In this article some of the presuppositions that underly the current ideas about decision making capacity, autonomy and independence are critically examined. The focus is on chronic disorders, especially on chronic physical disorders. First, it is argued that the concepts of decision making competence and autonomy, as they are usually applied to the problem of legal (in)competence in the mentally ill, need to be modified and adapted to the situation of the chronically (physically) ill. Second, it is argued that autonomy (...) and dependence must not be considered as two mutually exclusive categories. It is suggested that decision making may take on the form of a more or less conscious decision not to be involved in making all kinds of explicit and deliberate decisions. Elaborating on Agich's distinction between ideal and actual autonomy, the concept of Socratic autonomy is introduced. (shrink)

Medicine does not usually consider the human body from an aesthetic point of view. This article explores the notion of the lived body as aesthetic object in anthropological medicine, concentrating on the views of Buytendijk and Straus on human uprightness and gracefulness. It is argued that their insights constitute a counter-balance to the way the human body is predominantly approached in medicine and medical ethics. In particular, (1) the relationship between anthropological, aesthetic and ethical norms, (2) the possible danger of (...) a naturalistic fallacy, (3) the implications for the care of disabled people and (4) the intrinsic aesthetic quality of the human body are dealt with. (shrink)

Periodic attacks of uncertain origin, where the clinical presentationresembles epilepsy but there is no evidence of a somatic disease, arecalled Pseudo-Epilepsy or Pseudo-Epileptic Attack Disorder (PEAD). PEADmay be called a `non-disease', i.e. a disorder on the fringes ofestablished disease patterns, because it lacks a rationalpathophysiological explanation. The first aim of this article is tocriticize the idea, common in medical science, that diseases are realentities which exist separately from the patient, waiting to bediscovered by the doctor. We argue that doctor and (...) patient construct adisease, and that the construction of the disease PEAD includes manynormative evaluations. The second aim is to provide insight into thesuffering of patients with PEAD. We focus on three aspects of thepatient, identity, autonomy and responsibility. We present somecharacteristic descriptions of (pseudo-)epileptic attacks by FjodorDostoevsky, Gustave Flaubert and Thomas Mann. We argue that diagnosingPEAD reduces a meaningful life event into an insignificant, thoughintriguing, medical phenomenon, and that the patient will not benefitfrom being diagnosed as having PEAD. (shrink)

During the last decade a “technical” approach has become increasingly influential in health care priority setting. The various country reports illustrate, however, that non-technical considerations cannot be avoided. As they often remain implicit in health care package decisions, this paper aims to make these normative judgements an explicit part of the procedure. More specifically, it aims to integrate different models of distributive justice as well as the principle of solidarity in four different phases of a decision-making procedure, and to identify (...) important moral choices which present themselves. First four important justice models are discussed, then a justification is given for their inclusion in a four-step decision making procedure. This is followed by a discussion of different justice and solidarity problems—with their inherent conceptual difficulties in each of these stages. The paper concludes with a summary of the major moral choices that are to be made in health care package decisions. (shrink)

Social health disparities are increasing in most countries around the world. During the past two decades, a large amount of evidence has emerged about the health consequences of social inequalities. Despite such evidence, the concept of medical fairness, as traditionally defined by the World Medical Association, has remained unchallenged and even reinforced by some scholars who emphasize that doctors should remain neutral to the socioeconomic status of their patients when providing clinical care. The inconsistency between public health and clinical care (...) perspectives raises tension between a narrow interpretation of the ethics of justice, which stresses the importance of equality and impartiality, and the ethics of care, which highlights the importance of particularity and individuality in clinical practice. This article analyzes the concept of medical fairness using the emerging evidence that demonstrates the impact of social health disparities on clinical care. It proposes a new approach of medical fairness based on equity rather than on equality and provides a consistent ethical framework based on Paul Ricoeur’s three levels of medical judgments. This integrative framework provides a better balance between public health and clinical care in medical practice. (shrink)

In decisions about inclusion (or exclusion) of health care services in the benefit package, different interpretations of notions like health, health risk, disease, quality of life or necessary care often remain implicit. Yet they can lead to different benefit package decisions. After a brief discussion of these concepts in definitions of the goals of medicine, the various value-judgements implicit in interpretations of key notions in health care are analysed and conclusions are drawn with regard to the composition of decision making (...) bodies at various levels. It is further argued that such a body needs to discuss the various interpretations of key-notions explicitly in the various phases of a priority-setting procedure so that more consistent choices can be made in health care priority setting. (shrink)

