Hospital Dangers for Patients With Parkinson’s
Read this New York Times article from the New Old Age blog about the danger people with Parkinson's face in the hospital and how the National Parkinson Foundation's Aware in Care kit can help.
It was supposed to be a short stay. In 2006, Roger Anderson was to undergo surgery to relieve a painfully compressed spinal disk. His wife, Karen, figured the staff at the hospital, in Portland, Ore., would understand how to care for someone with Parkinson’s disease.
It can be difficult. Parkinson’s patients like Mr. Anderson, for example, must take medications at precise intervals to replace the brain chemical dopamine, which is diminished by the disease. “You don’t have much of a window,” Mrs. Anderson said. “If you have to wait an hour, you have tremendous problems.” Without these medications, people may “freeze” and be unable to move, or develop uncontrolled movements called dyskinesia, and are prone to falls.
But the nurses at the Portland hospital didn’t seem to grasp those imperatives. “You’d have to wait half an hour or an hour, and that’s not how it works for Parkinson’s patients,” Mrs. Anderson said. Nor did hospital rules, at the time, permit her to simply give her husband the Sinemet pills on her own.
Surgery and anesthesia, the disrupted medications, an incision that subsequently became infected — all contributed to a tailspin that lasted nearly three months. Mr. Anderson developed delirium, rotated between rehab centers and hospitals, took a fall, lost 60 pounds. “People were telling me, ‘He’s never going to come home,’” Mrs. Anderson said.
He did recover, and at 69 is doing well, his wife said, though his disease has progressed. But his wasn’t an unusual story, neurologists say.
Any older person faces dangers in a hospital, but for people with Parkinson’s — largely a disease of older adults — they’ve proved particularly hazardous. “Patients were telling us these horrendous stories,” said Dr. Michael Okun, a University of Florida neurologist and national medical director of the National Parkinson Foundation. “Even in good hospitals. Even in my own hospital.”
People with Parkinson’s are hospitalized much more frequently than others their age, and their stays last longer. A common reason: “These patients aren’t getting their meds on time, and they’re not getting the right meds,” Dr. Okun said. Some need to take their dopamine-replacing drugs as often as every two hours, a schedule at odds with standard hospital regimens.
Worse, some commonly prescribed drugs — including Compazine and Phenergan for nausea, and Reglan to stimulate bowel function after surgery — actually block dopamine and worsen symptoms in patients with Parkinson’s. Then they are at risk for falls and fractures and for aspiration pneumonia.
Moreover, any infection can lead to delirium, because Parkinson’s patients have lowered cognitive reserve. But the drug Haldol, which hospitals frequently use to reduce confusion, is also a dopamine blocker. “Haldol is the worst drug you can give a Parkinson’s patient,” Dr. Okun said. Over all, “it can be a real mess.”
With proper treatment, most Parkinson’s patients can live long and good lives, “but stressing them with a fall or an infection or anesthesia can make them fall apart,” he said, turning supposed in-and-out hospitalizations into weeks of illness and decline. Not everyone is as lucky as Roger Anderson.
What will help, in the long run, is educating hospital staffs about Parkinson’s and changing the way they function. And yet — isn’t this a sad commentary? — “it’s slow going to effect change in the health care system, and in the meantime a lot of people are getting hurt,” Dr. Okun said.
So, unfair as it may be to put the onus on patients and families, the foundation is offering a free Aware in Care kit that includes a bracelet identifying the wearer as a Parkinson’s patient and fact sheets and reminder slips to hand out to doctors and nurses. “We want to arm people,” Dr. Okun said.
The Andersons have used the kit for subsequent hospitalizations and found it useful. And Mrs. Anderson reports that now, years after their three-month nightmare, hospitals actually encourage her to bring along her husband’s medications and to administer the pills herself as his schedule demands.
You might argue that the hospital is magnanimously allowing her to do the job its staff is supposed to do, but she’s fine with that. It beats the alternative.
— Paula Span
© 2013 The New York Times Company