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Engaging Somali and South Asian communities in end of life planning

The duty of the healthcare professional in emphasising the importance of end of life care planning to 'hard to reach communities' 

Healthcare professionals have a vital role to play in emphasising the importance of end of life care planning to 'hard to reach communities'

Do hard to reach communities exist? Or is more required of us as healthcare professionals to explore creative ways of engaging those who experience significant barriers in accessing health services?

As a registered nurse and trustee of the Compassion in Dying charity, I have an interest in patient choice and end of life care, believing that everyone should receive the care and treatment that is right for them.

Project culmination

To address the inequalities that too many people and communities experience, more needs to be done to understand and overcome the barriers people face when accessing health services.

Compassion in Dyings

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Healthcare professionals have a vital role to play in emphasising the importance of end of life care planning to 'hard to reach communities' 


Community engagement in Tower Hamlets as part of a Compassion in Dying project.
Picture: Tim George

Do ‘hard to reach’ communities exist? Or is more required of us as healthcare professionals to explore creative ways of engaging those who experience significant barriers in accessing health services?

As a registered nurse and trustee of the Compassion in Dying charity, I have an interest in patient choice and end of life care, believing that everyone should receive the care and treatment that is right for them.

Project culmination

To address the inequalities that too many people and communities experience, more needs to be done to understand and overcome the barriers people face when accessing health services.

Compassion in Dying’s 2016 report Tie Your Camel First marks the culmination of a project with a group of older Somali women in Tower Hamlets, London, delivered in partnership with Women’s Health & Family Services (WHFS).

With the support of interpreters, we explored creative ways of engaging the community in understanding the importance of planning. We learned what is important to them at end of life and developed culturally-appropriate resources which could be used in the group, and in further work with other black, Asian and minority ethnic (BAME) groups where English may not be a first language.

Language differences and professionals’ lack of awareness of cultural considerations are the primary barriers to these women accessing the support they need.

We ensured the group’s views, experiences and concerns were listened to and recorded. To demonstrate that the group had been heard, staff produced minutes of the meetings using images that reflected the topics discussed. This approach ensured a two-way dialogue was established from the beginning and helped the women realise their experiences are valued.

Giving a voice

A WHFS community development worker said: 'Many of the women haven’t got family and have nobody to speak for them. Having something written down is useful. They thought the only person who can make a decision is the doctor. They felt they had no choices at all. Now they know they have choices, it has built up their confidence and they have been given a voice.'

A visual advance statement was developed using images to allow individuals to express their own values, preferences and concerns. By the end of the project 78% of the women completed an advance statement with information they would want others to know if they were unable to make decisions themselves.

A group member explained how important the advance statement was to her. She said: ‘I love my book [advance statement]; it’s my history. If I fell ill today or tomorrow and I go to the doctor and I can’t talk, I have my book – my evidence. You give it to them, it’s your story. If a doctor asks: “Who are you?” I can say this is who I am.’

The true success of this project was that a group of women experiencing inequality in the health service were supported to understand their rights to make decisions and document their wishes for care and treatment. As a community who feels listened to by professionals responsible for their care, they have been empowered and are rightfully proud to have helped shape key recommendations to be implemented when working with other BAME groups. 

When delivering person-centred care, we need to think creatively and ensure that often excluded voices are welcomed into the conversation.

References

Compassion in Dying (2016) Tie your camel first: Planning ahead for the end of life with the Somali community.

Compassion in Dying


About the author

Karen Sumpter is a trustee of Compassion in Dying and a senior lecturer for adult nursing at the University of Hertfordshire

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