This paper focuses on the causation of diseases, particularly on the idea of a “genetic cause” taking Alzheimer’s Disease (AD) as an example. We (1) provide some historical information and a synopsis of the current knowledge on the etiology and pathogenesis of AD, (2) analyse some conceptual problems related to the notion of “genetic disease” (3) elaborate on the alleged (genetic) cause of AD, and (4) place the discussion on the cause of AD in a broader philosophical context, paying attention (...) to a constructivist perspective, the notions of causal connection and causal selection, and to some practical and normative consequences of our analysis. We conclude (a) that AD is not a specific disease entity with one specific cause, (b) that the idea of a single (sufficient) cause can still function as a heuristic tool in AD research and practice, and (c) that a “belief” in causation can go together with the notions of multicausality and probability. (shrink)

This article discusses the relationship between personal and professional qualities in hospice nurses. We examine the notion of self-esteem in personal and professional identity. The focus is on two questions: (1) what is self-esteem, and how is it related to personal identity and its moral dimension? and (2) how do self-esteem and personal identity relate to the professional identity of nurses? We demonstrate it is important that the moral and personal goals in nurses' life coincide. If nurses' personal view of (...) the good life is compatible with their experiences and feelings as professionals, this improves their performance as nurses. We also discuss how good nursing depends on the responses that nurses receive from patients, colleagues and family; they make nurses feel valued as persons and enable them to see the value of the work they do. (shrink)

This paper explores the ambiguous notion of bodily integrity, focusing on male and female circumcision. In the empirical part of the study we describe and analyse the various meanings that are given to the notion of bodily integrity by people in their daily lives. In the philosophical part we distinguish (1) between a person-oriented and a body-oriented approach and (2) between four levels of interpretation, i.e. bodily integrity conceived of as a biological wholeness, an experiential wholeness, an intact wholeness, and (...) as an inviolable wholeness. We argue that bodily integrity is a prima facie principle in its own right, closely connected with, but still fundamentally different from, the principle of personal autonomy, that is, autonomy over the body. (shrink)

The notion of home is well known from our everyday experience, and plays a crucial role in all kinds of narratives about human life, but is hardly ever systematically dealt with in the philosophy of medicine and health care. This paper is based upon the intuitively positive connotation of the term “home.” By metaphorically describing the goal of palliative care as “the patient’s coming home,” it wants to contribute to a medical humanities approach of medicine. It is argued that this (...) metaphor can enrich our understanding of the goals of palliative care and its proper objectives. Four interpretations of “home” and “coming home” are explored: (1) one’s own house or homelike environment, (2) one’s own body, (3) the psychosocial environment, and (4) the spiritual dimension, in particular, the origin of human existence. Thinking in terms of coming home implies a normative point of view. It represents central human values and refers not only to the medical-technical and care aspects of health care, but also to the moral context. (shrink)

In the current debate about the pros and cons of routine (nonreligious) neonatal circumcision (RNC), the emphasis is on medical justifications for the practice. Questions of human rights also are widely discussed. However, even if the alleged medical benefits of RNC were to outweigh the harms and risks, this is not a sufficient justification for RNC. The practice of RNC is questionable from a variety of viewpoints including not only the ideal of evidence-based medicine and human rights considerations, but also (...) the notion of respect for bodily integrity. (shrink)

: The gene patenting debate, which proved to be a focal point for divergent moral concerns about recent developments in genome research and biotechnology, has revealed that the moral status of DNA is not clear. One of the arguments used to stop undesirable developments was that DNA possesses a unique status, which renders it unfit for patenting. This paper investigates the allegedly unique (moral) status of genetic material and the information it holds from different perspectives. Several properties of DNA prove (...) to be unique. We examine the relevance of these for patentability of genes and conclude that only the unique symbolic meaning of DNA is a relevant factor, which should be taken into account but weighed against other interests involved. (shrink)

The purpose of this paper is to elaborate on the notion of clinical medicine as a hermeneutical enterprise and to bridge the gap between the general perspectives of hermeneutics and the particularities of medical practice. The case of a patient with low back pain is analyzed. The discussion centers around the metaphor of the patient as a text and a model of five social discourses about low back pain. The problems addressed are: (1) the nature of a moral experience, (2) (...) the variety of available texts, (3) the difference between the doctor's and patient's narratives, and (4) the patient's and doctor's responsibility regarding the existential, biographical meaning of an illness. Although many problems are left unsolved, it is argued that from a philosophical point of view the notion of medicine as a hermeneutical enterprise opens up the possibility of gaining insight in the foundations of the clinical encounter. (shrink)

