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A research article that evaluates literature reviews on end-of-life care for minority ethnic groups in the uk and assesses their suitability as an evidence base for policy. The article identifies themes and findings from the reviews, including structural inequality, inequality by disease group, referrals, place of care and death, awareness and communication issues, and cultural competency. Recommendations for improving services are also provided.
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Abstract Background: Evidence of low end-of-life (EoL) care service use by minority ethnic groups in the UK has given rise to a body of research and a number of reviews of the literature. This article aims to review and evaluate literature reviews on minority ethnic groups and EoL care in the UK and assess their suitability as an evidence base for policy. Methods: Systematic review. Searches were carried out in thirteen electronic databases, eight journals, reference lists, and grey literature. Reviews were included if they concerned minority ethnic groups and EoL care in the UK. Reviews were graded for quality and key themes identified. Results: Thirteen reviews (2001-2009) met inclusion criteria. Seven took a systematic approach, of which four scored highly for methodological quality (a mean score of six, median seven). The majority of systematic reviews were therefore of a reasonable methodological quality. Most reviews were restricted by ethnic group, aspect of EoL care, or were broader reviews which reported relevant findings. Six key themes were identified. Conclusions: A number of reviews were systematic and scored highly for methodological quality. These reviews provide a good reflection of the primary evidence and could be used to inform policy. The complexity and inter- relatedness of factors leading to low service use was recognised and reflected in reviews’ recommendations for service improvement. Recommendations made in the UK End-of-Life Care Strategy were limited in comparison, and the Strategy’s evidence base concerning minority ethnic groups was found to be narrow. Future policy should be embedded strongly in the evidence base to reflect the current literature and minimise bias.
Background Evidence-based public healthcare policy Public health policy is ideally informed by an up-to-date and unbiased evidence base [1]. This can take the form of research studies, expert opinion, public consultations and literature reviews (systematic or traditional narra- tive). Many of these sources are potentially subject to various forms of bias. Systematic literature reviews, how- ever, are distinguished from traditional narrative reviews
by attempts to minimise bias through the employment of a transparent, rigorous and repeatable review proce- dure [2,3]. Systematic reviews are becoming increasingly important in healthcare research [1,4] and are particu- larly useful for policy makers as they not only summar- ise a large body of literature, but enable novel insights to emerge from the synthesis of multiple studies find- ings [5]. The systematic review of quantitative studies, particularly randomised controlled trials (RCTs), has come to be seen as a ‘gold standard’ in healthcare research [2]. Systematic reviews of qualitative studies are, however, also important, as quantitative research can be
© 2011 Evans et al; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
inadequate for the comprehension of important issues such as understanding patients’ healthcare seeking beha- viour or the acceptability of interventions [6,7]. These may be better ascertained through thorough, in-depth, qualitative research into practitioners’ and patients’ atti- tudes, beliefs, and preferences [6,7]. As such, the sys- tematic review of qualitative literature is also gaining popularity in healthcare research [8].
End-of-life care: the minority ethnic group experience The low use of services by members of minority ethnic groups is an issue which is gaining increasing attention from policy makers within end-of-life (EoL) care (the term ‘minority ethnic group’ is used, in accordance with the official classification used by the UK Office for National Statistics, to describe groups other than ‘white British’). First highlighted by Rees [9], in a study of ‘immigrant’ use of one hospice, the issue did not, how- ever, reach the policy agenda until a decade later, when Hill and Penso [10] drew attention to disparities between minority ethnic groups’ estimated need of ser- vices and their actual service use. Further research has confirmed low use of EoL care services and identified a number of reasons for this, including: younger popula- tion age structure; lower rates of cancer; lower rates of referrals; low awareness of services; and, some culturally inappropriate services [10-18], This growing body of lit- erature has given rise to a number of literature reviews, which have focused on various aspects of EoL care and minority ethnic groups [19-31]. Given the number of reviews and their range of foci it is essential to assess their quality and, therefore, their potential to represent the evidence base and inform policy. A similar approach has been used for the evaluation of literature reviews of palliative care services [32] and interventions to improve care [33]. Various policy initiatives have included commitments to ensure equal access for people from minority ethnic groups to EoL care services [27,34-37]. The most recent of which is the End-of-Life Care Strategy [37], the Department of Health’s first comprehensive policy docu- ment for EoL care [38]. Some policy documents expli- citly state the importance of sensitivity to cultural and religious differences and the need for services to provide ‘culturally sensitive’ care to reduce inequalities [27,35-37]. Cultural competency training is also identi- fied as a priority for healthcare staff [27,35-37].
