Wim Dekkers

Autonomy and dependence: chronic physical illness and decision-making capacity.

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 Agichs distinction between ideal and actual autonomy, the concept of “Socratic autonomy” is introduced.

Practical wisdom in medicine and health care

How do professionals in medicine and health care know what to do? How should they make the right or a wise decision in morally complex and uncertain situations? And what is the role of the patient in this decision making process? The first five articles in this issue focus on these and similar questions, be it in very different ways. Ricca Edmondson returns to the classic Aristotelian notion of practical wisdom. References to this notion are rather an invitation to further reflection on morally right behaviour than a concrete guideline to follow. Aristotle describes prudence or practical wisdom (phronesis) as “knowing the right thing to do in a particular circumstance through understanding the circumstance rightly, knowing what matters, and effective means-end reasoning to bring about what matters.” Thinking in terms of wisdom refers to forms of reasoning and deliberation in which knowledge, reflection, attitude and life experience are combined with emotional, social, and ethical capacities. The author argues for a threefold ‘wisdom-based’ approach. Central to Ricca Edmonson’s approach is her focus on the capacities of the self (that is, the professional doing the reasoning), the capacities of the other (patient, colleagues), and the demands of the problem itself. Dan Egonsson also deals with the classic notion of wisdom. He offers an analysis of so-called hypothetical approval, either in the form of preferences or consent. He takes the problem areas prudence, euthanasia and coercive psychiatric care as examples to illustrate his argument. By ‘prudence’ he refers to the sphere of personal value or self-interest. An object has prudential value for someone when it makes someone’s life better, independently of whether it makes any difference for others and independently of its moral value. The problem, however, is that there are several understandings of the concept of approval. Dan Egonsson discusses three main alternatives, approval as an actual preference, as a rational preference and as consent. Regarding the problem of how to arrive at a wise decision in a morally complex situation, it is common standard in bioethics to use a framework with four phases. If patients are competent, they should be adequately informed and decide for themselves. If they are incompetent, an advance directive might be helpful. If there is no advance directive, caregivers may try to come to a substituted judgement or act according to the best interest principle. Sigurdur Kristinsson’s paper is about the first phase, that is, the informed consent standard, especially in the area of research ethics. He critically reviews the Belmont Report from 1979 and argues that if this report is to be based on a conception of autonomy that generates moral justification, it will either have to be interpreted in a Kantian way or coupled with something like Mill’s conception of individuality. He comes to the conclusion that the justification should be along the lines of Kantian autonomy and not Mill’s individual autonomy. Linus Brostroom and coauthors focus on the third phase, the substituted judgement standard. They argue that the current formulation of the substituted judgement standard is incomplete and offers those who must make a surrogate decision little or no guidance. In their view, the principle of substituted judgement cannot be seen as well defined as long as it remains unclear under what conditions the patient is supposed to make his or her decision. Their paper discusses this problem of underdetermined decision conditions. Kristin Zeiler, finally, also deals with decision making and focuses on the notion of shared decision making. She distinguishes between a shared decision making process and a shared autonomous decision making process. In her analysis she focuses on the area of new reproductive medicine (IVF, PGD) and clinical genetics. Possible gender differences in shared decision making are also discussed. The following two papers might be put under the umbrella of the notion of harm and the principle of non-maleficence. Michael John McNamee examines the concept of Schadenfreude. This German term is difficult to translate. Taken literally it means something like ‘harm joy’. It refers to the experience of feeling pleasure in another’s misfortune and being harmed. Based on Aristotle’s and Kant’s thoughts about rationality and emotions McNamee argues that feeling Schadenfreude, especially in the course of health care work, is evidence of an objectionable emotion and a deficient character. Linda Scheirton and co-authors deal with harmful practice errors in occupational and physical therapy. Using predominant bioethical theories, ethical principles and professional codes of ethics they analyse six harmful cases reported by occupational and physical therapists in focus group interviews. It is known from the literature that a significant number of ethical issues evoked by these errors continue to trouble the reporting therapists. The authors conclude that the only way towards a culture of safety is an attitude of openness, a principle willingness to reveal one’s errors, and moral courage. Several patient safety strategies are suggested that might have prevented the events described in these six cases. The next two papers are about death and dying, and a person’s rights after his or her death. Carlo Leget retrieves the medieval ars moriendi tradition. North Atlantic culture, he argues, lacks a commonly shared view on the good death that helps dying people, their family members and caregivers to cope with the dying process. He presents an updated version of the ars moriendi tradition that meets the demands of present day secularized and pluralistic society. In his model ‘inner space’ is a central phenomenon. Five themes that are central to this new art of dying are: autonomy and the self, pain control and medical intervention, attachments and relations, life balance and guilt, death and afterlife. Part of the medieval ars moriendi tradition is the idea of an encounter between the living and the dead symbolized in the so-called ‘dances of death’. Malin Masterton and co-authors explore a modern version of this encounter. They analyse our moral intuition that the dead can have some kind of moral claim on the living and that we have moral duties towards the dead. They argue that there are indeed posthumous interests and that one such interest, the interest in one’s good name, has moral significance. This view has practical consequences when it comes to the use of body material after death and the reputation of historic persons. The final paper in this issue addresses the role and function of complementary and alternative medicine (CAM). Marcel Mertz analyses possible and plausible ethical justifications for the general use of CAM. His paper provides a systematic analysis of principles, concepts and values that can be relevant to the debate about CAM without aiming at final answers to all questions posed. His findings show that beneficence and non-maleficence are central issues for an ethical justification of CAM as a practice, while freedom of thought and religion are central notions regarding CAM as a belief system. Wim Dekkers and Bert Gordijn, Editors-in-chief

