Henk ten Have

Common threads? Palliative care service developments in seven European countries

Since the late 1960s hospice and palliative care services have been developing in many European countries. Although attention has been given to patterns of development in specific national contexts, so far we lack a comparative understanding of how these services are organized and delivered. Such a comparison poses certain practical and methodological difficulties. It does, however, allow a wider view of the current provision of palliative care in Europe, together with a consideration of implications for the future. We report on an analysis of palliative care developments in seven European countries which gave attention to early origins, patterns of provision, and structural and policy integration. We conclude that, despite different processes of development, the emergent discipline of palliative care now finds its most congenial home within the structures of the formal health care system. Accordingly, inequities between the seven countries can be more clearly identified, posing continuing challenges to policy makers and planners who operate with a European perspective.

Genetics and culture: The geneticization thesis

The concept of ‘geneticization’ has been introduced in the scholarly literature to describe the various interlocking and imperceptible mechanisms of interaction between medicine, genetics, society and culture. It is argued that Western culture currently is deeply involved in a process of geneticization. This process implies a redefinition of individuals in terms of DNA codes, a new language to describe and interpret human life and behavior in a genomic vocabulary of codes, blueprints, traits, dispositions, genetic mapping, and a gentechnological approach to disease, health and the body. This article analyses the thesis of ‘geneticization’. Explaining the implications of the thesis, and discussing the critical refutations, it is argued that ‘geneticization’ primarily is a heuristic tool that can help to re-focus the moral debate on the implications of new genetic knowledge towards interpersonal relations, the power of medicine, the cultural context and social constraints, rather than emphasizing issues as personal autonomy and individual rights.

Medical technology assessment and ethics. Ambivalent relations.

Not long ago, the New York Times reported that the National Association of the Deaf in the U.S. protested against cochlear implants in children.[1] This is a new technology, translating sounds into signals through a minicomputer that transmits electric impulses to an electrode in the acoustic nerve within the cochlea. The promise is that with the aid of implants deaf children can learn to communicate by interpreting the auditory signals transmitted. What could be more valuable than restoring hearing capacities in erstwhile deaf children? The major objection of the National Association of the Deaf is that this new technology threatens the slowly obtained recognition and continued existence of the specific culture of the deaf, namely, the sign language and communication systems developed within the world of the deaf. The availability of implants will be a setback in the gradual process of destigmatization and appreciation of the idiosyncratic value system of deaf people. What the Association fears is that the new technology will lead to pressure, however subtle and implicit it may be, upon the deaf to accommodate to the world of hearing people. After a long struggle it has gradually been accepted that the deaf are physically inconvenienced but not handicapped or disabled; now, the use of implants may reintroduce the idea that deafness is a defect that is reparable with technology Learning to communicate with implants is more difficult than learning sign language, and the result is always imperfect. Therefore, instead of creating their own world and being accepted as normal in a shared culture, the deaf now will be pressured into adapting to the world of the hearing--an adaptation that will necessarily be partial and incomplete, and that will continuously reinforce the marginality of those who cannot meet the standards of the hearing world without technical aids. Although several assessment studies of implant technology are under way, this kind of critical perspective is not brought to bear; it does not fit well into the usual format of technology assessment programs. Usually it is argued that the host of social, legal, and ethical questions raised by the application of new technology, particularly in health care, can be systematically examined with a metatechnology, consistent use of which will clarify such nontechnical issues and make them amenable to policy and management. For example, the Dutch governments Committee on Choices in Health Care argued that not everything in medicine that is technically possible ought necessarily to be introduced into the health care system.[2] New technologies should be evaluated before they are applied. That implies systematic research (identifying, selecting, testing, and evaluating specific technologies), which includes consideration of the ethical, legal, and social implications of a new technology as well as rational decisionmaking based on the results. The call for evaluation has indeed led to a growing number of technology assessment (TA) studies and programs.[3] Yet despite concern for the ethical implications of technological development, it is rare to see TA programs in which systematic analysis of such implications is an integral and substantial component. Though intended to be attentive to a variety of dimensions of new technologies (namely, medical, economical, social, psychological, ethical, legal), in practice research focuses almost exclusively on its biomedical implications. Here we have a curious paradox. Wishing to control the processes by which medical technology is developed, introduced, and used, and being concerned about the moral implications of new technologies, governments, agencies, and individual scholars have developed programs of technology assessment; however, such programs mainly focus on effectiveness and safety, and hardly address in a systematic way the moral concerns that were part of their genesis. The aim of this article is to elucidate this paradox. …

Ethical perspectives on health technology assessment.

