Engaging in Dialogue Report

Engaging in dialogue

Loca

l Bengali and Somali people from East London and cliniciansand managers from St. Joseph’s Hospice talk together about end oflife care for Muslim patients

A report regarding the process, its outcomes and thehospice response

Written by Monjila KhatunEdited by Elizabeth BaylissWith input from Heather Richardson

Social Action for Health

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Dialogue Groups

DISCUSSIONS AROUND END-OF-LIFE-CAREIntroduction

Social Action for Health, a local community development charity, was commissioned bySt Josephs Hospice to help in achieving its objective of “engaging effectively with ourlocal communities”, with the aim of increasing the sense that St. Joseph’s is there for all,“owned “ by local people from all the different communities in East London.SAfH did not approach this work as a research project but rather as an extendedcommunity health development task. SAfH builds relationships with local people whohave been marginalized; these relationships are long term and developmental andfacilitate people building up social and functional networks for themselves. So, in relationto the Hospice, we have seen our job as on the one hand to inform local people aboutend of life care and raise their expectations about this, and on the other hand, toengender confidence amongst Hospice staff about engaging with people who aredifferent from themselves and to engender curiosity such that they want to askquestions, find out for themselves about others. Because SAfH has a relationship withlocal communities there is a clear expectation that we report back to the local people onprogress made in relation to any piece of work and this project is no exception.Our work in the first year of the project was to engage with local Bengali and Somalipeople about their experiences of death and dying so that we could hear what sort ofservices people would like, what people would expect and to hear about theirexperiences of coping with a death. At first local people had not wanted to talk aboutdeath but by the end of the year, people were interested and vociferous.In the second year of the project, (2008/9) what was called for was a deeper dialogue, tohonour the interest raised in local people and to answer the questions of clinicians andmanagers about the practical implications of what they had heard. We wanted to findout more specifically what people’s views were and the context for these, to check outtheir meaning in terms of service provision and indeed to facilitate a negotiation betweenlocal lay people and clinicians about clinical practice and its meaning, in the context ofreligious belief, spiritual needs and cultural rituals.With this in mind SAfH created a structure to enable dialogue and exploration over timethat would allow meaning to be drawn out and the implications for practice. Three topicswere chosen because the issues around them had repeatedly come up in health Guidesessions and in conversations in the Hospice. These were:

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The nature of home care services (exploring how they can be made toaccommodate end of life crises or not)

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How to convey the fact that death is coming without causing offence

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The treatment of relatives at the end of life (social aspects of managing theprocess of dying)Interested members of local Bengali and Somali communities were invited to take part indiscussions with clinicians from St Josephs Hospice and facilitated by Social Action forHealth facilitators with the support of Health Guides so that people could engagetogether, cross culturally but in their own language.This report will look at the findings from these discussions, summarizing key communityopinions and highlighting recommendations for the Hospice to act upon. It will also drawout some lessons from the process itself.

Methodology

Health Guides and the Hospice

The dialogues emerged from the Health Guide work SAfH undertook. Health Guides arelocal lay people trained in communication skills and to run groups who go out to localcommunity centres and mosques to tell people services in their mother tongue and tohear back about people’s experiences and concerns. A group of Health Guides trainedon Hospice services and end of life care had run a series of sessions and had found outpeople’s attitudes and experiences. They came together, cross culturally, in an opensession to which clinicians and managers from the Hospice were invited, so that theycould engage directly with local people.This open session was very powerful with people having a lot to say. When SAfH andthe Hospice reflected on the issues that emerged, it was clear that we had to go deeper,that we needed to have more dialogue to tease out the practical implications of whatpeople were saying. The dialogue groups were the result.

Dialogue group design and purpose

These were designed to bring together two sets of people, namely service providers andlocal lay people, under one roof to openly discuss, debate and come to some commonunderstanding and agreement about how to shape End-of-Life care to suit the needs ofspecific communities. In this instance, the chosen two communities were the localBengali and Somali communities both of which are significant within the three localboroughs Tower Hamlets, Hackney and Newham, the areas served by the Hospice.Furthermore both these communities come from a very distinct cultural background,sharing Islam. These cultural and religious backgrounds shape their service needsduring death and dying.The idea was that clinicians and managers from the Hospice would explore in detail andspecifically how best to cater for the cultural and religious needs of these twocommunities.Lay community participants were selected to take part because of their previousexperience and keen interest in End-of-life care issues. They received a small voucherto cover expenses after each session. Clinicians were invited from St Joseph’s Hospiceto come and join discussions on the chosen three topics. The dialogues were designedto provide a platform for both community and clinicians to understand and learn from oneanother about how to make services appropriate for people from different backgrounds.