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  1. Advance directives in dementia research: The opinions and arguments of clinical researchers − an empirical study.Karin Jongsma & Suzanne van de Vathorst - 2015 - Research Ethics 11 (1):4-14.
    In order to discover an effective treatment for dementia it is necessary to include dementia patients in clinical research trials. Dementia patients face an increased risk to lose the capacity to consent to research participation, and research possibilities with incompetent participants are legally strictly limited. One solution is for patients to consent to research through an advance research directive whilst still competent. In order to explore whether such a directive would be useful and valuable in practice we conducted a qualitative (...)
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  • Interpreting Advance Directives: Ethical Considerations of the Interplay Between Personal and Cultural Identity. [REVIEW]Silke Schicktanz - 2009 - Health Care Analysis 17 (2):158-171.
    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 (...)
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  • Verbindlichkeit der Patientenverfügung im Urteil ihrer Verfasser.Ralf J. Jox, Mirjam Krebs, Jürgen Bickhardt, Karlo Heßdörfer, Susanne Roller & Gian Domenico Borasio - 2009 - Ethik in der Medizin 21 (1):21-31.
    Die Verbindlichkeit von Patientenverfügungen (PV) wird kontrovers diskutiert. Dabei ist nicht bekannt, wie verbindlich PV von denen gewollt sind, die sie verfassen. Mit Hilfe eines anonymen Fragebogens wurden Verfasser von PV in bayerischen Palliativeinrichtungen und Beratungsstellen hierzu befragt. Von den 402 Befragten gaben 69,1% an, dass ihre PV auch für Bevollmächtigte und Betreuer strikt verbindlich sein soll. Demgegenüber räumten 23,9% ihrem Stellvertreter ein, von der PV abzuweichen. Die lebensbedrohlich Erkrankten unter den Befragten legten nicht weniger, sondern signifikant mehr Wert auf (...)
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  • What is happening during case deliberations in clinical ethics committees? A pilot study.R. Pedersen, V. Akre & R. Forde - 2009 - Journal of Medical Ethics 35 (3):147-152.
    Background: Clinical ethics consultation services have been established in many countries during recent decades. An important task is to discuss concrete clinical cases. However, empirical research observing what is happening during such deliberations is scarce. Objectives: To explore clinical ethics committees’ deliberations and to identify areas for improvement. Design: A pilot study including observations of committees deliberating a paper case, semistructured group interviews, and qualitative analysis of the data. Participants: Nine hospital ethics committees in Norway. Results and interpretations: Key elements (...)
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