This study analyses why ethical aspects play a minor role in health technology assessment (HTA) studies, even when comprehensive approaches of technology assessment are advocated. Technology is often regarded as a value-neutral tool. At the same time, bioethics is dominated by an engineering model. Ethical contributions to evaluation of medical technology should go beyond issues of application in clinical practice and focus also on the definition of problems, the demarcation of technical and nontechnical issues, and the morally problematic implications of technologies.

Euthanasia in Palliative Care Journals

With the growth of palliative care services, interest in moral issues also seems to be growing. The controversial issue of euthanasia significantly provokes moral reflection on the care for dying patients. This article presents an analysis of the moral issue of euthanasia as it is discussed by the palliative care community in the professional journals of palliative care. Initially, the analysis will focus on describing the characteristics of the publications about euthanasia and the attitudes expressed in the articles towards this practice. Second, attention will be paid to the description of the uses of the term euthanasia in the various articles and also how frequently such uses occur. Third, the various arguments in support for or against a place for euthanasia in palliative care will be discussed.

Medical ethics research between theory and practice

The main object of criticism of present-day medical ethics is the standard view of the relationship between theory and practice. Medical ethics is more than the application of moral theories and principles, and health care is more than the domain of application of moral theories. Moral theories and principles are necessarily abstract, and therefore fail to take account of the sometimes idiosyncratic reality of clinical work and the actual experiences of practitioners. Suggestions to remedy the illnesses of contemporary medical ethics focus on re-establishing the connection between the internal and external morality of medicine. This article discusses the question how to develop a theoretical perspective on medical ethical issues that connects philosophical reflection with the everyday realities of medical practice. Four steps in a comprehensive approach of medical ethics research are distinguished: (1) examine health care contexts in order to obtain a better understanding of the internal morality of these practices; this requires empirical research; (2) analyze and interpret the external morality governing health care practices; sociological study of prevalent values, norms, and attitudes concerning medical-ethical issues is required; (3) creation of new theoretical perspectives on health care practices; Jensens theory of healthcare practices will be useful here; (4) develop a new conception of bioethics that illuminates and clarifies the complex interaction between the internal and external morality of health care practices. Hermeneutical ethics can be helpful for integrating the experiences disclosed in the empirical ethical studies, as well as utilizing the insights gained from describing the value-contexts of health care practices. For a critical and normative perspective, hermeneutical ethics has to examine and explain the moral experiences uncovered, in order to understand what they tell us.

The concept of palliative care in the Netherlands

Palliative care in the Netherlands is growing and the climate for further development is favourable. Although there is a great deal of consensus on the current debates within palliative care, important disagreements persist. These disagreements relate to the history of palliative care within the country, the scope of palliative care, its values, the appropriate institutional context, and the moral acceptability of euthanasia in palliative care. In this paper, the consensus and the disagreements are described and discussed. It is concluded that many disagreements emerge from so-called external goals of palliative care. It is recommended that the debate should refocus on the internal goal of palliative care, which is the quality of life of the patient and his or her loved ones.

