Where to turn?

This morning’s NY Times has a fascinating article about the difficulties people with serious illnesses are having with the overwhelming amount of information that is available to them and about how uncomfortable they are making the choices they often face as "autonomous" decision makers. The article starts with the experience of a woman with ovarian cancer. When given differing suggestions about treatment by physicians and told she would have to choose whether or not to try a therapy that was experimental at the time, she asked:

"Who will decide?" she asked a surgeon from Los Angeles.

The doctor then recited what has become the maddening litany of medical
correctness: "We’re in the outer regions of medical knowledge," he said, "and
none of us knows what you should do. So you have to make the decision, based on
your values."

Ms. Gaines, bald, tumor-ridden and exhausted from chemotherapy, was reeling.
"I’m not a doctor!" she shouted. "I’m a criminal defense lawyer! How am I
supposed to know?"

This is the blessing and the burden of being a modern patient. A generation
ago, patients argued for more information, more choice and more say about
treatment. To a great extent, that is exactly what they have received: a
superabundance of information, often several treatment options and the right to
choose among them.

As this new responsibility dawns on patients, some embrace it with a sense of
pride and furious determination. But many find the job of being a modern
patient, with its slog through medical uncertainty, to be lonely, frightening
and overwhelming.

The article has many stories. It also gives some history on the changes in health care thinking that have led to this situation. Perhaps it also gives some hints about why the public and news media seem to be so skeptical and cynical about medical news these days. The story provides a good argument for patient navigation. There seems little doubt we’ll all need it sometime.

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