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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 reexamination 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. Keywords: Europe; Palliative care; End-of-life care; Euthanasia; UK; Belgium; The Netherlands

Objectives Education and training are seen as 'absolutely essential parts of providing palliative care'. As part of a larger study to explore the extent of palliative care need in two acute hospital settings, we report the perceptions of healthcare professionals regarding their training and educational needs. Methods In Phase 1, we undertook eight focus groups and four individual interviews with 58 health professionals from general practice, specialist palliative care and acute hospitals, exploring perceived education and training priorities. Phase 2 of the study involved a survey of palliative care need at two hospitals in England. Hospital based doctors and nurses completed questionnaires to identify patients with palliative care needs and to respond to questions about their training and education needs. Results Various barriers exist to the provision and management of palliative care, not least a need for more education and training. Focus group participants felt they were not adequately trained to address prognosis and goals of care with patients and their families. In Phase 2 of the study, 171 nursing staff and 81 medical staff completed the questionnaire and two-thirds of our sample felt they required additional training in palliative care. Conclusions Although important, the use of standardised care pathways alongside the provision of education and training for healthcare professionals alone will not improve quality of care. More work is needed to examine and clarify the interplay of: behaviour change, setting, the 'cure' orientation approach, type of health professional and nature of any educational intervention in order to effect sustained behavioural change. [ABSTRACT FROM AUTHOR]

Little is known about end-of-life preferences or how risks are assessed surrounding doctor-patient or doctor-family relationships during end-of-life decision making. Older people are often excluded from end-of-life care research although there is some evidence that most would express preferences for 'comfort care' rather than life-sustaining interventions if facing terminal illness. This paper draws on data from focus group discussions with older people to illuminate how interpersonal and bodily aspects of the dying process are associated with shifting evaluations of two core techniques of palliative care: morphine administration and terminal sedation. Participants understood an idealised death to be that in which morphine administration and terminal sedation serve to provide dying people with an easy, comfortable and quiet death. In this, bodily symptoms of distress are discreetly controlled and death occurs at an appropriate time and place. At the same time the role of medicine in procuring an idealised death is linked to profound concerns about new risks that flow from the intermarriage of medical science with the basic human obligation of providing compassionate care to those who are dying. [ABSTRACT FROM AUTHOR]

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]

Objectives: As people face cancer and the end of life, the social, cultural and therapeutic role of food takes on an increasing significance. As part of a larger study involving older Chinese people resident in the UK, we investigated their beliefs about the influence of food on cancer and its role in supportive cancer care., Design: A two-phase qualitative research study involved older Chinese people identified via Chinese community groups. In phase one, 46 older Chinese people participated in seven focus group discussions. In phase two, semi-structured interviews were conducted in Cantonese or Mandarin with 46 different older Chinese people to elicit their understandings of the role of food in health and illness generally and specifically for those with cancer., Results: The analyses revealed four main themes: (1) food as 'therapeutic'; (2) food as 'risky'; (3) food as supportive and comforting; and (4) beliefs about the lack of culturally appropriate and acceptable food in hospitals. Expectations about the lack of Chinese food and the poor quality and perceived unsuitability of 'western' food were regarded as major concerns in relation to hospital admission., Discussion: Understanding the perceived cultural and therapeutic significance of food and its functions in social exchange is one important aspect of promoting supportive and end-of-life cancer care for minority communities. These views helped explain the diversity and salience of food use in illness for older Chinese people resident in the UK.