The Human Body

It is a commonplace, but at the same time a statement that raises many philosophical questions, to say that man consists of a material part, that is the body, and an immaterial part, that is the soul, the mind, or whatever it may be called. In the long history of Western European philosophy the soul, the mind, and the consciousness have always received ample philosophical attention, while philosophical interest in the human body has been marginal. Concepts of the body have mainly come into play where the definition of the soul, the mind, or the mind-body relationship is at issue. The body as a problem could only become of real importance after the relationship of body and mind had become a philosophical problem of central concern (Verwey, 1990). From a historical perspective, it is in the twentieth century only that the body ‘as such’ has received philosophical attention. For two or three decades the body has called attention from other disciplines as well. Nowadays, a rather extensive literature about philosophical, social and cultural aspects of the human body exists.1

Conceptual analysis and empirical research in medical philosophy and medical ethics

One cannot think of medical practice and medical science without being aware of the phenomena of health and disease (or illness). Since time immemorial health and disease are essential concepts in the philosophy of medicine and health care. It is a long ongoing debate. The concepts of health and disease have been studied and analyzed for decades without reaching any consensus on their content. In the literature, it is argued that the concept of disease is complex, vague, slippery, indefinable, or even dead. In the first paper in this issue, Bjorn Hofmann argues that the arguments for the vagueness, complexity and indefinability of the concept of disease are not overly convincing and that the claim that the concept of disease can be abandoned altogether needs better arguments. His conclusion is that it appears at least as hard to show that disease is indefinable as it is to define it. Marianne Boenink also embarks on the philosophy of disease, especially on the relationship between the emergence of new technologies such as molecular medicine and concepts of disease. It is widely acknowledged that new technologies often not only produce new ‘ontologies’, but also new roles and new ethical responsibilities. The technological constitution of disease raises extensive philosophical debates, but ethical analyses of new biomedical technologies only rarely include conceptual clarification of disease concepts implied by these new technologies. The author argues that it is useful to start with an analysis of concepts of disease which are implied in new emerging technologies, when anticipating ethical issues of biomedical technologies. Thus, a conceptual analysis should precede the ethical debate. The third article in this issue also deals with a conceptual problem. The policy responses to suicide and schizophrenia in the UK—and in many other countries—are predicated on notions of global irrationality as a justification for paternalistic interventions. Jeanette Hewitt argues that it is theoretically possible that suicide may not be an irrational response to the suffering experienced by people with a severe and enduring mental illness and that suicide is not necessarily a consequence of their mental illness per se. What has been conceptualized as ‘‘psychopathological’’ by psychiatric perspectives may be a normal reaction of hopelessness to a realistic appraisal of the course and consequences of living with schizophrenia. However, this point of view does not preclude intervention of any kind to prevent suicide. Also the fourth article in this issue is analytic and argumentative in nature. Dan Egonsson comes up with a new interpretation of the Substituted Judgement Standard (SJS). SJS is commonly understood in a counterfactual and purely hypothetical way culminating in the question what decision the patient here and now would have made, had he or she been competent. Egonsson believes there is another reading in which the emphasis is more on the past, in so far that it bears on the present situation, than on the now. He proposes an alternative, factual, interpretation of the SJS in which the surrogate is required to infer what the patient in the past actually thought about a particular treatment that is being considered. A few decades ago, medical ethics moved from a predominantly theoretical discipline to a discipline that not only explicitly reflects on empirical findings, but also considers empirical research as an important part of its endeavour. The next two articles are in line with this empirical turn in bioethics. Yvonne Denier et al. report about the findings of an empirical, qualitative study based on in-depth interviews with 18 nurses from Flanders W. Dekkers (&) B. Gordijn UMC St Radboud Nijmegen, 114 IQ Healthcare, Section Ethics, PO Box 9101, 6500 HB Nijmegen, The Netherlands e-mail: v.hulsman@iq.umcn.nl

