A South Asian community’s experiences of Advance Care Planning
A joint blog from the Subco Trust and Compassion in Dying.
Guest post
Today Compassion in Dying and Subco Trust are launching a video in South Asian Community languages on people’s experiences of advance care planning and why it matters to them [link].
We made the film because:
Subco members said that recording their health and care wishes is important to them and they would like to be able to share what doing this means with their family and friends, and
People told us they use WhatsApp most often to communicate important information and therefore short videos in community languages were far preferable to written information.
Our new film directly responds to this.
Understanding barriers to accessing health information
Compassion in Dying and Subco Trust have had a longstanding partnership since 2016. Over that time, Subco members have shared their experiences of end-of-life care and making decisions about their health.
Subco members speak a range of South Asian languages such as Bengali, Hindi, Gujarati, Urdu and Punjabi, with English as a second or third language. Many people find reading in English difficult or not possible.
People also say repeatedly that they prefer to listen to or watch information rather than absorb it through reading. This is because they are more in control as they do not have to rely on others to read and translate the text for them.
Members say that often, they do not understand the information they are given in health appointments, and in turn this means they cannot make informed decisions about their treatment and care. They tell us that not having access to accessible information means they are unlikely to ask questions or articulate what matters to them unless prompted.
Importantly, people are very unused to feeling like they have a ‘choice’ in health matters because getting basic information or support that is accessible and in their language is such a struggle.
People want a say in decisions about treatment and care towards the end of life
Subco members have shared how recording what matters to them at the end of life in the context of their own cultural and religious beliefs is important. Subco Trust supports a diverse group of elders from South Asian communities and this diversity is continually reflected in what people tell us about their views and preferences.
While some people express a wish to have all available treatment towards the end of their life, others share fears about their dignity. Some people are worried about being cared for outside of their own home, while others wish only to be cared for in a hospital or hospice.
I would like to be cared for by people who are culturally understanding.
Subco member
Members tell us that they want to share and celebrate aspects of their faith and culture with others and find communicating this through advance care planning both relevant and valuable.
It is really important to me that I have Halal food and that I am helped to stay clean and pray 5 times a day.
Subco member
Many members have shared concerns that professionals caring for them don’t know about their care preferences, including those in relation to food, faith and family involvement.
A new community video
The new community video we are publishing today addresses some of the challenges people told us about, by providing information in community languages on the different ways people can record and share their treatment and care preferences.
I don’t know how to find information on the internet. Doctors say to go online but I don’t know how to. Children don’t have time to do this because they are so busy with their lives. Short videos in my language (Urdu or Punjabi) would be best.
Subco member
Fundamentally, the video has been created because SubCo members asked for it, so they could share it over mediums such a WhatsApp with their peers, and start a conversation about their end of life wishes with people close to them.
We are deeply grateful to the members of Subco who contributed their expertise, experience, time and energy to create this video.
If this film could be useful for your work or in your networks, please do share it. We’d love to hear from you so do get in touch if you like to talk about this work.
Subco Trust. Based in the London Borough of Newham, Subco works with isolated and housebound elders from diverse South Asian communities in the London Borough of Newham as well as the local community. Our members speak a range of South Asian languages such as Bengali, Hindi, Gujarati, Urdu and Punjabi, with English as a second or third language. In response to the range of support required by our members, we offer advice and advocacy services; ageing well and end-of-life care support; day care provisions; dementia support; intergenerational work and support to carers. We have 30 years of experience developing innovative, culturally and linguistically appropriate services and remain committed to improving the lives of vulnerable Asian elders, their Carers and the local community.
Compassion in Dying is national charity that supports people to make informed choices, start honest conversations about death and dying with loved ones, and record and revisit their wishes whenever they want to. We want people to be in control of their end-of-life decisions because there is no-one better to make them.