I had a strange pain, started in the whole of my body you know,
sometime in here (breast), sometime in, in whole of my body,
was circulating like blood. (Fatima)
Pain can come and go. It can stay put in a single place - ‘here’. It can move through the body, so that it is everywhere, ‘circulating like blood’, in the words of Fatima, a Pakistani asylum seeker, with breast cancer that had spread to her bones. Despite the different ways in which we try to represent and understand pain - for instance in medicine, as numbers (0 is no pain, 10 is unbearable pain), faces (smiles, grimaces), rhythms (continuous, spasmodic) or intensities (mild, intense) - we are always using an inadequate short hand. ‘I can’t describe it’, many of the patients that I have interviewed say.
Pain is difficult - and some would say impossible - to communicate to another person. ‘You can be sitting next to me and say you feel pain, but how do I know … whether you are feeling pain or not, or if your pain is anything like my pain?’, the artist Donald Rodney, asked. Rodney had sickle cell anaemia.
Total pain - palliative care
Total pain is a clinical idea and approach developed by Cicely Saunders, the founder of the modern hospice movement. Total pain recognises pain as being physical, psychological, social and spiritual. Cathy Sielbold has described how in the idea of total pain, 'Pain was not just a physical sensation: it might be a consequence of loneliness, spiritual distress, inappropriate diet, or tumour growth. Careful listening was the important skill in determining the best way to reduce patient discomfort' (1992: 16). As Robert Twycross points out in his podcast, it is important to remember that total pain was always meant as a teaching model. In other words, it is necessarily an 'over-simplification'.
An over-simplification it might be, but total pain is an extraordinary way of thinking about and responding to pain. Cicely Saunders often used the following example in her lectures and writing to explain total pain,
I remember one patient who said, when asked to describe her pain: “Well, doctor, it began in my back but now it seems that all of me is wrong,” and she then described her other symptoms. She went on…”I could have cried for the pills and injections but knew that I must not. My husband and son were wonderful but they were having to stay off work and lose their money.” She was suffering a “total pain”….It is, in a way, somewhat artificial thus to divide a whole experience but it may give an internal checklist on meeting a new patient .
In addition to her extensive clinical trialling of pain relieving drugs, Cicely Saunders was a doctor who carried a tape recorder. She used patient stories (as well as their artwork and poetry) to deepen her understanding of the subjective experience of pain and dying and also in her campaigning work to improve end of life care. The patient in Saunders’ research and writing is a person with a social and emotional biography and relationships. She is also a flesh and blood body of skin, bones, blood, hormones and neuro-transmitters.
In my archival research in the Cicely Saunders Archive at King’s College in London, I found numerous examples from Saunders’ early work as a doctor in London, during the 1960s and 1970s that document what she would later describe as ‘social pain’ (Saunders & Baines 1989). For example, in an undated lecture entitled ‘The Problem Patient’ based upon hospice patients she had cared for between 1978-9, Saunders describes a Polish patient, a Mrs P, as ‘A patient with an extermination camp background who later developed severe depression with hallucinations, helped by E.C.T.’ (Electroconvulsive Therapy). She also observed that as some of patients drew towards the end of their lives ‘they sometimes had recurrent nightmares, reliving traumatic experiences of past lives such as war and internment.’
What I have found especially valuable is the recognition that total pain gives to pain that can accrue over a lifetime.
Social pain- neuroscience
In the neurosciences 'social pain' is the pain that results from a loss of close relationships or rejection. It has been defined as 'the unpleasant experience that is associated with actual or potential damage to one’s sense of social connection or social value (owing to social rejection, exclusion, negative social evaluation or loss)'. Research using experiments with fMRi scanning, suggests that physical and social pain share the same neuro substrates. The studies, many using neuroimaging technologies and controlled experiments (with functional MRI), visualise brain activity in real time. They show that two regions of the brain - the dorsal anterior cingulate cortex and the anterior insula – are both involved in the technological imaging of physical and social pain.
Naomi Eisenberger is a leading figure in social pain research. Her free access article 'Broken Hearts and Broken Bones' in the journal Current Directions in Psychological Science summarises some of the evidence on what she calls the 'physical-social pain overlap.'