Moral agents in medical research and practice

The first three papers in this issue deal with the physician– patient-relationship. Helge Skirbekk focuses on the microethical issue of trust in the physician–patient-relationship. In most of the medical encounters trust is taken for granted as an implicit phenomenon. Patients often simply assume that they can trust their physician. But the physician– patient-relationship can be made a topic for negotiations if either party finds reason for it. Examples are non-compliance of the patient and doctors who drink too much. Negotiating trust is something one cannot always avoid in order to build an adequate physician–patient-relationship. Andreas Langer et al. focus on the physician–patient-relationship from a somewhat unusual perspective. They attempt to build a bridge between economic theory and medical ethics by applying elements of new institutional economics to ethically relevant dimensions of the physician–patient-relationship. Physicians cannot always give the best possible treatment for their patients because of financial restrictions. Andreas Langer et al. present a new version of the principal-agent-theory in order to analyse this dilemma of medical doctors. Their model of the so-called dual principal-agent relationship can be used to widen the perspective of medical ethics. Individual ethics of the physician–patient-relationship should be complemented with institutional, especially economic, considerations. In their paper, Kjetil Rommetveit and Rouven Porz tell the story of a patient facing the tough decision of whether to be tested for Huntington’s disease or not. They interpret this story from two different philosophical points of view: Aristotle’s perception of Greek tragedy and Karl Jaspers’ notion of boundary situations (Grenzsituationen). The authors argue that philosophical-anthropological positions like these two may be useful for elucidating ethical dilemmas in the clinical setting and for gaining a deeper understanding of these dilemmas. They can be seen as hermeneutic tools for situating clinical dilemmas in a broader cultural and philosophical perspective. The next three papers can be subsumed under the heading of research ethics in a pluralistic society. Lars Oystein Ursin tackles the problem of informed consent in biomedical research. Taking consent for biobank research as an example, he argues that in ethical considerations there is often a confusion of autonomy with liberty interpreted as freedom of choice. In his view we need to make a clear distinction between two ways of understanding the notion of personal autonomy, that is, a proceduralist conception linking autonomy with authenticity and a substantivist conception linking autonomy with control. Informed consent requirements in medical research may bring about a conflict between a participant’s interest in personal autonomy with his or her interest in liberty. Ilhan Ilkilic and Norbert Paul also focus on biomedical research, especially on genome diversity research. An important part of genome diversity research is taking blood and tissue samples from indigenous populations. The authors widen the scope from micro issues such as informed consent and autonomy of probands to a wider approach in which also cultural–philosophical, meta-ethical, and phenomenological aspects are taken into account. They show a few limits of current guidelines used in international genome diversity studies and end up with some conclusions to further develop these international guidelines. From this paper it is not a big step to the following one. Chris Durante’s paper does not deal with clinical medicine or biomedical research, but with bioethics in a pluralistic society. In his view, many theorists fail to take into consideration the W. Dekkers (&) B. Gordijn UMC St Radboud Nijmegen, P.O. Box 9101, Nijmegen, The Netherland e-mail: v.hulsman@iq.umcn.nl

