Everyone’s life crashes into a serious illness sooner or later. Maybe it happens to you, maybe your spouse, or maybe someone else close to you, but no one is immune. Fear and uncertainty arrive at the moment of diagnosis, weighing down patients with an overwhelming question: What do I do next?
This article is meant to guide patients and their loved ones and friends through the frightening maze of questions, choices, and challenges following the diagnosis of a serious illness. Several of the points made here refer specifically to cancer, but most of the information applies to all major illnesses.
To put this together, we’ve collected advice from doctors, social workers, insurance experts, psychiatrists, and lawyers—and from personal experiences, including my own. Before we were married, my wife battled Hodgkin’s disease twice, through chemotherapy, radiation, and a stem-cell transplant. We’re now in our fourth year of happy, healthy marriage.
illustrations: Harry Campbell
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
What if the first and second opinions disagree? Should I get a third? Where does it stop?
• Get a third opinion when the first two don’t agree. Opinions should point you in a clear direction for treatment. “The only time a third opinion is helpful to me is when the two opinions are really conflicting,” says Stephen Nigh, a radiation oncologist at Northwest Community Hospital. “When it starts to go to the fourth or fifth opinion, it becomes a disservice to [patients]. Health-care decisions are very complex. At some point you do have to trust [your doctors].” When you are no longer receiving new information, there’s not much value in seeking more opinions.
If you do decide to seek a third opinion, find a doctor who is a thought leader in the field. “If you have differing opinions, you should seek out a real academic medical center,” Jeevanandam says. In Chicago, the main academic hospitals are the University of Chicago Medical Center, Northwestern Memorial Hospital, Rush University Medical Center, and Loyola University Health System.
At the extreme, some patients avoid addressing their medical crisis by continuing to seek opinions. “It can go too far at times,” Gauthier says. “The person that keeps wanting to get one opinion after another, putting off starting treatment, is actually doing themselves harm.”
Will my insurance cover a second opinion?
• Different insurance plans have different arrangements for second opinions. Some plans will require approval before getting an opinion from an out-of-network doctor, some plans require approval before a second opinion from any doctor, some require a referral, and so forth. Before you make an appointment, read your plan’s subscription manual or call the insurance company to find out.
How do I find a doctor for a second opinion—or for a first opinion, for that matter? And how do I know if a doctor is a good doctor?
• Act like a journalist: Ask around. Call your doctor. Most doctors—including your own—will gladly give referrals to specialists. Or call the hospital’s referral lines and ask what doctors are experts on your illness. A number of groups publish lists of doctors and their specialties. Hospitals’ Web sites often have physician-finder tools to identify their resident experts on particular illnesses. If you have cancer, the American Cancer Society hotline (800-ACS-2345; cancer.org) will provide a list of treatment centers in your area. In connection with Castle Connolly Medical Ltd., this magazine regularly publishes a list of top doctors by specialty in the Chicago area, most recently in January 2008. We’ve reposted that list at our Web site Enter the code CHICAGOMAGDOCS when prompted at the site. (The magazine plans to publish a new Top Doctors list next in January 2010.) In general, word of mouth, whether from other patients or other medical professionals, is still the most common way of finding a doctor.
“In all honesty in this instance, I would say call Steve Rosen,” says Rosen, the head of the cancer center at Northwestern. “I’d say in a given week I handle, on average, maybe 30 or 40 referrals that I’ll say, ‘This is who I think you should see in our system.’ ” Rosen adds that he will often refer people to someone else who can make a referral better than he can. Doctors are part of a network; you just have to ask them to tap into it.
Publications and Web sites evaluate doctors and hospitals. The same company that provides data for this magazine’s Top Doctors, Castle Connolly, publishes the book America’s Top Doctors. The magazine U.S. News & World Report annually publishes a Best Hospitals issue that ranks hospitals by specialty. Subscription-based Web sites HealthGrades.com, AngiesList.com, and Checkbook.org evaluate individual doctors.
Some doctors warn patients about the limitations of these resources. “You can’t really just go to Web sites, stats, and numbers,” Jeevanandam says. “A lot of the Internet stuff can be manipulated or misleading.” He cites patient volume as an example—a low number looks discouraging, but it could mean the program takes on tough, time-consuming cases. Ultimately, it’s best to use these published reports in combination with recommendations from your doctors.
And don’t underestimate the importance of getting along well with your doctor. “I think that that’s the single most critical issue outside of being knowledgeable about the disease—that [the doctor is] available and empathetic and willing to be a good listener,” says Rosen.
Is it worth getting an opinion from a well-known doctor at a hospital outside of Chicago?
