Help Wanted
Are medical advocates necessary to help navigate today’s complicated and myriad health care options?

By Kristen Laine

When occupational therapist Karen Grant started having digestive problems in 1991, she couldn’t imagine what was wrong. “I couldn’t eat, and I was getting sick and losing weight,” says the Fort Collins, Colorado, resident, now 38. Grant ended up in the hospital, where doctors ruled out Crohn’s, colitis, and celiac diseases and eventually diagnosed irritable bowel syndrome (IBS). The doctors sent her home with medication and a mission to eat more fiber. “But that didn’t really work,” says Grant.

Wanting to avoid medication, Grant sought holistic ways to treat her condition. “I had all these food allergy tests and elimination diets, and I lost more weight,” says Grant, whose name, along with those of other patients in this story, has been changed. Finally, eight years later, after visiting as many as 15 doctors and going on disability because of her illness, Grant received an accurate diagnosis: She had fibromyalgia and chronic fatigue syndrome.

Why did Grant have to wait so long? The changing nature of health care is one reason. More and more, people are feeling disconnected from their health care providers and confused about which way to turn when they need help.

The case for medical advocates
Grant might have benefited from a medical advocate, a professional who helps patients connect the dots among illness, diagnosis, and treatment recommendations.

As recently as a generation ago, people would visit the same medical practice for many years. The doctors and nurses knew their patients’ lifestyles, home environments, work settings, and general attitudes, as well as their comprehensive medical history. Making a house call, sitting at the bedside of a sick patient, comforting loved ones—these interactions were fundamental to a doctor’s job. “A generation ago, one doctor saw your whole family,” says Terry Davis, PhD, professor of medicine and pediatrics at Louisiana State University Health Sciences Center in Shreveport and a frequent speaker on health literacy issues.

Today fewer doctors are generalists, and even fewer still are willing to make house calls. Physicians have become more specialized, and patients typically see several doctors for different ailments. And rarely do these doctors speak with each other.

This trend has changed the role a patient plays as he or she navigates the health care system. “People [now] consider themselves health care consumers,” says James Hughes, PhD, health care policy analyst, teacher, and associate director of institutional research and planning at Trinity College in Hartford, Connecticut, “and they are also more willing to adopt adversarial stances with their doctors.”

Hughes has conducted numerous patient-doctor surveys; in them, patients frequently complain that they don’t like seeing doctors for only 15 minutes on average. Other studies indicate that some doctors are seeing their patients for as few as 5 minutes per visit. Researchers are also beginning to explore the growing “health literacy gap”—the difference between what a patient needs to know about his or her health choices, medications, and treatments, and what the patient actually understands.

Yet advocating for your needs is one thing when you are well; when you are sick, it can be daunting.

How medical advocacy works
The field of medical advocacy is fledgling at best, but a few structures are in place to help patients manage different aspects of their health care.

Hospital-appointed advocates coordinate patient services and often serve as mediators or educators for a patient. These advocates, although helpful, must balance the needs of the patient with the needs and resources of the institution paying their salaries. The Mayo Clinic, for example, assigns an ombudsman to each patient who comes to the hospital; the ombudsmen follow their patients through their entire stay. Other institutions have created positions variously known as case managers, care managers, or continuing care managers, all of whom try to improve the outcomes both for the patients and the institutions.

Condition-based advocates fill another big void for certain patient populations: people diagnosed with cancer, chronic illnesses such as diabetes, or rare diseases. These advocates usually work through nonprofit organizations. For example, in 2001, the Immune Deficiency Foundation hired a patient advocate manager to help patients understand their diagnosis and treatment options and locate knowledgeable physicians.

Condition-based advocates can be valuable tools for patients looking for answers about their specific disease; however, the relationship usually is developed over the phone or via e-mail, and the advocate can’t come along to a doctor’s appointment. Condition-based advocates can be found by researching a particular disease online, then contacting the organization to inquire about an advocate.

Then there are the private providers, whose personal services seem to meet the patients’ needs best—yet they are the type of patient advocate you are least likely to encounter. Joyce Fama, owner of I Care based in Norwalk, Connecticut, is a rare example. The 68-year-old former medical assistant and medical insurance examiner got the idea for her business after witnessing her mother’s experience in a nursing home. “I realized that I needed to visit her at least twice a week to make sure she got the right level of care,” says Fama. “I checked for bedsores. I checked on what she was eating.