Such findings about the neuro-circuitry of pain have practical and ethical implications - should social pain at the end of life be relieved with drugs, for example? As yet, this neuroscience research does not tell us about the subjective experience of pain and how it might relate to an individual's circumstances - the events and history of pain in someone's life. Using the example of depression, psychiatrist and psychologist Sally Satel and Scott Lilienfeld make the following point about the complex relationships between the neurological and psychological:
...one cannot rely on the brain alone to predict or understand everything important about human subjectivity or behavior. This is because many psychological phenomena are emergent properties of lower-order constituents such as neural circuits, neurons, proteins, and genes. “Constitutive” reductionism - reducing complex entities to the sum of their component parts to facilitate study - is not controversial in the scientific community. But, radical or “eliminative” reductionists go a crucial, and questionable, step further. They insist that everything mental will ultimately be explained fully at the material level of analysis. This variant of reductionism ultimately eliminates the need for the psychological level of analysis, not to mention all other levels - social, cultural, and so on.
This also applies to how we interpret the neuroscience social pain research. It is one thing to recognise how the same part of the brain can light up in an fMRI scan when a person’s thumb is held in a vice and when they are excluded in a computer simulated game of catch. It is something quite different to exist in a situation of social marginalisation outside the laboratory and to live in an on-going relation with racism, poverty and/or the threat of other violations.
I have been interested in MRI for a long time, but found it difficult to understand the processes involved. Oxford Sparks is a wonderful portal that has a cool animation explaining MRI.
Social suffering - social sciences
In the study The Weight of the World, first published in French in 1993, the sociologist Pierre Bourdieu used the term social suffering to investigate the relationships between la grande misère – economic and spiritual impoverishment – and la petite misère or ‘ordinary suffering’. Others, such as Kleinman, Das and Lock (1997) write how, "The concept of ‘social suffering’ has been taken as the human consequences of war, famine, depression, disease, torture , the whole assemblage of human problems that result from what political, economic, and institutional power does to people, and also human responses to social problems as they are influenced by those forms of power." (p.41). What characterises these social science discussions, is the recognition that pain and distress can be produced by the social - by experiences of inequality, exclusion, injustice, powerlessness and persecution - and that the normalisation of this suffering must be challenged and addressed.
It is perhaps not surprising that such forms of suffering can manifest at the end of life, when selves and bodies can become both less taken-for-granted and more vulnerable, as illness progresses and also at different stages of the care pathway that involve varying degrees of bodily exposure. For example, in a Swedish study, palliative care nurses reported how caring for refugees and survivors of the Nazi concentration camps, often demanded greater attention to the routines and technical procedures of bodily care. One nurse described how ‘we had a patient who had been in a concentration camp…it was awful of course…talking about gas…she had great difficulty in breathing and it was extremely hard and there were so many memories involved in it all…’ ( Ekblad et al. 2000, p.628).
I have also found that at diagnosis, commonly expressed questions of ‘Why?’ and ‘Why me? can twist into a ‘Is it me?’ for dying migrants.
A story recounted in a focus group interview by Mita, a Cancer Nurse Specialist, suggests some of the ways in which the felt injustices of diagnostic care can resonate with the injuries of class and racism, producing a layered distress. Mita’s story is about an Indian Hindu patient with terminal cancer. The man’s cancer had been repeatedly misdiagnosed leaving him feeling angry and distressed. The patient had been a teacher in India and on settlement in the UK could not get a teaching job, and so had worked in factories and as a bus driver. Here is Mita's story
I think it (his feelings of being discriminated against (in employment)
had an impact on how he dealt with his condition, because unfortunately
his diagnosis had been quite delayed. For a year he’d been going
backwards and forwards to the GP, telling him all the classic symptoms
of what he’d got…he still had this idea and he said “I know I’m educated
and I know I’m completely in the wrong box. I think they haven’t treated
me properly because I am who I am, because saying I was only good
enough for bus driving, not for teaching and for the same reason they
didn’t think I was important enough to be diagnosed early enough to be
treated in the right way.” And I found that very hard. That was really
difficult, that was hard for me to take. I mean what can you say?...What
can I actually say to him that’s actually going to make a difference to
him? And I found that really difficult.