Stories

Jan Rabinowitz of Atlanta

Failures to coordinate care and medication for her husband’s Parkinson’s disease turned his hospitalization for heart surgery into "an ordeal."

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Not long after Atlanta native Jan Harris and Brooklyn native Allen Rabinowitz were married in 1989, Allen began noticing some new aches and pains and, later, a slight, occasional trembling in his hands. Allen, a magazine feature writer, brushed it off; it was years before he said anything to Jan, a market researcher. In 1998, actor Michael J. Fox went public with his diagnosis of Parkinson’s disease — and months later, at age 48, Allen also was diagnosed with the degenerative neurological disorder.

By 2001, Allen had developed additional and more severe Parkinson’s symptoms. Unable to meet his magazine deadlines, he had to stop work and go on disability. Over the next few years, he made the rounds of specialists who could not explain his persistent shoulder pain — until tests revealed blockages in coronary blood vessels. Jan drove him straight from the cardiologist to the hospital and two days before Thanksgiving 2007, Allen underwent a double bypass operation.

The surgery went smoothly and doctors said Allen was recovering well, so Jan went home to sleep. At 3 o’clock Thanksgiving morning, "the hospital called and asked me to come help calm my husband down," Jan recalls. "The neurologist my husband sees for Parkinson’s wasn’t on staff at this hospital, so the cardiologist had told me that they would get the staff neurologist involved in Allen’s care. But they didn't.

"Allen was having what they called 'ICU psychosis' and he had been given some Ativan, which is contraindicated in Parkinson’s disease patients. Allen was convinced that everyone in the hospital was an imposter trying to trick him, and his yelling was waking up the whole unit. I sat with him and held his hand and talked with him, and eventually he fell asleep. At some point I said to the nurse, 'He wasn’t supposed to have that medication' and she said something about not giving him very much so they thought he’d be okay.

"The next night he was upset again and at that point someone gave him Haldol — which is even worse for Parkinson’s disease patients. After that — and after I threw a fit — they called in a neurologist, who echoed my statements to the hospital staff that Haldol was a big no-no. It took a few days to get the Haldol out of Allen’s system, and it probably was the reason that he had to spend extra time in the critical care unit."

Jan says that during Allen’s 11-day hospitalization, he not only received medications that were contraindicated given his Parkinson’s disease, but he did not receive the medications he needed to manage that disease in a timely manner. Allen was on five prescription medications at that point, she says, "and Parkinson's patients must have their meds at regular intervals," but some doses were delayed because the hospital didn’t have the medications on hand. Jan says she even posted a sign in Allen’s hospital room specifying which medicines were to be avoided and which were to be given, in what dosages at what times — "not that it did any good." allen and jan rabinowitz

"It was an ordeal, all of it," Jan says now. "I found it disconcerting that hospital staffs are not familiar with what drugs should not be given to patients with certain conditions, nor how existing medications should be administered. And doctors are far too reticent to communicate with each other."

In the three-plus years since the bypass surgery, Allen has been seen regularly by a handful of practitioners, Jan says: an internist, a neurologist, a cardiologist, a gastroenterologist for the digestive issues associated with Parkinson’s, and a speech pathologist for his Parkinson’s-related difficulties swallowing. "Which doctors have to get involved depends on whatever we’re treating at the time," she says. "We just try to make sure that every time anything happens, all the doctors get copies of everything. Whether everybody reads them, who knows."

During the last year, Allen has endured increasingly severe dyskinesia, the uncontrolled movement that is a hallmark of Parkinson’s advance. After four months on a waiting list, Allen recently began a series of intensive evaluations — with five more specialists — to determine whether he is a candidate for deep brain stimulation (DBS). The surgical procedure, in which electrical impulses are delivered to an area deep in the brain that controls movement, is particularly helpful in addressing dyskinesia. If Allen is accepted for the procedure, Jan says it might be scheduled within the year.

While Allen’s health has worsened since his last hospitalization, "I think the whole situation in hospitals is worse now, too," Jan says. "Many primary care physicians don’t even come to the hospitals any more, you’re assigned hospital-based practitioners. And I don’t know who talks to whom." As the couple waits for the outcome of the DBS evaluation, Jan is planning how she’d support Allen during the hospitalization: asking questions, monitoring medications, making sure that practitioners are communicating. "I know," she says, "that I will have to be extremely pro-active. And if necessary, demanding."