Einleitung und Abbruch der künstlichen Ernährung beim einwilligungsunfähigen Patienten

Definition of the problem: In Austria the legal discussion on initiating and withdrawing artificial nutrition in incompetent patients has just begun. Arguments and conclusion: Legal regulations are lacking, but there appears to be agreement on accepting advance directives under specific criteria. This would mean that a presumed will and documented refusal of treatment and nutrition has to be respected by physicians. However, there is no consensus with regard to the “supposed will” of an incompetent patient to refuse treatment and nutrition. At present, surrogate decision making with regard to refusing life-sustaining treatment or nutrition is only accepted according to a declared and documented directive of the patient himself. When the patient’s will has to be “surmised” the protection of life has priority. In Austria this concept is based on the national constitution and its duty to protect life.     

Rechtliche und ethische Aspekte grenzüberschreitender Gesundheitsversorgung innerhalb der Europäischen Union

Definition of the problem Patient mobility and cross-border healthcare are phenomena of daily healthcare practice within the EU. With the Directive “on the application of patients’ rights in cross-border healthcare”, the EU in 2011 issued a comprehensive regulatory framework. No inventory or systematic assessment of ethical issues in this context exists. Argumentative strategy The current legal situation of cross-border healthcare within the EU and its historic development are presented. Based on a patient typology focusing on different patient motivations for crossing the border to receive healthcare, ethical issues of cross-border healthcare within the EU are discussed. ConclusionThe possibility of crossing borders for receiving planned healthcare in the EU—which is under certain conditions also reimbursed by health insurance and national health service schemes—potentially increases the autonomy of some patients. However, especially when considered from a justice perspective that asks for real equal opportunities for everyone, many ethical issues are conceivable that are not sufficiently studied or considered in the policy making process.     

Ethische Entscheidungsfindung in der klinischen Praxis

Definition of the problem:Reaching a decision for incompetent patients raises some questions in rating different facts about the patient’s values including an advance directive. Healthcare Ethics Committees are one possible solution for the problem of a patient-centered surrogate decision making. Arguments and conclusion: The organization of a Healthcare Ethics Committee has to be adjusted to the organizational needs. The decision making process can be optimized by discourse in the Healthcare Ethics Committee to set some organizational rules.     

Ethik in der Klinik – Theorie für die Praxis: Ziele, Aufgaben und Möglichkeiten des Ethik-Konsils

Definition of the problem: Ethics consultation is one of the most important ways in which clinical ethicists can support both health-care providers and patients and their relatives in coping with ethical and existential challenges. The practice of ethics consultation, as performed at the Freiburg University Hospital is described and illustrated by a case report about the problem of treatment termination. The range of subject matters that come up in ethics consultations is analyzed. A research program in clinical ethics is summarized that has been undertaken to pave the way for a specific and interdisciplinary analysis of needs; from there on, the investigation aims at further developing clinical ethics support services. Suggestions for criteria of competence for ethics consultants are formulated on the basis of both the author’s and international work. Finally, the issues of structural conditions for establishing clinical ethics in the German-speaking world are raised and the long-term prospect of ethics consultation as an instrument for learning and teaching ethics in the health-care system is highlighted. Zusammenfassung.   Ethische Reflexion und Diskussion sind in der heutigen Medizin unumg?nglich geworden und fordern eine kompetente Bearbeitung. Die Etablierung von Formen einer praxisorientierten Ethik in der Medizin hat jedoch in Deutschland bisher nicht mit dem vielfach ge?u?erten Bedarf Schritt halten k?nnen. Auch bleibt der aktuelle Stand hier hinter dem in den USA oder in vergleichbaren europ?ischen L?ndern wie Gro?britannien zurück. Das Ethik-Konsil ist eine der zentralen M?glichkeiten, durch die die Klinische Ethik heute zur Unterstützung der Behandelnden, Betreuenden und ebenso der Patienten und ihrer Angeh?rigen bei ethischen und existentiellen Herausforderungen beitragen kann. Es wird die Arbeitsweise der Ethik-Beratung am Freiburger Universit?tsklinikum dargestellt und an einem Fallbeispiel zur Problematik der Therapiebegrenzung erl?utert. Das Spektrum der Themen und Anl?sse von Ethik-Konsilen wird analysiert. Ein laufendes Forschungsprogramm zur Klinischen Ethik wird referiert, in dem mit einer interdisziplin?ren Methodik Grundlagen für eine spezifische Bedarfsanalyse erarbeitet werden, die künftig eine fundierte Weiterentwicklung klinisch-ethischer Dienstleistungen erm?glichen sollen. Auf der Basis eigener und internationaler Vorarbeiten werden Vorschl?ge für ein Kompetenzprofil für die Ethik-Beratung formuliert. Abschlie?end werden günstige bzw. ungünstige Rahmenbedingungen für die künftige Etablierung der Klinischen Ethik im deutschsprachigen Raum diskutiert. Es folgt ein Ausblick auf die langfristige Zielperspektive des Ethik-Konsiles als Medium der ethischen Fortbildung in der Praxis des Gesundheitswesens.