Aim and objectives This article aims to evaluate the reviews of the literature concerning minority ethnic groups and EoL care in the UK. It is important to critically assess reviews in order to examine their quality, identify gaps in knowledge and assess their suitability as an evidence base for policy.
Specific objectives include: to identify all reviews (sys- tematic and non-systematic) regarding minority ethnic groups and EoL care from the UK; to examine the methodological quality of the reviews; to carry out an interpretive synthesis of reviews’ findings; and, to iden- tify recommendations for service improvement.
Methods Review procedure This work was undertaken as part of the ‘PRISMA’ pro- gramme [39]. ‘Reflecting the Positive diveRsities of Eur- opean prIorities for reSearch and Measurement in end of life cAre’ (PRISMA) is a three year coordinating action funded by the European Union under the Seventh Framework Programme (FP7) [39]. PRISMA is an inte- grated programme consisting of eight work packages which aim to co-ordinate research priorities and practice about end-of-life care across Europe and Africa [39]. PRISMA incorporated a work package on the influence of culture on EoL care [39].
Search strategy Thirteen electronic databases were searched using the search terms in table 1. In addition, the reference lists of retrieved articles and the archives of key journals (selected if they contained a high number of relevant articles or were medical social science, death and/or pal- liative care specific) were searched (table 1). Publications by authors of included articles were searched via authors’ web pages (when available) and the Web of Knowledge ‘author search’ facility. In addition, as part of the PRISMA project a network of experts in cultural issues in EoL care was set up. Experts recommended lit- erature, including unpublished and grey literature.
Inclusion criteria Reviews were included if they reported on minority ethnic groups and EoL care in the United Kingdom (UK). Only literature reviews were included; a systema- tic review of primary research has been undertaken as a second part of the project and published elsewhere [40]. No relevant foreign language reviews were identified. Both traditional (non-systematic) and systematic reviews were included. Non-systematic reviews were included, despite difficulties in assessing both their methodological quality and their propensity for bias, because the use of systematic search procedures is a relatively recent development, especially for qualita- tive and mixed method research. To thoroughly appraise all reviews of the literature on minority eth- nic groups, which have potentially influenced British policy, the inclusion of non-systematic reviews was necessary.
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inclusion criteria and a further 100 were not reviews ( original studies and 55 other articles). A total of 13 reviews met inclusion criteria (Figure 1), details of reviews [19-31] and related articles [47] can be seen in table 2. A number of included reviews had a narrow focus; restricting the review by ethnic group [24], a particular aspect of EoL care [21,22], or EoL care setting [29,31]. In addition, broader reviews of cancer services and min- ority ethnic groups were included if they reported signif- icant findings regarding EoL care [19,23]. All reviews were published between 2001 and 2009 (table 2).
Reviews’ inclusion criteria differed in line with their varied focus. In addition, five reviews only included pri- mary research [19,21,23,24,31], whereas eight reviews [20,22,25-30] included overviews, opinion pieces, and even web-based resources to build a picture of minority ethnic groups’ experience of EoL care. The majority of the articles included in the reviews came from the UK; five reviews [19,23,27,29,30] included evidence from the UK only, whereas eight reviews included non-UK sources to a greater or lesser extent [20-22,24-26,28,31]. Where reviews included material from non-UK sources this has been highlighted in table 2. Due to the
Table 2 Reviews that met inclusion criteria
Reference Objective Methods Number of articles included Quality Ahmed, et al. (2004)[21]
To determine problems and issues in accessing specialist palliative care.
Systematic review (1997-2003). Papers from non-UK sources included.
40 9
Bager, et al. (2009)[29]
To summarises the current research evidence on cultural issues relating to ethnicity in EoL care in care homes.
Non-systematic (narrative) review.
44 N/A
Cox, et al. (2003) [22]
To consider the implications of culture on do-not- resuscitate decision-making and make recommendations for practice.
Systematic. Papers from non-UK sources included.
