Sharon Kaufman, a professor of medical anthropology at the University of California, San Francisco, has written a deep, quite remarkable book on how American hospitals shape the life at the end of life.
"And a Time to Die : How American Hospitals Shape the End of Life" (Dr. Sharon Kaufman)
For over a thousand years, death was a public event, not the private family matter as we understand it. The art of dying well provided the model for the deathbed scene when it unfolded in public view, the passage into the unknown seen as a spiritual one.
By the 18th century, the art of medicine made death more visible and the dying person was transformed into the patient. Today we experience the "problem of dying" because new technologies allow a new state of being - "death in life". The Karen Quinlan case began a new way of speaking about death - "a matter of deciding when a person should die and when a person should be considered dead."
We've gone from death watch to billable treatments.
The notion of patient autonomy is actually applied only within a narrow sphere-decision-making about specific medical treatments offered by individual doctors. Patients and families are given choices only among the options made available by hospital rules, reimbursement mechanisms and standards of care. Death is rarely spoken until shortly before it occurs. Until then tests and treatments continue. There is a huge conflict between aggressive medical care and palliative care with every instinct of the hospital pushing people towards lifesaving treatment.
Old age as a disease rather than a developmental process that includes decline toward death has become a more compelling truth that drives hospital practice today. Since 1913, the last year one could die of "old age, the International Classification of Diseases (ICD) requires a bureaucratic listing of a discrete disease for every death.
The idea of a good death as one that gave the dying an opportunity to say farewell and to prepare to cross the threshold to the afterlife has morphed into a death that is quick, unconscious or at least painless. More recently, the emphasis is on the individual patient's control of the style of death and " 'good' mostly indicates a death that is "aware, pain-free and in which psychological and worldly business are completed."
"The pervasive quest for an emotionally satisfying death exists uneasily with the fact that dying has become a technical endeavor, a negotiated decision and a murky matter biologically. Potential litigation hangs over and even guides health practitioner activity. These developments have an enormous impact on how life at the end of life is made and interpreted."
A difficult book and an important one.
Posted by Jill Fallon at June 28, 2005 2:38 PM | Permalink