A new prescription for navigating the medical maze.
A month after having her cancerous thyroid surgically removed, Tracy Cloninger, a 39-year-old Colorado high school teacher and mother of two, hit a roadblock. Her radiation treatments were supposed to have begun two weeks earlier, but her endocrinologist had somehow failed to schedule them. Cloninger realized that someone had to take charge of her case, but in the wake of the surgery, she was too exhausted to do so herself. "I'd lie down for a quick nap and wake up four hours later," she recalls. "I was depressed, anxious, and mentally foggy." So Cloninger took the advice of her father-in-law and hired a professional patient advocate. Four days later, she was in the hospital, receiving the essential treatment.
"You would like to think that if you were diagnosed with a serious condition like cancer or heart disease, your doctors would coordinate and oversee every aspect of your care," says Gail Gazelle, MD, assistant clinical professor of medicine at Harvard Medical School and founder of the Boston-based patient advocacy group MDCanHelp. In the real world, though, "doctors are frequently double- or triple-booked, and they simply may not have time to communicate with your other treating physicians or explain the nuances of all your medications," she says. As a result, it's often up to you, the patient, to push for time-sensitive treatments, locate a specialist, or research clinical trials. Then there's the non-health-related but equally crucial legwork: fighting insurance denials or early hospital discharges, all while being treated for what may be the most significant health issue of your life.
That's where professional patient advocates—who may handle everything from nabbing an appointment with a busy specialist to haggling with insurance companies—come in. Both U.S. News & World Report and CNN recently named patient advocacy to their lists of the hottest careers, although no statistics exist yet on the number of practitioners in the field. Indeed, the profession is so new that it isn't yet regulated—so you need to proceed with caution. But those who have been helped by patient advocates sing their praises. "My advocate was able to fast-track an important treatment at a time when I didn't have it in me to confront the situation," says Cloninger, whose cancer is now in remission.
Thinking about hiring your own personal advocate? Here's what to do first:
1. Determine if you need help. When you come down with the flu, your course of action is fairly clear. But for complicated or life-threatening diagnoses, like cancer or multiple sclerosis, identifying and understanding your treatment options can be challenging, even overwhelming. Consider hiring an advocate if:
You're unable to think clearly. "Some people are in shock after a diagnosis," says Hari Khalsa, the Massachusetts-based advocate Cloninger hired. "Certain drugs used in treatment can also lead to exhaustion, which impacts the patient's comprehension and concentration."
You've been diagnosed with a progressive or degenerative illness. "In this case, time is of the essence, and advocates often possess the contacts and know-how to power through a clogged system," says Nancy Davenport-Ennis, founder and CEO of the nonprofit Patient Advocate Foundation.
2. Know whom you're hiring. "Some advocates have been trained as doctors or nurses, or have earned a master's degree in health advocacy, while others may have just helped Aunt Mary through her cancer treatment," warns patient advocacy expert Trisha Torrey, author of You Bet Your Life: The 10 Mistakes Every Patient Makes. When choosing an advocate, keep in mind that you'll not only be relying on this individual to coordinate your care, you'll also be entrusting her with private medical information.
In general, an advocate with a medical degree is your best bet, according to Gazelle. Physicians may be better able to explain the intricacies of complex treatment options, and your own doctor may be more comfortable providing information to a colleague. A nurse or healthcare social worker may also be appropriate, depending on your needs. No matter whom you choose, "always request references from past clients, and ask about the level of service and results provided," says Torrey.
3. Ask the right questions. You want to make sure that an advocate's specialty aligns with your specific needs. Some are adept at providing emotional support, while others concentrate on red tape issues. For example, physicians or nurses tend to excel at translating complicated medical jargon, but social workers can be better equipped to tackle insurance disputes. Also, ask the advocate if he receives a commission for leading patients to a specific hospital or nursing home, which could compromise objectivity.
4. Weigh the costs. Advocates can charge anywhere from $35 to $200 an hour, but some insurance companies cover the fees (check with your employer's human resources department to see if these services are included in your benefits package).
Free options do exist. The Patient Advocacy Foundation provides pro bono case management and insurance mediation assistance for those with chronic, debilitating, or life-threatening illnesses. Most states also offer resources to help residents appeal insurance claim denials or challenge early hospital discharges (find your State Attorney General's Office at NAAG.org). Currently Connecticut is the only state with a dedicated healthcare advocate's office, but the new federal healthcare reform bill has earmarked $30 million in grants to create similar agencies.