The current article deals with the ethics and practice of physician-assisted suicide (PAS) and dying. The debate about PAS must take the important legal and ethical context of medical acts at the end of life into consideration, and cannot be examined independently from physicians’ duties with respect to care for the terminally ill and dying. The discussion in Germany about active euthanasia, limiting medical intervention at the end of life, patient autonomy, advanced directives, and PAS is not fundamentally different in (...) content and arguments from discussions led in other European countries and the United States. This must be emphasized, since it is occasionally claimed that in Germany a thorough discussion could not be held with the same openness as in other countries due to Germany’s recent history. Still, it is worthwhile to portray the debate, which has been held intensively both among experts and the German public, from the German perspective. In general, it can be stated that in Germany debates about questions of medical ethics and bioethics are taking place with relatively large participation of an interested public, as shown, for instance, by the intense recent discussions about the legalisation of advanced directives on June 18 2009, the generation and use of embryonic stem cells in research or the highly difficult challenges for the prioritizing and rationing of scarce resources within the German health care system. Hence, the current article provides some insights into central medical and legal documents and the controversial public debate on the regulation of end-of-life medical care. In conclusion, euthanasia and PAS as practices of direct medical killing or medically assisted killing of vulnerable persons as “due care” is to be strictly rejected. Instead, we propose a more holistically-oriented palliative concept of a compassionate and virtuous doctor-cared dying that is embedded in an ethics of care. (shrink)

Health care decision making for patients without decisional capacity is ethically and legally challenging. Advance directives (living wills) have proved to be of limited usefulness in clinical practice. Therefore, academic attention should focus more on substitute decision making by the next of kin. In this article, we comparatively analyse the legal approaches to substitute medical decision making in England and Germany. Based on the current ethico-legal discourse in both countries, three aspects of substitute decision making will be highlighted: (1) Should (...) there be a legally predefined order of relatives who serve as health care proxies? (2) What should be the respective roles and decisional powers of patient-appointed versus court-appointed substitute decision-makers? (3) Which criteria should be determined by law to guide substitute decision-makers? (shrink)

This paper presents the results of a qualitative interview study exploring English and French physicians’ moral perspectives and attitudes towards end-of-life decisions when patients lack capacity to make decisions for themselves. The paper aims to examine the importance physicians from different contexts accord to patient preferences and to explore the role of advance directives in each context. The interviews focus on problems that emerge when deciding to withdraw/-hold life-sustaining treatment from both conscious and unconscious patients; decision-making procedures and the participation (...) of proxies/relatives; previous experience with ADs and views on their usefulness; and perspectives on ways in which the decision-making processes in question might be improved. The analysis reveals differences in the way patient preferences are taken into consideration and shows how these differences influence the reasons physicians in each country invoke to justify their reluctance to adhering to ADs. Identifying cultural differences that complicate efforts to develop the practical implementation of ADs can help to inform national policies governing ADs and to better adapt them to practice. (shrink)

Die Diskussionen um Sterbehilfe und Patientenverfügung sowie der Ruf nach einer Stärkung der Palliativmedizin nehmen viel Platz in der deutschen Presselandschaft ein. Da Zeitungen einerseits Meinungen und Wissen der Bevölkerung abbilden, andererseits auch zu deren Meinungsbildung und Information beitragen, wurde eine Analyse der Darstellung der Sterbehilfedebatte und der Palliativmedizin durchgeführt. Als empirisches Material dienten 433 Artikel aus den Jahren 2006 und 2007, die mithilfe einer Suche nach den Schlagworten „Palliativmedizin“, „Hospiz“, „Sterbebegleitung“, „Patientenverfügung“, „Patientenautonomie“ und „Sterbehilfe“ in den Print-Archiven verschiedener deutscher (...) Zeitungen identifiziert wurden. Diese Artikel wurden einer qualitativen Inhaltsanalyse unterzogen. Mit Würde, Selbstbestimmung, Unterversorgung und Unsicherheit zeigten sich vier Hauptargumente innerhalb der Sterbehilfedebatte. Würde wird dabei als Argument sowohl für wie gegen aktive Sterbehilfe benutzt. Eine Unsicherheit zeigt sich in der Terminologie der Sterbehilfe. Das Bild der Palliativmedizin ist gekennzeichnet von der Hoffnung, dass sie eine Alternative zur Sterbehilfe bieten kann, sofern sie weiter ausgebaut und besser finanziert wird. Die Ergebnisse bestätigen die in verschiedenen Studien aufgezeigte Bedeutung der Begriffe Würde und Selbstbestimmung für die Einstellung der Bevölkerung zu Sterbehilfe, Suizidbeihilfe und Patientenverfügungen. Das Potential und die noch zu gering ausgebauten Strukturen der Palliativmedizin werden zunehmend erkannt. Demgegenüber erschwert das mangelnde Wissen um die Sterbehilfe-Terminologie und die rechtlichen Grundlagen der Therapiebegrenzung und Patientenverfügungen eine Diskussion um die Sterbehilfe auch auf fachlicher Ebene. (shrink)

