A report commissioned by Marie Curie Cancer Care and Public Health England to provide evidence for key stakeholders and policy makers planning future care for Black, Asian and Minority Ethnic (BAME) groups highlights that the care currently being provided is often far from adequate.
The evidence-based report “Palliative and end of life care for Black, Asian and Minority Ethnic groups in the UK” describes the current demographic profile of the BAME populations and reviews the current evidence on palliative and end of life care provided to them. The report raises the question of how care, which is currently reported as inadequate, will meet the needs of even larger numbers of people, including those usually not represented in research.
Data from the 2001 and 2011 Censuses show that England has become more ethnically diverse, with an increase in both numbers and proportions for all BAME groups from 2001 to 2011 (with the exception of White Irish). Although most residents reported their ethnic group as White British in 2011, there was a reduction in both numbers and proportions of people from this group (7.2% reduction in proportion or 467,900 fewer residents).
In 2011, 86.2% of all residents in England (over 45 million people) reported that they were born in the UK. Although the number of residents who were UK born has increased by almost 1.1 million since 2001, there has been a decrease in terms of the proportion of the population (in 2001 the UK-born represented 90.7% of all residents). On the other hand, both numbers and proportions of the foreign born population have increased since 2001, reaching over 7.3 million people (13.8% of the resident population) in 2011 compared to almost 4.6 million in 2001 (or 9.3%). Across England, London had the highest proportion of foreign born residents in 2011 (36.7% or almost 3.0 million) while the North East had the lowest (5.0% or 128,573 people).
Almost 900,000 people in the UK either cannot speak English well or cannot speak it at all. It is likely that there are older people amongst them and evidence shows that there is a dearth of translation services. Examples of best practice are understandably localised in areas with more ethnic diversity. However, this raises questions about whether minority ethnic groups living in less diverse areas would benefit from good practice shown to be working elsewhere. About two-thirds of the population in England reported having a religion, and it is likely that a number of them would have specific requirements at the end of life (which currently are not always met).
Robust and relevant intelligence is critical, particularly as growing evidence suggests that a significant number of people living with advanced disease miss out on palliative care and end of life care. For example, older patients, the poor, and specifically those from BAME communities, are less likely than younger patients, white patients, and more affluent groups to use appropriate specialist services including inpatient hospices. This situation exists in the UK despite palliative care being free at the point of delivery from the NHS and the independent charitable sector.
Potential explanatory factors for the low uptake of palliative and end of life services includes lack of referrals, lack of knowledge about services or about what palliative care involves and religious traditions and family values in conflict with the idea of palliative/hospice care. Other factors include structural barriers such as geographical location of inpatient hospices and social segregation, previous bad experiences when in receipt of care and demographic/epidemiological characteristics of BAME populations.
The Public Health England report recommends that service providers and commissioners recognise the growing need for improved end of life care for BAME communities and that they learn from examples of best practice, some of which are highlighted.
While the report acknowledges that better training is needed for health and social care professionals to enable them to provide appropriate care to BAME groups, it also notes the importance of avoiding assumptions and stereotypes and listening to patients and their families about their needs and preferences at the end of life.
Professor Julia Verne, Clinical Lead for Public Health England’s National End of Life Care Intelligence Network said:
“This report shows that there are examples of excellent practice both in the UK and internationally. We need to learn from these to ensure that end of life care is both equitable and accessible to all.
“This can mean addressing practical issues, such as providing adequate translation services where these are needed, and understanding how quality of care varies from one area to another. For example, the report shows that examples of best practice are localised in areas with more ethnic diversity. We need to ensure that learning from these areas is shared across the UK.
“Above all, we need to listen to what BAME communities need and remember that every individual is different.”