34 4
Eklan, et al. (2007)[19]
To explore the qualitative literature concerning the experiences of cancer service users from minority ethnic groups.
’Critical’* review (1995-2005). Non-EoL articles included.
25 (11 on EoL care) 7
Firth (2001)[25] To review the literature concerning minority ethnic groups and EoL care.
Non-systematic (narrative) review (1995-2001). Non-UK and non-EoL articles included.
406 N/A
Gunaratnam, (2006)[28]
To draw attention to the palliative care needs and experiences of elders from minority ethnic groups.
Non-systematic (narrative) review. Papers from non-UK sources included.
53 N/A
House of Commons Health Committee (2004)[27]
To examine the extent to which the needs and wishes of patients of different ages are taken into account, including their care choices, ethnicity, cultural and spiritual beliefs.
Report of the House of Commons fourth session on palliative care.
65 (plus 20 oral statements) ( pieces of evidence on minority ethnic groups; 4 written and 4 oral)
N/A
Johnson (2001) [26]
To review the literature on palliative care, cancer and minority ethnic communities.
Non-systematic (narrative) review (papers from a broader systematic review[47] included). Papers from non-UK sources included.
12 (3 on EoL care) N/A
Jones (2005)[20] To explore the qualitative literature concerning EoL issues and ethnicity/race/diversity.
Systematic review. Papers from non-UK sources included.
119 4
Payne, et al. (2005)[24]
To explore Chinese cultural perspectives on EoL care.
Systematic review. Papers from non-UK sources included.
10 5
Redman, et al. (2008)[23]
To explore the evidence concerning race, ethnicity, cancer and cancer services
’Critical’* review. 31 (eight on EoL care) 7
The Department of Health (2008) [30]
To provide evidence concerning the diversity of EoL experiences.
Non-systematic (narrative) review and public consultation.
23 (5 on ‘race’ and 2 on ‘religion and belief’)
N/A
Walshe, et al. (2009)[31]
To identify whether patients with different characteristics use community palliative care services in different ways.
Systematic (1997-2008). Papers from non-UK sources included.
48 8
*Critical reviews took a systematic approach to the search procedure but reported only on selection of the articles retrieved.
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difference in reviews’ aim, scope and inclusion criteria it is difficult to judge the success or the relevance of a review by the number of articles included alone.
Methodological quality Descriptions of the review process ranged from no infor- mation to thorough outlines of a systematic review proce- dure. Seven reviews followed a systematic search procedure [19-24,31]. These reviews were graded for methodological quality according to the criteria in table 3. Quality scores ranged from four to nine out of ten. The mean score was six (median seven), indicating that the ‘systematic’ reviews were, on average, of a reasonable methodological quality (table 3). These reviews all included electronic database searches and most included reference list searches [19-24,31]. Three reviews included journal hand-searches [21,22,31], one searched grey litera- ture [20], and one contacted experts in the field [19]. The number of reviewers was rarely explicit. Three reviews graded studies for quality [21,23,31]. Four ‘systematic’ reviews did not grade articles or explicitly rejected grading [19,20,22,24]. The synthesis of data and presentation of findings was found to be good in most reviews (table 3). The remaining six reviews did not provide sufficient information to allow the grading of quality [25-30]. A lack of detail does not necessarily mean the review pro- cess was of poor quality or that results are less signifi- cant. It is not, however, possible to assess the rigour of the review process.
Key themes and findings An interpretative synthesis of review findings resulted in the following six themes: structural inequality; inequality by disease group; referrals; place of care and death; awareness and communication issues; and, cultural competency. Structural inequality Structural inequalities which people from minority eth- nic groups face due to socio-economic and geographic disadvantages was a reoccurring theme [21,24,28,48]. Services were acknowledged to be ‘disproportionally needed in areas of social deprivation, and disproportion- ally present in areas of social affluence’ [27]. Inequality in provision is partly due to the predominately charita- ble nature of service development; with more donations received in wealthier areas [28,48]. Minority ethnic groups, therefore, face ‘double discrimination’, as higher concentrations of such groups are found in areas of social deprivation, and even within these areas they have low service use in comparison to ‘white British’ service users [27]. Elderly members of minority ethnic groups were said to be particularly vulnerable due to the com- bined effects of low socio-economic status and discrimi- nation [28,29]. Furthermore, carers reported additional problems, such as anxieties regarding housing and visas [23,30]. Inequality by disease group Differences in cancer incidence and mortality were high- lighted in a number of reviews [19,20,23,25-28] and the
Table 3 Grading of methodological quality of the systematic and critical reviews
Criteria Components Scores Agreed Scores for Each Review Ahmed (2004) [21]
Cox et al. (2006) [22]
Elkan, et al. (2007) [19]
Jones (2005) [20]
Payne, et al. (2005) [24]
Redman, et al. (2008) [23]
Walshe, et al. (2009) [31] Specifying the objectives
precise = 2 vague = 1 implicit = 0
2 2 2 2 2 2 2
Searching the literature
Electronic databases, journal searches, grey literature, reference lists, unpublished sources known to experts (via personal communication) [42], author searches.