ZusammenfassungDie Diskussionen um Sterbehilfe und Patientenverfügung sowie der Ruf nach einer Stärkung der Palliativmedizin nehmen viel Platz in der deutschen Presselandschaft ein. Da Zeitungen einerseits Meinungen und Wissen der Bevölkerung abbilden, andererseits auch zu deren Meinungsbildung und Information beitragen, wurde eine Analyse der Darstellung der Sterbehilfedebatte und der Palliativmedizin durchgeführt. Als empirisches Material dienten 433 Artikel aus den Jahren 2006 und 2007, die mithilfe einer Suche nach den Schlagworten „Palliativmedizin“, „Hospiz“, „Sterbebegleitung“, „Patientenverfügung“, „Patientenautonomie“ und „Sterbehilfe“ in den Print-Archiven verschiedener deutscher (...) Zeitungen identifiziert wurden. Diese Artikel wurden einer qualitativen Inhaltsanalyse unterzogen. Mit Würde, Selbstbestimmung, Unterversorgung und Unsicherheit zeigten sich vier Hauptargumente innerhalb der Sterbehilfedebatte. Würde wird dabei als Argument sowohl für wie gegen aktive Sterbehilfe benutzt. Eine Unsicherheit zeigt sich in der Terminologie der Sterbehilfe. Das Bild der Palliativmedizin ist gekennzeichnet von der Hoffnung, dass sie eine Alternative zur Sterbehilfe bieten kann, sofern sie weiter ausgebaut und besser finanziert wird. Die Ergebnisse bestätigen die in verschiedenen Studien aufgezeigte Bedeutung der Begriffe Würde und Selbstbestimmung für die Einstellung der Bevölkerung zu Sterbehilfe, Suizidbeihilfe und Patientenverfügungen. Das Potential und die noch zu gering ausgebauten Strukturen der Palliativmedizin werden zunehmend erkannt. Demgegenüber erschwert das mangelnde Wissen um die Sterbehilfe-Terminologie und die rechtlichen Grundlagen der Therapiebegrenzung und Patientenverfügungen eine Diskussion um die Sterbehilfe auch auf fachlicher Ebene. (shrink)

Advance directives are propagated as instruments to maintain patients’ autonomy in case they can no longer decide for themselves. It has been never been examined whether patients’ and healthy persons themselves are inclined to adhere to these documents. Patients’ and healthy persons’ views on whether instructions laid down in advance directives should be followed because that is (or is not) “the right thing to do”, not because one is legally obliged to do so, were studied and compared with that of (...) medical staff. Method: Vignette study presenting five cases. Cancer patients, healthy persons, nursing staff and physicians (n = 100 in each group) were interviewed. An adherence score was calculated (maximum value 5). The adherence score is found to be low in all groups, yet lowest in patients (1.55; standard deviation 1.13) and healthy controls (1.60; 1.37). The scores are significantly different between nursing staff on the one hand and patients and healthy controls on the other (p < 0.005 and p < 0.05, respectively), and between doctors and patients (p < 0.05). Interviewees who want these documents to be followed tend to live alone and to have already written an advance directive. Conclusions: Cancer patients and healthy persons widely disregard instructions laid down in advance directives and consider them less binding than physicians and nursing staff do. Only a minority tends to adhere more to advance directives. To improve decision-making at the end of life when patients are no longer able to decide for themselves alternative concepts, such as advanced care planning, should be considered. (shrink)

In many industrialized countries ethicists and lawyers favour advance directives as a tool to guarantee patient autonomy in end-of-life-decisions. However, most citizens seem reluctant to adopt the practice; the number of patients who have an advance directive is low across most countries. The article discusses the key argument for seeing such documents as an instrument of self-interpretation and life-planning, which ultimately have to be interpreted by third parties as well. Interpretation by third parties and the process of self-reflection are conceptually (...) linked by a qualitative concept of identity. Identity is conceived here as constructed in a processual dialogue between a personal and a cultural perspective. How the cultural dimension comes into play in understanding the motivation, rejection or content of wished for end-of-life-decisions, is shown by a brief review of empirical and cultural studies. Understanding advance directives as a culturally embedded tool of self-interpretation should help to overcome urgent moral problems in clinical settings: how to interpret such documents, how to deliberate on the content and on the best form. (shrink)

Due to the rapid changes in the medical world and the aging population, the need for advanced care planning grows. Despite efforts to make this topic discussed, only a minority of patients discusses the advance directive with their general practitioner. This study aimed to map thresholds: What barriers are identified by GPs and patients in preparing and discussing an advance directive? A cross section survey in patients and GP’s was performed. Citizens were recruited by multimedia and by street interviews. GP’s (...) were recruited by mailing. Most of the 502 citizens already heard of an advance directive but only 17 had declared one while 21 never want one. Eighty percent wants to take the initiative themselves but half of the participants wants the GP to be actively involved. Thirty percent finds the document too difficult to understand. The need to draw an advance directive grew with increasing age. Of the 117 GP’s involved, 65% drafted five or less advance directives the past year. A lack of time, experience and a poor access to the correct administrative requirements were only a few of the barriers. Preparing and drafting an advance directive is a time-consuming and difficult procedure. Patients and GP’s have the right to be informed and instructed on how to prepare an advance directive. (shrink)