     

Irreführende Leitbilder Zum Mythos der Individualisierung durch pharmakogenetische Behandlungskonzepte. Eine kritische Anmerkung

Zusammenfassung Die prospektive Analyse der ethischen Implikationen medizinisch-technischer Innovationen läuft immer auch Gefahr, sich in den Wunschbildern von Marketingexperten zu verfangen. Vor diesem Hintergrund könnte es durchaus nützlich sein, die Erkenntnisse der Wissenschafts- und Technikforschung zur Genese und Entwicklung neuer Techniken auszuschöpfen. Dies erscheint gerade auch für die ins Phantastische weisende Zukunft der Individualisierung medikamentöser Therapie, wie man ihr häufig in der Beschreibung pharmakogenetischer Behandlungskonzepte begegnet, angebracht. Techniken, die sich noch im Entwicklungsstadium befinden und deren breite Anwendung noch einige Jahre auf sich warten lassen wird, sollten sehr sorgfältig auf ihren Realitätsgehalt und das zu erwartende Leistungspotenzial hin analysiert werden. Dazu gehört v. a. auch eine kritische Auseinandersetzung mit den Leitbildern, Visionen und Nutzenversprechen, mit denen technische Innovationen oft sehr absichtsvoll ausgestattet werden. Wird dabei die Distanz zur Rhetorik der Protagonisten der neuen Techniken nicht gewahrt, gerät die ethische Reflexion unvermittelt in die Rolle, profane Marketingstrategien wortgewandt und ideenreich zu veredeln.     

Ist ein Therapieverzicht gegen den Willen des Patienten ethisch begründbar?

Definition of the problem Decisions to limit life-prolonging treatment (DLT) precede the majority of non-sudden deaths in European countries. While existing studies focus on patient refusal of treatment, no data exists about patient consent to DLT, especially in situations where patients are not prepared to accept limitations of treatment. In a study on patient involvement in DLT we could show that one third of terminally-ill patients wish to extend their lifetime. In these patients treatment limitations are often decided without involving the patient. These data raise the question, whether doctors are allowed to limit treatment in patients who prefer “everything to be done”. Or should they rather follow the patient’s wish for intensive therapy even if they deem it futile. Arguments Neither the concept of futility nor that of patient autonomy or shared decision making are apt to guide decision making in situations where patients ask for treatment that physicians consider as futile. Using a principled approach we arrive at four criteria that should be factored in the decision and communication about limiting life-prolonging treatment: effectiveness of the intervention, the patient’s capability for autonomous decision-making based on his level of information and coping with the disease, burden of the intervention as perceived by the patient and an explicit mention of extensive treatment costs. Conclusion These criteria help to decide whether it is justifiable for the physician to limit care without consent of the patient. They also help to identify cases where continuing life-prolonging treatment on the request of the patient is justifiable even if their physicians find it inappropriate.     

