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Philadelphia Inquirer: Possible cancer diagnosis shows downside of shared electronic medical records

While shared and electronic medical records have many benefits, they carry unacknowledged risks. One is that the primary diagnosis becomes a patient’s identity, even when that diagnosis is in error and anxiety-provoking for the patient and family.
When my father was first hospitalized, he was a relatively healthy 93-year-old who could get around on his own, was mentally lucid, and could even drive. But one day he went to the emergency room weak and with jaundice. He had an obstructed biliary tract and needed a cholecystectomy, or gall bladder removal. During his treatment, the doctors examined the insides of his biliary tract using a technique called “biliary brushing” — and then informed me and my father that he had a “possible diagnosis” of pancreatic cancer. The surgeon met with us and explained that at his advanced age, treatment for pancreatic cancer would be worse than the disease, and we mutually agreed that keeping a lookout for symptoms was the best approach. Dad put the cancer diagnosis out of his mind, because he had other more pressing concerns — getting back his strength, being able to eat again, and recovering from the rapid deconditioning that occurs when a very old person is in a hospital bed for eight days.
Dad left the hospital greatly weakened and spent the next three months in a skilled nursing facility just down the hall from his apartment. I accompanied him on follow-up visits, first with the gastroenterologist. The physician assistant saw him first. When she opened up the medical record on a computer screen, she said, “I see you have pancreatic cancer.” He was taken by surprise, since he thought he was simply having a follow-up visit for the stent placed in his biliary tract. But the cancer was the headline on the medical record — the most important problem that defined him. Other appointments followed, with the surgeon and oncologist. I asked them for more information about the pancreatic cancer diagnosis.  What were his “numbers” or “levels” from the biliary brush cytology? Was there any staging information? As a public health professional teaching in medical and nursing schools, and conducting cancer control research, I wanted more information. I was promised specifics, but never received them, despite my persistence. Dad’s next visit to the ER occurred a few months later, when he was incoherent after a fall from his bed in the skilled nursing facility. The first reaction by the ER doctors and nurses — he has pancreatic cancer. As it turned out, he had a hip fracture and internal bleeding. He was found to have a healthy enough heart to go ahead with a hip replacement, in the hope that he could walk again. Read more at the Philadelphia Inquirer.