To reduce drug errors, Parkinson's patients are educating hospitals

Copied from The Northwest Parkinson’s Foundation Weekly News Update

Christopher Snowbeck

www.twincities.com - Hy Carpenter must take his medication for Parkinson's disease six times a day in three-hour intervals.

If he's late in taking a dose -- even by a few minutes -- the 73-year-old St. Paul man can experience "freezing," as his legs slow to the point where he can't keep walking.

Avoiding such problems can be especially difficult for Parkinson's patients during a stay at a hospital or nursing home, where they can encounter yet another medication risk.

Earlier this year, Carpenter wound up in an emergency room with hallucinations and schizophrenic attacks after he received the wrong type of drug during a short stay at a local convalescent home following knee surgery. His family isn't sure how it happened, but experts say physicians who lack expertise in treating patients with Parkinson's can unwittingly prescribe drugs that should be avoided.

As doctors, hospitals and patient groups keep looking for ways to combat medication errors and adverse drug events, the National Parkinson's Foundation is arming patients like Carpenter with a kit called "Aware in Care" that's designed to help prevent problems. More than 1,000 kits have been distributed in Minnesota thus far, and experts say they can be key to keeping patients safe during hospitalization.

Medication errors are quite frequent in people with Parkinson's disease, which probably occur more often than they do in other conditions," said Dr. Paul Tuite, a neurologist at the University of Minnesota. The kits are important, Tuite said, because their goal is to "improve the quality of health care, which is as important as coming up with cures."

Parkinson's disease is a disorder of the brain that leads to tremors as well as trouble with walking, movement and coordination. It is one of the most common nervous system disorders of the elderly and affects an estimated 20,000 people in Minnesota. There is no known cure.

The disease occurs with the slow destruction of nerve cells in the brain that make a chemical called dopamine. Without the chemical, the brain cannot properly send messages related to movement, which leads to the loss of muscle function.

Patients with Parkinson's disease aren't alone among those in the hospital who face risks from medication errors and adverse drug events. But a small study published earlier this year found that Parkinson's patients experienced medication problems in 44 of 55 hospitalizations studied.

Researchers from the University of Calgary found that hospitals failed to seamlessly continue the usual administration of Parkinson's medications. Plus, many patients received medications that could make their condition worse.

"With Parkinson's disease, you have to have your medications on time," said Julie Steen, executive director of the National Parkinson's Foundation of Minnesota. "When you're in the hospital, 'on time' can mean getting a drug within the hour. But with Parkinson's medications, 'on time' means within a few minutes."

The Aware in Care kit is a pouch full of information that's provided to patients at no charge. It includes a prescription pad with reminders about everything from the need for timely drug administration to the specific names of medications that should be avoided; patients or their loved ones can tear off a sheet and hand it to a caregiver.

The kit also includes a medication list on which patients are told to provide information about their drugs and share it with hospital workers. There's also a medical alert card, a Parkinson's ID bracelet and a thank-you card that patients can leave behind for caregivers.

The kit is intended not just for patients, but also for friends or family members who provide support during hospitalization.

"It's almost up to families to know the medications and help manage them," said Dr. Brooke Van Dyke, a physician at HealthEast's clinic on Grand Avenue who treats Hy Carpenter. "The kit can make even a good care facility do a better job because you've got everything right there."

"I used to do deliveries and you'd tell pregnant women to have a packed bag by the door," he added. "This is like that, plus some."

Carpenter received his Aware in Care kit earlier this year from a Parkinson's disease support group at Bethesda Hospital in St. Paul. It helped Carpenter and his wife, Nan, talk with doctors and nurses about how to make sure he received timely doses of his medication while undergoing his knee surgery this summer.

Carpenter usually swallows one of his key Parkinson's medications. But with planning, he was able to receive a dissolvable form of the medication immediately following surgery, when he wouldn't have been able to swallow a pill.

"The hospital really was spectacular," said Carpenter, who was treated at St. Joseph's Hospital in St. Paul.

Nan Carpenter said she further realized the need for the kit during her husband's subsequent recovery at a convalescent home. Nan Carpenter did not want to name the facility, but she said she was dismayed when her husband received a drug that doesn't safely mix with his Parkinson's medication and wound up at the ER.

The situation shows the delicate situation families and patients find themselves in when trying to prevent medication errors.

First, there's the unsettling realization that you might need to educate caregivers about the potential for adverse drug interactions, Nan Carpenter said. Then, there's the understanding that you need to communicate with caregivers in a way that's insistent but also respectful.

"You have to be an advocate," Nan Carpenter said. "You have to stand up and make a little noise. But it has to be done with respect. ... The kit helps because when you're in a hospital, you're in a foreign place."