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Living and Dying in society

Ethnicity and Culture

Palliative Care for Black, Asian and Minority Ethnic Communities in the UK

Download report (PDF, 1.95MB)

Overall, life expectancy is increasing in European and other developed countries, with more people living beyond 65 years of age. As part of population ageing, the pattern of diseases people suffer and die from is also changing.

Given that many societies are now multicultural in nature, health and social care professions, regardless of setting, now require a different set of skills and knowledge to be able to ensure both equity and quality of health care provision for all. This situation is further amplified by growing numbers of older people from minority ethnic groups living in developed countries which will continue to increase in coming years.

How we understand the influence of diversity in patterns of advanced disease, illness experiences, responses to treatment, and the use of specialist palliative care services is critical given increasing evidence that we are not all equal in death, dying and during bereavement. 

Race or ethnic-based disparities in mortality and in diagnosis, quality of care, referral patterns to specialist palliative care, and treatments for pain and other physical symptoms have been documented in many developed countries.

Our growing programme of work on the relationship between ethnicity and culture has focused on macro issues examining the interface between ethnicity and policy; PRISMA included a detailed work package that examined the influence of culture on end of life care with a focus on palliative care policy and cultural competence [1] [2].

The recently commissioned report funded by Marie Curie Cancer Care and Public Health England: Palliative and End of Life Care for Black, Asian and Minority Ethnic Communities in the UK (PDF, 1.95MB) examined ONS vital statistics in relation to ethnicity and discussed  the implications of the growing number of older people and the oldest old among BAME communities living in the UK.

Our work has also focused specifically on the patient and carer-centred experience of living with, and dying from, advanced disease. In this area of research we have explored and compared the experiences of advanced cancer among the Black Caribbean and white British communities living in south London [3] [4] [5] [6] [7] [8] [9] [10].

Funded by the Multiple Sclerosis Society, we have progressed this theme of research to examine, for the first time, the person-centred experiences including MS disease progression, symptoms and psychosocial concerns [11], costs and impact of caring for people from the Black Caribbean and White British communities living with severe multiple sclerosis. The implications of this research draw into question knowledge, attitudes and skills to deliver culturally relativist care, promotes the value of diversity as a core principle and insists that all cultural groups be treated with respect as equals. 

Reference List

  1. Evans N, Meñaca A, Andrew EVW, Koffman J, Harding R, Higginson IJ, Pool R, Gysels M (2011) 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 141.
  2. Evans N, Menaca AKJ, Harding R, Higginson IJ, Pool R, Gysels M (2012) Cultural competence in end-of-life care: terms, definitions, and conceptual models from the British literature. Journal of Palliative Medicine 15: 812-820.
  3. Koffman J, Higginson IJ (2001) Accounts of carers' satisfaction with health care at the end of life: a comparison of first generation black Caribbeans and white patients with advanced disease. Palliative Medicine 15: 337-345.
  4. Koffman J, Higginson IJ, Donaldson N (2003) Symptom severity in advanced cancer, assessed in two ethnic groups by interviews with bereaved family members and friends. Journal of the Royal Society of Medicine 96: 10-16.
  5. Koffman J, Higginson IJ (2004) Dying to be home? A comparison of preferred place of death of first generation black Caribbean and native-born white patients in the United Kingdom. Journal of Palliative Medicine 7: 628-636.
  6. Koffman J, Donaldson N, Hotopf M, Higginson IJ (2005) Does ethnicity matter? Bereavement outcomes in two ethnic groups living in the United Kingdom. Palliative and Supportive Care 3: 183-190.
  7. Koffman J, Morgan M, Edmonds P, Speck P, Higginson IJ (2008) Cultural meanings of pain: a qualitative study of Black Caribbean and White British patients with advanced cancer. Palliative Medicine 22: 350-359.
  8. Koffman J, Morgan M, Edmonds P, Speck P, Higginson IJ (2008) "I know he controls cancer": The meanings of religion among Black Caribbean and White British patients with advanced cancer. Social Science & Medicine 67: 780-789.
  9. Koffman J, Morgan M, Edmonds P, Speck P, Higginson IJ (2011) 'The greatest thing in the world is the family': the meaning of social support among Black Caribbean and White British patients living with advanced cancer. Psycho-Oncology 2011 Jan 23. doi: 10.1002/pon.1912: 4-400.
  10. Koffman J, Morgan M, Edmonds P, Speck P, Seigert R, Higginson IJ (2012) Meanings of happiness among two ethnic groups living with advanced cancer in south London: a qualitative study. Psycho-Oncology 22: 1096-1103.
  11. Koffman J, Wei G, Goddard C, Burman R, Jackson D, Shaw P, Barnes F, Silber E, Higginson IJ (2013) Progression, symptoms and psychosocial concerns among those severely affected by multiple sclerosis: a mixed-methods cross-sectional study of Black Caribbean and White British people. PLOS ONE .
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