Helfen um jeden Preis? – Historisch fundierte Gründe für das Konzept des „kontrollierten individuellen Heilversuchs“ für risikoreiche „individuelle Heilversuche“ zur Behandlung einwilligungsunfähiger psychisch kranker Menschen

Definition of the problem

Therapeutic helplessness reasons “individual treatment attempts” aiming to improve the patient’s health. Thus, its ethical justification relies on the intended potential benefits. However, reduced (or even lacking) capacity of autonomous decision making and impeded applicability of concepts ofsubstituted judgment support risks of heteronomy and instrumentalization of mentally ill persons.

Arguments

The analysis of the historic example of the patient Borel treated by the psychiatrist G. Burckhardt in 1888 with his newly invented neurosurgical “topektomy” illustrates the realization of risks of instrumentalization of the mentally ill and, therefore, serves as a casuistic for the discussion of actual risks of “individual treatment attempts” focusing on the mentally ill in this article.

Conclusion

Adoption of the concept of “controlled individual treatment attempts” may help to protect the mentally ill from instrumentalization.     

„Personalisierte Medizin“ in der Onkologie: Ärztliche Einschätzungen der aktuellen Entwicklung in der Krankenversorgung

Definition of the ProblemPublic discussions about “personalised medicine” indicate that this approach is associated with high expectations regarding its contribution to clinical practice. However, little is known about physicians’ perspectives on “personalised medicine”. This qualitative interview study aims to provide insight into physicians’ perceptions and views regarding clinical practice. Arguments/ResultsPhysicians in this sample view “personalised medicine” as a progress within medicine, but do not see a major departure from long-standing practices. As a major problem, physicians identified handling the amount of molecular and genetic information and integrating this information into the diagnosis and treatment. ConclusionTaking the results into account, one may ask whether “personalised medicine” is not the opposite of what its name connotes—a more patient-centred medicine. The strategies for handling the large amount of information raise novel challenges which are in contrast to the ideas of patient-centred medicine.     

Das ‚gute Leben‘ in der Bioethik

Definition of the problem Contemporary bioethics as an academic discipline mainly focuses on moral questions—according to its articulated self-concept and the explicit arguments in most areas of bioethical reflection. Concepts and theories of the good life are hardly considered.Arguments In reality the “good life” plays a much more important role than it is assumed, but mostly only in an implicit way. The article demonstrates this by referencing three selected fields of bioethical discussion. Hence the article argues that bioethics should turn the “good life” into an issue of intense, explicit and systematic consideration. Furthermore, the article provides an initial answer to the questions as to why the “good life” has been marginalized within bioethics up to this point and which function it can assume in future bioethical reflection.Conclusion The “good life” is the blind spot of bioethics. A more intensive and systematic consideration of the “good life” is a challenge for contemporary and future bioethics.     

Zum Umgang mit ?kulturellen Fragen“ in der klinischen Ethik am Beispiel der Hymenrekonstruktion

Definition of the problem This paper illustrates a critical discussion of culture-related issues in clinical ethics with the example of hymen reconstruction. Arguments (1) To specifically discuss “culture-sensitive” issues in clinical ethics might perpetuate an essentialist understanding of culture. Instead this paper argues for a dynamic understanding of culture and generally context-sensitive, pluralist clinical ethics; (2) clinical ethics mainly focuses on the individual patient-physician relationship and public health ethics and global health ethics concentrate more on structural dimensions of health and health care. However, the interconnections should be acknowledged more systematically; (3) “migration” is often subsumed under “culture” as a bioethical issue. But the topics are not coextensive, instead both areas involve specific bioethical questions. More bioethical research is needed especially in the area of migration. On the basis of these three general aspects the paper discusses hymen reconstruction. It is argued that by performing the operation the physicians might perpetuate structural injustice and false anatomic beliefs, but that in some individual cases the operation can help prevent significant harm for the woman. Conclusion There has been an increasing awareness for “cultural” issues in health care and bioethics. It will be an ongoing challenge to perform “culture sensitive” health care without falling prey of essentialist othering and stereotyping. This paper argues for a general context sensitivity in a diverse, globalized world, where the connection of the individual health care to the structural circumstances are recognized. This understanding lays the ground for the argumentation of the specific case of hymen reconstruction.     