Good nursing is more than exercising a specific set of skills. It involves the personal identity of the nurse. The aim of this article is to answer two questions: (1) what kind of person should the hospice nurse be? and (2) how should the hospice nurse engage in caring conversations? To answer these questions we analyse a nurse’s story that is intended to be a profile of an exemplary hospice nurse. This story was constructed from an analysis of five semistructured (...) interviews with hospice nurses, based on the ‘ethics of the caring conversation’, which is inspired by the ethical perspective of Paul Ricoeur. The research questions concentrate on the norms of respect, responsibility and reciprocity, which are integral parts of the ‘ethics of the caring conversation’. (shrink)

In his concept of an anthropological physiology, F.J.J. Buytendijk has tried to lay down the theoretical and scientific foundations for an anthropologically-oriented medicine. The aim of anthropological physiology is to demonstrate, empirically, what being specifically human is in the most elementary physiological functions. This article contains a sketch of Buytendijk''s life and work, an overview of his philosophical-anthropological presuppositions, an outline of his idea of an anthropological physiology and medicine, and a discussion of some episternological and methodological problems. It is (...) demonstrated that Buytendijk''s design of an anthropological physiology is fragmentary and programmatic and that his methodology offers few points of contact for specific anthropological experimental research.Notwithstanding, it is argued that Buytendijk''s description of the subjective, animated body forms a pre-eminent point of reference for all research in physiology and psychology in which the specific human aspect is not ignored beforehand. (shrink)

This paper investigates which of the variouslegal notions proposed for human DNA is themost appropriate from an ontological viewpoint – unique legal status, private property, commonproperty, person, or information. The focus is onthe difficulties that private property, commonproperty and person present. By usingHarré''s notion of ``file-self'''' we arguethat, ontologically, the most appropriate legalnotion to be applied is information. This hasconsequences for storage, control and use ofgenetic information as well as identifiablehuman body material.

Over the last few decades there has been a revival of interest in virtue ethics, with the emphasis on the virtuous caregiver. This paper deals with the ‘virtuous patient’, specifically the patient with End Stage Renal Disease (ESRD). We believe that a virtue approach provides insights not available to current methods of studying coping styles and coping strategies. Data are derived from seven semi-structured in-depth interviews. The transcripts of the interviews were subjected to an Interpretative Phenomenological Analysis (IPA). The focus (...) of the analysis was on ‘living well with chronic illness’. It appears that the moral challenges faced by patients with an ESRD are manifold. When they are invited to tell the story of their illness, they do not explicitly speak of virtues, but they often refer to moral qualities, and to attitudes that can be regarded as virtuous. We identify several such concepts in the narratives of patients with ESRD. We conclude that the Aristotelian model of virtue ethics is particularly descriptively (and possibly also normatively) relevant to the explanation of the life narratives and the moral challenges of patients with an ESRD. (shrink)

The main measure of quality of life is well-being. The aim of this article is to compare insights about well-being from contemporary philosophy with the practice-related opinions of palliative care professionals. In the first part of the paper two philosophical theories on well-being are introduced: Sumner’s theory of authentic happiness and Griffin’s theory of prudential perfectionism. The second part presents opinions derived from interviews with 19 professional palliative caregivers. Both the well-being of patients and the well-being of the carers themselves (...) are considered in this empirical exploration. In the third part the attention shifts from the description of “well-being” to prescriptions for the promotion of well-being. Our interview data are analysed in light of the theories of Sumner and Griffin for clues to the promotion of “well-being.” The analysis (1) underscores the subject-relativity of well-being, (2) points out that values that are considered important in every life still seem to be relevant (at least in palliative care practice), and (3) shows the importance of living a certain sort of life when aiming to enhance dying patients’ well-being. (shrink)

Palliative care and euthanasia have become the subject of ethical and political debate in Poland. However, the voice of nurses is rarely heard. The aim of this study is to explore the perception of palliative care and euthanasia among recent university bachelor degree graduates and experienced nurses in Poland. Specific objectives include: self-assessment of the understanding of these terms, recognition of clinical cases, potential acceptability of euthanasia, and an evaluation of attitudes towards palliative care and euthanasia. This is an exploratory (...) study. A convenience sample of 206 recent graduates and 252 experienced nurse practitioners were interviewed. A structured questionnaire was used for collecting and interpreting data. Subjective perception of the terms `palliative care' and `euthanasia' was high and consistent with the recognition of clinical cases. The majority of the nurses excluded euthanasia from palliative care. They recognized personal philosophy of life as the most influential factor affecting attitudes towards euthanasia. The importance of the law was valued more highly by the experienced nurses. (shrink)