4+methods = 2 2 or 3 = 1 0 or 1 = 0
1 2 1 1 1 0 1
Selecting relevant and valid studies
Search terms specified, inclusion/exclusion criteria specified, studies chosen relevant to research question[2], 2+ reviewers.
4+methods = 2 2 or 3 = 1 0 or 1 = 0
2 0 1 0 1 1 1
Critical appraisal of studies
Data extraction categories relevant to research question, studies graded (or grading explicitly rejected)*.
both = 2 only one = 1 implicit = 0
2 0 1 0 0 2 2
Synthesis of data and presentation of findings
Table of included studies, discussion of methodological quality of studies, rigorous qualitative overview or meta-analysis (rigorous or rejected), limitations, implications for health care, implications for research.
4+ components = 2 2 or 3 = 1 0 or 1 = 0
2 0 2 1 1 2 2
Total Score 9 4 7 4 5 7 8
*As the grading of qualitative studies is controversial [43,44], an explicit rejection of grading, with justification, was accepted.
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that the preferred place of death for people from the Chinese community was dependent on multiple factors, including the quality of housing and the length of time spent in housing, and that services could be acceptable when well-established and understood by members of the Chinese community [24]. In contrast, Walshe et al. [31] emphasised that different ethnic groups could have different perceptions of hospice care by highlighting a study in which ‘those of Chinese origin living in the UK’ were said to perceive hospice care negatively [31]. Above all, the need for discussion and choice regarding place of death was identified as a priority by members of minority ethnic groups [30]. Awareness and communication Lack of information in an appropriate format, negative perceptions and low awareness of services were identi- fied as barriers to service use [19,25,28]. Problems per- sisted once services had been accessed; poor communication between patients and their families and healthcare professionals was an issue repeatedly empha- sised [20-22,25,26,28,48]. Four reviews emphasised the importance of good communication above all other fac- tors [19,22,26]. Specific problems included: a lack of information provided in appropriate languages and for- mats [19,25,28]; inadequate interpreting and advocacy provision [19,25,28]; differences in social taboos about death and illness [22,25,28]; and, difficulties in under- standing and communicating both verbally and non- verbally [22,49]. Due to limited resources, family mem- bers were used to interpret information of a sensitive or unsuitable nature, increasing the risk of non-disclosure [25]. Jones [20], however, called for understanding in regard to disclosure and involvement of family members in decision-making. Furthermore, Payne et al. [24] found that most Chinese patients viewed family mem- bers as having an important collaborative role in EoL decision-making. The communication of patients’ wishes through advance care planning was discussed just twice in the reviews. Payne et al. [24] found that Chinese patients were more likely to prefer life sustaining treatments and less likely to desire euthanasia. Similarly, Cox et al. [22] emphasised the effects of cultural background on deci- sion-making. Cultural competency Negative perceptions towards services were considered significant impediments to increased utilisation, and some services were identified as culturally insensitive [48]. A common recommendation was the need for training in care that is sensitive to cultural difference [23-25,28,29,48]. Only one review, however, explicitly defined the terms used for such care (’cultural compe- tence’ and ‘cultural safety’) [25]. In contrast to the fre- quent recognition that services need to provide
culturally competent care, few reviews provided recom- mendations about how to achieve this. Only one review highlighted the large numbers of minority ethnic staff working in the healthcare services [29]. Cultural differ- ences were said to lead to uncertainty, even when staff were trained in ‘cultural competency’ issues [29]. Concerns were raised about deterministic links between cultural, ethnic or religious factors and EoL preferences (an approach referred to as the ‘cookbook’ approach) [20] and the stereotyping of patients was warned against [19,20]. Jones [20] stated that the major- ity of literature regarding healthcare and minority ethnic groups merely presents information about religious rituals and beliefs. Whereas, Payne et al. [24], in an exploration of Chinese cultural perspectives on EoL care, found that there was little evidence to support Chi- nese stereotypes. These concerns led authors to empha- size that meeting ‘cultural’ needs is only part of meeting patients’ individual needs [19,20,24,28,30]. In contrast, Cox et al. [22] stated that becoming ‘aware’ of attitudes, values, beliefs and cultural norms can improve minority ethnic groups’ involvement in decision-making. The importance of monitoring service users’ ethnicity was frequently stressed [20,23,25,29-31]. However, data was said to be inadequately collected and rarely used to influence service provision [25,29].
