How to be your own patient advocate. 

Health management can be an emotional and confusing process, especially if you or someone you love is facing a chronic, complicated, or life-threatening diagnosis. A patient advocate could help lend a voice—and significantly improve the quality of life—to those dealing with a serious health issue by communicating with care providers and administrators, navigating the maze of treatment options, and negotiating hospital bills and insurance claims. Many hospitals and non-profit organizations offer patient advocate services for no extra cost, but you, a relative, or a close friend can also play this important role. Here, a guide to help you stay in charge of medical treatment.  

Become an Expert on Your Case

In 1995, Ben Williams, PhD, a San Diego-based research psychologist at the University of California San Diego, was diagnosed with a brain tumor and given less than a year to live. Rather than accept his caregivers’ diagnosis lying down, Williams researched his own case rigorously and exhaustively, and eventually came up with a cocktail approach similar to ones used to control HIV. Nineteen years later, Williams is alive and cancer-free, and his book, Surviving Terminal Cancer, offers an inspirational paradigm. If you or someone close to you receives a difficult prognosis, be sure to ask questions, get multiple opinions from various medical professionals, and discuss alternative treatments—such as acupuncture, meditation, or even herbal remedies—with your doctor.

Trust Your Instincts and Be Assertive

“Obviously, there’s no shortage of medical information available on the web,” says Mark Renneker, MD, a San Francisco-based oncologist who pioneered his clinical advocacy practice in 1988. “But my advice to patients is to follow your gut.” After thoroughly reviewing medical histories, Renneker explores all available options—including undergoing clinical trials and integrative and alternative treatments—to recommend a course of action, often steering patients towards experimental or emerging modalities. “Don’t be afraid to assert your voice and wishes,” Renneker says. “I’m interested in learning what ideas patients have and trying to help accomplish them.” 

Know When To Hire a Pro

If you find yourself lacking the strength or resources to self-advocate, outsource. Private services (not covered by your insurance) are available for a fee ranging from $100 to $300 per hour, but the emotional relief of having someone else handle the hospital system—while you conserve energy for recovery—may be priceless. “The best thing you can do is plan ahead, find someone you trust, and get set up before something happens,” says Lisa Berry Blackstock, founder of Soul Sherpa, a full-service health advocacy. “If you’ve been dealt a really bad diagnosis, get someone to help,” recommends Trisha Torrey, founder of the Alliance of Professional Health Advocates who also set up Advoconnection, an online directory that connects more than 40,000 patients with advocates yearly. 

“If you were arrested and thrown in jail, you would find a lawyer to help you get out. Even a doctor will you tell you they’d never try to be their own doctor,” adds Torrey. An advocate in your corner will alleviate the stress of managing unfamiliar details. You’ll have satisfaction that you’re getting what you need, and the peace of mind that will let you rest, heal, and get back on your feet.

Sources:

  1. Soul Sherpa 
  2. Apha Advocates
  3. Advoconnection