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Summary: This paper explores Muslim women''s experiences of suffering in Jordanian intensive care units. A narrative approach was employed to access women''s stories of their critical illness. Sixteen women who had spent at least 48hours in intensive care were recruited from two hospitals in a Jordanian city and took part in between one and three interviews over a six-month period. Women''s accounts of suffering were pervaded with physical, social, spiritual and technological themes. Pain was a central strand in the women''s accounts and was experienced often as severe, overwhelming and disturbing to their sleep. The sudden onset of illness, the unfamiliar ICU environment and feeling of uncertainty made it difficult for the women to interpret their experiences. Religious beliefs and cultural norms helped the women make sense of their suffering. Social support, especially from the family, was reported by the women to be essential: a lack of social support was seen as a symbol of death. This study emphasises the importance of looking at a patient who is critically ill as a whole person within the context of their cultural, spiritual and biographical milieu. [Copyright &y& Elsevier]

Abstract: This paper reports findings from visits to palliative care settings and research units in the UK, Belgium and the Netherlands. The aim was to learn about clinicians’ (both nurses and doctors) and academic researchers’ understandings and experiences of palliative sedation for managing suffering at the end of life, and their views regarding its clinical, ethical and social implications. The project was linked to two larger studies of technologies used in palliative care. Eleven doctors, 14 nurses and 10 researchers took part in informal interviews. Relevant reports and papers from the academic, clinical and popular press were also collected from the three countries. The study took place in a context in which attention has been drawn towards palliative sedation by the legalisation of euthanasia in the Netherlands and Belgium, and by the re-examination of the legal position on assisted dying in the UK. In this context, palliative sedation has been posited by some as an alternative path of action. We report respondents’ views under four headings: understanding and responding to suffering; the relationship between palliative sedation and euthanasia; palliative sedation and artificial hydration; and risks and uncertainties in the clinician-patient/family relationship. We conclude that the three countries can learn from one another about the difficult issues involved in giving compassionate care to those who are suffering immediately before death. Future research should be directed at enabling dialogue between countries: this has already been shown to open the door to the development of improved palliative care and to enhance respect for the different values and histories in each. [Copyright &y& Elsevier]

Abstract: Context: Numerous attempts have been made to describe and define sedation in end-of-life care over time. However, confusion and inconsistency in the use of terms and definitions persevere in the literature, making interpretation, comparison, and extrapolation of many studies and case analyses problematic. Objectives: This evidence review aims to address and account for the conceptual debate over the terminology and definitions ascribed to sedation at the end of life over time. Methods: Six electronic databases (MEDLINE, PubMed, Embase, AMED, CINAHL, and PsycINFO) and two high-impact journals (New England Journal of Medicine and the British Medical Journal) were searched for indexed materials published between 1945 and 2011. This search resulted in bibliographic data of 328 published outputs. Terms and definitions were manually scanned, coded, and linguistically analyzed by means of term description criteria and discourse analysis. Results: The review shows that terminology has evolved from simple to complex terms with definitions varying in length, comprising different aspects of sedation such as indications for use, pharmacology, patient symptomatology, target population, time of initiation, and ethical considerations, in combinations of a minimum of two or more of these aspects. Conclusion: There is a pressing need to resolve the conceptual confusion that currently exists in the literature to bring clarity to the dialogue and build a base of commonality on which to design research and enhance the practice of sedation in end-of-life care. [Copyright &y& Elsevier]

Abstract: Context: Guidelines about palliative sedation typically include recommendations to protect the well-being of relatives. Objectives: The aim of this study was to systematically review evidence on the experiences of relatives with the practice of palliative sedation. Methods: PubMed, Embase, Web of Science, PsycINFO, and CINAHL were searched for empirical studies on relatives'' experiences with palliative sedation. We investigated relatives'' involvement in the decision-making and sedation processes, whether they received adequate information and support, and relatives'' emotions. Results: Of the 564 studies identified, 39 were included. The studies (30 quantitative, six qualitative, and three mixed methods) were conducted in 16 countries; three studies were based on relatives'' reports, 26 on physicians'' and nurses'' proxy reports, seven on medical records, and three combined different sources. The 39 studies yielded a combined total of 8791 respondents or studied cases. Caregivers involved relatives in the decision making in 69%–100% of all cases (19 quantitative studies), and in 60%–100% of all cases, relatives were reported to have received adequate information (five quantitative studies). Only two quantitative studies reported on relatives'' involvement in the provision of sedation. Despite the fact that the majority of relatives were reported to be comfortable with the use of palliative sedation (seven quantitative studies, four qualitative studies), several studies found that relatives were distressed by the use of sedation (five quantitative studies, five qualitative studies). No studies reported specifically about the support provided to the relatives. Conclusion: Relatives'' experiences with palliative sedation are mainly studied from the perspective of proxies, mostly professional caregivers. The majority of relatives seems to be comfortable with the use of palliative sedation; however, they may experience substantial distress by the use of sedation. [Copyright &y& Elsevier]