As part of the My Life, My Decision project, Compassion in Dying have recently been working with a group of around 18 female Somali elders in East London. They are part of an organisation called Women's Health and Family Services (WHFS) who are a multi-cultural community health charity focused on health and empowerment issues for disadvantaged women and their families.
Most of the women in the group came to the UK after the Somali Civil War in the 80's and 90's. Many of them have lost their families but have since formed a warm, supportive network in Tower Hamlets.
The aim of the piece of work was to consult and work alongside the women to develop an effective approach to raising awareness of end-of-life rights that is appropriate for their community, and to inform them and the staff and volunteers from WHFS about the importance of planning ahead for care and treatment.
"We are already at the stage where we cannot communicate our wishes (because we cannot speak fluent English)" - participant
The project ran 9 workshops, supported by three interpreters, to explore a range of themes around death and dying. Many of the participants come from nomadic families and preparing for end-of-life is not something that they are uncomfortable with. Their Grandfathers will have carried their own white shroud around with them as a matter of course. The Hadith "Tie your camel first, and then put your trust in Allah" also resonated with them in the context of the group - they understood the value of being proactive in planning ahead for a good outcome and believe Allah will be by their side to ensure this. However, many of them have felt powerless in a country where they are unable to communicate the complexities of what is important to them, where there is a lack of interpreters, appointments are rushed and there is very little understanding of what a 'good death' means to them:
"In our community the special water we give people is called Zam Zam. We give people that are dying this holy water that is from a well in Mecca. When a person is going through the last stages of death their throat becomes dry. It is important to do that (give Zam Zam) for comfort" - Participant
"...Having a moist mouth means that they are able to say Shahada. This is an Islamic creed declaring belief in the oneness of God and the acceptance of Muhammad as God's prophet. It is like the last testimony. It is the last prayer to allow you to go to paradise. It is very important for all of the Muslim faith to say Shahada before you die. It is an obligation on Muslims, even if you can’t speak you must say it in your head." - Interpreter
Their faith was a thread that ran throughout the sessions. When talking about what was important to them and their lives many of them stated that being able to help others and 'to be kind' was a really important part of this:
“We all look after each other and know about each other’s lives and health”
For the women the concept of next of kin is much wider; if no close family are available there is a duty of care for others in the community:
"They (healthcare professionals in the UK) are able to look after the person but are not familiar with the responsibilities of the family – for example, it is important for the next of kin to close the person’s eyes and mouth just before they die. This is something that the next of kin need to do. If the next of kin do not manage to do this, then it is a ‘defect in their morals’ and leaves them depressed"
Fourteen women have since had a one-to-one session, supported by an interpreter, during which they completed their own personalised Advance Statement. As the majority of the women did not speak English, Compassion in Dying adapted an Advance Statement to provide visual references to the things that are important in their individual lives. These images sat alongside written explanations of their wishes and preferences for care and treatment.
Each woman received their own folder, with their Advance Statement and additional information such as Compassion In Dying’s factsheets which they can give to the people involved in their care. Each woman was also given visual minutes of their discussions to help facilitate conversations around the importance of planning ahead with their loved ones.
Compassion in Dying are very grateful to the group for everything they have taught them and very much hope that their learning will help ensure that more of the women’s community and others who may not have English as a first language, will get the end-of-life care that is right for them and be aware of their legal rights and choices.
"I don’t know if it will be acted on now, but it will at least have been said – for next generations" - Participant
Compassion in Dying run the national lottery-funded My Life, My Decision project, delivered in partnership with seven local Age UKs across England. The project provides 1-2-1 support in the community to older people, helping them set out their wishes for care and treatment, and to complete Advance Care Planning documents. (Compassion in Dying provides template Advance Decision and Advance Statement forms, and offers in-depth support to complete the documents through their Information Line.) The project also raises awareness of people’s rights to plan ahead amongst the public and health and care professionals. This work is delivered by both paid staff and volunteers.