Die Sterbehilfedebatte und das Bild der Palliativmedizin in deutschen Printmedien

Background In Germany the discussion about euthanasia and physician assisted suicide is prevalent in the media. This study will analyse the way German newspapers represent the discussion about the end of life and how they report about palliative medicine. Methods A qualitative data analysis was performed of 433 articles published in the years 2006 and 2007 in different German newspapers. The archives of the selected newspapers were searched for “palliative medicine”, “hospice”, “patient’s autonomy”, “patient’s will”, “euthanasia” and “terminal care”. Results Dignity, autonomy, inadequate provision of care and uncertainties were identified as the major topics in the debate about euthanasia. Dignity was used both as an argument for and against legislation of euthanasia. The terminology on euthanasia is not used consistently in Germany. Palliative medicine is described as a possible alternative to euthanasia which should be developed and reimbursed better. Conclusion These findings underline the importance of dignity and autonomy for the public opinion on the end of life. The media show the potential of palliative medicine as an alternative to euthanasia but claim further development of palliative care. The inconsistencies in terminology as well as in the content of end of life decisions have to be clarified to allow an objective discussion. Politicians and the medical profession should know about the public statements and opinions, to react adequately to patient’s fears and allowances.     

Terminale Sedierung aus juristischer Sicht

Definition of the problem: Terminal sedation has recently been discussed as part of the standard of care in the end of life area. Within the palliative care context the term is commonly used as the “induction and maintainance of a sedated state with the intent of relieving otherwise intractable distress, both physical and mental in a patient close to death”. While some representatives of palliative care medicine stress that terminal sedation is only used as a “last resort”, e.g. when other standard methods of palliative care have failed, the opponents express fear of a new and uncontrolled “form of active euthanasia.” Especially when instituted together with a withdrawal of nutrition and hydration, terminal sedation is often deemed to be closer to active euthanasia and a prohibition is demanded. Arguments and conclusion: This article explores the legal meaning of terminal sedation. Along the way it will demonstrate that terminal sedation is — under certain conditions — neither equivalent to active euthanasia nor is it forbidden physician-assisted suicide. Examples for practice guidelines that meet the legal framework are suggested in the article.     

Der Beitrag qualitativer Sozialforschung zur handlungsorientierenden medizinethischen Forschung. Eine Methodenreflexion am Beispiel des ETHICO-Projekts

Definition of the problem Research in medical ethics is often conducted by means of socio-empirical methods. In this context qualitative methods have been widely used in recent years. To the best knowledge of the authors, however, there is a lack of research on the specific contribution of qualitative research for interdisciplinary medico-ethical analysis. Arguments By means of a practice-oriented medical ethics research project to support decision making in oncology (ETHICO project) we specify the contribution of different qualitative research methods. In our methodological reflection we demonstrate how two features of qualitative research methods—reconstruction of social reality and explication of informal knowledge—are important prerequisites for the contribution of qualitative research to the interdisciplinary medical ethics research project. Outlook We conclude our analysis with an exploration of limitations regarding the use of qualitative research in medical ethics and open research questions.     

Wie hilfreich sind „ethische Richtlinien“ am Einzelfall?

Zusammenfassung  Entscheidungen der Therapiebegrenzung und in der Betreuung am Lebensende sind häufig komplex und von ethischen Problemen begleitet. Im Mittelpunkt der Untersuchung steht die entscheidende Frage, wie hilfreich existierende Ethik-Richtlinien, die eine ethische Orientierung bei solchen Entscheidungen geben sollen, in der klinischen Praxis tatsächlich sind. Die Frage, welchen Nutzen Ethik-Richtlinien bei der Entscheidungsfindung haben oder haben können, wird hier exemplarisch an einem klinischen Fallbeispiel aus einer Ethik-Kooperationsstudie in der Intensivmedizin analysiert. Vergleichend werden hierzu Ethik-Richtlinien aus Deutschland, der Schweiz und aus Großbritannien herangezogen, die Gegenstand eines internationalen Projekts zur Analyse von Richtlinien waren. Die Möglichkeiten und Grenzen einer ethischen Orientierung an Ethik-Richtlinien bei Entscheidungsproblemen der Therapiebegrenzung und in der Betreuung am Lebensende werden anhand der Fallstudie diskutiert und illustriert. Abschließend werden Schlussfolgerungen für die Entwicklung ethischer Richtlinien für die klinische Praxis formuliert.

