Like Susan Sontag, Arthur Kleinman was concerned with the meanings of illness, what cultural values bring to the interpretation of symptoms, or an illness, and how illness is managed within a life. They were both writing in the 1980s, observing the ways in which medicine was failing in some aspects of its fundamental caring role. Patients were treated for their diseases, but they were not always heard for how their illnesses affected, and emerged from, their life story. Sontag used the essay format to express her observations that sickness is much more than the biophysical entity that is a disease: there are many unspoken cultural ‘metaphors’ that attach to symptoms or to an illness. Kleinman used illness narratives, anonymised vignettes and transcripts of the people he met over a long clinical career as a psychiatrist, to plead his case for more intelligent medical education – particularly with regard to chronic illnesses. He felt that a true biopsychosocial approach would equip doctors to listen more intelligently and empathically to their patients, to acknowledge the importance of the individual’s experience as both an influencing factor on that illness, and to enable more authentic communication.
There are therefore three chapters at the end of this book which are specifically devoted to the caring professions, principally doctors. These incorporate interviews with medical practitioners, but they are essentially different from the illness narratives that form the material in chapters 3 to 13. Running through the book is a critical theme that good doctors, following the (then) current medical training, fail to listen empathically to the person in front of them and focus almost exclusively on the disease. There is a chapter giving examples of where the patient (and family members) have a different explanatory model of the illness from the responsible physicians. Kleinman gives specific examples using transcripts of real clinical incidents: a dermatologist’s questions about ‘where?’ and ‘how did it progress?’ provoke complex responses from the patient about her social situation and the emergence of her eczema, but she is interrupted because he means the questions to refer solely to the body: ‘where on the body did it start?’, ‘how did it progress [spread] on the body?’ Kleinman refers to the work of Eliot Mischler, an expert in doctor-patient communication, and comments that ‘all too frequently the voice of medicine drowns out the voice of the life world, often in ways that seem disrespectful, even intolerant, of the patient’s perspective.’
Through detailed portraits of particular (anonymised) patients, including transcripts of interviews, Kleinman deals with people who have chronic pain and how the nature of their symptoms reflects their cultural milieu, history, and social and family environment. He also presents examples of people who respond positively to a diagnosis, and to people who are coping with a terminal diagnosis. He discusses the social stigma that attaches to certain diagnoses, and which may be internalised by the people who live with such diagnoses: a young man with a severe ‘port wine stain’ on his face, a man with AIDS, a young woman with a colostomy, an elderly leper, a young man with severe eczema on his body, and a man with severe cognitive changes following a brain injury.
In the study and use of illness narratives, Kleinman’s work is fundamental. Like Oliver Sacks, writing at the same time, he was deeply interested in the stories his patients had to tell. The narrative details enable the patient and the physician to grasp a better understanding of the illness in question, and how the patient lives in the context of that illness. Kleinman argues that cultural values and understandings are implicit in any discussion of symptoms, of a disease, and certainly in the explanatory models that the patient constructs of how the disease has emerged from their life and how it can be managed within their life. Titles of other books by Kleinman reveal his interest in the cultural aspects of illness, illness experience, and caring: Patients and Healers in the Context of Culture: An Exploration of the Borderland between Anthropology, Medicine, and Psychiatry (1980), and Writing at the Margin: Discourse between Anthropology and Medicine (1995).
Kleinman’s sensitivity to cultural nuance reveals his background in psychiatry and anthropology. He discusses the similarities and differences between the experiences and attitudes of a Chinese lady in Hunan with neurasthenia, and those of a New Yorker with chronic fatigue (previously called neurasthenia). A transcript of a doctor-patient interaction between a primary care physician and a woman of West Indian origin is dissected for all sorts of cultural meanings that the physician has shown no interest in or ignored.
The variety of experience of chronic illness is emphasized throughout this book. In a chapter on ‘The Social Context of Chronicity’ Kleinman gives an example of where a mother has perceived chronic illness – her son’s Muscular Dystrophy – to have destroyed her family, and another contrasting example where a wife observes that her husband’s lymphoma has transformed the family for the better, and brought them together. The ways in which individuals and families cope with a chronic illness will differ as their attitudes and social networks differ. ‘Illness is deeply embedded in the social world, and consequently it is inseparable from the structures and processes that constitute that world. For the practitioner, as for the anthropologist, an inquiry into the meanings of illness is a journey into relationships.’
This is a highly intelligent and empathic discussion of chronic illness, advanced through a sophisticated use of illness narratives, and its message is still relevant today.
Kleinman, Arthur (1988) The Illness Narratives: Suffering, Healing and the Human Condition, Basic Books
Other references:
Kleinman, Arthur (1980) Patients and Healers in the Context of Culture: An Exploration of the Borderland between Anthropology, Medicine, and Psychiatry, Berkeley, University of California Press
Kleinman, Arthur (1995) Writing at the Margin: Discourse between Anthropology and Medicine, Berkeley, University of California Press
Eliot Mischler (1984) The Discourse of Medicine: Dialectics of Medical Interviews, Norwood, N.J., Ablex