Narrative analysis is well established as a means of examining the subjective experience of those who suffer chronic illness and cancer. In a study of perceptions of the outcomes of treatment of cancer of the colon, we have been struck by the consistency with which patients record three particular observations of their subjective experience: the immediate impact of the cancer diagnosis and a persisting identification as a cancer patient, regardless of the time since treatment and of the presence or absence (...) of persistent or recurrent disease; a state of variable alienation from social familiars, expressed as an inability to communicate the nature of the experience of the illness, its diagnosis and treatment; and a persistent sense of boundedness, an awareness of limits to space, empowerment and available time. These subjectivities were experienced in varying degree by all patients in our study. Individual responses to these experiences were complex and variable. The experiences are best understood under the rubric of a category we call “liminality”. We believe that all cancer patients enter and experience liminality as a process which begins with the first manifestations of their malignancy. An initial acute phase of liminality is marked by disorientation, a sense of loss and of loss of control, and a sense of uncertainty. An adaptive, enduring phase of suspended liminality supervenes, in which each patient constructs and reconstructs meaning for their experience by means of narrative. This phase persists, probably for the rest of the cancer patient’s life. The experience of liminality is firmly grounded in the changing and experiencing body that houses both the disease and the self. Insights into the nature of the experience can be gained from the Existentialist philosophers and from the history of attitudes to death. Understanding liminality helps us to understand what it is that patients with cancer seek from the system to which they turn for help. Its explication should therefore be important for those who provide health care, those who educate health care workers and those concerned to study and use outcomes as administrative and policy making instruments. (shrink)

(First paragraphs.) — The notion of “mental time” refers to the experience and awareness of time, including that of past, present, and future, and that of the passing of time. This experience and awareness of time raises a number of puzzling questions. How do we experience time? What exactly do we experience when we experience time? Do we actually experience time? Or do we infer time from something in, or some aspect of our experience? And so forth. These and many (...) related questions in the “philosophy of mental time”, the topic of this special issue of the Annals of the Japan Association for Philosophy of Science, are not purely philosophical questions. Or at least, they are not likely to be satisfactorily answered by philosophers alone. Rather, they also need the input of neuroscientists, psychologists, physicists, linguists, and others. And conversely, answers to these questions may have implications outside the scope of philosophy. The papers in this special issue illustrate this inherent multi- or interdisciplinarity of the philosophy and science of mental time. In this theme introduction, we want to give a few more examples to illustrate this interdisciplinarity, but also to point out that much of the field is still wide open—that is, these illustrations raise more questions than answers. (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)

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)

Das normative Grundverständnis der kurativen Medizin und ein Trend, sich ihr zu entwinden, wird beschrieben. Durch systematische Betrachtung des Trends wird der Begriff einer „wunscherfüllenden Medizin“ eingeführt und mit der kurativen Medizin kontrastiert. Am Beispiel der Schönheitschirurgie und der Kritik des „Schönheitswahns“ wird deutlich gemacht, dass die Bewertung von Phänomenen wunscherfüllender Medizin in liberalen Gesellschaften sich nur auf schwache normative Ressourcen stützen kann. Nutzen-Risiko-Argumente und Kohärenzargumente, bezogen auf Lebensentwürfe, stellen die vergleichsweise stärksten dar. Wunscherfüllende Medizin erscheint zwiespältig, einerseits erhöht sie (...) die Klientenzentrierung und Responsivität des Medizinsystems, andererseits befördert sie Kommerzialisierungstendenzen. (shrink)

In this paper, I will explore the concept that healing activities shape the objects of therapy and seek to construct those objects through therapeutic activities. Objects of therapy are the persons, patients, human bodies, diseases, physiological processes and personal suffering—that which clinical medicine constructs through its distinctive formative processes, practices and knowledge. The rationale for choice of philosophical sources namely, Cassirer, Foucault, the anthropological perspective of Good and the sociological account of Frank will be discussed. The claim articulated by Good (...) will be examined and its relationship to culture, illness, medical knowledge, practice, truth, and science. I then focus on Frank's concepts of the patient and the body and how medical knowledge and practices affects it. The concept that the medicalization of the illness narrative silences the patient's voice requiring an ethic of listening will be emphasized, described and further supported by Charon's (2006, Narrative medicine: Honoring the stories of illness. New York, NY: Oxford University Press) and Cassell's (2015, The nature of suffering and the goals of medicine. New York, NY: Oxford University Press) thoughts on narrative of illness in clinical medicine. My position concludes that healing activities construct the objects of therapy: as the medical culture's way of seeking truth; as medicine's way of mediating and organizing forms of reality through culture and symbolic forms; and, as medicine's way of entering the body and constructing the disease. Lastly, I suggest that in spite of the remarkable progress in the control of disease, the failure to address the interpretation of illness meanings is a fundamental flaw in the work of “doctoring.” The experience and meanings of illness are at the centre of clinical practice and is a moral, political, ethical and professional obligation. The person is a cultural construct, a complex and culturally shaped way of experiencing self and other, and cultural “work” is required to constitute the person who is the object of medical attention and it also necessitates the ethic of listening. (shrink)

