London is one of the most multi-culturally diverse cities in the world with over 300 languages spoken in our capital city. As an organisation that works hard to empower families to make choices around their child's care, our teams at Demelza support a variety of cultures, faiths and spiritual beliefs. We know every family is unique and do all we can to allow them the opportunity to honour their child according to their wishes at end of life. Demelza's Director of Care, Beth Ward, explains how we achieve this in a guest blog for our Bereavement Suite Appeal.
Background: Approximately half of families accessing Demelza South East London are from Black Asian Minority Ethnic (BAME) backgrounds, which is very much representative of the communities Demelza serves.
Demelza understands that a child’s death has a wide impact not just on their immediate family but socially and culturally, amid complicated cultural meaning. It is also important to understand that this is a time of tremendous vulnerability for families and it is so important to realise that ideas about death and dying are not universal across or within cultures.
Culture: Demelza understands that culture is fluid and not a fixed to a set of principles. Valuing and respecting cultural diversity is very important, it is about negotiating care and support when at least some beliefs, values and attitudes and experiences differ between families and Demelza’s teams.
It is important to value and respond to cultural difference, avoiding stereotyping and vital that families are asked for their views and preferences. Much of Demelza’s focus is on enhancing the team’s communication skills, rather than learning about cultures per say, and making sure, where possible, that families’ expressed wishes are respected and carried out.
By building an understanding and knowledge of families’ cultures, Demelza’s teams learn to value, promote and support cultural differences. It would be all too easy to impose personal beliefs on to families, expecting them to follow others’ practices.
To give an example, a mother, on realising that her baby was nearing death, carefully placed her on her bed and stepped away, rather than cuddling her and holding her close. Later she explained that in her culture it was important to let loved ones “leave freely”, without holding on and, by physically letting go, her spirit was free to leave peacefully. It would have been easy for Demelza’s Care Team to encourage this mother to cuddle her baby, which would have reflected individuals’ own views of a meaningful death and not necessarily in keeping with her mother’s beliefs.
When talking with families, it is essential to convey openness. Families rarely mind being asked about their faith or cultural practices around death. Choice is crucial. Spiritual faith and faith in God is of utmost importance to some families and Demelza works closely with local Faith Leaders to ensure that the child/young person’s spiritual needs are met.
Post Death Care: When considering cultural preferences, it is very important not to generalize, but most crucially ask families about their individual faiths and beliefs and how they would like to be involved in their child’s care after death.
For some, it is forbidden for parents to see their child once they have died and the responsibility of preparing the child’s body for burial or cremation is with the Elders within the families’ community. To give an example, one mother explained that it was forbidden for her to see her child after he had died, as if her tears were to fall on him, he would have an unhappy “afterlife”.
Opposing this, within some post death practices, it is very common to have a strong community presence, with a particularly high number of visitors, who may wish view the body of the child who has died, as a mark of respect. Irish Travelers and Romany Gipsy families will travel for miles to support a child who is end of life, ensuring that the child is never alone. With both cultures, there is a constant flow of visitors after death, who come to pay their respects to both the child and family.
Caring for the Whole Family: Some parents are separated or estranged, and it is clearly really important to work with both parents, ensuing that each have a private space to be with their child and say their ‘goodbyes’. This is often managed by carefully negotiating the timings of visits and being clear of the needs of both parties.
Occasionally, there may be conflict in what is shared with other family members, especially children. In this situation, it is important to respect families’ views, whilst maintaining honesty in communication. What Demelza aims to achieve is that parents, brothers and sisters and those who love the child find peace and build their story, continuing their lives with very positive memories of their child and, most importantly, with no regrets.
by Beth Ward