Informed patients take control of care


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.

The day she was diagnosed, she drove to two bookstores and bought every book on breast cancer. She tapped into Prodigy, an on-line service. And she felt better. "I knew what things I needed to ask so I wasn't going to be at the mercy of whatever he tells me," Ms. Shockney said. Still, when she arrived at her physician's office, she felt sick to her stomach.

"I'm standing there looking at someone who I felt controlled my life," she said. "I thought, 'The decisions we make together will determine my fate.' "

Then she began asking questions she had written on a piece of paper: What stage do you think this is? Am I going to live?

"I cried," she said. "I would have felt better to just slide the paper over [to him]."

The mystique that has surrounded medicine is eroding partly because of managed care plans' effort to alter treatment patterns -- and save money -- by putting detailed health information in the hands of patients. The strategy goes far beyond the plans' traditional work to promote good health habits.

After Kaiser Permanente distributed a 334-page health handbook to 65,000 members in California, significantly fewer came in for minor symptoms such as headaches, colds and back pain, said Dr. Steven Freedman, the project's director.

Group Health Cooperative, a Washington state health maintenance organization (HMO), found that when patients with benign prostate disease used an interactive video, many chose to watch the disease and wait. Surgeries dropped by as much as 60 percent.

Helping patients decide

This month in Maryland, Cigna HealthCare plans to begin giving videotapes to certain patients who have difficult conditions such as cancer. By describing the anatomy of the problem and the risks and benefits of different treatments, the tapes are intended to help people select options that seem right for them. That might be surgery, or a less expensive approach, such as a drug.

"We're not looking for this program or any other to persuade them against something that's more costly," said Tracy Bahl, general manager for Cigna's mid-Atlantic region. "We want to give the power of decision-making to the patient."

In a competitive market, HMOs can use consumer-friendly videos as a selling point, analysts say.

Cigna's tapes are produced by the nonprofit Foundation for Informed Medical Decision Making, which grew from research at Dartmouth College. Studies found patients weren't getting enough facts and that people with the same conditions were treated differently based on factors such as geography and doctors' training.

Though health information videos have been on the shelves for many years, the tapes are among the first efforts to give patients differing opinions on treatment, said Martha Cunningham, the foundation's administrative director.

But sometimes, patients' increased knowledge can create tension with their physicians.

One woman recalls being told by her physician that she was "reading too much." Others said they were humiliated when doctors dismissed their ideas. For people with chronic or difficult-to-diagnose conditions, the situation can be maddening.

Jane Holm suffered from fatigue and neurological problems for nearly two years before she was diagnosed with multiple sclerosis. The Minneapolis woman said doing research changed how she sees doctors. "We were all raised with, you go into the doctor, and the doctor is God, and you do what they say. I don't believe that anymore."

Some physicians say that patients can be hurt by the exchange of information if they reject a proven therapy to try an alternative they heard about on-line.

"It can play into people's fears and concerns, and that creates problems with the patient-physician relationship," said Dr. Joseph Zebley, a family physician who sets up patient education programs as medical director of Towson Medical Associates. "People will come in with anecdotal reports of untried regimens. . . . Very often the physician has no idea what they're talking about."

Others worry that the information might replace human contact.

"The real education that goes on is in a heart-to-heart conversation between the patient and the practitioner," said Suzanne Boswell, a consultant who critiques doctors' bedside manner.

Consumer advocates warn that some of the information coming from drugmakers and other companies may be little more than marketing material. For instance, in an effort to polish its image, the Pharmaceutical Manufacturers Association recently began distributing 22 million tear-out booklets in magazines.

Curbing health costs

But experts say education is essential to help curb health costs. Better-informed patients ask better questions and avoid making unnecessary trips to the doctor. Physicians report these patients take more responsibility for their own health.

Joanne Dietch, a health care analyst for Towers Perrin, a consulting group, said of the 700 million doctor visits a year, from 50 percent to 80 percent are about problems the doctor can't fix.

"You bring to the doctor's office one thing that all your doctor's years of education pale in comparison to -- that is your knowledge of yourself and your body," Ms. Dietch said.

Consumers increasingly share that knowledge through on-line services and support groups -- chatting, answering frantic messages and comparing symptoms. And when two people in like circumstances connect, both sides feel better.

That was true for the Hopkins nurse, who had one and then another mastectomy. Six months after her first breast was removed, Ms. Shockney noticed a twinge in her neck. She feared the cancer had spread.

Communicating electronically, she found many women who felt the same dread.

"It's an exchange of information and knowledge. Even if it's from someone else, it's still knowledge that helps you, that makes you feel better and empowers you," said Ms. Shockney, who went on to write a soon-to-be-published book about her experiences.

"You kind of regain your sanity. It's not just you thinking that, but hundreds of you thinking the same thing."


* Commercial on-line services such as America Online, Prodigy and CompuServe provide access to support groups and information on various illnesses, from breast and prostate cancer to lupus. Patients can exchange information about symptoms, medications and doctors.

* Through the Internet, consumers can get access on-line to a wide variety of government health documents, a drug database and support groups.

* The U.S. Agency for Health Care Policy and Research is studying the best way to treat many conditions, including acute low back problems, children's ear infections and cancer pain. Call (800) 358-9295 to have guidelines mailed or faxed.

* The National Health Information Center makes referrals to sources of information on health-related issues at (800) 336-4797.

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