Planning ahead for the end of life with the South Asian community

Here's the shared example

A new report, Tea, Talk and Samosas, details findings and recommendations from a pioneering project aimed at engaging South Asian communities in planning ahead for their future care and treatment. The project was part of Compassion in Dying’s ambitious, two-year My Life, My Decision programme, 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, and the death that’s right for them.

The report is the culmination of a project working with a group of older South Asian women in Great Harwood, in partnership with Age UK Lancashire. The project aimed to inform the women, all of whom were Muslim and the majority unable to read or write in English, about their rights to plan ahead for their future care and treatment and the benefits of doing so, and to develop new culturally appropriate approaches and resources in order to engage these and other Black, Asian and Minority Ethnic (BAME) and faith groups in Advance Care Planning.

“We thought we had to obey orders, 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.” - participant

The report sets out key recommendations for health and social care providers and other organisations working with South Asian communities, in order to better engage individuals and groups in planning ahead for their end-of-life care and treatment. The recommendations include a need for:

  • Better awareness of religious and cultural beliefs
  • Clearer communication between healthcare professionals and communities about organ donation and post-mortem examinations
  • Greater access to interpreters in healthcare settings and written information in a range of languages
  • Focusing on visual methods of communicating and recording information
  • Acknowledging that different Advance Care Planning tools will be appropriate for different people and groups

 

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 than the wider population.

This hugely rewarding project provided us with rich insights into the values held and barriers faced by South Asian communities in terms of end-of-life care and treatment. We hope that our recommendations go some way to demonstrate what needs to be done to ensure that people from these and other BAME and faith groups are able to engage in Advance Care Planning so that they receive the end-of-life care that’s right for them.                         

 -Stacey Halls, My Life, My Decision programme manager at Compassion in Dying

 

Population groups: 
Older people
People from black and minority ethnic (BME) backgrounds
People nearing the end of life
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