• Except in rare cases, no. “There’s very little that would be added that you can’t get from one of the academic centers here,” Rosen says. Medicine is collaborative; doctors keep up with the thought leaders in their specialty areas and consult them in cases of uncertainty. “There isn’t a thing that’s out there that a [New York’s] Sloan-Kettering [Cancer Center] person may be saying that we don’t know about,” Rosen says.
An uncommon disease, procedure, or set of conditions might justify a trip outside the Chicago area. “The question about whether to leave your local region is: Is there something someone else can offer?” says Thoralf Sundt, a cardiac surgeon at the Mayo Clinic in Rochester, Minnesota.
Very rare illnesses have fewer experts. As big and medically rich as Chicago is, it can’t provide for the needs of every “zebra,” as doctors call unusual diagnoses. If your case is a zebra, you will find out from your doctor. When you are looking for referrals for a second opinion, ask, Where can I find a doctor with specific expertise on my condition?
illustrations: Harry Campbell
What is a clinical trial? How do I get into one?
• A clinical trial is a scientific study of a new method of treatment that research doctors believe has a good chance to be more effective than old methods. If you’re considering entering a clinical trial, be sure you understand the risks and potential benefits of the treatment. Also consider how you’ll pay for it—some clinical trials are free for participants; others aren’t.
Many hospitals have health educators who can help you research existing clinical trials. You can also search on your own at Cancer.gov/clinicaltrials (for cancer-specific trials) or ClinicalTrials.gov.
What questions should I ask my doctor after diagnosis?
• Your doctor may cover most of your would-be questions without your asking, but there are a few things you should be sure don’t get lost in the shuffle. Here is a list of questions for your doctor:
1. How much experience do you have treating this disease?
If the answer doesn’t reassure you, consider having another doctor manage your treatment.
2. What are the possible courses of treatment and their side effects?
Make sure the answer covers long-term side effects—for example, heart health, mobility, fertility. Sometimes there may be more than one recommended treatment for your condition, allowing you to weigh the differing side effects.
3. What tests will I be getting?
4. If you are scheduled for surgery, consider asking your surgeon: How many of these particular procedures have you done? Does that put you in a high percentile of experience? Do you have fellows in residence who will be in the operating room? If so, who will actually perform my surgery?
5. Will I be able to work while I am being treated?
6. If you are emotionally prepared to deal with the answer, ask, What’s my prognosis? If you are not ready, the question can certainly wait.
How am I going to remember the answers to all these questions?
• If you have a person who would be willing to accompany you on all your appointments, take him or her along. Prime your companion with the questions you want to ask your doctor, so there is a better chance you won’t forget. Have the companion take notes. Or use a tape recorder (but if you do, let your doctor know you are taping).
Keep organized. Have a notebook or folder for keeping your medical papers. Write down questions and answers from your doctor. Track the medications you are taking. Keep your lab results there. The cancer-support organization Gilda’s Club distributes books with preprinted places for these categories, as well as resource lists and bits of advice. The American Cancer Society’s patient navigators distribute a similar book.
What are some good resources for learning about my disease?
• For common diseases, nonprofit health organizations typically run Web sites that provide thorough explanations of symptoms, treatments, and side effects—for example, the Lupus Foundation of America (lupus.org) and the American Diabetes Association (diabetes.org). Specific hospitals or hospital networks such as the National Comprehensive Cancer Network (nccn.org) also keep informative Web sites.
The National Institutes of Health (nih.gov) and its sister organization MedlinePlus (medlineplus.gov) have Web-based search tools that can link you with vast details on your illness. WebMD (webmd.com) is a storehouse of readable, searchable information on all kinds of medical problems. Try to keep some perspective—because of WebMD’s ease of use and the search-ability of symptoms, “it’s a hypochondriac’s dream,” says Jeanette Albarrán, the Latino program coordinator at Gilda’s Club Chicago.
Your doctor or nurse should be able to point you to other useful resources. Hospitals also distribute disease-specific informational pamphlets from information desks or centers that are often staffed by knowledgeable people.
illustrations: Harry Campbell
I feel like this whole thing is completely out of my control.
• When people who, until recently, were complete strangers start talking about life-or-death decisions while you’re nearly undressed, it’s natural to feel as if you are no longer in control. Some people react by trying to take charge of everything. “That’s a way of coping with anxiety—the mistaken belief that if you can control all aspects of it you can control the outcome,” says Marie Tobin, an associate professor of psychiatry at the University of Chicago Medical Center. “It’s a delicate balance between participating in one’s care and believing you have all the answers.”
