The Transformative Power of Diagnosis

PUtting a name to it 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!

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5 Responses to The Transformative Power of Diagnosis

  1. Jessica says:

    Hi Annemarie,
    To what extent are you considering the diagnosis of psychological disorders? These, I think, form an interesting group in two particular respects: diagnosis can function as part of therapy; and the symptoms that inform diagnosis can often be conflated with socially undesirable behaviour.
    In terms of therapy, I am thinking both of the way in which explaining theories about psychological processes and their (mal)function can be used to help individuals understand their internal experience (e.g., memory, in the case of PTSD), and of how, in behavioural disorders, the ‘diagnostic moment’ acts to encourage patient cooperation by affirming an underlying cause for particular behaviours and, further, classifying it as pathological.
    With regard to socially undesirable behaviour, I recall a conversation I had several months ago about gun crime and its relation to the resources for mental health care. In essence, my interlocutor proposed that a high level of gun crime was the result of insufficient provision for (or diagnosis of) people with schizophrenia, thereby making gun crime a symptom of a mental disorder. For me, this example highlights the role of psychopathological diagnoses in mediating and circumscribing social perceptions of desirable and undesirable behaviour.
    ~ Jessica

    • jutel says:

      these are good points. You might like to take a look at my recent postings on my facebook and sociagnosis page (sorry, I can’t see how to make a hyper link in this comment field). Your examples bring to mind the work of Charles Rosenberg who describes how psychiatry is often the border guard for the fringes of normality, and of Peter Conrad, who has written widely about the medicalisation of deviance. Is deviance badness (socially/criminally reprehensible),or illness disease? Important questions.

      • Jessica says:

        Thanks for those references – I shall look them out. And yes, I discovered your page on tumblr after my comment, and have found it fascinating. Thank you!

  2. A fascinating example from drama is in Tony Kushner’s Angels in America, where the character, Roy Cohn, is diagnosed with AIDS and refuses to acknowledge this because of its associations with homosexuality (in 1980s America). There is a wonderful dialogue between Cohn and his doctor on naming, both medical conditions and wider labels such as ‘homosexual’. Publicly, Cohn insists he has liver cancer instead. There’s a wonderful clip on youtube of the diagnosis scene, with Al Pacino playing Cohn: http://www.youtube.com/watch?v=98fBiOVEcyI

    Julie Scanlon @SubjectGender

    • jutel says:

      This is a great clip. thank you.

      It brings to mind some examples I recall from the late 1980s, when I was nursing in the US at a prominent research hospital. One of our very prestigious patients died of AIDS, but was reported by the media, to have died of stomach cancer. Another patient, died of prostate cancer, practically in my arms, as I repositioned him during the night. Driving home from work that morning, I heard the report on the morning news that he had died of bone cancer. Prostate cancer was somehow unspeakable too, for reasons that still allude me.

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