Human Progress is often understood to be a rather natural and obvious truth of human existence. That this is not necessarily so, is indicative of the pervasive social, psychological, and educational inculcation that sustains its ubiquitous acceptance. Moreover, the uncritical and ill‐informed understanding of Progress as an unquestioned expression of human beneficence has serious consequences for those concerned with the health and welfare of people. It is argued in this paper that, much of what we might consider deleterious in the (...) socio‐political milieu that now confronts us is, to a significant extent, a matter of progressive ideological epistemology and its ensuing manner of human institutionalization. Part one contends that the current socio‐political structure of the current postmodern affairs is in reality that of a pervasive postmodern economic ideology. Part two provides a brief overview of the historical and philosophical development of Progress as an idea, including some of the profound effects wrought by it on human affairs in the contemporary world. Finally, Part three presents a discussion of the influential effects of the philosophy of Progress on the epistemology of human health and welfare intervention, specifically that of nursing and its claim to a holistic ethic of Caring. (shrink)

Canguilhem’s take on the normal and the pathological offers an interesting insight to elaborate on a phenomenological account of illness and the medical encounter within the scope of Heidegger’s Daseinanalysis from Being and Time. Fredrik Svenaeus has drawn from the latter a definition of illness as an “unhomelike being in the world”. In this paper, I will elaborate on these concepts through the tale of Adriana, a cancer fighter that got diagnosed at age 26. Through her story, I will try (...) to illustrate Canguilhem’s main criticism against medicine's current state, as well as describe phenomenologically what it means to be ill, and what illness does to the patient's being-in-the-world. (shrink)

Western culture has a few traditions of representing the human body – among them mortuary art (gisants), the freak show, the culture of the relics, renaissance art and pre-modern and modern anatomy. A historical analysis in the spirit of Norbert Elias is offered with regard to body – person relationship in anatomy. Modern anatomy is characterized by separating the story of the person from the story of the body, a strategy that is incompatible with the bio-psycho-social paradigm of clinical medicine. (...) The paper discusses different aspects of the above traditions and how they might bear on this conflict and on contemporary bioethics and bedside practice. (shrink)

In refutation of hedonism, Nozick offered a hypothetical thought experiment, known as the Experience Machine. This paper maintains that end-of-life-suffering of the kind that is resistant to state-of-the-art palliation provides a conceptually equal experiment which validates Nozick’s observations and conclusions. The observation that very many terminal patients who suffer terribly do no wish for euthanasia or terminal sedation is incompatible with motivational hedonism. Although irreversible vegetative state and death are equivalently pain-free, very many people loath the former even at the (...) price of the latter. This attitude cannot be accounted for by hedonism. Following these observations, the goals of palliative care are sketched along four circles. The first is mere removal or mitigation of noxious symptoms and suffering. The second targets sufferings that stymie patients’ life-plans and do not allow them to be happy, the third targets sufferings that interfere with their pursuance of other goods (palliation as a primary good). The fourth is the control of sufferings that do not allow the person to benefit from any human good whatsoever (“total pain” or critical suffering). Only in the fourth circle are people hedonists. (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...

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)

Palliative care names as one of its central aims to prevent and relieve suffering. Following the concept of “total pain”, which was first introduced by Cicely Saunders, PC not only focuses on the physical dimension of pain but also addresses the patient’s psychological, social, and spiritual suffering. However, the goal to relieve suffering can paradoxically lead to a taboo of suffering and imply adverse consequences. Two scenarios are presented: First, PC providers sometimes might fail their own ambitions. If all other (...) means prove ineffective terminal sedation can still be applied as a last resort, though. However, it may be asked whether sedating a dying patient comes close to eliminating suffering by eliminating the sufferer and hereby resembles physician-assisted suicide, or euthanasia. As an alternative, PC providers could continue treatment, even if it so far prove unsuccessful. In that case, either futility results or the patient might even suffer from the perpetuated, albeit fruitless interventions. Second, some patients possibly prefer to endure suffering instead of being relieved from it. Hence, they want to forgo the various bio-psycho-socio-spiritual interventions. PC providers’ efforts then lead to paradoxical consequences: Feeling harassed by PC, patients could suffer even more and not less. In both scenarios, suffering is placed under a taboo and is thereby conceptualised as not being tolerable in general. However, to consider suffering essentially unbearable might promote assisted dying not only on an individual but also on a societal level insofar as unbearable suffering is considered a criterion for euthanasia or PAS. (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)