Ethics and regulation

The historical growth of several applied ethics fields – suchas animal, environmental, business and research ethics – isto a certain extent scandal driven. Moral concern andpublic awareness of ethical problems have triggered thedevelopment of codes, rules and declarations and otherregulatory policies. However, these regulatory instrumentsdo not always effectively address the original concerns.The first paper of this issue is a case in point. David C.Malloy et al. conducted focus groups with physicians fromculturally dissimilar countries. They investigated thephysicians’ level of awareness and the perceived utility ofethical guidelines intended to direct their practice. Theoverall sense was that they were ineffective, despite thecross-cultural nature of the study. Ethical guidelines werevalued only if congruent with existing personal morality.Naturally, this finding questions the relevance of ethicalguidelines when it comes to guidance or education. Hence,the authors suggest further analysis of the purpose, content,and delivery of ethical guidelines in order to improve theireffectiveness in encouraging ethical behaviour.Klaus Lindgaard Hoeyer and Niels Lyno¨e take up thechallenge. When ethics is transformed into policy, the linkbetween problems and solutions is far from simple. Spe-cific policies cannot be explained completely by referenceto the original moral concerns. Other organizational factorssteer the development of concerns into policy. As a resultthe policies adopted may end up addressing other problemsor having other effects than those originally intended.Against this backdrop the authors propose an interestingnew approach to the analysis of history and function ofethics policies and their complex practical implications.In ‘‘Refining deliberation in bioethics’’ Miguel Kottowargues that the rapid growth and the multidisciplinaryorigin of bioethics have made the discipline vulnerable tocriticism. Its discourse has become alarmingly complexand lacks unity. As a result there is a divide betweenacademic bioethics and ordinary citizens and practitionerstrying to cope with ethical problems relying on commonsense and intuitions. Against this backdrop Kottow pro-poses new ways of ongoing, participative and structuredbioethical deliberation.Next, Michael Barilan focuses on Nozick’s famous‘‘refutation of hedonism’’ in his thought experiment of the‘Experience Machine’, a machine that would give one anyexperience one desired by directly stimulating one’s brain.Nozick examined the question of whether one should ‘‘pluginto’’ the experience machine for the rest of one’s life(Nozick 1974). Barilan argues that end-of-life-sufferingthat is resistant to state-of-the-art palliation provides aninteresting analogy to Nozick’s experiment validating hisfindings.Inthefollowingpaper,JosephL.Verheijde,Mohamed Y.Rady andJoan L.McGregoradvancearguments questioningthe validity of the well known and widely accepted HarvardMedical School brain-death criteria to define human death.They argue that there are scientific uncertainties of deter-mining states of impaired consciousness including braindeath that necessitate further debate, claiming that organprocurement from patients with impaired consciousnessmight be seen as a concealed practice of physician-assisteddeath.Joris Gielen, Stef Van den Branden and Bert Broeckaertcontinue the focus on end-of-life issues. They evaluate theoperationalisation of religion and world view in published

