To practice compassion, the recognition, understanding, and alleviation of patient suffering are of utmost importance. Nursing literature provides ample guidance about the nature and meaning and patients’ views about compassion and physical and psychological suffering. However, missing is the discussion about how nurses can achieve a deeper awareness of patients’ suffering to practice compassion. This paper aims to describe the relational inquiry nursing approach and illustrate how this approach can enable nurses to develop a deeper awareness of patient suffering. The (...) relational inquiry approach encompasses two components: a relational consciousness and inquiry as a form of action. Relational consciousness requires the nurses to focus on the concrete situations and relationships as well as recognize the intrapersonal, interpersonal, and contextual factors affecting the situations. The interpersonal factors are among and between the individuals, intrapersonal factors are within the individuals, and contextual factors are the hidden factors influencing the individuals and situations. Inquiry as an action requires a critical analysis of the experiences of individuals, situational contexts, and knowledge to inform the nursing care modalities and actions. This approach encourages nurses to use the philosophies of hermeneutic phenomenology, critical theory, and pragmatism. The phenomenological worldview allows nurses to interpret their own and patients’ experiences, the critical theory worldview allows nurses to examine the influence of social and cultural factors, and pragmatism allows nurses to question their prior knowledge and develop new knowledge in each situation. The relational inquiry approach allows nurses to develop a deeper understanding of patient suffering through building a therapeutic and trustworthy relationship, active listening, focusing on the details, and engaging in broad and situations specific inquiries to understand the patient narrative of suffering. Two case exemplars are shared to demonstrate how relational inquiry allowed nurses to move beyond recognizing physical suffering and understand patients’ emotional and psychological suffering. (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)

Victims of disaster suffer, not only at the very moment of the disaster, but also years after the disaster has taken place, they are still in an emotional journey. While many moral perspectives focus on the moment of the disaster itself, a lot of work is to be done years after the disaster. How do people go through their suffering and how can we take care of them? Research on human suffering after a major catastrophe, using an ethics of care (...) perspective, is scarce. People suffering from disasters are often called to be in distress and their emotional difficulties ‘medicalised’. This brings them often into a situation of long term use of medication, and one can wonder if medication is of help to them in the long run. In our paper, we will explore another moral perspective, focusing on the importance of the victims’ narrative and their lived experiences. We will use Paul Ricoeur’s phenomenological reflections from ‘Suffering is not the same as pain’ for conceptualizing human suffering and how to apply it to victims of disaster. Ricoeur suggests that suffering is not a quantity that can be measured, but a characteristic that should be studied qualitatively in interpersonal and narrative contexts. Above all, the perspective of care and listening could offer an opportunity to reconcile people from their loss and suffering. (shrink)

As medical technology becomes more sophisticate the ability to manipulate nature and manage disease forces the dilemma of when can becomes ought. Indeed, most bioethical discourse is framed in terms of balancing the values and interests and the benefits and burdens that inform principled decisions about how, when, and whether interventions should occur. Yet, despite advances in science and technology, one caregiver mandate remains as constant and compelling as it was for the earliest shaman—the relief of pain. Even when cure (...) is impossible, the physician's duty of care includes palliation. Moreover, the centrality of this obligation is both unquestioned and universal, transcending time and cultural boundaries.Although universally acknowledged, pain is a complex phenomenon for both the patient and the caregiver, influenced as much by personal values and cultural traditions as by physiological injury and disease. (shrink)

In recent years a large empirical literature has appeared on suffering at the end of life. In this literature it is recognized that suffering has existential and social dimensions in addition to physical and psychological ones. The non-physical aspects of suffering, however, are still understood as pathological symptoms, to be reduced by therapeutical interventions as much as possible. But suffering itself and the negative emotional states it consists of are intentional states of mind which, as such, make cognitive claims: they (...) are more or less appropriate responses to the actual circumstances of the patient. These circumstances often are such that it would rather be a pathological symptom not to be sad and not to suffer. Suffering, therefore, is sometimes and to some extent a condition to be respected. Although I do not dispute that the alleviation of suffering is the main aim of palliative care, in pursuing that aim we should acknowledge a constraint of realism. (shrink)

Als Vorstellung eines vom Wissen der Medizin abweichenden Behandlungsfalls können Fallberichte darauf Einfluss haben, welche Maßnahmen zukünftig als medizinisch indiziert gelten. Die öffentliche Präsentation der getroffenen Handlungen und Empfehlungen liegt in der Regel ausschließlich in der Hand ärztlicher Autor*innen – Betroffene kommen hingegen kaum zu Wort. Während in der klinischen Patientenversorgung bereits hohes Gewicht auf Patientenperspektiven und -erzählungen gelegt wird, scheinen sich diese Entwicklungen im Fallbericht als Form wissenschaftlicher Kommunikation so nicht widerzuspiegeln. Vor diesem Hintergrund wird im Folgenden aus gattungstheoretischer (...) Perspektive untersucht, welche Rolle Patientenperspektiven und -erzählungen nicht nur – wie in der bisherigen Forschung vor allem untersucht – im Bereich des Klinischen, sondern gerade auch des Kasuistischen und den damit verbundenen Fragen klinischer Indikationsreflexion und -empfehlung zukommen sollten. Dabei wird nicht zuletzt argumentiert, dass Narrationen analog zu Indikationsstellungen gerade ein Moment des Ungesicherten und Singulären betonen, das für die Textsorte des Fallberichts und daraus abgeleiteten Indikationsüberlegungen von spezifischem Wert ist. (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)

Although the notion of physician value neutrality in medicine may be traced back to the writings of Sir William Osler, it is relatively new to medicine and medical ethics. We argue in this paper that how physician value neutrality has been cashed out is often obscure and its defense not persuasive. In addition, we argue that the social/political implementation of neutrality, Political Liberalism, fails, and thus, PVN's case is weakened, for PVN's justification relies largely on the reasoning undergirding PL. For (...) these reasons, we conclude that PVN has no philosophical or ethical warrant and thus should be abandoned. We suggest that the physician present to her patients some type of statement or creed that would give them an idea of where she stands on important axiological issues and how these stands are cashed out clinically. (shrink)