Become an Empowered Patient

Here's how to actively manage your healthcare and speak up for your rights when you're ill

In September 2006, Crystal Wyre-Daugherty discovered a lump ­during her monthly self-breast exam. She wasn’t alarmed because she’d had a biopsy a few years earlier in which a benign cyst was removed. However, in November of that year, after her doctor ordered a mammogram, ultrasound, and biopsy, she was told she had Stage I breast cancer that a few months later became Stage IIA.

“After losing my mother to breast cancer 17 years prior to my diagnosis, I was determined to take control of my health and, ultimately, my life,” says Wyre-Daugherty, a 43-year-old Decatur, Georgia, resident. “It was necessary for me to research my condition, get clarity from medical professionals, understand my options, and pray for direction.”

Your doctor’s office can be intimidating. The various degrees on the wall and the doctor’s pressed, white coat might set you on edge. But visits don’t have to be a daunting experience. Our experts’ advice can help you become a more vocal and informed patient.

Educate yourself about your illness.
Because her mother had experienced breast cancer, Wyre-Daugherty knew she had to research the disease not only for herself, but for her children—Kierra, 17, Keenan, 14, and Chanel, 9. Websites for the American Cancer Society (cancer.org), Breastcancer.org, and WebMD (webmd.com) were her main sources of information. She thought of specific questions for her doctor and jotted them in a notebook she kept in her purse. “First, educate yourself about the ailment.  Then, write down all of the questions and take them into the exam room with you,” says Kevin Flynn, president of HealthCare Advocates Inc., an organization that assists consumers with problems regarding healthcare.

Schedule your appointment at an optimal time. You want to have your doctor’s undivided attention to get your questions answered in what often is a 10- to 15-minute visit for routine checkups. Dr. Janet Bivens, owner of Kendrick Family Practice in Atlanta, says it’s generally best to be the first appointment of the morning, the first after lunch, or the last of the day. Trisha Torrey, author of You Bet Your Life! The 10 Mistakes Every Patient Makes—How to Fix Them to Get the Health Care You Deserve (Langdon Street Press; $16.95), offers another suggestion: “Avoid the days around holidays and weekends.” Medical personnel may not be as focused on patients during those times.

Form a partnership. The nature of the doctor–patient relationship has changed over the last 20 years. Under the old model, doctors told patients what to do and they did it—no questions asked. “The new model is a partnership,” says Bivens. That partnership should be mutually respectful.

Never allow a doctor or other healthcare professional to make you feel rushed.

Ask questions. Ask all the questions you have for the doctor. If the doctor leaves the exam room, or if all your queries haven’t been sufficiently answered, kindly ask the doctor to call you when he or she isn’t busy. If you find it difficult to ask questions, ask a more assertive family member or friend to accompany you during visits. It’s important for you to understand your illness. Your doctor shouldn’t feel threatened by your probing questions. Because a lot of the terminology in Wyre-Daugherty’s treatment was complex, she asked pointed questions during each visit. The Patient Advocate Foundation encourages patients to have a prepared list of questions such as the following:

• What is the goal of my treatment?
• What are my treatment options?
• What is your experience treating this disease?
• How often will I receive treatment?

“Making a list can be a useful tool to help your visit go more smoothly, but keep in mind that your doctor has a limited amount of time to spend with you and you should address your most important concerns first,” advises Bivens.

Assert yourself when necessary.
Wyre-Daugherty took control of her health and insurance. When her first oncologist did not meet her needs (she says the doctor always appeared rushed, interrupted their appointments to talk to others, and was not very understanding), she found a second one through a cancer support group “buddy” referral.  When her insurance company initially declined to cover a $3,500 test, she made several calls to the insurer to get the test covered.

Your doctor is a service provider you have selected to help you get well. Your insurance company gets paid to properly insure you. “Being direct, but clear, about your needs is imperative as you resolve the issues you may face,” says Erin Moaratty, chief of external communications for the Patient Advocate Foundation. “However, it’s important that you don’t come across as rude or argumentative.”

Know your insurance coverage. It’s important to read and understand your health insurance policy. Ask your health insurer or employer to explain it to you. Like Wyre-Daugherty, don’t back down if a provider does not initially authorize certain expensive diagnostic tests, new drugs, procedures, or specialist referrals. If you need assistance, contact organizations such as HealthCare Advocates Inc. or Patient Advocate Foundation. “Following your insurance policy requirements will help you contain your out-of-pocket expenses,” says Moaratty. “Make sure you review the explanation of benefits after you receive treatment to ensure proper payment is being made.”

Share your health history. It’s important to be honest with your doctor—even about herbal or alternative treatments you may be using. Your doctor will give you forms to fill out to detail your medical history.  Additionally, Bivens suggests setting up an account on HealthVault (healthvault.com). Your medical records, imaging films, test results, doctor’s appointments, and even your children’s immunization records are kept in a central location that doctors can access with your approval. “HealthVault is a secure account you can use to view and track your health information online. You document your history, your medications, allergies, family history, blood pressure, and blood sugar readings. If you are ever in an emergency room in another state, the doctors can readily access important information,” she says.

Overcome the race, gender, and age bias. HealthCare Advocates offers several tips for African American, female, and older patients, three groups that experience healthcare disparities. If you feel you’re getting substandard care, you can file a complaint with your state’s board of medical licensure and the facility’s peer review panel. If possible, carefully consider the facility in which you are being treated. “For routine care, seek a professional practice and not a teaching hospital,” says Flynn. “While you can try, you cannot ensure that your doctor will listen to you. If you feel that you’re being treated like a child, you should seek a new doctor. Having confidence in your doctor is a large part of the medicine.” For complex ailments, Flynn says teaching hospitals are best because they often have access to the latest tools to fight illnesses.

Get a second (or third) opinion.
Wyre-Daugherty found peace with her second oncologist. After suffering side effects (acute nausea, weight loss, and uncontrollable itching) of eight rounds of chemotherapy, she became cancer-free in July 2007. If you’re going through a major illness, you want a doctor who calms you in a soothing environment. There are other reasons to seek a second opinion. “If a doctor prescribes any form of long-term treatment, then a second opinion is called for,” says Torrey. “If a patient is being treated but the treatment isn’t working, then it’s time for a second opinion. If the two opinions are not the same, then it’s worthwhile to get a third opinion.”

Negotiate the bill.
If you are uninsured or underinsured, you can still be empowered in your healthcare. You can ask your doctor for a discount such as the Medicare rate. Many doctors will reduce their prices for self-paying patients. Depending on your situation, apply for Medicaid. (While income is a qualifying factor, it is not the only criteria used. Research your state’s guidelines to see if you qualify.) If you are denied Medicaid, some hospitals will offer financial assistance. Also ask about drug replacement programs. Financial grants are available from disease-specific organizations such as Patient Advocate Foundation’s Co-Pay Relief (866-512-3861; copays.org), its National Underinsured Resource Directory (patientadvocate.org/help4u.php), and its Colorectal CareLine Financial Assistance Fund (866-657-8634; colorectalcareline.org). The Colorectal CareLine Financial Assistance Fund provides one-time $400 grants to individuals who have a diagnosis of colorectal cancer and make $75,000 or less annually. Co-pay relief programs can also help cover some medicines. Contact the Patient Advocate Foundation (patientadvocate.org) for strategies to help reduce or eliminate your out-of-pocket expenses.

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