New report launches today outlining an innovative approach to engaging the Somali community in planning ahead

A new report (Tie Your Camel First: Planning ahead for the end of life with the Somali community) launches today detailing findings and recommendations from a pioneering project aimed at engaging the Somali community in planning ahead for end-of-life care and treatment. The project was part of Compassion in Dying’s 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 will have the end-of-life care that’s right for them.

The Tie Your Camel First report is the culmination of a project with a group of older Somali women living in Tower Hamlets, in partnership with Women’s Health and Family Services. The women were all of Muslim faith and most could not read or write in English. The project entailed a series of workshops which explored what was important to the women and encouraged them to discuss their experiences of end-of-life care in the UK, followed by one-to-one support for those in the group who wanted to plan ahead for their future treatment and care.

Compassion in Dying developed a Visual Advance Statement Form to support the women to plan ahead, using images to allow individuals to express their values, preferences and daily routines as well as their dislikes and concerns. By the end of the project 78 percent of the women completed an Advance Statement Form including all the key information they would want anyone providing care for them to understand if they were unable to communicate.

The women who took part recognised the value of the Advance Statements, with one interpreter explaining on behalf of one of the group members: “It is important for her because if she goes to hospital and is unable to speak, instead of the doctors saying ‘who is she, where is she from’, she now has an Advance Statement which describes everything about her. For her she has made that easy and easier for the clinicians as well.”

The Tie Your Camel First report identifies common values that were shared by many of the women, as well as key issues to be considered by health and social care providers and organisations working with the Somali community:

  • The importance of religion and customs, for instance being able to or being supported to say the Shahada before death, and having access to zam zam
  • The role of family and friends, for example visiting the dying person and turning the body towards Mecca.
  • Concerns about hospice care, such as a suggestion that it constitutes an abandonment of the dying person and an abrogation of the family’s duties.
  • Distress around post-mortem examinations, which can sometimes interfere with traditional Muslim burial rituals. Many women shared upsetting experiences and the group also expressed a fear that this was an issue that disproportionately affected the Somali community.

The participants welcomed the fact that Compassion in Dying was writing up a report of key findings from the project. For example one said (via an interpreter): You put the spotlight on us, our religion and culture and what’s important to us, and put it all in one place.”

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

“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 not only allowed us to support a group of women who had no prior awareness of their rights and choices for end-of-life care, but it also provided us with rich insights into the values held and barriers faced by the Somali community. We hope that our findings go some way to demonstrate what needs to be done to ensure that people from this and other BAME communities are able to engage in Advance Care Planning so that they receive the end-of-life care that’s right for them.”

A Community Development Worker at Women’s Health and Family Services, explained:

“Many of the women haven’t got family and have no one to speak for them. Having something written down is very useful. They thought the only person who can make a decision is the doctor. They felt they had no choice at all… now they know they have a choice for everything. It has built up their confidence and they have been given voices.”*

The report sets out key recommendations for health and social care providers in order to more effectively engage BAME communities in planning ahead for end-of-life care and treatment. These 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
  • Community awareness-raising about the role of hospice care
  • Greater access to interpreters in healthcare settings and practical adjustments needed in hospitals and hospices, e.g. space to pray, facilities for washing, etc.
  • Focus on visual methods of communicating and recording information
  • Focus on people as individuals, not just as members of a particular community
  • Acknowledge that different Advance Care Planning tools will be appropriate for different people and make the process collaborative

Tie Your Camel First: Planning ahead for the end life with the Somali community can be accessed in full below:

VIEW REPORT

***ENDS***

For media enquiries, please contact Ellie Ball on ellie.ball@compassionindying.org.uk / 02074797723 / 07725433025

Notes to Editor
*Quote slightly altered for context.

  • Compassion in Dying is a national charity (no. 1120203) that aims to support people at the end of life to have what they consider to be a good death by providing information and support around their legal rights and choices. We are a leading provider of free Advance Decisions in the UK and we also conduct and review research around patient rights and choices in end-of-life care.
  • Women’s Health and Family Services is a multicultural community health charity based in Tower Hamlets, London, focused on health and empowerment issues for disadvantaged women and their families.
  • The Somali women’s project was conducted between October 2015 and March 2015. It involved eight workshops attended by between eight and eighteen Somali women between the ages of 50 and 91, two interpreters and two Compassion in Dying staff members. After the workshops, one-to-one sessions took place for the fourteen women who wanted to complete an Advance Statement, each of which were attended by a member of Compassion in Dying staff and an interpreter.
  • The Tie Your Camel First report is named after an Islamic Hadith (a collection of reports that describe what the prophet Mohammed said or did on a particular matter) that was used to contextualise the topic of planning ahead for the women involved in the project. ‘Tie your camel first then put your trust in Allah’ is understood to mean that people should take responsibility for achieving a good outcome and then put their faith in Allah that this will happen.
  • The Shahada is an Islamic creed that declared belief in the oneness of God and in Mohammad as the messenger of god. The Shahada is whispered into the ear of a new-born baby and is said by a dying person.
  • Zam zam is holy water taken from a well in Mecca that is given to a dying person.
  • An Advance Statement is one of three ways you can record your wishes and preferences for future care and treatment, to be taken into consideration when making best interest decisions on your behalf should you lose capacity to make or communicate decisions in future. An Advance Statement allows you to record anything that is important to you in relation to your future care and wellbeing. For example, any religious or spiritual beliefs you have, where you would like to be cared for and other things important to your quality of life. Advance Statements are not legally binding but have to be taken into consideration when a decision is being made on your behalf.
  • An Advance Decision allows you to record any medical treatments that you do not want to be given in the future, in case you later become unable to make or communicate decisions for yourself. It will only be used if you cannot make or communicate a decision for yourself.
  • A Lasting Power of Attorney (LPA) for Health and Welfare allows someone to appoint a trusted person to make decisions about their health or personal welfare on their behalf in case of a future loss of capacity.