How better communication can improve inequity in end of life care provision for BAME communities

by Shameem Nawaz
Community Development Officer

Shameem Nawaz, Community Development OfficerRecent research by the London School of Economics, commissioned by Marie Curie, highlights important issues about how people from Black, Asian and Minority Ethnic (BAME) communities rated care at the end of life.

I have been leading a project at the Marie Curie Hospice, Cardiff and the Vale, supported by the Big Lottery Fund, which seeks to improve access to palliative care service for BAME communities. We found that the overwhelming reason people from BAME backgrounds don’t use services, including palliative care services, is lack of knowledge. Quite simply, they don’t know about services and, as a result, they don’t get them.

So we know that communication is key. But how we communicate is also very important. We talked to over 130 people from BAME communities in Cardiff and the Vale. Many told us that they had the sense that the services were ‘not for me’. This tells us that, when sharing information about our services, we need to think very carefully about the words we use and the images we choose.

And there are other important issues to consider. The people we talked to also expressed anxiety that services will not be able to meet their religious, dietary and cultural needs. These things are hugely significant in people’s day-to-day lives. So, for example, if religion plays a significant role in your life, it is important that the care and support you get respects this. This is especially true for somewhere like a hospice where people may be staying overnight.

The same is true for food. If people are not absolutely certain that they can continue to eat in the way that is important to them, then they may miss out on the quality of care we know hospices provide.

Moving towards better communication

We have commissioned a DVD that showcases our Cardiff and Vale hospice and its services. It will be available in six different languages and have subtitles. We’ve used diverse images that people can relate to.  We’ve been careful to respect people’s culture by reassuring BAME communities that we are not ‘taking over’ the responsibility of care for loved ones but are helping them to help their family member.

It is essential that all involved in providing care and support for people living with a terminal illness and their families look hard at how they ensure there are no barriers to this care and support.  It is a very important part of the conversation we must have about terminal illness. We have come a long way through the project I lead but we all know there is a long way to go.

If you would like to have your say, take a look at our campaign page to see how Marie Curie is changing the conversation to ensure that if you have a terminal illness you get the same quality and ease of access to care, regardless of who you are, where you live or what your illness is.