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 have a difficult decision to make, but your doctor isn't offering proper guidance or taking your concerns seriously.
- 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.