NOTES
Introduction: Diagnosing Twenty-First-Century Health Care
1 I collected most of the data reported here. Lakshmi Fjord, Ann Russ, and Janet
Shim, research associates for different phases of this project, collected addi-
tional data included here. I am indebted to them for their astute observations
and probing interviews, which extended the scope of this project.
2 This way of thinking about ethics, although it moves away from well- known
conceptions and uses of bioethics, emerges from that older kind of ethics, in-
cluding the debates in the 1960s about rationing kidney dialysis to “deserving”
citizens and the concern, beginning in the 1970s with Karen Quinlan, about
who has the authority to withdraw life- sustaining treatment from whom and
when. See chapter 1 for additional details about the ethical field.
3 Both the quandary for patients and families about enough or too much treat-
ment and when to stop and the forces of the health care system that perpetuate
and strengthen the impasse that hinders reform have been developing for a
long time. I examined one feature of this quandary in . . . And a Time to Die:
How American Hospitals Shape the End of Life, my study of hospital death and
the social and structural forces that shape the ways many of us die in the United
States. In that volume I explain how, unless and until someone says stop, the
bureaucracy of the American hospital itself “moves things along,” channels
both doctors and patients toward the most intensive, aggressive treatments—
even for the very frail and el derly, even when people claim they do not want
those treatments, even when death (which is rarely mentioned or expected)
is imminent. But what happens in the hospital when a patient is near death
provides only one piece of the answer to why the default setting of medicine is
more treatment, and it is only one example of how that setting affects so many
of us.
Ordinary Medicine provides a companion volume and a prequel, so to speak,
to . . . And a Time to Die in that it examines those upstream connections that
shape the or ga ni za tion of medical treatments to which patients respond. While
here too I portray interchanges among doctors, patients, and families, it is in
encounters that happen well before the very end of life. Nevertheless, because
my focus is on life- threatening conditions and their treatments, death is always
a player on the stage.
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