Exploring the barriers to palliative and end of life care for BAME groups in Scotland

Marie Curie terminal illness

Black, Asian and minority ethnic groups (BAME) are underrepresented among those using palliative care services in Scotland according to our new report, Palliative and end of life care for Black, Asian and Minority Ethnic Groups in Scotland – Exploring the Barriers  .

Many people who are coming to end of their lives do not get the care that they need. People from different ethnic groups have very different experiences accessing care. Our report highlights the barriers that can stop people from different ethnic groups accessing the end of life care. In Scotland, the ethnic minority population is projected to increase. We need to ensure that the needs of these communities are being met, and continue to be met.

Providing appropriate care

We need to make sure that delivering responsive and culturally appropriate palliative care is at the forefront of health and social care delivery.

We know that people with terminal conditions other than terminal cancer are less likely to access palliative care. People from BAME communities are more likely to have conditions other than cancer, such as heart disease, and so are even less likely to access palliative care as a result.

More needs to be done to improve access to palliative care so that people with all terminal conditions are able to access palliative care. As part of this work, reviewing the specific needs of BAME communities should also be examined.

However, the barriers aren’t only structural. Cultural barriers also prevent BAME communities from receiving appropriate palliative care. Studies suggest that BAME groups themselves are reluctant to refer or be referred for palliative care. This can arise from misunderstandings or cultural and religious issues. It is important to explore how we can tackle these issues if we are to ensure people are getting the care that they need.

A lack of routine and robust information is also a problem. Healthcare providers do not routinely monitor who receives specialist palliative care services. Hospital Standardised Mortality Ratios do not include data by ethnicity. The end of life indicator in Scotland also fails to include information on ethnicity. This makes it very difficult to truly understand the picture of care for BAME communities.

Moving forward

Everyone, regardless of background, community or disease, should be able to access the palliative care they need from the time they need it. The Scottish Government is currently developing a new Strategic Framework for Action for Palliative and End of Life Care  , which it is due to publish before the end of the year. This is a perfect opportunity to ensure that the needs of those from BAME communities are examined and measures to address barriers put in place.