Patients Turn to Advocates, Support Groups and E-Mail, Too

[Justin]

August 14, 2005
http://www.nytimes.com/2005/08/14/he...atientbox.html
Patients Turn to Advocates, Support Groups and E-Mail, Too

By JAN HOFFMAN
Battle-hardened by the medical system, patients have become pretty good at taking care of one another. If they are not learning enough from their doctors about diagnoses and treatment options, they can turn to organizations that offer support and education programs for specific illnesses. Doctors can often make recommendations about which of these groups are reliable.

Another worthy resource is the patient advocate, a relatively new role with fluid responsibilities. Many hospitals employ advocates to resolve disputes between patients and staff members, including doctors; they can also help patients who face difficult treatment decisions.

Privately hired patient advocates can, among other things, research medical options, make appointments and negotiate with insurance companies. The advocates, who include doctors, nurses and lawyers, charge anywhere from several hundred dollars for a consultation to the $30,000 initiation payment and $25,000 annual fee for a soup-to-nuts service for the wealthy. There are also nonprofit advocacy centers. Patients can find advocates through the Internet or through support programs for their conditions.

But the practice is not regulated, so patients should "check credentials and find an advocate who will empower them rather than push them in a specific direction," said Marsha Hurst, director of the health advocacy graduate program at Sarah Lawrence College in Bronxville, N.Y.

Insurance companies also want to help patients manage their health care more efficiently, in order to keep costs down. Many companies use "disease management teams" who contact patients directly, largely bypassing the physician, a gesture that some patients view with skepticism. Typically, nurses from the team periodically call patients with chronic conditions like asthma, diabetes and back pain, and send reports to the doctor. The nurses can answer questions and monitor adherence to a treatment plan, tasks that most physicians do not have the time to do themselves.

Reviews of disease management teams are mixed. Jean Faber, a patient in Verndale, Minn., with back problems, credits her insurer's team, American Healthways, with her turnaround. Ms. Faber said her internist told her that gastric bypass surgery was needed to alleviate her back pain, but she refused the surgery. A disease management nurse helped her figure out a diet and exercise plan instead. "The nurse called once a month," Ms. Faber said. "I felt like I had a partner."

She lost 178 pounds in two years and is now pain free.

But Richard Roberts, a family physician in Belleville, Wis., has misgivings. Insurance company teams can leave a doctor out of the loop, he said, and the quality of their reports is uneven. He referred one patient with multiple health problems to her insurer for help. A year later, she called him, complaining because she had to deal with a different team for each of her problems: "It's like having four full-time jobs. And I already have a job. I felt better when it was just you and me."

Doctors are keenly aware of the rift between themselves and their patients. A series of critical reports from the Institute of Medicine, an arm of the National Academy of Sciences, urged doctors to embrace "patient-centered care," an approach that respects the patient's background and preferences. As of last year, all graduating medical students must pass an extensive exam in patient communication to complete their licensing requirements.

Doctors who do not have the time to talk to patients are increasingly turning to e-mail. But patients need to be aware that the confidentiality of e-mail messages is not assured, and, given the hectic nature of people's lives, a timely response may not be, either.

More profoundly, many doctors have been trying to reconnect with patients through a philosophy of conversational engagement known as shared decision making, in which doctor and patient work together to choose a treatment.

Shared decision making presumes that there are two experts in the consultation room: the doctor may know best about medicine, but patients are the experts about their own priorities. Patients who feel intimidated in medical settings need to learn to speak up, even as doctors are being trained to gently elicit information that will help lead to a decision about treatment.

"What options are covered by your insurance?" a doctor might ask. "Can your job or family obligations permit a short-term but time-intensive treatment?" "Do you prefer a strategy of watchful waiting or a scorched-earth medical approach?" "What outcome do you want from knee pain treatment - to run four miles a day or just to sit comfortably at a desk?"

Lonely, overwhelmed patients seem to hunger for these conversations as much as doctors do. Patients are proud to be independent-minded consumers, said Debra Roter, a medical sociologist at the Johns Hopkins Bloomberg School of Public Health, but they also value the guidance of a caring doctor.

Professor Roter said, "The pendulum is moving back."


Copyright 2005 The New York Times Company

[Harrison]

Thx Justin, this is a nice article. I think folks here figured out some of these issues out the hard way; and our health care system has a long way to go for sure. But progress is being made in many ways!

[ans]

Great post Justin.

[luvmysibe]

I can certainly relate to some of the information shared in this post. Fortunately for me, my workers' compensation insurance carrier provided a fabulous nurse case manager 6 months into my injury. Her direction and support helped me navigate the medical system maze.