Illustration by Brian Cronin
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I’m Afraid I Have Bad News. . .
By Elizabeth Austin, May-June 2003
Twelve steps to handle a disturbing diagnosis
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It's the bombshell everyone dreads. The doctor calls and asks you to visit so you can discuss your test results. Your biopsy has come back positive. Or your EKG is abnormal. Or your blood test revealed something questionable. Without warning and without preparation, you're suddenly battling a serious health problem.
What happens next? That depends partly on your individual situation. A cancer scare will bring one set of challenges and choices, and a life-threatening heart ailment will bring others. But experts say there are basic steps that all patients should take, no matter what illness they're facing. This 12-step plan will help you get the best possible care—and the greatest chance for a quick, successful recovery.
1. Start building your team. Don't try to get through this battle alone. Ask at least one trusted person to be your full-time advocate who can accompany you to doctor appointments, says Joni Rodgers, author of Bald in the Land of Big Hair, a memoir of her battle with lymphatic cancer. "You need someone who is objective and isn't going to hear just what they want to hear," she explains.
"Your best choice is someone who is not excitable or confrontational and who is good at taking notes," adds Marsha Hurst, Ph.D., director of the health advocacy program at Sarah Lawrence College in Bronxville, New York. If your sister gets hysterical, or your husband's ears hear only good news, ask a friend to step in.
You'll also need to designate an information manager, someone to return the 20 daily phone calls you'll soon be getting from concerned friends and relatives—or those half-forgotten acquaintances who want to hear all the gory details. Don't be timid about ducking out of distressing conversations. A good escape speech: "Although it means so much to me that you're interested, I'm not always able to talk about this. But I'll promise to keep you updated." Then give the friend's number to your information manager.
Call in outstanding favors when asking people to help; if you fed someone's goldfish for a week in 1982, that counts. "The definite skill that every survivor cultivates is the ability to assemble a team they can rely on," says Rodgers.
2. Don't let a gung-ho doctor rush you. Sometimes speed saves lives. When Rodgers was diagnosed with advanced cancer, her life depended on getting immediate treatment (starting the next day). "I had to depend on doctors to make a good decision in that moment," she explains. But whenever possible, take a few days, or even a couple of weeks, to ponder all your options—including the ones your physician may not know about. This is especially hard after you get hit with a diagnosis, and you're anxious. "I felt like I had a roach on me—get it off, get it off!" admits Rodgers. But jumping in to treatment too quickly—and without taking all of the steps outlined in this article—can lead to regret.
3. Take a hard look at your primary care doctor. If you've got a rare disease, the internist you've seen for years may be intrigued—but he's probably not the best physician to monitor your treatment. Make sure your doctor is up to speed on your particular condition. You can get the lowdown on him by calling your state board of medicine and checking his history and training at www.healthgrades.com. Also, directly ask your doctor if he feels qualified to treat you, and if he regularly performs the surgical procedure you may need done. If he's not the expert you need, he should be happy to refer you to a specialist who's better able to handle your case, says Richard A. Wherry, M.D., a family physician in Dahlonega, Georgia. "I never worry about losing control, because that's not what this is about." If he can't admit his limitations, consider changing doctors—if your insurance plan is flexible enough to allow this on short notice.
4. Invest 40 bucks in a microcassette tape recorder. This will allow you to record your talks with your doctor. "You can listen to it when you're not so upset and also let your family or other doctors listen to it," says journalist Curtis Pesmen, who wrote about his battle with colon cancer in Esquire. (Having a verbatim record can also help bring another doctor up to speed when you're looking for a second opinion.) Also, buy a heavy-duty, hard-to-lose notebook, and hand it over to your advocate during appointments. Don't even think about trying to write while you're listening to a doctor talk about your life. "It's like trying to take notes while you're being attacked by a dog," Rodgers says.
5. Tap two brains. Don't hesitate to get a second opinion—and don't feel uneasy about telling your doctor you want one. "When one of my patients gets a second opinion, only two things can happen, and they're both good," says Wherry, who is also on the Board of Directors of the American Academy of Family Physicians. "Either I'm right, or the other doctor finds something I didn't diagnose and the patient comes out ahead." Let statistics encourage you: In about one in five cases, the second opinion yields a different diagnosis, says Charles Inlander, president of the People's Medical Society, a consumer health advocacy group in Allentown, Pennsylvania. And even if the second doctor agrees with the diagnosis, she may have different ideas for the best treatment.
A political tip: Don't ask for a second opinion from another physician in your own doctor's practice; they're not likely to contradict each other. A doctor who works with a different hospital, preferably outside your insurance network, is usually the most unbiased choice. (Many insurance plans will pay part of the cost of consulting a specialist outside your network.)
