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

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http://www.nytimes.com/2005/08/14/health/14patientbox.html?pagewanted=print

> Patients Turn to Advocates, Support Groups and

> E-Mail, TooBy 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

> 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 , 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 s

> Hopkins Bloomberg School of Public Health, but they

> also value the guidance of a caring doctor.

>

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