Session 10: Broken Bodies and the Art of Caring

Celia Bandman - The Medical Humanist: A Pilot Programme in the Cancer Center Setting
SVHC Oncology Associates, Bennington, Vermont 05201

"…Underexposed to narrative knowledge and overschooled in the logico-scientific,
doctors gradually lose their abilities to tell and be moved by human suffering…
unless they actively and courageously replenish their stories of imaginative vision,
unless they can recall how to get news from a poem. Not superficially but deeply and
with great accuracy doctors must grasp, see, contain, reflect, recognize until they can tell the full and painful stories that befall their patients and themselves"

The Institute of Medical Humanism in collaboration with Southwestern Vermont Health Care have worked with a patient, writer, clinical psychologist and oncologist to develop a program in a regional medical setting incorporating the humanities into the care of patients. The position, medical humanist, has been created by the group and filled by the writer. A medical humanist who is a writer influences care using language and metaphor specifically to bridge the experience of patient and doctor.

The doctor is trained to reduce medical records to the language of medicine: scientific data. The failure to write narrative records is a symptom of a greater problem - the tendency to see parts instead the whole. Caring for a patient is an art: it is the art of applying good science in a useful and meaningful way for the person who is the patient.

In the practice, the medical humanist meets with newly diagnosed patients and their families and follows them through the cancer experience. The communication between the medical humanist and patient is documented for the doctor. The medical humanist notes the voice from the lived world of illness: the patient's words. As a result, doctors are exposed to the "painful stories that befall their patients…"

This is a new concept to enhance provider empathy, support doctors and patients and to improve provider/patient communication.

Vera Kalitzkus - Life ‘In Limbo': Donor Families, Organ Recipients and their Experience in Germany
Institut für Ethnologie, Georg-August-Universität Göttingen, Germany

Organ transplantation is a biomedical technology which is being practiced almost world-wide and which transcends national boundaries. Furthermore, it touches two key anthropological concepts: the self and death. The boundary between life and death is disputable. Officially,the state of "brain death" defines the death of a person; this generates the paradox of a (biologically) 'living corps'. The boundaries between individual embodied selves are transgressed. As both concepts are culturally defined and embedded in a specific historical context, the aim of this paper is to examine how people experience and live with this vague boundary. Based on my empirical research (narrative interviews, participant observation) in Germany, I want to cover the following aspects:

1. How do 'donor relatives' experience the confrontation with brain death and the necessity to make the decision of donating the organs of a person they love.
2. How do organ recipients master the integration of another persons organ in their own body and self? Furthermore, how do they cope with the fact, that there is a direct link between their prolonged life and the death of another person?
3. How do 'donor families' and organ recipients cope with this 'relationship' based on sharing a bodily substance and established through death.

My analysis of the experience of 'donor families' and organ recipients is based on the analytical distinction between the body ("Körper") and the lived body ("Leib") and Marcel Mauss´ theory of the gift.

Emma Sayers - Angst Among Cancer Survivors
Centre for Values, Ethics and the Law in Medicine, University of Sydney, Sydney, Australia

Most people think that surviving cancer must be a wonderful experience. Narrative interviews with survivors, however, suggest that about 25% of those apparently free of cancer experience significant "survivor angst", which impairs the quality of their lives, sometimes for years. Survivor angst has a number of components. We have identified two of particular importance.

The first is Cancer Survival State (CaSS), a subjective state which consists of three linked constituents:

1. A sense of being permanently labelled with the cancer diagnosis;
2. A changed relationship to the body, with a lessened trust in its resilience and durability; and
3. A sense of communicative alienation, an awareness that the nature of the cancer experience cannot really be communicated to others who have not had the experience.

The second is a sense of disrupted identity. Identity depends importantly on a sense of continuity of memory and embodiment. Cancer illness interrupts both. Memory can be interpreted as the process of selecting experiences and constructing meaning for them. We construct narratives in this way, which allow us to assign meaning to the events of our lives. In this sense, we can be said to have "future memories" as well as memories of the past. We imagine the experiences our future lives will contain, and we imagine what it will be like one day to look back at those experiences. The loss of future memory is common after cancer. A young woman, for example, who imaginatively constructs her future identity as one shared with a partner and a number of their children, may lose that future because of surgery and other therapy. This may produce senses of grief and loss which may take years to heal.

Cancer survival can be troublesome and distressing. Survivors deserve greater understanding and support than are usually provided for them.