The overall aim of this paper is to systematically review the following important aspects of palliative sedation: prevalence, indications, survival, medication, food and fluid intake, decision making, attitudes of physicians, family experiences, and efficacy and safety. A thorough search of different databases was conducted for pertinent research articles published from 1966 to June 2007. The following keywords were used: end of life, sedation, terminal sedation, palliative sedation, refractory symptoms, and palliative care. Language of the articles was limited to English, French, German, and Dutch. Papers reporting solely on the sedatives used in palliative care, without explicitly reporting the prevalence or intensity of sedation, and papers not reporting on primary research (such as reviews or theoretical articles) were excluded. Methodological quality was assessed according to the criteria of Hawker et al. (2002). The search yielded 130 articles, 33.8% of which were peer-reviewed empirical research studies. Thirty-three research papers and one thesis were included in this systematic review. This review reveals that there still are many inconsistencies with regard to the prevalence, the effect of sedation, food and fluid intake, the possible life-shortening effect, and the decision-making process. Further research to clarify all of this should be based on multicenter, prospective, longitudinal, and international studies that use a uniform definition of palliative sedation, and valid and reliable instruments. Only through such research will it be possible to resolve some of the important ethical issues related to palliative sedation.
Focus on the translation and validation of measurement instruments has left a gap in the discussion on how to construct multilingual qualitative tools, such as interviews. Traditional methods of forward and backward translation have been criticized for weak conceptual equivalence, a crucial issue when multiple language interview methods are used. Through a creative arts metaphor of weaving, the authors describe an alternative process of multicentric translation used in the development of an interview guide designed to explore the impact of transition on palliative care patients in six European countries. Four identified core constructs illuminate this multicentric process: Cohesion, Congruence, Clarity, and Courtesy. Mutual reciprocity between researcher and translator offers greater possibility for construction of nuance and meaning, particularly where cultural parameters influence the collection and meaning of sensitive data from vulnerable populations. The translator therefore becomes a collaborator in the research process, which strengthens the rigor of language-based inquiry.
Since its origin, bioethics has attracted the collaboration of few social scientists, and social scientific methods of gathering empirical data have remained unfamiliar to ethicists. Recently, however, the clouded relations between the empirical and normative perspectives on bioethics appear to be changing. Three reasons explain why there was no easy and consistent input of empirical evidence in bioethics. Firstly, interdisciplinary dialogue runs the risk of communication problems and divergent objectives. Secondly, the social sciences were absent partners since the beginning of bioethics. Thirdly, the meta-ethical distinction between 'is' and 'ought' created a 'natural' border between the disciplines. Now, bioethics tends to accommodate more empirical research. Three hypotheses explain this emergence. Firstly, dissatisfaction with a foundationalist interpretation of applied ethics created a stimulus to incorporate empirical research in bioethics. Secondly, clinical ethicists became engaged in empirical research due to their strong integration in the medical setting. Thirdly, the rise of the evidence-based paradigm had an influence on the practice of bioethics. However, a problematic relationship cannot simply and easily evolve into a perfect interaction. A new and positive climate for empirical approaches has arisen, but the original difficulties have not disappeared.
Discussions of ethical approaches in nursing have been much enlivened in recent years, for instance by new developments in the theory of care. Nevertheless, many ethical concepts in nursing still need to be clarified. The purpose of this contribution is to develop a fundamental ethical view on nursing care considered as moral practice. Three main components are analyzed more deeply--i.e., the caring relationship, caring behavior as the integration of virtue and expert activity, and "good care" as the ultimate goal of nursing practice. For the development of this philosophical-ethical interpretation of nursing, we have mainly drawn on the pioneering work of Anne Bishop and John Scudder, Alasdair MacIntyre, Lawrence Blum, and Louis Janssens. We will also show that the European philosophical background offers some original ideas for this endeavor.
Due to the nursing profession's growing multidisciplinary nature, the increasing dominance of economic discourse, and the intensified legal framework in which health care professionals need to operate, the context of nursing is changing. In this changed professional context, nursing professional codes have to accommodate to the increasing ethical demands placed upon the profession. Therefore, an ethicization of these codes is desirable, and their moral objectives need to be revalued.
Transition as a concept in healthcare has been explored, but there is limited empirical work which considers transition in the context of palliative care, specifically from the patient perspective. This article reports findings from a qualitative study designed to explore transition experiences of 100 advanced cancer patients in six European countries. Data were analyzed using the ATLAS.ti program. Findings suggest that transition is a confusing time of mixed messages, poor communication, and uncertainty, but the physical environment of the hospice offers a place of ontological security from which to address this. Transition concepts fail to capture the palliative care experience fully. Transience, as an alternative concept, is reported, although further research is needed to explore this. In clinical practice, the value given to hospice by patients suggests that clinicians must carefully balance the benefit of mainstream integration with sensitive assimilation of hospice philosophy.
BACKGROUND In recent years, changes in attitudes towards (non-)disclosure of donor conception to offspring and/or others have been observed. Studies have started to identify possible factors that contribute to these changes that are relevant for clinics, counsellors and policy-makers in their approach to the disclosure process. The aim of this systematic review was to integrate the existing knowledge on factors that influence the disclosure decision-making process of donor conception to offspring and/or others in heterosexual couples, and to discuss future trends and concerns. METHODS A bibliographic search of English, French, German and Dutch language publications of five computerized databases was undertaken from January 1980 to March 2012. A Cochrane Database systematic review approach was applied. RESULTS A total of 43 studies met the inclusion criteria, and these represented 36 study populations. The review shows that the parents' disclosure decision-making process is influenced by a myriad of intrapersonal, interpersonal, social and family life cycle features. These influences were not necessarily independent but rather were interwoven and overlapping. Theoretical frameworks have not yet been used to explain how the different factors influenced disclosure. Methodological limitations of the original publications (lack of information, several factors included in one study, descriptive character of studies) and this review (multiple factors that may interact) which hindered integration of the findings are outlined. CONCLUSIONS Intrapersonal, interpersonal, social and family life cycle factors influence the parents' disclosure decision-making process. The review has demonstrated the need for the development of a theoretical model to enable integration of the identified influencing factors. Further research is needed on the role of stigma, confrontation efficacy, extended family, donor siblings' characteristics, cross-border treatment, culture, gender and socio-educational factors.
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