The aim of this article is to shed some light on our current perception of death and our attitude towards it, focusing especially on the way in which death is approached in the practice and theory of medicine and health care. Instead of concentrating on details of particular questions, such as euthanasia, assisted suicide or withholding or withdrawing medical treatment, I will try to analyse our modern image of death from a wider perspective. Inspired by the view of Callahan , (...) I believe that we need to reflect on death itself, trying to find meaning in it, if indeed there is meaning to be found at all.It is my impression that, from a historical point of view, the way we deal with death in our modern society is quite new and unprecedented. In the first place, technological developments in modern medicine have provided us with the means to keep seriously ill individuals alive and to postpone death. In addition, the influence of what I would call “Western activism” has not only led to the tendency to postpone death, but also to hasten it in situations where natural death is apparently too slow in coming. History shows that there have been times when people have had entirely different attitudes towards death, forgotten, yet nonetheless meaningful, attitudes from which we have much to learn.In order to reach a better understanding of the phenomenon of death in modern society, I would first like to present some ‘images of death’ from the past using the framework of the French historian Philippe Ariès who has been among the best-known authors on this subject during the last two or three decades. Notwithstanding the fact that Ariès’ approach raises important methodological and historiographical questions , his analysis, in itself, provides a great deal of interesting material. After a presentation of Ariès’ view and a brief comment on his methodological approach, I will proceed to the problem of definitions of death and finally conclude with some comments concerning our modern image of death. (shrink)

“Home” is well known from everyday experience, plays a crucial role in all kinds of narratives about human life, but is hardly ever systematically dealt with in the philosophy of medicine and health care. The notion of home is ambiguous, is often used in a metaphorical way, and is closely related to concepts such as house and dwelling. In this paper the phenomenon of home is explored by means of some phenomenological writings of Heidegger, Bollnow, Bachelard and Levinas. Common in (...) their views is that being at home and dwelling mean something more fundamental than an activity we do along with other activities, such as working and travelling. Dwelling, building a house and being at home are fundamental aspects of human existence. Being human is dwelling. While exploring the relevance of this phenomenological perspective for medical theory and practice, the focus is on the care of people suffering from dementia. (shrink)

In this paper we analyse some ethical and philosophical questions related to the development of memory enhancing drugs (MEDs) and anti-dementia drugs. The world of memory enhancement is coloured by utopian thinking and by the desire for quicker, sharper, and more reliable memories. Dementia is characterized by decline, fragility, vulnerability, a loss of the most important cognitive functions and even a loss of self. While MEDs are being developed for self-improvement, in Alzheimer’s Disease (AD) the self is being lost. Despite (...) this it is precisely those patients with AD and other forms of dementia that provide the subjects for scientific research on memory improvement. Biomedical research in the field of MEDs and anti-dementia drugs appears to provide a strong impetus for rethinking what we mean by ‘memory’, ‘enhancement’, ‘therapy’, and ‘self’. We conclude (1) that the enhancement of memory is still in its infancy, (2) that current MEDs and anti-dementia drugs are at best partially and minimally effective under specific conditions, (3) that ‘memory᾿and ‘enhancement᾿are ambiguous terms, (4) that there is no clear-cut distinction between enhancement and therapy, and (5) that the research into MEDs and anti-dementia drugs encourages a reductionistic view of the human mind and of the self. (shrink)

There have been few empirical studies into what non-medical factors influence physicians and nurses when deciding about admission and discharge of ICU patients. Information about the attitudes of healthcare professionals about this process can be used to improve decision-making about resource allocation in intensive care. To provide insight into ethical problems that influence the ICU admission and discharge process, we aimed to identify and explore ethical dilemmas healthcare professionals are faced with.

Inventing Peace' revolves around the question of how we look at the world, but do not see it when there is so much war, injustice, suffering and violence. What are the ethical and moral consequences of looking, but not seeing, and, most of all, what has become of the notion of peace in all this? In the form of a written dialogue, Wim Wenders and Mary Zournazi consider this question as one of the fundamental issues of our times as well (...) as the need to reinvent a visual and moral language for peace. Inspired by various cinematic, philosophical, literary and artistic examples, Wenders and Zournazi reflect on the need for a change of perception in the everyday as well as in the creation of images. In its unique style and method, 'Inventing Peace' demonstrates an approach to peace through sacred, ethical and spiritual means, to provide an alternative to the inhumanity of war and violence. (shrink)