Annemarie Goldstein Jutel writes: Diagnosis is a fascinating topic of reflection for critical, creative and cultural scholars. Putting a name to a disorder (“Putting a Name to It” is also, not so coincidentally, the title of my book on the sociology of diagnosis, which you can see here) shapes the experience of health and illness, and has important social consequences for both the diagnosed and the diagnoser.
I am currently turning my thoughts to the transformative power of the diagnosis. Let me explain. We can all imagine the impact of learning of a serious diagnosis. We know how it can be life altering. Suzanne Fleischmann, in her poignant account of her own, ultimately fatal haematological diagnosis explained “If a person is told “you have cancer” (or any life-threatening disease) these words irrevocably alter that person’s consciousness, view of the future, relationship with family and friends, and so on. Moreover, the utterance marks a boundary. It serves to divide a life into “before” and “after,” and this division is henceforth superimposed onto every rewrite of the individual’s life story.”
I am particularly interested in how we make sense of the transformative power of diagnosis, both in the clinical and cultural settings. French medical practices provide a particularly stark example. In 1954, the chairman of the French medical council suggested that the cancer patient, “…be considered as a child … he is a blind, suffering and passive toy.” He concluded that doctors should conceal the diagnosis from their patients. While his position caused dissent at the time, it would still be a half a century before French patients were guaranteed the right to know their own diagnosis. In 2005, legislation required oncologists to disclose the cancer diagnosis, prescribing inter alia: length of the appointment, the personnel involved, and even the format of the care plan. These contrasting approaches to diagnostic disclosure both underline the social power of diagnosis: a power to respectively destroy or prepare the patient. It is this social power that I am interested in explicating, using diagnostic disclosure as a vehicle for understanding the social impact of diagnosis.
The French example above is but one of many demonstrating that diagnosis is as much a social phenomenon as it is a medical one. Diagnosis contributes to social order: defining normality and deviance in medical terms; determining which specialty should assume responsibility for which disorders; providing frameworks for communication; structuring relationships and distinguishing professional from lay. It is a source of tension around which interests collide; doctors, patients, administrations and industries diverge on the validity, consequences and entitlements of various diagnoses.Diagnosis is simultaneously a collective medical agreement, and an individually negotiated process between patient and doctor.It also has the power to transform; the impact of the diagnostic pronouncement is as important as the disease itself, altering the sense of identity, and of future potential. This impact is acknowledged in the example above, where—albeit in different guises—protocols around diagnostic disclosure are carefully designed and implemented.
There are numerous literary examples of this diagnostic power. Raymond Carver’s poem “What the Doctor Said” is one of my favourites. This poem describes Carver’s doctor telling him about Carver’s lung cancer:
“…he said are you a religious man do you kneel down
in forest groves and let yourself ask for help
when you come to a waterfall
mist blowing against your face and arms
do you stop and ask for understanding at those moments
I said not yet but I intend to start today.”
What are some other examples you can think of to add to my collection? What are the salient symbolic representation of the diagnostic moment which have been recorded in film, theatre, literature, poetry and any other media? What are some clinical examples of the reverence we have for this transformative power? Do let me know!