Recommendations for service improvement A number of recommendations were made in the reviews for improving EoL care services for minority ethnic groups (table 4).
Discussion The literature reviews concerning minority ethnic groups and EoL care in the UK described a range of social, institutional, epidemiological and cultural reasons for low service use and identified some distinct EoL pre- ferences and needs. In light of this evidence, in order to improve the use of, and satisfaction with, palliative care services by such groups, it is necessary to recognise the complexity of factors leading to low service use and sub-standard provision of care and implement a sys- tematic, organisation wide, approach to tackling these multiple and inter-related factors. The influence of these multiple and inter-related factors was reflected in the reviews’ recommendations for service improvement (table 4). Of the thirteen reviews identified, seven took a sys- tematic approach [19-24,31], and four scored highly for methodological quality [19,21,23,50]. These reviews pro- vide a good reflection of the evidence base and could be used to inform policy. Six reviews did not provide suffi- cient information for their quality to be graded, includ- ing the End-of-Life Care Strategy: Equality Impact
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Assessment [30]. The aim of this document was to ensure that the UK End-of-Life Care Strategy [37] ‘does not inadvertently create inequality’, but referenced just seven articles concerning ‘race’ and ‘religion’. Due to the relatively small number of articles included in the End-of-Life Care Strategy: Equality Impact Assessment [30], the themes and recommendations identified from the literature reviews were compared
and contrasted with those of the End-of-Life Care Strat- egy [37]. The recommendations regarding minority ethnic groups made within the Strategy (table 5) were more limited than those made within the reviews (table 4), and omitted a number of recommendations made in its own Equality Impact Assessment [30] (table 4). The recommendations focused on problems that arise during the physician-patient encounter (such as issues regard- ing communication and awareness of different EoL pre- ferences) or raising awareness of services amongst minority ethnic groups (table 5). Although inequalities in service provision due to geo- graphical factors or disease group were addressed in the Strategy, their contribution to low service use by minor- ity ethnic groups was not recognised. In addition, a lack of timely referrals for members of minority ethnic groups was not mentioned. No mention was made to minority ethnic groups in the Strategy’s sections on ‘place of death’, ‘core princi- ples and competencies’, ‘education, training and contin- ued development’, ‘improving the environment’, ‘prisons and secure units’ (even though one third of prisoners come from minority ethnic groups [51]) and ‘future research’. The need for ‘spiritual, religious and cultural care competences’ to be ‘adopted within all core training’ was highlighted, however, these needs were not repeated in the Strategy’s sections regarding ‘core principles and competencies’ and ‘education, training and continued development’. In addition, the Strategy took an apparent ‘cookbook’ approach regarding organ donation, provid- ing the link to a website on ‘the perspectives on organ donation of the six major religions in the UK’ [37], an approach criticised within the reviews. In both the End-of-Life Care Strategy [37] and the End-of-Life Care Strategy: Equality Impact Assessment [30] the terms used to describe people from minority ethnic groups were questionable. A case study which described an ‘engagement project’ referred to the
Table 5 Recommendations for service improvement from the End-of-Life Care Strategy [37] ○ Commitment to equal access to services ○ Recognition of distinct preferences regarding: the chaplaincy service; support needs of carers and families; organ donation; care and disposal of the corpse; and, bereavement care ○ The holistic assessment of needs, includes spiritual and cultural needs ○ Awareness raising about death and dying in ‘religious organisations such as churches, mosques, synagogues’ ○ The need for interpretation services ○ The need for the ethnicity and religion monitoring ○ The need for ‘spiritual, religious and cultural care competences’ to be ‘adopted within all core training’
Table 4 Recommendations for improving services made in the reviews
