4. Take Charge
Once you decide what you need, work to make it happen
Even the smartest patient can be shocked into silence by the words "the biopsy came back malignant" or "there's a problem with your heart." But the biggest challenge, after you've absorbed the blow, researched the diagnosis, and decided to move ahead, is how to go about obtaining the care you believe is best. What if the specialist or hospital you want is a thousand miles away and, of course, not in your health plan? What if you can't get past an implacable assistant? ("Sorry, but he doesn't have any times open for six weeks.") There are tactics that can open doors and get the best specialists to pay attention. Part of being a smart patient is learning how to work the system.
Ideally, you'd prepare for this moment well ahead of time, starting with your choice of primary care provider. You'd look for a doctor who has privileges at an academic medical center, even if the doctor's office is a few miles farther from home than you'd like. It's a worthwhile trade-off, says Pamela Gallin, ophthalmologist and surgeon at New York-Presbyterian Hospital and author of How to Survive Your Doctor's Care . Such a doctor will have connections to specialists, if the need arises, who are constantly boning up on the latest findings and technology and honing their skills.
Yes, it's elitist--justifiably. "People don't realize that it's a privilege to practice among good doctors," says Gallin. Moreover, you are tapping a powerful team of what she calls the "invisible" doctors. "If you come to me as a surgeon," she says, "you're getting the anesthesiologist, the pathologist, the radiologist, and any other doctor you're going to see." Call up teaching hospitals within a few hours' drive and ask if they have an affiliation with any community hospitals near you. Pick your doctor from those.
Oh. You say you picked your primary care doctor out of your health insurer's directory, you've never even met the guy, and now you're confronting a serious diagnosis or treatment? Your instinct may be to grab the first available opening with the first specialist willing to give you one. Slow down--many conditions that have taken years to develop can wait a bit, and even those with a sense of urgency rarely require a decision that day or even that week.
Translation: Don't let yourself be pushed into choices you're not ready to make. "We spend a lot of time researching what car to drive, but we're not willing to spend the time and effort to look for the best treatment for a serious illness," says Alma Rodriguez, an oncologist at M. D. Anderson Cancer Center in Houston.
Out of network. You may find that the best doctor is at a far-flung hospital most definitely not in your network. Depending on your insurance plan, you might still get some reimbursement, says Kim Calder, manager of health insurance initiatives with the National Multiple Sclerosis Society. If you're in a managed care plan, lean on your in-network doctor to get you a consultation or at least ask him to chat with the specialist about your case. If your plan is self-insured, with your employer paying out of pocket for care (if you don't know, ask your benefits manager), you can write a letter of appeal to your employer detailing why this doctor is the best for you.
Getting in to see the physician may call for string pulling. If you were applying for a job, you could send your resume to human resources, which is what most people do. Or you could ask a friend, or a friend of a friend, to pass it on to someone in the department where you want the job. Which gives you a better shot?
Trying to see a doctor in high demand is the same. You'll get an appointment--eventually--if you call the general line. Network instead. Whom do you know who might have a relative or friend in the physician's office and could put in a word for you? "My friend's kid had a small hole in his heart and wanted to see some of the physicians at Columbia," says Evan Levine, a cardiologist in New York and author of What Your Doctor Won't (or Can't) Tell You . "He called [the appointment number] directly, and it was a four-month wait. I knew a number of people there, and he had an appointment in a week." Fair? Maybe not. But when a medical problem is serious, shouldn't getting the best care be the priority?
Without connections, you'll have to be persistent. Give the scheduler your cellphone number and offer to be flexible if there's a last-minute cancellation. If you're in the neighborhood, you could drop by to make an appointment in person--it's harder to say no to someone standing right in front of you. (Just be polite.) You can also ask if the physician has partners who may be less renowned but have similar treatment philosophies and success rates. Or find out if the doctor has trained other nearby specialists or is familiar enough with their work to be able to vouch for them.
Telltale heart. Once you're in front of the doctor, your care is still in your hands as much as it is in the physician's. You need to be assertive, as Shelly Weinig found out. The 76-year-old retired entrepreneur and adjunct professor of engineering at Columbia University woke up one day with double vision. He got a quick appointment with his personal physician and mentioned that he could actually hear his heart beating, very loudly. "Those are the kind of stories I hear from old ladies" is how Weinig recalls the doctor's response. "That galled me," says Weinig. "Don't ridicule me if you don't know what my symptoms mean." He eventually found a specialist who diagnosed a network of swelling capillaries behind his eye. Left alone, it could have burst or put pressure on nearby blood vessels, leading not only to loss of vision but also to a possible stroke. The amplified heartbeat was a symptom of this spider's web of blood vessels, called a hemangioma.
Even when the diagnosis is clear, the treatment proposed might not be the one best suited to your case. Not all doctors are up to date on the latest research, and every specialty exhibits self-bias: Surgeons think in terms of cutting, radiologists in terms of radiation-based solutions. Even where you live can have an influence. The ongoing Dartmouth Atlas project has found significant treatment differences from region to region and even within states. In California, for instance, elderly Medicare enrollees in Palm Springs had double the rate of knee replacement surgery in 1999 that comparable Medicare patients did in Stockton. You can use the Dartmouth Atlas to examine statistics for elective procedures in your own community. (Go to www.dartmouthatlas.org and follow the link to Web database tools.)
Be tough. So if you disagree with your doctor's preference because your research has told you it's not the obvious choice, don't automatically give in. "It's perfectly OK to say, 'I've heard some people get a lumpectomy instead of a mastectomy--what do you think of that? What are the pros and cons?'" says Diana Zuckerman, president of the National Research Center for Women & Families. "If the physician gets very defensive and angry, you need a new one," she says. On the other hand, the doctor may take a look at the research you've brought and agree with you. You should keep your mind open, too; the doctor's advocacy for a certain approach might be persuasive. If not, you should agree to disagree, and get another opinion or find another physician.
Even if you and your doctor are on the same page, your insurance company might not be. Health insurers have formularies, for example--prescription medications the insurer will cover for specific conditions. But the approved drugs are rarely identical. Many neurologists, for example, have their own preference among the handful of drugs that treat multiple sclerosis. "You could have insurance plan A that has decided Avonex and Betaseron are great and Copaxone and Rebif are not so great," says Calder. "Two counties over, it could be just the opposite." But your doctor can, and most will, fight on your behalf for coverage of a particular drug. Ask your doctor to write a letter and appeal if your preferred drug isn't on the formulary, she says. Advocacy groups often have templates for the letters to make it easier on the doctors.
You can also appeal if a treatment is denied. Most states have an external review process if your initial appeals are rejected, and about half of the decisions favor the patient. This can be done quickly--often within two or three days in an emergency. (Consumers Union and the Kaiser Family Foundation have a state-by-state guide at www.consumersunion.org/health/hmo-review . Contact the state insurance departments listed for the most current information.)
To be your own advocate through a process that seems to stretch out forever from illness to diagnosis to treatment to follow-up is draining. You may not feel well anyway, and the merry-go-round of specialists and opinions adds more anxiety. "I was exhausted," remembers Weinig. "I'd been to so many doctors." But your health may depend on your taking charge. "You have to decide you're going to manage your case and decide what you're going to do," he says. "Don't be afraid to question and doubt."
This story appears in the November 8, 2004 print edition of U.S. News & World Report.