Different ethnic communities approach the death of loved ones with a variety of needs and expectations. Anabel Unity Sale reports on how one London hospice is learning to adjust
The end of life care strategy was published a year ago today by the government. Adorning its cover is the famous quote by Dame Cicely Saunders, founder of the modern hospice movement, “How people die remains in the memory of those who live on”.
One hospice embracing this ethos – and highlighted in the strategy for its work with engaging local ethnic minority communities – is St Joseph’s Hospice.
Based on Mare Street in the middle of the bustling and ethnically diverse London Borough of Hackney, it was established in 1903 by five Irish Catholic nuns from the Sisters of Charity, providing palliative care to people with life-limiting illnesses and their families across east and north east London.
Heather Richardson is the hospice’s clinical director. When she joined three years ago she undertook a review of the client groups the hospice worked with, either in its day hospice or through its bereavement service and community palliative care team.
She says: “We found while some parts of the local community were being served well by us, some people from black and minority ethnic communities were anxious about what we did or felt they did not need our services.”
Different beliefs about death
One barrier to effectively reaching BME communities, Richardson says, was their different beliefs about how to deal with illness and death. “For some people the concept of a hospice was totally alien because when someone is dying in their family that person is looked after at home by their relatives, and not by anyone else,” she says. “Some Islamic people were also concerned about being told how long they have to live because they believe Allah decides when life starts and ends, he is the only authority and not a doctor.”
Another obstacle is that at the time a person may need the hospice’s service is when they or their loved one is seriously ill and so are preoccupied with coping with that, rather than turning to an unknown service.
To address these issues Richardson approached community development organisation Social Action for Health (SAFH) in April 2007 to act as a broker between the hospice and local BME communities. SAFH was already experienced at working with marginalised communities in east London and together they launched the embracing diversity initiative at St Joseph’s
Spread the word
SAFH recruited 27 local people from different ethnic communities to act as health guides and spread the word about St Joseph’s work in their own communities. The health guides are aged between 20-65 and come from Bengali, Somali and Turkish backgrounds and continue to volunteer for the ongoing project.
SAFH executive director Elizabeth Bayliss remembers how impressed the health guides were when they first visited the hospice: “When people went to St Joseph’s they were blown away by how beautiful and clean it was. They said they had expected it to be a place of abandonment, which felt cold and unwelcoming.”
Embracing diversity is managed by SAFH project manger and facilitator Monjila Khatun. She runs regular workshops in different community settings for local BME people to meet St Joseph’s staff and ask questions. With colleagues she also organises visits to the hospice and on-site art classes and discussion groups for patients and their families.
She says: “Most Muslim people in this community thought the hospice was only for Christian people. They have found it really refreshing to know the hospice wants to work with the BME community and they genuinely want to go beyond the four walls of the building and out into the community.”
St Joseph’s voluntary services manager Raksha Dattani helped SAFH recruit some volunteers to the embracing diversity scheme. She says it is important for patients and their families to see and interact with volunteers from their own cultures: “Patients can identify with volunteers who reflect the diversity of the local communities.”
Jenny Watmore-Eve is the social work manager at St Joseph’s and oversees the hospice’s two bereavement teams and six social workers in the community and on its in-patient unit. She says it was not only local BME residents who had to adapt their views.
“We have really had to question and examine what we mean when we say we are open to diversity and embracing difference. Some of the work the social workers have had to do is help other staff manage the change in client groups. For example, some patients using the hospice may want their family around them and this may mean having to cope with 25 people in a room.”
How to work with BME communities around end of life:
● Ask the client what support they want and do not assume you know what they want just because of their cultural background.
● Respect a client’s views about dying and death and the importance their faith has in helping them cope.
● Use a respected local person who speaks the client’s first language and brief them about the client. Use them to interpret as they are more likely to pick up any nuances more so than an official interpreter.
This article is published in the 16 July issue of Community Care magazine under the heading Diversity in death