○ Strategic planning of services to ensure equity of provision [27,28] ○ End-of-life care provision for non-malignant diseases [21,25] ○ Training regarding services and the referrals pathway for physicians who are not palliative care or cancer specialists [21,26-28] ○ Recruitment of staff from minority ethnic groups and the implementation of equal opportunity policies [21,25,29] ○ Provision of interpretation and advocacy services [25-28,30]* ○ Training of interpreters and advocates in EoL care issues [25] ○ Awareness raising of services among minority ethnic groups using appropriate methods [21,28,30]* ○ Provision of information concerning services in appropriate languages and formats [25-28] ○ Discussion of place of death preferences [25,30]* ○ Understanding that a preference for home care should not be assumed and that all options must be explained [29] ○ Support for carers [25] ○ Understanding of the EoL care needs in care homes [28,29] ○ Attendance of religious and spiritual needs, preferably by a multi-faith chaplaincy service [25] ○ The provision of space and time for religious practices to be carried out [30]* ○ The provision of special dietary requirements on a case by case basis [25] ○ Make care homes and hospices more welcoming [29,30]* ○ Involvement of minority ethnic groups in the planning of services and outreach [23,25,28] ○ Recognition that categorising people by ethnicity alone can lead to stereotyping [20,24,30]* ○ Recognition that cultural needs form only one part of an individual’s EoL needs [19,20,24,28,30]* ○ Sensitivity regarding the involvement of patients’ families in decision- making and disclosure [19,20,22,25] ○ Training in care that is sensitive to cultural difference [23-25,28,29,48] ○ Training in: communication issues (verbal and non-verbal) [19,24-26]; the use of interpreters [25]; awareness of the multiple disadvantages faced by minority ethnic groups [20,24,28]; information concerning ‘attitudes, values, beliefs and norms’ of minority ethnic groups [22]; and, countering the belief that services are unsuitable for minority ethnic groups [21,23] ○ Training at under-graduate and post-graduate level [25] and to both generalists and specialists [27] ○ Extra funding for training, interpretation and awareness raising [28] ○ Rigorous ethnic monitoring of service users and services reviewed using data [20,23,25,26,29,30]* ○ Tackling of racism[19,23,25,28]
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Saunders Institute, King’s College London, Bessemer Road, London SE5 9PJ, UK. 3 Centre for Global Health and Inequality, University of Amsterdam, O.Z. Achterburgwal 185, 1012DK, Amsterdam, the Netherlands.
Authors’ contributions NE designed the search strategy, screened articles, carried out data extraction, graded papers, participated in team meetings in which grading of papers was discussed, analysed results and drafted the manuscript. AM participated in team meetings in which grading of papers was discussed and helped to draft the manuscript. EA participated in team meetings in which grading of papers was discussed and helped to draft the manuscript. JK provided help with the search strategy and helped to draft the manuscript. RH participated in its design and coordination of the project and helped to draft the manuscript. IH participated in its design and coordination of the project and helped to draft the manuscript. RP participated in its design and coordination of the project and helped to draft the manuscript. MG screened articles, carried out data extraction, graded papers, analysed findings, participated in team meetings in which grading of papers was discussed, conceived the project and helped to draft the manuscript. All authors read and approved the final manuscript.
Competing interests The authors declare that they have no competing interests.
Received: 1 March 2011 Accepted: 2 June 2011 Published: 2 June 2011
References
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Pre-publication history The pre-publication history for this paper can be accessed here: http://www.biomedcentral.com/1472-6963/11/141/prepub
doi:10.1186/1472-6963-11- Cite this article as: Evans et al.: Appraisal of literature reviews on end- of-life care for minority ethnic groups in the UK and a critical comparison with policy recommendations from the UK end-of-life care strategy. BMC Health Services Research 2011 11 :141. Submit your next manuscript to BioMed Central and take full advantage of:
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