Informed patients take control of care

April 16, 1995|By Diana Sugg | Diana Sugg,Sun Staff Writer

In the Wisconsin cold, paramedics tried for a half-hour to revive Gail Stollenwerk's mother. Finally, at 7:57 p.m., they declared her dead.

Nearly a thousand miles away, Ms. Stollenwerk learned of her mother's sudden death. She made phone call after phone call. And she couldn't figure out why her mother had died on the way to a hospital.

So in the dark of her Philadelphia apartment, she signed on her computer. Staring into the bright monitor, her hands shaking, she pulled up medical information and began posting questions.

In often equally dramatic circumstances, millions of Americans like Ms. Stollenwerk are now reaching out to the Internet, videos, libraries and dozens of other sources to get the knowledge -- and sometimes the support -- they aren't finding in the modern health care system. Some physicians warn this strategy can backfire, particularly if patients reject proven therapies.

But many people are upset or unhappy with the amount of information physicians give them. Patients feel rushed by doctors. They leave confused. Or they can't get doctors on the phone.

"I called her doctor twice, and he refused to call me back," Ms. Stollenwerk said. "He told me to call during normal business hours."

That's when the 43-year-old government worker decided to take things into her own hands.

As never before, she and others have the tools to do that. On-line services, in particular, give patients and families quick access to vast amounts of information.

By daybreak, Ms. Stollenwerk had gathered several telling facts. She realized that side effects from a single pill could have killed her mother.

"Consumers are just on the edge of a real information explosion," said Dr. Carolyn Clancy, director of primary care for the U.S. Agency for Health Care Policy and Research. More than 5 million people have requested the agency's guidelines on how to treat conditions such as depression, ulcers and heart failure.

The 1990s, experts say, is the decade Americans finally are becoming knowledgeable about health care. And that is profoundly shaping medicine -- from subtleties in the way patients and doctors interact, to measurable differences about how large groups of people are treated.

Managed care plans, the Clinton health reform effort and pressures from the baby boom generation have helped spur the change.

Patients are interviewing physicians, hiring and firing them. They're helping direct their own care by keeping up on treatments, and in the process, changing the often paternalistic doctor-patient relationship to more of a partnership.

"Medical care is the last bastion that's falling. It's falling grudgingly," said Michael Donato, director of projects for the People's Medical Society, a consumer health care group.

At the Johns Hopkins University School of Medicine, a new curriculum is focusing students' attention on relationships with patients. But managed care often makes it impossible for doctors to carry through on that training, said Dr. Catherine DeAngelis, the school's vice dean for academic affairs and faculty.

Raising expectations

"It's crazy," she said. "On the one hand, you're raising expectations and raising the level of understanding of patients regarding disease process or illness, and on the other hand corporate medicine is forcing physicians to just crank out patients. You don't have the time to respond to patients."

A Woodbine woman, who was referred to a doctor for treatment of Lyme disease, said she waited several weeks to see him. Then she discovered he knew less than her research had led her to expect.

"You're sick. You think you're going to a doctor who will help you," said Kathrine Fleshman. "I was crushed." She found a new doctor.

Some people end up diagnosing themselves.

Will Johnston, a retired economics professor at the University of Baltimore, said he turned to the library when doctors couldn't figure out why he started to cry in movies, began losing hand control and developed dandruff. His research led him to believe that he had Parkinson's disease, and physicians later confirmed that. Now the Salisbury man volunteers at Peninsula Regional Medical Center so he can use its medical library. And he puts out a newsletter for other patients.

"I know people who have bought computers just to get more information about their diseases," he said.

Doing research gives some people the chance to read the same sentence twice, to mull something over, to cry in privacy. It can be a powerful experience.

"It's scary. You suddenly realize that what you're now reading is now you," said Lillie Shockney. As a nurse at Johns Hopkins Hospital, she cared for women who had mastectomies. But she never thought breast cancer would strike her.

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