Human nature, medicine & health care

The concept of human nature is notoriously difficult. Over the last decade, however, its importance has grown in various topical debates. As a consequence, the 24th ESPMH annual conference (in Zagreb in 18–21 August, 2010) will explore historic and systematic approaches to the concept of human nature as well as the significance of this concept for medicine and health care. In anticipation of this event, the current issue of Medicine, Health Care and Philosophy presents a slight taste of some of these issues. This issue’s special section, ‘‘Medical Technologies and the LifeWorld’’, has been edited by Fredrik Svenaeus. It consists of six papers that were first presented and discussed at a symposium held at Sodertorn University in Sweden in November, 2007. They explore the way in which new medical technologies affect the self, the person, the human condition as well as our life world and self-understanding. In doing so they are firmly rooted in European philosophical traditions such as phenomenology and hermeneutics. The rest of this issue consists of four papers that are each similarly anticipating next year’s conference, albeit in slightly different ways. Elisabeth Hildt’s ‘‘Living longer: age retardation and autonomy’’ centres around developments in biogerontology. In the future this field might perhaps advance methods of intervening in the biological process of human ageing. This might seem to be a promising prospect. However, how would extending human life by technological interventions play out on an individual, familial and social level? Does the autonomy argument unambiguously support the recourse to age-retarding techniques? Age is again a central concern in Timothy Krahn’s paper, ‘‘Preimplantation genetic diagnosis: does age of onset matter (anymore)?’’ Preimplantation genetic diagnosis (PGD) is increasingly accepted in most jurisdictions to test susceptibility of ‘serious’ conditions. Amongst the factors determining seriousness are the future disease’s expected impact on health, the probability of genotype being expressed as a genetic disorder, therapeutic options, rate of progression, heritability, and age of onset. Krahn’s paper critically analyses the debate about these factors with a particular focus on the last condition. Next, Gerben Meynen explores the concept of free will in ‘‘Should or should not forensic psychiatrists think about free will?’’. In forensic psychiatry there is a debate about whether, and if yes, to what extent psychiatrists should consider issues surrounding free will. Meynen critically analyses this debate and develops his own stance. Finally, Bjorn Myskja discusses ‘‘Rationality and religion in the public debate on embryo stem cell research and prenatal diagnostics’’. Habermas argues that religious views play a perfectly legitimate role in public debates. Myskja analyses Habermas’ arguments and especially addresses questions such as whether experts in political debates on biomedical issues have a duty to state their religious worldview, and to what extent the American government decision to restrict research on embryonic stem cells is an illicit transgression of the divide between state and church.

From notions of health to causality

In 2005 the European Society for Philosophy of Medicine and Health Care (ESPMH) initiated an annual contest for young scholars. Every year an ESPMH prize is awarded to a scholar younger than 35 years of age for a scientific contribution on ethical, epistemological, or other philosophical topics relating to medicine and health care. The first paper in this issue, ‘On the relationship between individual and population health’, has been written by the winner of this prize in 2007, Onyebuchi A. Arah. Compared to the idea of individual health, ‘population health’ is a relatively new, rather fashionable term in the field of medicine and health care. The relationship between individual and population health is partially built on the dichotomization of medicine into clinical medicine and public health. Individual and population health are often seen as absolute and independent concepts. Onyebuchi A. Arah argues that the relationship between the two is largely relative and dynamic. His argument is based on an attempt to include a population perspective on health in definitions of health, particularly by emphasizing the role of the ‘context’ component of any notion of health. The second contribution in this issue, written by Shawn H. E. Harmon, also deals with public health, but this paper is more practical in nature. After having reminded us of the fact that public health is a multidisciplinary and complex phenomenon, the author argues that public health promotion is a moral duty and that, although multiple actors are relevant and necessary to fulfilling this duty, the role of international actors is paramount. The paper especially focuses on one of the most important international organizations in this field, that is, the World Health Organization (WHO). Shawn H. E. Harmon argues that better health can and must be better promoted through a more robust interpretation of the WHO’s role. Together with other international organizations, he argues, the WHO has not yet played its necessary part in promoting ‘health for all’. The third paper, written by Rui Nunes, Guilhermina Rego and Christina Brandao, leaves the difference between individual and public health for what it is. The authors evaluate the role of independent regulatory agencies in the field of health care, as compared to the role of traditional public regulations, with regard to a fair process of equal access to health care and of setting limits to health care. In their argument Norman Daniels’ and James Sabin’s theory of accountability for reasonableness plays a central role. The authors conclude that accountability for reasonableness should be regarded as a landmark of any health care reform. The rationale for limit-setting decisions must be clearly communicated toward the public. Karin Dahlberg, Les Todres and Kathleen Galvin focus on individual health care. They critically review the common standard of ‘patient-centred’ or ‘patient-led’ health care and argue that current patient-led approaches hinder a focus on a deeper understanding of what patient-led care could be. Based on various phenomenological and existential insights they present an alternative interpretation of patient-led care which they call ‘lifeworld-led care’. A philosophy of the person, a view of well-being, and a philosophy of care should be key elements in the further development of this ‘lifeworld-led care’. With the paper of Juha Raikka, ‘The ethical and political evaluation of biotechnology strategies’, we enter a new category of topics in this issue, that is, regulatory aspects of research and new biotechnologies. Juha Raikka focuses on W. Dekkers (&) B. Gordijn UMC St Radboud Nijmegen, 114 IQ Healthcare, Section Ethics, PO Box 9101, 6500 Nijmegen, HB, The Netherlands e-mail: w.dekkers@iq.umcn.nl

