National legislation, as well as arguments of experts, in Germany and Israel represent opposite regulatory approaches and positions in bioethical debates concerning end-of-life care. This study analyzes how these positions are mirrored in the attitudes of laypeople and influenced by the religious views and personal experiences of those affected. We qualitatively analyzed eight focus groups in Germany and Israel in which laypeople were asked to discuss similar scenarios involving the withholding or withdrawing of treatment, physician-assisted suicide, and euthanasia. In both (...) countries, respect for patient autonomy and patients’ wishes to die with dignity found broad consent. Laypeople argued in favor of accepting such wishes when they were put down in an advance directive. Laypeople in non-religious groups in both countries argued on the basis of a respect for autonomy for the possibility of euthanasia in severe cases but, at the same time, cautioned against its possible misuse. National contrast was apparent in the moral reasoning of lay respondents concerning the distinction between withholding and withdrawing treatment. The modern religious laypeople in Israel, especially, argued strongly, on the basis of the halakhic tradition, against allowing the withdrawal of treatment in accord with a patient’s wish. We conclude by discussing the emergent notion of shared responsibility and views of professional responsibility, which we connect through relevant cultural themes such as religion and national culture. (shrink)

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Advance directives have been hailed for two decades as the best way to safeguard patients’ autonomy when they are totally or partially incompetent. In many national contexts they are written into law and they are mostly associated with end-of-life decisions. Although advocates and critics of ADs exchange relevant empirical and theoretical arguments, the debate is inconclusive. We argue that this is so for good reasons: the ADs’ project is fraught with tensions, and this is the reason why they are both (...) important and deeply problematic. We outline six such tensions, and conclude with some positive suggestions about how to better promote patients’ autonomy in end-of-life decision. We argue that ADs should continue to be an option but they cannot be the panacea that they are expected to be. (shrink)

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Patient organizations are increasingly involved in national and international bioethical debates and health policy deliberations. In order to examine how and to what extent cultural factors and organizational contexts influence the positions of patient organizations, this study compares the positions of German and Israeli patient organizations (POs) on issues related to end-of-life medical care. We draw on a qualitative pilot study of thirteen POs, using as a unit of analysis pairs comprised of one German PO and one Israeli PO that (...) were matched on the basis of organizational category. Bioethical positions that emanated from the interviews concerned advance directives—general views, recent legal framework, and formalization; as well as active and passive euthanasia, withholding and withdrawing of treatment, and physician-assisted suicide. In addition to the unifying, within-country impact of cultural factors, we found that constituency-based organizations and partner organizations in both countries often share common views, whereas disease-based support organizations have very heterogeneous positions. We conclude by discussing how organizational contexts provide a source of uniformity as well as diversity in the positions of POs. (shrink)

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Die Entscheidung für oder gegen lebensverlängernde Behandlungsmaßnahmen geht inzwischen der Hälfte aller Todesfälle in Europa voraus. Sie wird im klinischen Alltag häufig als ethische Herausforderung wahrgenommen, zudem sind unter Klinikern juristische Unsicherheiten und Fragen der korrekten Vorgehensweise verbreitet. Die hier vorgestellte Münchner Leitlinie zu Entscheidungen am Lebensende soll rechtliche Unsicherheit reduzieren, Klinikumsmitarbeiter für die ethische Dimension von Therapieentscheidungen am Lebensende sensibilisieren und ethisch begründete Entscheidungen fördern. Aus organisationsethischer Perspektive soll mit der Leitlinie eine Reflexion und Meinungsbildung zu einem ethisch relevanten (...) Themenbereich erfolgen und ein Beitrag zur Qualitätssicherung der Patientenversorgung und damit auch zur Patientenzufriedenheit geleistet werden. Die Prozesse der Leitlinienentwicklung, -aktualisierung und -implementierung werden vorgestellt. Die wesentlichen inhaltlichen Elemente der Leitlinie mit Darstellung der Rechtslage, der Definition zentraler Begriffe und Klärung medizinischer Entscheidungskriterien werden an Hand eines Entscheidungsalgorithmus dargestellt. Inhalt und Prozess der Leitlinienentwicklung werden auf die folgenden organisationsethischen Qualitätskriterien hin überprüft: deliberativer Prozess, inhaltliche Transparenz, repräsentative Zusammensetzung der Arbeitsgruppe, Implementierung und Evaluation der Leitlinie. Institutionen, die diese Leitlinie übernehmen wollen, sollten diese von einem autorisierten Gremium überprüfen lassen und auf die spezifischen Bedürfnisse ihrer Institution adaptieren. Hierfür ist eine vorgeschaltete Bedarfserhebung hilfreich. In dem Gremium sollten all diejenigen vertreten sein, die in der Folge mit der Leitlinie arbeiten werden. (shrink)

