Service provision for BME cancer patients: responding to needs, desires, and aspirations Professor Gurch Randhawa Director, Institute for Health Research

Evidence to date: Current provision of end-of-life care services to minority ethnic groups may be regarded as ‘culturally insensitive’ for the following reasons: History and perception of palliative care services as only being available to white, middle-class patients Reluctance of GPs and other health care professionals to refer patients to palliative care services. Lack of information provided to minority ethnic groups about the availability of palliative care services. Poor communication between service providers and service users exacerbated by a lack of appropriate translation facilities.

Evidence to date: Current provision of end-of-life care services to minority ethnic groups may be regarded as ‘culturally insensitive’ for the following reasons: Services are not always attuned to the dietary needs of minority ethnic groups Services are not always attuned to the spiritual needs of minority ethnic groups Problems are compounded by other socio-economic factors (e.g. low income and debt) Lack of monitoring of the use of palliative care services by minority ethnic groups Lack of organisational policy on issues such as Single Equality schemes

Literature review findings: Culturally safe practice in palliative care (after Oliviere 1999) be aware of taboos and discrimination be aware of relevant legislation be aware and careful about making assumptions get to know the patient discover the patient’s situation within their own culture communication skills are invaluable do not use relatives as interpreters be sensitive but not over sensitive

Literature review findings: Culturally safe practice in palliative care (after Oliviere 1999) recognise that attitudes to illness vary from culture to culture recognise that grief varies from culture to culture do not stereotype balance equality with difference recognise complexity and multiple causation of cultural patterns keep good records have an ethnically diverse staff provide a suitable environment/hospitality for minority ethnic groups

Literature review findings: Culturally safe practice in palliative care (after Oliviere 1999) provide appropriate literature have a knowledge of different faiths and religious practices get to know local religious leaders of different faiths provide regular staff training meet with ethnic groups be aware of national organisations related to minority ethnic groups keep a multi-faith calendar train bereavement counsellors in non-western models

Service provider interviews - Understanding current practice: views from service providers -Interviews with a range of service providers including those who work in community, hospital and hospice settings; paid and voluntary workers. -Open ended discussions, but based centred on issues raised in study of literature

Service provider interviews - findings -As one respondent put it: ‘it’s just so difficult to do our job... and provide a service’. -The distinction here between the service provider doing her ‘job’ and ‘providing a service’ is perhaps telling. The inability to provide the personal and emotional commitment seen as intrinsic to the job undermines the more professional notion of providing a service.

Service provider interviews - findings Some respondents, questioned whether it was possible to deliver a ‘culturally competent’ version of existing palliative care services to terminally ill South Asian populations: Mm. I have strong feelings about that actually; quite strong. That we’ve got to make sure that we’re not trying to make a Westernised service for a culture that actually, you know, doesn’t need to deal with some of the things that we feel are important. For this respondent, meeting the needs of minority ethnic patients meant questioning the whole philosophy of palliative care in order to assess its cultural transferability.

Service provider interviews - findings And so I sort of, you know, it does go through my mind, you know, “oh this is strange, why are you expressing yourself like that”? Although that’s what I see at work all the time, it’s still different to my culture and although I can try to, sort of, empathise with them, it’s different from my culture; they’re very different.’ This comment suggests a degree of ambiguity about the extent to which the responded felt competent enough to care for the patient, again hinting at a sense of helplessness in being able to make the personal and emotional investment seen as being at the heart of palliative care.

Service provider interviews - findings ‘I think it’s a very big culture thing, you know, the Asian families have a lot of family around them for a support network.’ This perception of South Asian families ‘looking after their own’ has been forcefully challenged in the literature. It is suggested that such a view is not only an out of date stereotype, it also fails to appreciate the variety of kinship and household structures that exist within South Asian communities. Nevertheless, the importance of this family care was highlighted in virtually all of the interviews and was frequently seen as a admirable feature of South Asian ethnicity: ‘And I think this is such a positive thing that the family are there for those people and the support given within the family network is exceptional, yes it is, very good.’

Service provider interviews - findings Discussing an elderly female patient, one interviewee suggested that communication through family members was a cultural practice that needed to be incorporated into culturally competent care, rather than outlawed. She explained: ‘And to be honest this is how the grandmother has been brought up, not just on nursing issues, but that is how she’s got through her life actually being supported by her children and grandchildren.’

Conclusions -Many areas of success and good practice -Devoted, hard-working staff -Encourage further support for staff both informal (through colleagues) and formal (training and resources) -Communication: develop ways of improving communication (more widespread use of link workers and interpreters?) -Examine ways of raising profile of palliative care services among South Asian populations (importance of word of mouth; GPs' role; potential for liaison worker) -Don't characterise South Asian populations as a 'problem' and recognise that palliative care has a flexible capacity for balancing common requirements with tailored individual needs

References Randhawa G (2008) Organ donation and transplantation – The realities for minority ethnic groups in the UK. In: W. Weimar, M.A. Bos, J.J. van Busschbach (Eds): Organ Transplantation: Ethical, Legal and Psychosocial Aspects. Towards a Common European Policy. Pabst Publishers. Owens A. & Randhawa G (2004) “It’s different from my culture; they’re very different”: providing community based ‘culturally competent’ palliative care for South Asian people in the UK. Journal of Health and Social Care in the Community, 12, Randhawa G. & Owens A. (2004) Palliative care for minority ethnic groups. European Journal of Palliative Care. 11, Randhawa G, Owens A, Fitches R, and Khan Z. (2003) The role of communication In developing culturally competent palliative care services In the UK: a Luton case study. International Journal of Palliative Nursing. 9,