I made sure she hadn’t fallen.” Fama saw the gap in patient care and knew that she could help others improve their own care.

Fama’s role as patient advocate includes ensuring that doctors listen to and answer her clients’ questions, checking on the care people receive in hospitals and nursing homes, and researching care options for people diagnosed with more serious diseases. “People are so vulnerable when they are in the hospital, when they are sick,” she says.

Resources

For information on alternative therapies and naturopathic physicians:
The American Association of Naturopathic Physicians; www.naturopathic.org; 866.538.2267

For information about complementary and alternative medicine:
National Center for Complementary and Alternative Medicine; http://nccam.nci.nih.gov/; 888.644.6226

To research health topics online:
www.webmd.com

For questions about insurance, debt management, and job discrimination:
The Patient Advocate Foundation; www.patientadvocate.org; 800.532.5274

Source: Darlene Saler, Dartmouth Hitchcock Medical Center, Lebanon, New Hampshire.

Lynne Hobbs of Westport, Connecticut, is one person Fama has helped. Hobbs, 78, hired Fama when she began suffering severe pelvic pain on Christmas Eve in 2002. “I’m normally an independent senior, and I’m still working full time,” says Hobbs. “But I didn’t feel comfortable driving [to the doctor].” Instead, Fama drove Hobbs to her doctor’s office and sat with her through the appointment. “Joyce was wonderful,” recalls Hobbs. “I was with the bladder specialist, and he really wanted to send me home in that condition. He didn’t want to do anything else. I was telling him that I needed to be hospitalized because I was in such pain. But Joyce interceded. She said, ‘No, we’re not going home.’ I hate confrontation—especially if you’re not feeling well—but she’s good at it. I had seen three doctors in two weeks for this, and nobody was getting to the problem. If it hadn’t been for Joyce, how would I have gotten there and back home in that condition?” Hobbs finally was diagnosed with an inflamed pelvic bone joint and a spastic bladder and, in the end, got the medication she needed.

Fama also helps her clients navigate medical procedures. Last fall, she helped a man prepare for his double knee surgery. Before the operation, Fama took him to his orthopedic surgeon appointment, went into the consultation room with him, and pulled a list of questions for the surgeon out of her purse: Who will be allowed in the room during the surgery? What kind of anesthesia will be used? What kind of pain medication will he receive? As the doctor answered each question, Fama carefully wrote down his responses. By doing so, Fama allayed many of her client’s fears during a single doctor’s appointment. She also visited her client in the hospital following the surgery. “He ended up having a very positive experience,” she says.

Not yet covered by insurance
Right now such medical advocates are rare, possibly because health insurers haven’t yet realized their benefit. Fama charges $70 for an initial 45- to 70-minute interview, then $50 an hour after that, a bargain, she says, considering geriatric case managers earn about $100 an hour. Yet because there is no third-party reimbursement, patients must pay for Fama’s services out of pocket.

“It would be wonderful” if insurance companies would reimburse patients for her services, says Fama, who guesses it will take Medicare a long time to recognize the cost advantage of patient advocates. Meanwhile, Fama attracts clients who can pay outright for her services, and who don’t require lengthy long-term care.

But can patient advocates such as Fama really help to streamline and improve the existing health care system, shed light on effective alternative treatment options, and guide apprehensive patients through a more positive overall medical experience? Researcher Hughes believes the definitive answer will come in the near future. “Patient advocates are what we call a process measure,” he explains. Institutions can quickly determine whether, for example, patients with advocates had fewer readmissions, better clinical outcomes, or higher customer satisfaction than patients without them.

“We will see if patients are diagnosed better, get better faster, and are more likely to comply with treatment regimens,” says Hughes. “If this is the case, patient advocates will not merely bridge the gaps in the system, but they will be asked to play expanded roles.” He won’t be surprised if that happens. After all, “we all want someone who’s on our team.”

Freelance writer Kristen Laine is a frequent contributor to Delicious Living.