Multimedia project explores social pain, migration and end of life care

Categories: Research.

Now, as part of a British Academy Fellowship project entitled: ‘Case Stories’, Yasmin has spent the past year researching end of life care for migrants and exploring the concept of ‘social pain’. The project has produced a multimedia website which combines a series of fictionalised narratives based upon real experiences, with poetry, art, video and audio content. ehospice spoke to Yasmin to find out more.

Could you explain the Case Stories project?

Case Stories is the name of my British Academy Fellowship project. The idea for the project came out of my experience and research in palliative care that started when my mother died under hospice home care in 1992. During my subsequent ethnographic research that included narrative interviews with dying people and palliative care professionals, I began to hear stories of what I now think of as ‘social pain’ – pain that is related to the effects of social inequalities, exclusion and injustices such as experiences of war, persecution and racism. 

When I started reviewing the literature I found that social pain was the least well defined and understood aspects of the palliative care concept of total pain. At a very basic level the Case Stories project is using stories and art to try and encourage thinking about the ways in which social pain can manifest at the end of a life. As a part of the project I did archival research in the Cicely Saunders Archive at King’s College in London, which meant going through Cicely’s notes, lectures and case studies that she drew upon in developing her ideas about total pain and hospice care.

In a way, in Case Stories I am re-performing Cicely’s methodology of turning cases into issues. As a part of the work I have been building a digital archive of stories that can be used by care practitioners and dying and bereaved people. Although my focus has been on migrants, social pain can be experienced by many people, such as those living in poverty or with stigmatisation. So the project has wider implications and I would like to develop it in the future to address other areas of social life.

Why is migration and end of life care such an important issue?

When I started my PhD research in 1995, little did I know that I would be witnessing the beginning of the ageing and dying of the UK’s post-war cohort of migrants – mainly those from the Commonwealth who migrated in the 1950s and 60s. Now with increasing migration, transnational illness and dying are very much predicaments of our time.

As well as raising questions about the need for care that is responsive to the needs of those from different cultural and faith backgrounds, transnational dying brings up longstanding philosophical concerns about hospitality that are central to the history of modern hospices. David Tasma who inspired Cicely Saunders in her thinking about hospice care in the late 1940s was a Jewish refugee from Warsaw. With recent debates about ‘health tourism’ – what an awful term! – we can also see these questions about the extents of our hospitality towards strangers re-emerging.

What I have found so riveting about going back to the original ideas that Cicely drew upon is that I can see how the hospice model steeped in a history of monastic medicine and caring for travellers has so much relevance to current ethical and political conundrums.  

What influenced the multimedia format of the website? Was this an intentional aim of the project?

Yes and No! A website was a part of my original proposal for the project but the multimedia nature of the site has grown organically, particularly my use of podcast interviews, audio-stories and the blog. In the initial stages of the project I was consulting a wide range of people working on different aspects of pain, palliative care, stories and migration. I was interested in hearing their experiences and views about social pain and I was also asking them to ‘donate’ stories of social pain to the project. I was blown away by the stories I was hearing and I thought how valuable it would be to make these stories a part of the project and to share them with others.

As an educator I can see how they might be used to support palliative care education and training but they’ve had a wider appeal too. For example, they have been accessed by community groups working with refugees and asylum seekers as well as academics across different disciplines.

What do you hope to achieve from the project?

If the project helps to promote discussion and get more people talking about social pain and this in turn improves care, Case Stories would have achieved something important. Then there is the ‘icing on the cake’ stuff.  I would love the project to contribute to more interdisciplinary collaboration on social pain. The neuroscience research on social pain is awesome and what is especially interesting to me is that the research is providing evidence to support Cicely Saunders’ observational and tacit knowledge about pain as an alloy of the physical, psycho-social and spiritual. For example, more and more neuroscience research is showing that social and physical pain share the same neurological underpinnings.

There are huge ethical issues here too. Should we medicate for the effects of social inequalities at the end of life? What are the extents of the responsibilities of palliative care? Should palliative care widen its remit to include a bigger spectrum of pain and loss as ‘health promoting’ palliative care advocates have been suggesting? And then of course there is the role of art and art therapy at the end of life. The first story that I had donated to the project was from a hospice music therapist describing how reggae and drumming helped to ease the pain of a dying Rastafarian. It is such a powerful and beautiful story and has attracted a lot of interest.

How is Case Stories funded and for how long?

That’s a sad question for me at this time! Case Stories is a British Academy Fellowship project and was funded for one year. The project finishes at the end of December. I have organised a workshop at the end of this month that will bring together academics, artists, community groups and palliative care practitioners to start a conversation about how we might develop work on social pain in the future. So I am hoping that this is the beginning of other projects and initiatives.

How can people get involved in the project?

It would be wonderful if people could donate stories, art or poems about any aspects of transnational dying and care to the project. They could also do a podcast interview with someone if this was easier. If anyone is interested in future work they can contact me through the website. 

What have been the highlights of your Case Stories experience?

There have been many and my learning has not so much been a curve as vertiginous! In May, after some detective work I tracked down David Tasma’s grave and visited it with the photographer Nadia Bettega. I am slowly piecing together more about David’s life and again this is something that I feel will be a long term project. 

July was another highlight. With support from the art therapy team at St Christopher’s Hospice, two patients recorded poems that I had written. The poems, ‘Blind Date’ and ‘Prince and the Pee’ were part of an installation with patient art that we did for the ‘Visualising Affect‘ exhibition at Lewisham Arthouse. The installation was so well received and the art was stunning, poignant but also witty and irreverent.

Then last month I did a workshop at Loros hospice in Leicester to pilot some of the case stories. The participants gave me such helpful and thoughtful suggestions and helped me to think about the stories in new ways. It was one of those occasions when the hair stands up on the back of your neck! In many ways that workshop sums up my experience of this project – of collaboration, serendipity and incredible generosity. 

Yasmin Gunaratnuma has written the book: ‘Death and the Migrant’, a sociological account of transnational dying and care in British cities. It chronicles two decades of the ageing and dying of the UK’s cohort of post-war migrants, as well as more recent arrivals. The book will be available from 21 November 2013.

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