Short literature notices.

The rapid progress in neuroscience has posed new and stimulating challenges to current ethical decision-making, anthropological constructs and normative criteria. These challenges are now articulated and commented on in a sweeping, popularly written overview by Michael S. Gazzaniga, who seems to bring the best expertise for such an overview as a professor of cognitive neuroscience at Dartmouth College (USA) and member of the US President s Council on Bioethics. Beginning with ‘‘lifespan neuroethics’’, he considers how knowledge about brain development might help to define human life and thus shed new light on the controversy about conferring moral status on an embryo. He finally opts for the eighth week as the beginning of human life, although without giving any ethical argumentation for this, rather grounding it on a ‘‘gut reaction’’ (page 8) which is in self-admitted contradiction even to neuroscientific knowledge. This chapter is closed with a discussion on the ethical challenges that emerge as the brain ages. Gazzaniga proposes that society should provide mechanisms for personal choice regarding the option of euthanasia, yet once again does not support this thesis with any ethical arguments. In the chapters about enhancement, Gazzaniga opens up a distinction between physical enhancement (enhancement of the body) and mental enhancement (enhancement of the brain and mind), rejecting the former, but welcoming the latter in a naively optimistic way. A clear justification for why this distinction should hold either in descriptive or in normative terms – is missing. In chapters on free will, personal responsibility, and the law Gazzaniga argues that the issue of responsibility is a social choice to which neuroscience cannot contribute (pages 101–102). This thesis is based on the assumption that neuroscience would only study brains, which are ‘‘automatic, rule-governed, determined devices’’, but not people, who are ‘‘personally responsible agents, free to make their own decisions’’(page 90). Such an argumentation reveals (i) a problematic dualism between the brain and the person, and (ii) a striking dichotomy between determinism and free will. The large amount of current literature about naturalist perspectives on personhood and free will is completely ignored. The final chapters of the book claim that there was a universal nature of moral beliefs. The universality would result from ‘‘common subconscious mechanisms that are activated in all members of our species in response to moral challenges’’ (page 172). Based on the fact that such an intrinsic universal ethics was allegedly implemented in our brains, it would be guaranteed that the whole human endeavour will come to a good end: ‘‘In the end, we humans are good at adapting to what works, what is good and beneficial, and, in the end, jettisoning the unwise, the intemperate, the silly and self-aggrandizing behaviours’’ (page 53). To sum up, the issues raised in this book are indeed of major importance for science, ethics and society and they do deserve explicit interdisciplinary ethical investigations. But this challenging task can certainly not be achieved so simply. Gazzaniga neglects not only the ethical research on the issues he discusses, but even the most basic ethical distinctions such as between ‘‘is’’ and ‘‘should’’ or between descriptive and normative ethics.