Need to improve end of life care for ethnic minority groups

26th Jul 2013

By Rachel Kayani

A recent report has highlighted that the end of life care, or palliative care, given to people from different ethnic minority groups is varied, and despite examples of good practice, are not in many cases adequately met.

Given that Black, Asian and Minority ethnic groups (BAME) aged 65 and over, are expected to triple over the next 25 years, there is a growing need to assess why end of life care varies between different communities. The report aimed to examine why uptake of end of life care is low in some ethnic groups and identify potential obstacles that could affect a patient’s ability to receive the best palliative care.

There is growing evidence that ethnic and cultural differences can influence patterns of advanced disease, illness experiences, health care seeking behaviour and the use of health care services. Although much has been done to identify and improve these variations in healthcare, differences still exist in the quality of care that people from different ethnic groups receive and the same is also true of end of life care.

The report (Palliative and End of Life Care for Black, Asian and Minority Ethnic  Communities in the UK) was commissioned by the Marie Curie Cancer Care and Public Health England from the Cicely Saunders Institute at King’s College London. They conducted a systematic review to identify the unmet needs of BAME groups in the UK and access to palliative care.

The review found that several factors were affecting the uptake of palliative care for people from different ethnic minority backgrounds. Problems identified by the study included: a lack of knowledge about services, poor communication between healthcare providers and the patient or patient’s family, poor communication about what services were available, misunderstandings and mistrust – often due to previous experiences of discrimination, and a lack of sensitivity to cultural and religious differences on the part of the service providers.

Thus communication issues and cultural awareness were the main reasons for the low up take of palliative care by certain ethnic groups. The report authors say these issues can in part be addressed by improving communication with the patient and their family.

The number of people aged over 65 from Black, Asian and Minority groups is predicted to grow over the next few decades, and is expected to reach over 1.3 million by 2026 (compared to just over half a million in 2001). As the population ages there is a growing need to ensure that access to palliative care is available to all and that any social or cultural reasons for low up take of care are addressed.

While the report acknowledges that better training is needed for health and social care professionals to enable them to provide appropriate care to diverse ethnic 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.

Dr Jonathan Koffman, report author from King’s College London, said: “Our study highlights some of the issues people from BAME groups and their families face during advanced disease and the end of life that prevent them from accessing vital services which can significantly improve the quality of their lives.

“Issues such as lack of knowledge about what is on offer and mistrust of services due to previous experiences may contribute to low uptake of specialist palliative care. These issues need to be examined locally and changed where relevant.

“Service providers should take into account the issues raised by this report and review how well their palliative care services are meeting the needs of the community.”

Dr Ian Gittens, Diversity Project Manager, Marie Curie Cancer Care said: “With progress now being made in ensuring access to care is not influenced only by a person’s clinical diagnosis, our attention now needs to recognise that ethnic, cultural and other differences can impact on all aspects of health and the uptake of healthcare.”




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