Migration, death and care

A survivor of a concentration camp keeps pushing away a nasal tube that is delivering her oxygen. The tube brings up traumatic memories. An Indian teacher looks back on his life and feels humiliation and hurt at not being able to get a teaching job in the UK and of having to work as a bus driver. His hospice nurse asks ‘What can I say to him that is going to make a difference?’

These are some of the stories that I have heard over the years, in my work in end of life care. They have made me think about how different forms of social injustice and survival can leave traces and build up over time, resurfacing at the end of a migrant's life as pain and other bodily symptoms. So, rather than seeing pain and disability as the result of a person's biopathology alone, I am interested in pain and suffering as submerged relationships between the social and the bodily.

The Case Stories project is about finding out more about these experiences of 'social pain' for migrants to the UK. What is social pain? How is it felt and communicated through various registers and idioms? Informed by reviews of existing research and my own qualitative interviews, the project has produced fictionalised 'case stories' of social pain.

Part of this work is about intervening in discussions and representations of how social pain can be recognised and felt at the end of life. 'Slow pain' and the notion of 'invisible scars' are some of the ideas that I have been working with. I am especially interested in discovering new ways of engaging with migrant experiences that do not reproduce stereotypes, for instance of migrants as welfare 'scroungers' or as helpless victims, lacking in agency. Rather, I have wanted to show the capacity of contemporary migration to both question and enrich the ways we think about social life. For example, in my work on diasporic dying and the end of life condition of 'terminal restlessness', I have been exploring ideas about temporal otherness and the limitations of Western assumptions of experience as linear and coherent. Similarly, I have been interested in bodily conditions and qualities that defy categorisation and that demand a speculative reading 'between the lines' in a stance of what the poet John Keats called 'negative capability'. Negative capability is about the capacity to hold doubt and mystery.

Having said this, it's important to point out that social pain is not an inevitable experience for all migrants, especially for those who are wealthy. Because my research has been focused on end of life experiences, rather than high visibility 'crisis' points of migration, such as at borders or in detention centres, I have met a range of migrants - such as those who migrated to study, or were recruited to work in the health services, or those who were refugees. Not all had experienced social injustice or exclusion. It is also important to remember that those who provide care can also be migrants themselves.

Questions and puzzles that led to the project

• The founder of the contemporary hospice movement, Cicely Saunders, developed her ideas about hospice care and 'total pain' in the 1950s and 60s. As a newly qualified doctor, Saunders worked at St Joseph's Hospice in Hackney, East London and cared for several Jewish and Irish migrants. In what ways did these encounters affect her ideas about pain? How have they shaped modern hospice and palliative care?
• The concept of total pain recognises pain as being physical, psycho-social and spiritual. Yet the 'social pain' aspect of the concept is the least discussed and understood. Why?
• The consequences of living with inequality and injustice are the subject of the 'social suffering' literature in the social sciences, but the neurology of pain and its interrelations with disease and disability have not been fully investigated. What can the developing neuroscience research on social pain contribute to the social science and palliative care understanding of social suffering and without entirely remedicalising pain? This work is broadly related to 'health promoting palliative care', which is interested in dismantling the causes of social inequality.

I have been trying to bring together these different approaches to pain and explore how stories might evoke, question and show some of the entanglements between the social and the biological and the deficits that exist in our existing hermeneutic resources. Havi Carel and Ian James Kidd's work on 'hermeneutic injustice' in health care is relevant here.  “Hermeneutical injustice occurs" Carel and Kidd believe, "when someone’s testimony is not squarely disbelieved but a conceptual impoverishment in a particular culture prevents that person from being able to clearly articulate their testimony” (p.533).

By using the hybrid term 'case story' in this project I am exploring the relationships between 'fact' and fiction, drawing upon feminist and postcolonial critiques of representation and the rich history of the case as an exemplar in psychoanalysis and medicine. As the feminist cultural theorist, Lauren Berlant, has put it, 'the case can incite an opening, an altered way of feeling things out, of falling out of line.' (p.666). As Berlant explains, the root meanings of the word 'case' come from the Latin 'casus "fall, chance, occurrence" and cassus, "void, hollow," as though falling out of the fabric of things produces an event that requires explanation.'

Live Sociology

'Live Sociology' is a multi-method and engaged sociology that we have been experimenting with and developing at Goldsmiths.  Les Back has described it as a practice of sociological humility; of sociologists engaging with the world differently 'without recourse to arrogance but with openness and humility.’  The Case Stories project is an experiment in Live Sociology. 

As well as wanting to improve end of life care, there are sociological and philosophical ideas that inform my work. 'The question of the foreigner' as Jacques Derrida has phrased it, is most acute at times of bodily vulnerability and death, bringing into sharp relief the borders and meanings of community and hospitality. The podcast interview with Professor Nigel Clark on hospitality explains more about some of the philosophical ideas that have inspired me.

What characterises experiences of transnational dying is the coming together of two radical border crossings: the movement across territories and from life to death. So, in addition to my concern with care, I have been interested in philosophical discussions about borders, thresholds and estrangement; of how borders are not only constituted through different bodies, but can also be held within the body.