The ethics of genetic screening

Contributors. Preface. The Wilson and Jungner Principles of Screening and Genetic Testing D. Shickle. Genetic screening, information and counselling in Austria G. Hauser.The Belgian perspective on genetic screening K. Dierickx. Thalassemia prevention in Cyprus. Past, present and future P. Ioannou. Some developments in genetic screening in Finland V. Launis. Genetic screening: Ethical debates and regulatory systems in France A. Boue. Screening in Germany: Carrier screening, pre-natal care and other screening projects T. Schroeder-Kurth. Population screening in Greece for prevention of genetic diseases C. Metaxotou, A. Mavrou. Ethics and genetic screening in the Republic of Ireland D. Dooley. Genetic screening in the Netherlands. The state of the debate R. Hoedemaekers. Genetic screening and genetic services in Slovakia V. Ferak. Historical and social background. Introduction H. ten Have. From eugenics to genetic screening. Historical problems of human genetic applications H.-P. Kroner. Genetics in Germany. History and hysteria U. Wiesing. A sociological perspective on genetic screening M. Levitt. Moral and philosophical issues. Introduction R.F. Chadwick, U. Wiesing. Genetic information and care I. Porn. Genetic screening, genetic testing and privacy J. Sandor. Reconciling liberty and the common good? Genetic screening in the Republic of Ireland D. Dooley. Genetic screening and testing. A moral map R. Hoedemaekers. The genetic testing of children A. Clarke. Index.

Handbook of Global Bioethics

Handbook of Global Bioethics Volumes 1and 2 Section 1: Introduction.- Global Bioethics.- History of Global Bioethics.- Structure of the Compendium.- Section 2: Principles of Global Bioethics.- Human dignity and human rights.- Benefit and harm.- Autonomy and individual responsibility.- Persons without the capacity to consent.- Respect for human vulnerability and personal integrity.- Privacy and Confidentiality.- Non-discrimination and stigmatization.- Respect for cultural diversity and pluralism.- Solidarity and cooperation.- Social responsibility and health.- Sharing of Benefits.- Protection of the environment, the biosphere and biodiversity.- Section 3: Cultural Perspectives.- African perspectives.- Arab perspectives.- European perspectives.- Latin American perspectives.- North American perspectives.- Section 4: Religious Perspectives.- Buddhism.- Catholicism.- Confucianism.- Judaism.- Orthodox Christianity.- Protestantism.- Taoism.- Section 5: Specific Issues from a Global Perspective.- Bioethics education.- Bioethics and human rights.- Biobanking.- Biometrics.- Clinical research in resource-poor settings.- Codes of conduct.- Commodification of human tissue.- Corruption.- Disasters.- Dual use.- Enhancement.- Fair trade.- Genetic modification.- Human cloning.- Immigrants and displaced persons.- Informed consent.- Migration of health personnel and brain drain.- Organ trafficking and transplant tourism.- Poverty.- Scientific misconduct and research integrity.- Synthetic biology.- Section 6: Future Perspectives.- Future Perspectives.- Volumes 3 and 4 Section 7: Countries and Regions.- Argentina.- Australia.- Brazil.- Bulgaria.- Burkina Faso.- Cameroon.- Canada.- China.- Colombia.- Congo, Democratic Republic of the.-Croatia.- Denmark.- Dominican Republic.- Egypt.- Ethiopia.- Iceland.- India.- Indonesia.- Iran, Islamic Republic of.-Kazakhstan.- Lithuania.- Malawi.- Malta.- Netherlands.- New Zealand.- Norway.- Oceania.- Philippines.- Portugal.- Singapore.- Slovakia.- South Africa.- Spain.- Sri Lanka.- Switzerland.- Syrian Arab Republic.- Turkey.- Ukraine.- USA.- Index.

The hyperreality of clinical ethics: A unitary theory and hermeneutics

Medical ethics nowadays is dominated by a conception of ethics as the application of moral theories and principles. This conception is criticized for its depreciation of the internal morality of medical practice and its narrow view of external morality. This view reflects both a lack of interest in the empirical realities of medicine and a neglect of the socio-cultural value-contexts of medical ethical issues, including the creative development of a broader philosophical framework for a practicable medical ethics. Several alternative approaches and conceptions have been proposed. The unified clinical ethics theory, developed by Graber and Thomasma, is an interesting attempt to synthesize these alternative approaches. It correctly identifies as the crucial problem the present disconnectedness of medical ethics from theoretical philosophy as well as the practice of medicine. In this paper, however, it is argued that the unitary theory should take more serious attention to the hermeneutic character of medicine as well as ethics. This implies that the unitary theory must in fact transform itself into aninterpretive clinical ethics theory. The theoretical characteristics and practical consequences of an interpretive theory of medical ethics are discussed in the present paper.