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Background: South Asians constitute the single largest ethnic minority group in the United Kingdom, yet little is known about their perspectives on, and experiences of, end-of-life care., Aim: To explore beliefs, attitudes and expectations expressed by older South Asians living in East London about dying at home., Design: A qualitative study using focus groups and semi-structured interviews. Data were analysed using a constructivist grounded theory approach., Setting/participants: Five focus groups and 29 in-depth semi-structured interviews were conducted with a total of 55 older adults (24 men and 31 women) aged between 52 and 78 years. Participants from six South Asian ethnic groups were recruited via 11 local community organisations., Results: Two key themes were identified. The theme of 'reconsidering the homeland' draws on the notion of 'diaspora' to help understand why for many participants, the physical place of death was perceived as less important than the opportunity to carry out cultural and religious practices surrounding death. The second theme 'home as a haven' describes participants' accounts of how their home is a place in which it is possible to perform various cultural and religious rituals. Cultural and religious practices were often seen as essential to achieving a peaceful death and honouring religious and filial duties., Conclusions: Older people of South Asian ethnicity living in East London perceive home as more than a physical location for dying relatives. They make efforts to adhere, and also adapt, to important social and cultural values relating to death and dying as part of the wider challenge of living in an emigrant society.

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 © 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.)

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.

Background: Peer education by volunteers may aid attitudinal change, but there is little understanding of factors assisting the preparation of peer educators. This study contributes to conceptual understandings of how volunteers may be prepared to work as peer educators by drawing on an evaluation of a training programme for peer education for advance care planning (ACP)., Objectives: To report on volunteers' perspectives on the peer education training programme, their feelings about assuming the role of volunteer peer educators and the community engagement activities with which they engaged during the year after training. To examine broader implications for peer education., Design: Participatory action research employing mixed methods of data collection., Participants: Twenty-four older volunteers and eight health and social care staff., Data Collection Methods: Evaluative data were gathered from information provided during and at the end of training, a follow-up survey 4 months post-training; interviews and focus groups 6 and 12 months post-training., Findings: Volunteers' personal aims ranged from working within their communities to using what they had learnt within their own families. The personal impact of peer education was considerable. Two-thirds of volunteers reported community peer education activities 1 year after the training. Those who identified strongly with a community group had the most success., Conclusion: We reflect on the extent to which the programme aided the development of 'critical consciousness' among the volunteers: a key factor in successful peer education programmes. More research is needed about the impact on uptake of ACP in communities., (© 2011 Blackwell Publishing Ltd.)

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 © 2012 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.)

Purpose: To explore experiences of Jordanian Muslim women in relation to bodily change during critical illness., Design: A longitudinal narrative approach was used. A purposive sample of 16 Jordanian women who had spent a minimum of 48 hr in intensive care participated in one to three interviews over a 6-month period., Findings: Three main categories emerged from the analysis: the dependent body reflects changes in the women's bodily strength and performance, as they moved from being care providers into those in need of care; this was associated with experiences of a sense of paralysis, shame, and burden. The social body reflects the essential contribution that family help or nurses' support (as a proxy for family) made to women's adjustment to bodily change and their ability to make sense of their illness. The cultural body reflects the effect of cultural norms and Islamic beliefs on the women's interpretation of their experiences and relates to the women's understandings of bodily modesty., Conclusions: This study illustrates, by in-depth focus on Muslim women's narratives, the complex interrelationship between religious beliefs, cultural norms, and the experiences and meanings of bodily changes during critical illness., Clinical Relevance: This article provides insights into vital aspects of Muslim women's needs and preferences for nursing care. It highlights the importance of including an assessment of culture and spiritual aspects when nursing critically ill patients., (© 2011 Sigma Theta Tau International.)

Qualitative research provides important insights into the experiences and perspectives of older people on end-of-life issues, but such research is methodologically and ethically complex. We offer a set of reflections from six end-of-life care studies conducted with older people in four European countries: Belgium, Germany, the Netherlands, and the United Kingdom. The reflection process was informed by four full-day meetings between the authors and referral to sources including the study interview guides, summary "pen portraits" about key issues encountered in the interviews, and key sections of the interview transcripts. We identified as major challenges accessing people, the introduction of end-of-life issues in an interview, managing emotions, the presence of companions, and reciprocity. Formal ethical review committees rarely take into account these complex issues. We concluded that is it necessary to maintain an ongoing reflexive stance to enhance qualitative research practice in the intersecting fields of aging and end-of-life studies.

Older people who live alone face particular challenges if they are to age and die well in the place and manner of their choosing. This discussion paper examines the experiences and needs of older people living alone towards the end of life. The paper focuses on the U.K., given recent policy and service development initiatives there which emphasize home as a place of support and care; the promotion of independence; ensuring choice and decision making; and equity. These initiatives do not acknowledge diversity in the older population and make little provision to meet the specific needs that older people living alone may have as they approach the end of life. We identify three broader social factors that influence whether older people who live alone can remain at home until the end of their lives. The first factor is the physical environment; the second concerns their material environment; and the third relates to their social environment and their access to informal and formal care services. In future, palliative care research of relevance to older people should consider living arrangements as an important variable and be cognisant of the way in which wider social issues constrain the quality of end-of-life care that those living alone in older age receive.

Nursing homes are a common site of death, but older residents receive variable quality of end-of-life care. We used a mixed methods design to identify external influences on the quality of end-of-life care in nursing homes. Two qualitative case studies were conducted and a postal survey of 180 nursing homes surrounding the case study sites. In the case studies, qualitative interviews were held with seven members of nursing home staff and 10 external staff. Problems in accessing support for end-of-life care reported in the survey included variable support by general practitioners (GPs), reluctance among GPs to prescribe appropriate medication, lack of support from other agencies, lack of out of hours support, cost of syringe drivers and lack of access to training. Most care homes were implementing a care pathway. Those that were not rated their end-of-life care as in need of improvement or as average. The case studies suggest that critical factors in improving end-of-life care in nursing homes include developing clinical leadership, developing relationships with GPs, the support of 'key' external advocates and leverage of additional resources by adoption of care pathway tools.

Since October 2007 staff across health and social care services in England and Wales have been guided by the Mental Capacity Act (2005) in the provision of care for those who may lack capacity to make some decisions for themselves. This paper reports on the findings from a study with 26 staff members working in three palliative and three neurological care centres. Semistructured interviews were used to gain an understanding of their knowledge of the Mental Capacity Act, the issue of capacity itself and the documentation processes associated with the introduction of the Act and in line with advance care planning. Within this setting advance care planning is a key part of care provision and the mental capacity of service users is a regular issue. Findings show that staff generally had a good understanding of issues around capacity but felt unclear about some of the terminology related to the Mental Capacity Act, impacting on their confidence to discuss issues with service users and complete the documentation. Many felt the Act and its associated documentation had aided record-keeping in an area staff already delivered well in practice. Advance care planning in the context of the Mental Capacity Act is not as well embedded in practice as providers would like and consideration needs to be given to how and when staff should approach these issues with service users.

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 48 hours 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 2010 Elsevier Ltd. All rights reserved.)

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.

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.