There is growing interest in clinical ethics. However, we still have sparse knowledge about what is actually going on in the everyday practice of clinical ethics consultations. This paper introduces a descriptive evaluation tool to present, discuss and compare how clinical ethics case consultations are actually carried out. The tool does not aim to define ‘best practice’. Rather, it facilitates concrete comparisons and evaluative discussions of the role, function, procedures and ideals inherent in clinical ethics case consultation practices. The tool (...) was developed during meetings of the European Clinical Ethics Network. Based on written reports and participation in the network meetings, the development and the content of the tool and the results of its application in presenting and discussing 10 case consultations are summarized. The tool facilitated understanding of the details of clinical ethics case consultations across individuals and institutions with various experiences and cultures, and comparison between various practices. (shrink)

Background While there are many guidelines on how to make ethical decisions at the end of life, there is little evidence regarding the quality of this sort of ethical guidelines. Objectives First, this study aims to demonstrate the conceptual transferability of the Appraisal of Guidelines for Research and Evaluation (AGREE) instrument for the quality assessment of ethical guidelines. Second, it aims to illustrate the status quo of the quality of guidelines on end-of-life decision-making by using the AGREE instrument in a (...) first practice test. Method The transferability of the AGREE instrument on the quality assessment of ethical guidelines is demonstrated by conceptual analysis. Guidelines on end-of-life decisions in medicine are identified through a systematic search in MEDLINE (from June 1999 to June 2009). The quality of all included guidelines was assessed with a slightly modified AGREE instrument. Results Of 103 guidelines identified, 34 were included as relevant. The majority of the guidelines analysed in this study were assessed as qualitatively insufficient in five out of six AGREE quality domains. A few guidelines demonstrated, however, that a high level of quality in accordance with the AGREE requirements is possible. Conclusion This review concludes that the quality of many ethical guidelines should and can be improved in all quality domains specified by the AGREE instrument. Furthermore, conceptual analysis indicates that a slightly modified AGREE instrument is transferable to the comprehensive evaluation of the quality of ethical guidelines. Nevertheless, future research is needed to improve the assessment of the presentation of the guidelines' normative basis. (shrink)

Objectives: To collect information on the involvement, legal understanding and ethical views of preregistration house officers regarding end-of-life decision making in clinical practice.Design: Structured telephone interviews.Participants: 104 PRHO who responded.Main outcome measures: Information on the frequency and quality of involvement of PRHO in end-of-life decision making, their legal understanding and ethical views on do-not-resuscitate order and withdrawal of treatment.Results: Most PRHO participated in team discussions on the withdrawal of treatment or a DNR order . Of them, 46 participants had themselves (...) discussed the DNR order with patients. In all, it was agreed by 84 respondents that it would be unethical to make a DNR order on any patient who is competent without consulting her or him. With one exception, it was indicated by the participants that patients who are competent may refuse tube feeding and 101 participants thought that patients may refuse intravenous nutrition. The withdrawal of artificial ventilation in incompetent patients with serious and permanent brain damage was considered to be morally appropriate by 95 and 97 thought so about the withdrawal of antibiotics. The withdrawal of intravenous hydration was considered by 67 to be morally appropriate in this case.Conclusions: PRHO are often involved with end-of-life decision making. The results on ethical and legal understanding about the limitations of treatment may be interpreted as a positive outcome of the extensive undergraduate teaching on this subject. Future empirical studies, by a qualitative method, may provide valuable information about the arguments underlying the ethical views of doctors on the limitations of different types of medical treatment. (shrink)

We read with interest the papers on informed consent published in a recent issue of the Journal of Medical Ethics.1 Whatever their differences, and however much they questioned some aspects of the duty to respect autonomy through attempting to obtain informed consent for therapeutic interventions, there was general agreement that competent adult patients are entitled to a core of basic information about their treatment options. There was also consensus that training in the process of obtaining consent is important. In our (...) experience, two dimensions of such training are of particular interest. On the one hand, students require good …. (shrink)

Objectives: To elicit the perceptions and preferences of patients with rheumatoid arthritis regarding information and participation in treatment decision-making. To analyse the patients’ narratives on the background of the ethical discourse on various approaches to treatment decision-making. Design: In-depth interviews with themes identified using principles of grounded theory. Participants: 22 patients with long-standing rheumatoid arthritis. Main outcome measures: Qualitative data on patients’ perceptions and preferences regarding information and participation in decision-making about treatment. Results: Decision-making about treatment has been described by (...) the patients as a process consisting of different stages with shifting loci of control and responsibility. Patients initially received one treatment recommendation and were not aware of alternative treatment options. Those participants in this study who wanted information about negative effects of a treatment cited “interest in one’s own health” and the potential “use of information” as reasons for their preference. The physicians’ expert knowledge and clinical experience regarding the effects of medication were cited as arguments by patients for a treatment recommendation. Conclusions: The patients’ accounts of decision-making about treatment differ from models of physician–patient relationship that have been put forward in ethical discourse. These differences may be relevant with respect to the starting point of an ethical analysis of treatment decision-making. Patients’ accounts with respect to a lack of information on treatment alternatives point to ethically relevant challenges regarding treatment decision-making in clinical practice. (shrink)