Part of the work-up ordered by the gastroenterologist to try to find out what was wrong was a colonoscopy—even though the prep for this procedure exacerbated her symptoms.

A stool culture had also been ordered, by the infectious-disease doctor. This result came back showing infection with a nasty bug called C. difficile, which causes diarrhea and pain. But the gastroenterologist wasn’t aware of these results.

“I was the one who told the gastroenterologist that the results were back and what they showed,” Ken told me, in a rather aggrieved tone.

The colonoscopy was immediately canceled, but not before the prep had significantly aggravated his wife’s condition.

Ken’s role in knowing what was going on and sounding the alarm is a great example of the benefit of an alliance between a patient—or a patient’s relative—and the health care team.

This kind of alliance is promoted by the Josie King Foundation, a group born out of tragedy.

A TRAGEDY’S SILVER LINING

Josie King was an 18-month-old admitted to Johns Hopkins Hospital with severe accidental burns from bath water, the foundation explains. She was getting better, but died from an inappropriate dose of narcotic pain medicine, given despite a verbal order to the contrary.

Turning her grief and anger to good use, Josie’s mother, Sorrell King, created the foundation “to prevent others from dying or being harmed by medical errors.”

She promotes an alliance between health care workers and the patient to share information about the patient’s condition.

One particular tool the foundation promotes is the Patient Care Journal. This is a booklet—available through the foundation’s website or downloadable as a free app—in which the patient keeps a record of information such as:

-- What medicines are being given.

-- What tests and treatments have been ordered.

-- Who is on the medical team.

-- Any other information that will help monitor progress or know whom to speak to with any concerns.