Doumas found a new surgeon and got the double mastectomy she wanted. Though lumpectomy was a viable option, Doumas didn't want to live with the uncertainty that the cancer might return. But how many of us have the chutzpah to debate our doctors, especially in the face of a serious diagnosis? We need to find a way: The time to stop blindly following doctors' orders is now. Kate Clay, program director of the Center for Shared Decision Making at Dartmouth-Hitchcock Medical Center in Lebanon, New Hampshire, says today's unprecedented number of new drugs and high-tech procedures means patients need to take control. "Don't assume the system is going to work for you. Make it work for you."
The first hurdle for many people is shifting their notion of doctors as benevolent dictators. Your physician is your employee, says Steven Katz, MD, an internist and professor of medicine and health management and policy at the University of Michigan in Ann Arbor. Expect the same amount of customer service from the doctor's office or hospital as you'd expect from any other business. "Patients should be more demanding of their doctors," says Katz, especially when it comes to their own medical files. "People want banks that offer online access, yet when it comes to medical records—or the ability to e-mail your doctor—people say, 'Gee, I don't want to be a bother.'"
Even if you're healthy and haven't had much experience jousting with your doctor's office, you should assert yourself in small but meaningful ways. For instance, call before your appointment and ask if the doctor is running on time. If she is running late, the appointment is for routine care (say, a Pap smear), and you don't want to wait, reschedule, says Clay. "The only time you should wait to see a physician is in the emergency room."
If, like Doumas, a serious diagnosis thrusts you onto a merry-go-round of appointments, tests, and procedures, there are easy ways to remain in control.
- Don't make hasty treatment decisions.
Ask your doctor how long it's medically safe for you to wait before choosing a course of treatment. "The diagnosis of a serious health problem is scary, but it's rarely an emergency," says Katz. As a general rule, he advises against making treatment decisions on the spot. Get details about your diagnosis and treatment and read them at home, at your own pace. Always ask your doctor if she has discussed all the options with you, including what will happen if you do nothing.
- When seeing a new physician, surgeon, or specialist, ask the scheduler how long you'll have with the doctor.
The answer will help you prepare for the meeting. For instance, new patient appointments are usually lengthy, allowing you plenty of time to quiz the doctor on the intricacies of your diagnosis and treatment options. But if it's just a ten-minute follow-up, be judicious with your questions, says Clay. "If you can find the answer elsewhere, don't waste your time with the doctor."
- Turn a three-ring binder into your healthcare journal.
This is the place for everything you gather about your condition. Add blank pages for notes, and dividers with pockets for test results, physician messages, and treatment information. Take it with you to every doctor's appointment. If you are admitted to the hospital, entrust it to an accompanying friend or relative should there be any question about your health history. "One of the biggest mistakes people make is assuming the hospital will have a complete and accurate copy of their medical records," says Clay.
- Go to every appointment armed with a tape or digital voice recorder and, when possible, a smart friend or family member.
"You may think you're this incredibly organized person who will remember everything the doctor says, but—take my word for it—you won't," says Clay. "You hear the first and last thing they say, and very little in between." A spouse or trusted friend can jot down notes, lend an outside perspective, and ask questions; the recorder will capture every last detail and can be replayed later in a calmer setting.
- Tell your doctor you'd like to get a second opinion, and watch for hesitation or defensiveness.
If he gets mad, fire him, says Clay. "People need to stop being afraid of their doctors. Are you going to cower if your mechanic gets angry with you? No, you're going to get a new mechanic." Doctors in the same locale often have a similar style of care, meaning they may offer the same treatment advice, explains Richard Deyo, MD, professor of family medicine at Oregon Health & Science University in Portland. "Instead of going to one of your doctor's colleagues, travel to a nearby city where they might be more up-to-date."
- Don't ask your doctor what he would do if you were his wife, sister, or mother.
This is a bogus question that derails good doctor-patient communication, says Clay. "Chances are, he'll just say whatever he wants to say but frame it in the way you want to hear." If the sheer number of treatment options makes your head spin, ask someone who really knows you—your closest friend, say—to help you map out the pros and cons of each approach.
- Find out how to reach your doctor between visits.
Questions to ask include: What is the very best way to contact you in an emergency? Can I e-mail my questions to you or your staff? What phone number will get me to a person with decision-making capabilities? If your treatment could leave you in considerable pain, you'll want to be sure you can reach the physician in person.
- Ask for a copy of your medical record, including doctor's notes and X-rays.
Expect to meet some resistance, says Clay. "Say, 'It's my record, I paid for it, I own it, and I need a copy for my file.'" Be prepared to pay at least a few bucks for copies of X-rays, she says. Better yet, look for a medical practice that keeps electronic records ready for printing, says Katz.
- When surgery is indicated, consider the physician's experience.
Like any professional, a surgeon gets better with practice. If the operation is complex yet commonplace, like angioplasty, choose a surgeon who's done hundreds of the procedures, says Katz. If the surgery is so new there aren't hundreds of satisfied customers, try to find a surgeon who has done at least a dozen of the operations.
If you still feel intimidated, let Doumas, a soft-spoken single mom, firm your resolve. "In my heart, I just knew what I needed, and I kept pressing," she says. "You have to be your own advocate."