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What do I do first?
• Take a deep breath. A medical crisis is more than just a problem with your body. It also affects your mental health, your family relationships, your finances, and, on a basic level, what you do from day to day. Even though these things are offshoots of the medical problem, they shouldn’t be ignored. They can all be managed, with the help of others. You just have to know up front to be thinking about all of them.
It’s normal to feel overwhelmed or panicky when you’re told you’re sick. “When there has been an official diagnosis, there’s a tremendous amount of incredible emotional distress, shock, and denial,” says Janine Gauthier, a psychologist at Rush University Medical Center who specializes in mental-health treatment of cancer patients.
Try to remember that as you solve the little problems and answer the questions, you will probably start to feel more settled. Your life may be permanently different, but it doesn’t have to be permanently anxious.
Start with the matter of confirming your diagnosis and setting out a treatment plan. Then you will have to weed through your insurance coverage and get your finances in line. Staying organized and feeling afloat are paramount. And through it all, your everyday demands have to be handled.
It sounds like a lot to face at a moment of crisis. Take it one step at a time.
Who am I going to be dealing with?
• You will be assembling a team of people throughout the course of your illness, each of whom knows some answers to questions you will have. Figure out who these people are early, so you can turn to them quickly when you need them. Collect business cards, and write down the best way to reach them—phone, e-mail, pager.
Probably several doctors will be on your team. For example, if you have cancer, you may have a general oncologist, a surgeon, and a radiation oncologist all taking care of you. One doctor will be managing your treatment. Make sure you know how to get in touch with this person.
If the doctor in charge of your care works closely with a particular nurse, get his or her contact information. Nurses can help ease you through the logistics of a doctor’s office and matters of insurance.
Hospitals have social workers whom your doctors or nurses may introduce to you. If not, enlist one for your team. Social workers are a nexus for information on where to get information. They know where you can learn more about your disease, how you can tap into a support group, how you can locate a clinical trial that fits your case, and where you should go when they are stumped.
Check in with the managed-care department at the hospital where you are going to be treated—they are the people who communicate with your insurance company. Someone there may know of insurance pitfalls that have tripped up patients with your condition before.
Ask your insurance company if a case manager can be assigned to you. Having a single contact at the insurance company who is familiar with your situation saves both you and the insurer time and effort when you need to call back.
A support group or a psychologist can do wonders for your mental health during a time of crisis. Social workers can put you in touch with them.
Claims assistance professionals help you sort through your insurance coverage, and the bills and statements when they start rolling in. They are independent businesses, and they charge for their services.
Your family and friends should be part of your team, too. Having a companion at doctor’s appointments eases your load considerably. Family and friends can also pick up the slack in your household, helping with bills, food, and childcare.
Keep all these people in mind. Just establishing connections takes you a long way toward resolving what you can.
Should I always get a second opinion?
• “It never hurts,” says Steven Rosen, the director of the Robert H. Lurie Comprehensive Cancer Center at Northwestern Memorial Hospital. Medical crises don’t always point to clear-cut solutions. If your situation doesn’t require immediate action, the input of another doctor can add valuable information. “Any doctor would encourage you to get a second opinion,” says Erin Schneider, an American Cancer Society patient navigator at Rush University Medical Center. (Cancer Society patient navigators are social workers with special expertise in problems faced by cancer patients.) “If they discourage you, you shouldn’t go to that doctor anymore.”
“You want a doctor who’s comfortable with telling a patient, ‘If you don’t like my opinion, seek somebody else,’” adds Valluvan Jeevanandam, the chief of cardiac and thoracic surgery at the University of Chicago Medical Center.
Second opinions can also reassure patients that they are doing the right thing. “If a patient has concerns, it’s important for him to feel in his own mind that he has taken the right steps,” says Teepu Siddique, a professor of neurology and cell and molecular biology at Northwestern University’s Feinberg School of Medicine.
Getting a second opinion is not a betrayal of your doctor. Doctors’ reputations are made or broken by their success, which is enhanced by second opinions, and by their relationships with their patients. But most important, the second opinion affects your care. “You should never worry about the doctor or anybody else,” Rosen says. “It’s your life.”
Should I seek an opinion from a doctor who specializes in my disease?
• Here in Chicago, we are lucky to have a number of world-class institutions, places where academic experts perform cutting-edge medi-cal research. To get your first opinion, you have probably already spoken with a specialist—particularly if you are going to one of these hospitals—on referral from your primary-care doctor.
For your second opinion, if it’s possible, try to find a doctor who specializes even more closely in your condition. That might mean, for example, going to an oncologist who has expertise in breast cancer rather than a general oncologist, or consulting a cardiac surgeon with a specialty in bypass surgery. Ask the doctor who first diagnosed you or your primary-care doctor to refer you to someone who handles a lot of cases like yours. Of course, your first opinion may have come from a top specialist. Even so, it can only help to see another expert in the field.
It’s not that a generalist isn’t capable of dealing with specific cases; it’s the speed at which medical practice evolves. “There are certain diseases that are so common that individuals have a level of expertise even if they’re not a true thought leader in the field,” Rosen says. “But the issue is always: Is there something new that was presented in the last meeting that they’re not aware of?”
Consulting a specialist doesn’t mean that that doctor will necessarily manage your treatment—you can be treated at your local community hospital using the advice gleaned from the specialist. Some conditions, certainly, require supervision from a highly specialized doctor who knows current protocols and possible contingencies.
But many illnesses can be managed near where you live, once the plan is in place. “You may ultimately, for practical reasons, end up in a setting that is closer to your home,” Rosen says.
illustrations: Harry Campbell