It is perhaps most useful to approach the Doctor-Patient relationship (DPR) by admitting that it’s complicated. We review some of the strategies that have been employed to mitigate this complexity, zeroing in on one that promises to capture the main features of the DPR without eliminating some of its more important, existential components; pieces of the puzzle that must be retained if we are to avoid oversimplification and the errors that can arise by ignoring important foundational properties. We believe that (...) a useful way to look at the DPR and to capture essential features that must be balanced in the process is provided by Partnership Theory and its definition in terms of the so-called domination and partnership systems. We apply this theory to the DPR and investigate the implications of this application to health care. We see that in the absence of mitigating circumstances, adoption of the patient-as-partner model serves healthcare well and is flexible enough to accommodate circumstances that dictate modifications. (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)

Professional medical ethics demands of health care professionals in addition to specific duties and rules of conduct that they embody a responsible and trustworthy personality. In the public discussion, different concepts are suggested to describe the desired implied attitude of physicians. In a sequel of three articles, a set of three of these concepts is presented in an interpretation that is meant to characterise the morally emotional part of this attitude: “empathy”, “compassion” and “care”. In the first article of the (...) series, “empathy” has been developed as a mainly cognitive and morally neutral capacity of understanding. In this article, the emotional and virtuous core of the desired professional attitude—compassion—is elaborated. Compassion is distinguished from sympathy, empathy and pity. Several problems of compassion as a spontaneous, warm emotion for being a professional virtue are discussed: especially questions of over-demand, of justice and of concerns because of a possible threat to the patient’s dignity and autonomy. An interpretation of compassion as processed and learned professional attitude, that founds dignity on the general idea of man as a sentient being and on solidarity, not on his independence and capacities, is developed. It is meant to rule out the possible side effects and to make compassion as a professional attitude and as professional virtue attractive, teachable and acquirable. In order to reach the adequate warmth and closeness for the particular physician-patient-relation, professional compassion has to be combined with the capacity of empathy. If appropriate, the combination of both empathy and compassion as “empathic compassion” can demand a much warmer attitude towards the patient than each of the elements alone, or the simple addition of them can provide. The concept of “care” that will be discussed in a forthcoming article of this sequel is a missing necessary part to describe the active potential of the desired moral attitude of the physician more completely. The reconstruction of the desired professional attitude in terms of “empathic compassionate care” is certainly not the only possible description, but it is a detailed proposal in order to give an impulse for the discussion about the inner tacit values and the meaning of medicine and clinical healthcare professions. (shrink)

In professional medical ethics, the physician traditionally is obliged to fulfil specific duties as well as to embody a responsible and trustworthy personality. In the public discussion, different concepts are suggested to describe the desired underlying attitude of physicians. In this article, one of them—empathy—is presented in an interpretation that is meant to depicture (together with the two additional concepts compassion and care) this attitude. Therefore empathy in the clinical context is defined as the adequate understanding of the inner processes (...) of the patient concerning his health-related problems. Adequacy is scrutinized on behalf of the emotional and subjective involvement of he physician, and on the necessary dependence on medical—moral—goals. In the present interpretation, empathy alone is no guarantee of the right moral attitude, but a necessary instrumental skill in order to perceive and treat a patient as an individual person. The concepts of compassion and care that will be discussed in two forthcoming articles are necessary parts to describe the desired moral attitude of the physician more completely. (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)

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)

Human Progress is often understood to be a rather natural and obvious truth of human existence. That this is not necessarily so, is indicative of the pervasive social, psychological, and educational inculcation that sustains its ubiquitous acceptance. Moreover, the uncritical and ill‐informed understanding of Progress as an unquestioned expression of human beneficence has serious consequences for those concerned with the health and welfare of people. It is argued in this paper that, much of what we might consider deleterious in the (...) socio‐political milieu that now confronts us is, to a significant extent, a matter of progressive ideological epistemology and its ensuing manner of human institutionalization. Part one contends that the current socio‐political structure of the current postmodern affairs is in reality that of a pervasive postmodern economic ideology. Part two provides a brief overview of the historical and philosophical development of Progress as an idea, including some of the profound effects wrought by it on human affairs in the contemporary world. Finally, Part three presents a discussion of the influential effects of the philosophy of Progress on the epistemology of human health and welfare intervention, specifically that of nursing and its claim to a holistic ethic of Caring. (shrink)

This analysis presents an epistemological and moral examination of suffering. It addresses the specific questions: (1) What is suffering? (2) Can one's suffering be assessed by another? and (3) What is the moral significance of suffering? The epistemological analysis is orientated by Peter Hacker's framework for the investigation of emotions, demonstrating that suffering is an emotion. This leads to a discussion of whether suffering is a phenomenon that can be evaluated objectively by another person who is not experiencing the suffering, (...) questioning the validity of some decisional models for limiting life-sustaining therapies with the aim of preventing suffering. This analysis highlights that understandings of suffering are value laden. It is conventionally implied that suffering is `bad' and that it should be eliminated. Suffering is commonly regarded as a moral wrong that needs to be made right by health care. This article concludes with a recommendation for a paradigm shift in how suffering can be better understood, through the practice of empathic attunement. (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)