Intersex(e) und alternative Heilungsstrategien

Definition of the problem: Medical intervention in cases of intersexuality are premised upon dominant communitarian gender norms that view the intersexed child as a deviation in need of treatment. Under this view, “healing” is understood as the successful integration of the intersexed individual into a clearly demarcated gender as brought about through medical treatment. This presumes, on the one hand, that untreated intersexed individuals cannot successfully “heal”, and on the other, that treated individuals experience medical intervention as a means for “healing”. Arguments: Exploration of medical literature and first-person accounts of both treated and untreated cases of intersexuality bring into question these presumptions. Instead, the literature demonstrates the importance of the core values of self-acceptance of variability, overcoming isolation by coming together with others with similar conditions, and truth-telling as the fundamental means by which these individuals find “healing”. Conclusion: This would suggest that medical intervention in order to overcome social liminality in cases of intersexuality may not be the most effective means of “healing”. Rather, medical management must redirect its efforts to overcome the response to intersexuality, and not view the condition itself as pathological.     

Der DNA-Chip – Schlüsseltechnologie für ethisch problematische neue Formen genetischen Screenings?

Zusammenfassung.   Durch die Entwicklung der molekulargenetischen Diagnostik ist in den vergangenen Jahren nicht nur der individuelle Nachweis zahlreicher genetisch bedingter Krankheiten und Krankheitsdispositionen m?glich geworden, sondern darüber hinaus auch die Feststellung der verdeckten Anlagetr?gerschaft gesunder Probanden für rezessive Erbleiden. Die sich hieraus ergebende, unter ethischen Aspekten umstrittene M?glichkeit eines genetischen Populationsscreenings war bislang methodenbedingt auf wenige, meist seltene Leiden beschr?nkt. Die neue Technologie des „DNA-Chips“ er?ffnet durch die Synthese von Computertechnologie und Molekulargenetik die technische M?glichkeit des Massenscreenings auf eine gro?e Zahl, wie immer definierter, genetischer Defektanlagen für Erbleiden, aber auch genetisch mitbedingte Volkskrankheiten. Damit stellt der DNA-Chip das Handwerkszeug sowohl für eine verbesserte Pr?ventivmedizin als auch für neue Formen von genetischer Diskriminierung bis hin zur Eugenik dar. Es müssen daher dringend ethische Normen und rechtliche Rahmenbedingungen für den unmittelbar bevorstehenden Einsatz des DNA-Chips in der medizinischen Diagnostik erarbeitet werden.      

Prinzipien und Diskurs – Ein Ansatz theoretischer Rechtfertigung der ethischen Fallbesprechung und Ethikkonsultation

Definition of the Problem Models of decision making in medical ethics have to establish themselves as being able to lead to ethically right or at least “credible” decisions. For this purpose, approaches of theoretical justification stemming from ethics are vital. However, clinical ethics is sometimes criticized for theoretical deficits. In order to address this criticism, we will try to justify ethical case discussion and ethics consultation by principlism and discourse ethics by referring to a clinical ethics project (METAP). Arguments Principlism and discourse ethics can fruitfully complement each other when used in ethical case discussion or consultation. Thereby, some theoretical as well as practical weaknesses of both approaches can be mitigated. Discourse ethics, for example, safeguards the ethical validity of moral decisions and norms for action, respectively, thus mitigating shortcomings of justification when using principlism. Conversely, principlism answers questions concerning ethical adequacy and functions particularly as a safeguard for appropriate decisions in the individual case. Conclusion By using a combination of these two approaches, a broader justification seems possible rather than by relying on principlism or discourse ethics alone. Even if some challenges persist, and even if the combined model cannot always prevent dissent, it may strengthen practical confidence in the ethical decision by its ?double“ safeguards (principles and discourse). This could render clinical ethics more ?robust“ that have been missing so far.     

