identity and make it more difficult to meaningfully exercise autonomy—especially when construed in such narrow terms. Through an exploration of the nature of suffering and its effects on the person, I argue that to effectively treat ailments and alleviate suffering, patients must be cared for in ways that respect and restore identity, which also promotes autonomy. This kind of respect derives in part from acknowledging and nurturing relationality, especially in medical decision-making contexts. (shrink)