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BackgroundAdvance directives imply the promise of determining future medical treatment in case of decisional incapacity. However, clinical practice increasingly indicates that standardized ADs often fail to support patients’ autonomy. To date, little data are available about the quality and impact of ADs on end-of-life decisions for incapacitated acute stroke patients.MethodsWe analyzed the ADs of patients with fatal stroke, focusing on: their availability and type, stated circumstances to which the AD should apply, and stated wishes regarding specific treatment options.ResultsBetween 2011 and (...) 2014, 143 patients died during their hospitalization on our stroke unit. Forty-two of them had a completed and signed, written AD, as reported by their family, but only 35 ADs were available. The circumstances in which the AD should apply were stated by 21/35 as a “terminal condition that will cause death within a relatively short time” or an ongoing “dying process.” A retrospective review found only 16 of 35 ADs described circumstances that, according to the medical file, could have been considered applicable by the treating physicians. A majority of patients objected to cardiopulmonary resuscitation, mechanical ventilation, and artificial nutrition, while almost all directed that treatment for alleviation of pain or discomfort should be provided at all times even if it could hasten death.ConclusionsThe prevalence of ADs among patients who die from acute stroke is still low. A major flaw of the ADs in our cohort was their attempt to determine single medical procedures without focusing on a precise description of applicable scenarios. Therefore, less than half of the ADs were considered applicable for severe acute stroke. These findings stress the need to foster educational programs for the general public about advance care planning to facilitate the processing of timely, comprehensive, and individualized end-of-life decision-making. (shrink)

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Background In nursing homes, residents’ relatives represent important sources of support for nurses. However, in the heightened stress of emergency situations, interaction between nurses and relatives can raise ethical challenges. Research objectives The present analysis aimed at elaborating a typology of nurses’ experience of ethical support and challenges in their interaction with relatives in emergency situations. Research design Thirty-three semi-structured interviews and six focus groups were conducted with nurses from different nursing homes in Germany. Data were analysed according to Mayring’s (...) method of qualitative content analysis. Participants and research context Participants were licensed nurses working in nursing homes. Ethical considerations Ethical approval was granted by Ostfalia University of Applied Sciences (02.07.2020) and the Ethics Committee of Hannover Medical School (Nr. 8866_BO_K_2020; 27.01.2020). Interviewees were anonymised and focus group were pseudonymised during transcription. All participants provided written consent. Findings/results In emergency situations, relatives can represent important sources of support for nurses. However, they may also give rise to different challenges, relating to four ethical conflicts: (1) the challenge of meeting the information needs of relatives while providing appropriate care to all residents; (2) the challenge of managing relatives’ demands for hospitalisation when hospitalisation is not deemed necessary by nurses; (3) the challenge of managing relatives’ demands for lifesaving treatment when such treatment contradicts the will of the resident; and (4) the challenge of attempting to initiate hospitalisation when relatives oppose this course of action. Several external factors make these conflicts especially challenging for nurses: fear of legal consequences, a low staffing ratio, and a lack of qualified nursing staff. Conclusions Conflict between nurses and relatives typically revolves around hospitalisation and the initiation of lifesaving treatment. Whether nurses perceive interaction with relatives as supportive or conflictual essentially depends on the quality of the relationship, which may be negatively influenced by a number of external factors. (shrink)

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