THOSE with terminal illnesses deserve better, says Susan Lowes
If you are living with a terminal illness and are from a black, Asian or minority ethnic (BAME) community, why is it that you don’t always get the care you need? And if you do, why is it not necessarily sensitive to your needs?
Everyone who needs palliative care must have the option to receive it at the right time and in a way that is meaningful to them. Sadly we know there are nearly 11,000 people in Scotland every year who don’t get that chance. However, we don’t have a complete picture of palliative care across the country. Nor do we have robust data on access to, and quality and consistency of, care across BAME communities. Healthcare providers do not routinely monitor who receives specialist palliative care services. Hospital standardised mortality ratios do not include data by ethnicity, nor does the end of life indicator in Scotland.
Marie Curie has explored this topic in a new report, Understanding and Improving Palliative Care for BAME Groups in Scotland. Much of the existing research literature on the subject is from the United States, and is based on small qualitative samples which make it difficult to complete a picture that reflects Scotland.
But the limited evidence we do have shows that there are a range of barriers for BAME communities accessing palliative care. These include lack of cultural and religious sensitivity in how services are delivered, lack of translation resources, lack of advocates, problems with using family and friends as translators, low numbers of minority doctors and low availability of professional training in cultural awareness. Also, few research studies have explored how people at the end of life, and their carers, define their own cultural needs.
This can all lead to poor care for people from BAME backgrounds, unmet cultural and religious needs and uncertainty and stress created for professionals. Proposals for addressing these barriers are also not always evidence-based. We need more research, particularly at a local level, which will help to inform evidence-based solutions to delivering appropriate care for people from BAME communities living with terminal illnesses.
The BAME population in the UK is generally younger than the White British population. Around 54 per cent of people who access specialist palliative care are in the 65 to 85 age bracket, which means that there are fewer people from BAME communities. That, coupled with differences in disease risks of minority ethnic groups, means they are currently less likely to receive palliative care.
Historically there has been a perception that palliative care services are primarily for people with cancer, as reflected in rates of access. As a result, those with terminal cancer are much more likely to get palliative care than those with other terminal conditions. We know that minority ethnic groups tend to have lower rates of cancer and higher rates of coronary heart disease, cardiovascular disease and diabetes than the overall Scottish population.
There is an ongoing challenge to ensure that people from BAME communities can access the person-centred palliative and end of life care that they need. As the younger BAME generations start to age, the numbers and proportions of people from BAME groups requiring palliative care in the future will also rise.
The Scottish Government is currently developing a new strategic framework for action on palliative and end of life care. We hope it will set out a clear plan to build a robust evidence base by collecting and analysing data to inform a population level assessment of unmet need for palliative care services.
We hope this will take a range of factors into account, including equity of access and provision of care for people from BAME communities.
• Susan Lowes is Marie Curie policy and public affairs manager, Scotland. Read the new report at: www.mariecurie.org.uk/policy