New report explores South Asian communities views on end-of-life care and treatment

The report (Tea, Talk and Samosas: Planning ahead for the end of life with the South Asian community) details findings and recommendations from a pioneering project aimed at engaging the South Asian community in planning ahead for end-of-life care and treatment. 

The project was part of Compassion in Dying’s My Life, My Decision programme, run in partnership with seven local Age UK partners, which aimed to engage people aged over 50 to think about and plan their care in advance, helping to ensure they have the end-of-life care that’s right for them. 

The Tea, Talk and Samosas report is the culmination of a project with a group of older South Asian women living in Great Harwood, Lancashire, working in partnership with Age UK Lancashire. 

The women were all Muslim and most were unable to read or write in English.

The project entailed a series of workshops through which a new approach was developed to raise awareness and discuss the importance of planning ahead and end-of-life rights. 

During the course of the project the women and Compassion in Dying staff worked together to develop a new format of an Advance Statement form, which included key information the women would want to be known by doctors and other care professionals if they became ill in future. 

At the same time, a project with a group of Somali women in East London was taking place, and findings from this were fed into the work with the South Asian women.

The Tea, Talk and Samosas report identifies key findings from the project and sets out recommendations for health and social care providers and other organisations working with South Asian communities, in order to more effectively engage individuals and groups in planning ahead for end-of-life care and treatment.

These include a need to: 

-    Provide written information in English and Urdu: The women initially felt that leaflets were irrelevant to them, but once written information was provided in Urdu, the women responded positively and all agreed that future resources should be provided in Urdu.

-    Share learning from other communities and groups: Linking with the Somali women’s project prompted interesting discussion among the South Asian women and meant that they felt they were part of a national debate about improving end-of-life care for their faith community.

-    Be aware of what language the group prefers to communicate in: Although it was clarified at the beginning of the project that the majority could speak Punjabi and some English, some could not write Punjabi and others were nervous speaking Punjabi in front of the group.  Ensuring that everyone is supported to communicate in the way they feel most comfortable is vital in order to encourage full and frank discussion.

-    Build a social media strategy into the workshops: Using social media helped to create links with other relevant organisations and raise awareness of the work with different stakeholders.

-    Focus on building trust and a safe space for people to talk: Taking time to build relationships and ensure participants are comfortable is essential so that people are able to properly engage with the project.

-    Provide written information on the legal position around post-mortem examinations and organ donation: The group felt they were ill-informed about these practices, which can sometimes interfere with certain Muslim burial rituals. They also felt that there was a lack of awareness of the religious implications among healthcare professionals.

Stacey Halls, My Life, My Decision programme manager at Compassion in Dying said,  “We knew before embarking on this project that people from certain faiths and BAME groups have lower awareness of their rights to plan ahead and more difficulty accessing information about their health and care that the wider population. 

“This hugely rewarding project provided us with rich insights into the values held and barriers faced by the South Asian community. 

"We hope that our recommendations go some way to demonstrate what needs to be done to ensure that people from South Asian and other BAME and faith communities are able to engage in Advance Care Planning so that they receive the end-of-life care that’s right for them.

“The project also allowed us to support a group of women who had no prior awareness of their rights and choices for end-of-life care. 

"As a result of the workshops, most of the women made an Advance Statement and all of them, including the facilitator and interpreter, were clear that they would consider making a Lasting Power of Attorney for Health and Welfare. 

"This would give trusted family members and loved ones legal authority to make decisions about their care and treatment if they were to lose the ability to make or communicate their own decisions in future.” 

One of the women involved in the project explained how the project had changed the women’s understanding of their rights around care and treatment:

“We thought we had to obey orders [from doctors], whatever has been said… Now we are more confident. We know our rights. First we didn’t know we had any options – now we know we have got a say.”

Another woman commented on the value of the workshop approach in thinking about future care preferences, “Working together, we learned about what is important to us and what we would want respected if there came a time when we weren’t able to make decisions for ourselves.”