A ethical and political question that I am tussling with concerns different levels of response to bodily vulnerability and pain, from care-givers and researchers to politicians and societies. The capacity to speculate about another's experiences and feelings are what Raymond Williams has called ‘felt thoughtfulness’. This capacity is an important quality in care giving, even though empathy, as Clare Hemmings points out in her podcast, is highly problematic. Using the insights from feminist and postcolonial scholars,  Carolyn Pedwell, raises important questions about empathy as a practice of 'translation'. Pedwell asks: 

What does it mean to understand empathy not as emotional equivalence (i.e. either by spontaneous fellow feeling or imaginatively conjuring an ‘accurate’ sense of the emotional or psychic state of another), but instead as a complex and ongoing set of translational processes involving conflict, negotiation and imagination?  What might emerge from a giving up of the empathic desire for cultural mastery or psychic transparency and a giving in to being affected by that which is experienced as ‘foreign’ in the midst of transnational flows, relations and power structures? (np)

My 2012, Sociological Review article 'Learning to be Affected' discusses some of these issues further.

What I'm doing

Made possible by a British Academy Mid-Career Fellowship in 2013, the project had three main components:

i. Archival research in the Cicely Saunders Archive at King’s College (London) on the early development of the palliative care philosophy of ‘total pain’ by Cicely Saunders

ii. A scoping review of the literatures on social pain across the medical, human and social sciences

iii. The bringing together of the findings from the archival and scoping research with narrative interviews with dying migrants, carers and care professionals to develop ‘case stories’. Case stories are fictionalised narratives. I hope that the case stories will be used in training and education to support greater recognition and awareness of social pain.

The Website

I would like the website to be a place where you will be able to find resources, stories, poems and podcasts about different dimensions of pain, migration, illness, death, dying and stories.

The site has 'case stories' and poems that you can read, hear and download. You can use them with colleagues or in teams as a training or teaching resource, or for more informal discussion. There are learning support materials with the case stories to help you to use them in this way.

If you have any suggestions about how I could develop and improve the site, please email me Y.Gunaratnam@gold.ac.uk

Pain, trauma and death - A story

Felicia M. Knaul, an extract from 'Closing the Global Pain Divide'

"On June 1, 1984, at approximately 4 in the morning, my father, Sigmund Knaul, died of stomach cancer. He was 60; I was 18.

Branded in Birkenau at age 15, my father spent five years in Nazi concentration camps, and he lost almost his entire family in the Holocaust. The cancer that killed him was related to the harsh treatment in the camps.

My father's cancer was fast-moving and deadly. We had less than four months between diagnosis and death. After an extensive surgery in February, he spent less than three weeks at home before severe bone pain in the hips -- metastases -- sent him to the emergency room. My father never left the hospital alive.

As happens when cancer cannot be controlled, each day brought new terrors. Bone metastases throughout his body. Lungs filling with fluid that somehow had to be drained. Loss of bodily functions.

Yet, he and I, as father and daughter, somehow flourished in that hospital room on the 17th floor. My adolescence had not been an easy time for us. But cancer gave us the opportunity to put past frictions aside and connect, often around the future we would not be able to share. We sometimes danced at night -- well, he sat on the bed, and I held him and we hummed to our own music as we talked. Access to sufficient pain relief made this possible.

In retrospect, it never occurred to us that taking him home to be cared for by his family and die in his own bed might be an option. He was in too much pain. And in those days at least, no one suggested how we might have been able to manage his care and his pain at home. My mother, my 15-year old brother, and I took shifts accompanying him in the hospital. I attended high school only sporadically during those weeks -- just enough to complete my final year. We eventually hired a night nurse.

The last week finally came. My father kept slipping back and forth between the present and the past, between the hospital and the Concentration Camps. He confided that seeing me and my brother kept him focused on where he was at death: in Toronto and not incarcerated by the Nazis. He realized that his children were a product of life after the Concentration Camps and our presence helped him to confront the reality of a death that was far less frightening than the torture of returning to Auschwitz.

From that moment on and for four horrible days and nights, I barely left his room. It was a conscious choice and something I will always be thankful that I was allowed to do. My mother and brother were there throughout. Our social worker, Renata -- who had become and would continue to be my dear friend until her death at home from cancer some 20 years later  -- accompanied us daily.

It was clear that death was near and my father spoke to me about it, telling me he wanted to see his parents. He also spoke of seeing a light that he wanted to reach for. The IV fell out on the Tuesday, and was difficult to get back in. We ordered that it not be replaced, thinking that that would be the end. Unfortunately, it was not. No one prepared us for the dryness of his mouth or the pain of having perhaps caused him more suffering. I doubted my actions, but I knew he wanted to die with dignity.

By the next day he could not speak. He spent most of his energy grabbing at the handle that hung over his bed and around which I had tied a hand towel. I think he was reaching for the light, but it may have just been a way of easing his labored breathing that I remember so well -- hours and hours of struggling as his lungs audibly filled with fluid and every breath desperately searched for a crevice to fill with air. I remember the horrible wheezing, the gasping for air, the wet breathing noise that went on and on. I could do nothing other than keep his head elevated to stop him from drowning.

I asked him if he was in pain. He tried to speak, but I could not understand. His lungs were nearly full of fluid and he could barely breathe. I put my hand in his and told him to squeeze my fingers if there was pain. He squeezed and released, telling me in the only way he could that he was in severe pain.

Therein began another struggle with the medical staff; there had already been several. I somehow understood or intuited that the medical residents were telling me that they could not give more medication because it could precipitate his death -- even if only by hours. When I insisted that the pain medication be increased, the residents told us that it would likely put him over the edge. After speaking with my mother and brother, we insisted again that my father be allowed more pain medication. The residents left the order on the chart -- in case of additional pain.

I was the one who gave him the extra medication, just following the regular injection of morphine that was no longer enough to quell the pain. To this day, my memory is of a small plastic cup filled with a dark brown liquid that I slowly helped him to take by mouth. Within hours, he was at peace and no longer struggled to breathe."