Ist der Mensch sein Gehirn? Anthropologische Bemerkungen zur Ethik der Hirnforschung aus der Sicht eines Theologen

Definition of the problem: Is it the brain that makes a human being a person? This anthropological question has been raised because of the findings of modern human brain research, and there are severe ethical consequences anew: If the appropriate anthropological answer is yes, then all invasive research would be problematic, because one would touch the basis of human essence. The problem is that the two major philosophical paradigms that offer an answer to the anthropological question, dualism and monism, have opposing concepts. Arguments: This paper argues that the error of these two paradigms is that they understand the human body and the human mind as ’res' - as things. The explanation of the human being as an interactive unit of body and mind is impossible in both paradigms. A third anthropological view that tries to make that understandable is the anthropology of the Hebrew Bible. It does assume the category ’thing' while speaking about humans, it presumes the category ’aspect'. There is no Hebrew word for ’mind' in contrast to ’body' or vice versa. The biblical language only knows terms for the unity of human beings seen under a certain aspect. Conclusion: Here, the body and thus the brain are important and necessary condition for human essence, but this is not a sufficient explanation for the human personality. Invasive research on the human brain is here neither generally forbidden nor tolerated - one has to demonstrate in every single case whether the planned operation touches regions that are crucial for the personality of the human subject. Zusammenfassung. Die alte anthropologische Frage nach dem Verhältnis von Leib und Seele, die im Kontext der Ergebnisse der modernen Hirnforschung neu als Gehirn-Seele-Problem gestellt wird, hat erhebliche ethische Konsequenzen für die Beurteilung der Hirnforschung. Ist nämlich die Geist-Seele als dasjenige, was der zu schützenden menschlichen Person zugrunde liegt, eigentlich nichts weiter als ihr Gehirn, so werden invasive Eingriffe an eben diesem Gehirn höchst problematisch. Das Dilemma dieser ethischen Frage ergibt sich aus der ungelösten anthropologischen Diskussion: Die beiden Hauptparadigmen - Monismus und Dualismus - geben diametral entgegengesetzte Antworten. Ein Lösungsvorschlag aus theologischer Sicht ist die Einbeziehung der biblisch-christlichen Anthropologie sowie aktuell das dieser nachfolgende philosophische Konzept der beseelten Leiblichkeit in den anthropologischen Diskurs. Letztere fassen den Menschen immer als eine leib-seelische Einheit und weisen das Gehirn als einen wesentlichen, aber nicht hinreichenden Grund menschlicher Personalität aus. In einer medizinischen Ethik auf der Basis dieser Anthropologie muss jeder Eingriff auf seine potentielle Bedrohung für die integrative Einheit ,Mensch’ geprüft werden - vor allem, aber nicht nur in der Hirnforschung.     

Wenn es persönlich wird in der „personalisierten Medizin“: Aufklärung und Kommunikation aus klinischer Forscher- und Patientenperspektive im empirisch-ethischen Vergleich

Definition of the problem In clinical research and practice, the new paradigm of “personalised medicine” raises questions about necessity, expectations, possibilities and risks. In an ongoing empirical–ethical study, we explore the perspectives of both researchers and patients regarding the implementation of “personalised medicine” in the treatment of locally advanced rectal cancer. This study focuses on ethically relevant aspects in practice, including expectations towards, counseling on, and decision for “personalized” treatment, or research. Methods We conducted interviews (with 19 researchers and physicians and 28 patients) and participant observations during physician–patient consultations (n = 50). Arguments Uncovering differences and similarities in the perspectives of affected patients and physicians will allow potential conflicts in clinical practice to be detected and addressed as early as possible. Conclusions We were able to demonstrate that patients and physicians have different perspectives on “personalised medicine”. This might lead to conflicts in clinical practice that should be addressed as early as possible.