Summary:
A dramatic prologue
depicts Joan Kleinman screaming and hitting her husband Arthur in bed. She is
ill with Alzheimer’s disease and does not, for that moment, recognize him. The
following chapters provide a long flashback, beginning with Arthur’s family
background, his youth as a tough street kid in Brooklyn, his medical education,
and his marriage to Joan. We learn of their work in China, travels, and
professional success. Arthur gradually realizes that the US health care system
has become “a rapidly fragmenting and increasingly chaotic and dysfunctional
non-system” (p. 126). Further, he sees a reductive focus on patients as mere
biological entities, ignoring their personal, familial, and cultural natures.
As a result, “Caregiving in medicine has gone from bad to worse.”
Joan suffers
from an atypical kind of Alzheimer’s that increased over “that dismal ten
years” (p. 156) with Arthur providing care to her, at cost to himself. There is
no home health aide, no team approach with doctors, indeed no wider interest in
her care other than the state of her diseased brain. Kleinman vividly describes
the toll on her and on him.
Kleinman is
aware of the privilege he has as a Harvard doctor, well known for his
psychiatric work, his teaching and writing, and his wealth—in contrast to other
patients and families. Some patients go bankrupt from medical bills.
Visits to
nursing homes reveal a wide range of social conditions, contexts, and levels of
care; the best have a sense of “moral care” (p. 200). Joan’s final days are
hard. Supportive family members agree to her living will and healthcare proxy
for morphine pain control only. She dies, apparently “at peace” (p. 232).
In the last
pages Kleinman introduces the notion of “soul” as “essential human
interactions” (p. 238). He discusses some of the limits of medicine (see
paradoxes below) but also praises local efforts to improve humane care, such as
team approaches, uses of narrative medicine, and medical/health humanities
programs.
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