When you're investigating treatment options with each doctor, make sure you're getting the whole story. "Ask 'What is the most aggressive treatment, what's more conservative, and what are the points in between?' " Inlander advises. Then ask the specialist what he or she thinks is the smartest strategy and why. Follow up by asking whether your insurance company covers the other options. If it doesn't, ask why.
You're likely to wind up with some conflicting opinions, which isn't necessarily bad. Tell your primary doctor the options you're considering and ask for help in determining the risks and benefits of each. "I try to take it from the patient's perspective and ask, 'If you had a preference and the outcomes were similar, what would you like to do?' " says Wherry. "Ultimately, you're the one who has to make this decision."
If there's major disagreement, seek a tiebreaker. Some health insurance companies will pay for a third specialist, Inlander says.
6. Make hurried doctors listen. You'll likely encounter several doctors of different skills and temperaments during this journey. Remember that some of the best physicians are the worst communicators; prescription pads never talk back. To make her doctor listen, Rodgers practiced this line: "I need to say something, and if you promise to listen without interrupting, I promise to speak for 90 seconds or less." It's a surefire way to get silence. It sounds far more reasonable than "just two minutes"—which doctors hear as patient-speak for "a half-hour or so." And, if you're well-prepared, 90 seconds is enough time to say everything you need to say (the "Gettysburg Address" took scarcely longer than that).
7. Get educated, not distraught. Finding health news and research about your condition on the Internet can be helpful, but it can also be a source of misinformation and needless worry. To ensure you're getting reliable information, stick with websites backed by known organizations. A prominent one is MedlinePlus, a site jointly provided by the U.S. National Library of Medicine and the National Institutes of Health. Also, the site at www.healthfinder.gov has links to more than 1,800 health-related organizations.
Offline, some hospitals and university medical centers offer well-stocked medical libraries, with librarians and research assistants to help patients wade through them. For example, the Stanford University Medical Center's Health Library offers free research help to anyone seeking information on an illness or treatment. "We walk through every patient's case individually and provide scientifically based medical information to help them make informed decisions about their health care," says the director of special patient services, Barbara Ralston. To reach the library, call 800-295-5177.
Don't hand your doctor a thick sheaf of medical journal articles and expect him or her to read them on the spot. Instead, Inlander suggests, use your research to create a list of half a dozen "talking points," and offer your doctor copies of your research.
8. Choose your hospital wisely. The closest hospital may be convenient, but it's probably a poor choice unless its staff has a great deal of experience in treating patients in your situation. You can get a quick read on this by checking www.healthgrades.com, and by calling the hospital and asking the medical director how often its doctors treat your condition. If you find that the closest qualified hospital is 500 miles away, ask your doctor if he can consult with the specialists there. [For more guidance, check out our web-exclusive checklist of 20 Ways to Identify the Local Hospital That's Best for You.]
9. After checking in, shake some hands. "When you get into your hospital room, the first thing you should do is call and ask the hospital's patient representative to come up so you can introduce yourself," Inlander says. "If you encounter problems, that person is responsible for making it right." (Ask for the patient representative's number when you check in, or ask a nurse.) Your friendliness will pay off if you have a problem; the advocate knows how to intervene if the night staff keeps waking you up to take your sleeping pill, for instance.
10. Chat up the nurses. It could yield more than extra pillows. "They have terrific insider information," says Dr. Hurst. Not only can they make your stay more comfortable, they can give you important treatment advice, too. You may need to listen for code words; a nurse could lose her job for telling you she wouldn't let your surgeon cut her hair. But if you hear a hint that she thinks you'd be better off with another doctor, take it seriously.
11. Stay sane. The emotional stress of battling a serious illness can take a large toll on your mental health—and the stability of your relationships. Joining a support group and venting to others who have been in your shoes can help; just make sure they're an optimistic bunch. "You can learn from other people who have gone through this situation," says Inlander, "but avoid groups that don't give you positive vibes." The local hospital can refer you to patient support groups, and you'll find a listing on the Internet at www.supportpath.com.
12. Be blissfully self-indulgent. When you're recuperating, forget about being the "perfect patient"—cheerful, brave, and attuned to everyone else's needs. Take all the slack that friends and family readily give you during this furlough, and don't feel guilty. Karma will come around. "The good news, if you can call it that, is that everything you go through will help you be part of someone else's support system six months or a year from now," says Pesmen, who—knock on wood—has been cancer-free for two years. "It's a small bonus at the end of a long, hard ride."
Elizabeth Austin is an award-winning health writer in Chicago.
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