P-46 ‘tell us there is no cure’ – bame communities seek clear communication to prepare for dying

Abstract

Background Black, Asian and Minority Ethnic (BAME) groups have less access to palliative care due to deficient knowledge and awareness, culturally inappropriate services, communication barriers and more (Evans et al., 2011; Koffman, 2014; Calanzani et al., 2013; Smith et al., 2015). To support person-centred care (The Health Foundation, 2014) and to exchange skills and knowledge, a group of palliative care providers, charities and voluntary organisations, minority ethnic groups and academic researchers formed a Learning Alliance (LA). The LA attained funding from Health Education England to organise a consultation event with BAME groups and healthcare service providers, in order to examine and improve the existing palliative care services. Aims Enhancing awareness of palliative care services. Improve understanding of how to engage with BAME groups at end of life. Methods The consultation event introduced palliative care services to BAME groups, followed by group discussions exploring barriers of assessing the service, challenges in coping in the last year of life for a family member and understanding how best to communicate with local communities. The discussion summary was then relayed to healthcare service providers to improve service development for BAME communities. Results 82 people attended, including representatives from religious and faith groups, carer support and commissioning groups. BAME communities gave some clear messages: • ‘Tell us there is no cure, so we can work on life we have left and prepare for death.’ • Use every means possible, radio, social media, events and posters, to continuously promote awareness. • Use of confusing or misleading language to avoid the pain and reality of dying denies the opportunity to prepare for death. Conclusion Service providers should utilise a wide range of media to explain available healthcare services but communication about end of life and palliative care needs to be simplified for minority groups. The LA was compelled to facilitate further outreach work with ethnic groups, to improve the quality of care and address unmet needs.