Gauthier, who specializes in the psychology of cancer patients, says, “Think about, What are the areas where I do have control? Can I accept that I do not have control over the cancer cells?” If you feel well informed and collaborate with your doctors in making decisions, you can usually overcome the out-of-control feeling. Tobin stresses the importance of “having a therapeutic alliance with [your] doctor, feeling like [your] treatment is a cooperative effort.”
My whole life seems so different now. How can I tell if the way I’m reacting to this crisis is healthy?
• “It is normal to experience distress, disorientation, anxiety, fear,” Tobin says. The trouble occurs when those feelings become incapacitating and lead to “functional impairment.” If your negative feelings are having an effect on your daily life—if, say, you don’t want to get out of bed, you’re avoiding friends or family, or you’re feeling overwhelmed by things that normally wouldn’t bother you—you should ask at the hospital about psychological help. You may want to join a support group or consult a mental-health professional.
So my family and I should watch for warning signs that I’m not coping well?
• Yes, but with debilitating stress or anxiety, as with most medical problems, heading it off at the pass is a better strategy. Mental-health problems are real, physical side effects of disease, and they respond to preventive techniques. Just as you would take an antinausea medication to offset the effect of some chemotherapy drugs, you should work to reduce your disease-related stress during your treatment.
Support groups can be a tremendous help—talking with other patients reduces the sense of loneliness many patients feel. Peers also have in-the-trenches advice that doctors and nurses can’t supply.
Ask about on-site support groups at the hospital where you are being treated. Also, many organizations dedicated to specific diseases offer advice and support groups. Some of their Web sites provide forums that can connect you with other people who are going through something similar. “There are online discussions through the disease-specific organizations that some people find very beneficial. They’re educational as well as supportive,” says Marilyn Lees-Reinish, the manager of the department of social work for Loyola University Medical Center.
Here are some cancer-specific support organizations around the Chicago area: Gilda’s Club, in Chicago (gildasclubchicago.org); Jennifer S. Fallick Cancer Support Center, in Homewood and Mokena (cancersupportcenter.org); Wellness House, in Hinsdale (wellnesshouse.org); Cancer Wellness Center, in Northbrook (cancerwellness.org); Wellness Place, in Palatine (wellnessplace.org); and LivingWell Cancer Resource Center, in Geneva (livingwellcrc.org).
Should I update my will? And when should I assign power of attorney to someone?
• “You want to sit on this end and see what happens when they don’t [update their wills]?” Lee-Reinish says. In other words, yes, do it. It’s not morbid; it’s sensible. Think of it like doing your taxes. “The best gift we can give our families is to let them know what our wishes are,” Lee-Reinish says.
As for power of attorney, at some point in this process—especially if you are having surgery—you may be handed a form to express your wishes if you become unable to communicate with your doctors. “Every patient is given a power of attorney and living will form when admitted to [Rush],” says Erin Schneider, the American Cancer Society patient navigator at Rush.
People avoid filling this out because it makes them anxious or they imagine it will jinx them. Try to overcome those feelings. There is no downside to making your wishes known. “That should be an automatic thing that we all have, no matter what our age,” Lee-Reinish says.
illustrations: Harry Campbell
How do I keep people updated as to what’s going on with me?
• Social-networking Web sites specializing in medical updates—such as CarePages.com and Trusera.com—let users construct a page and post news about their treatment. CarePages.com lets you set who can visit your page, allows visitors to request e-mail alerts when your page is updated, and publishes support tips. Trusera.com focuses on exchanging stories and asking questions of others with the same disease, but it can be used like CarePages to give updates to loved ones. PatientsLikeMe.com connects patients suffering from specific illnesses such as ALS with communities to share tips and experiences.
How should I tell my children about my diagnosis?
• Telling kids about illness is tough, but not telling them has the potential to be worse. “A lot of people, because they don’t know how to do it, then they just don’t do it,” says Christine Hazelett, who coordinates programs for children, teens, and families at Gilda’s Club Chicago. “You just need to tell them. It doesn’t really matter how you tell them, as long as you tell them.” Magical thinking—that is, believing in causation where none exists—leads young children to draw terrible conclusions from the worry they pick up on. “Children know that there’s something going on,” says Tobin, the psychiatrist. “Their imagination can cook up something much worse.”
What you should say depends on the age of the child. Older kids can understand more about the human body. Younger kids don’t need as much detail. Tell them what will change about day-to-day life at home. Reassure them as well as you can while being honest.
More important than what you say is how you say it. “It needs to be authentic. It needs to be in your language, your words, how you normally talk to your kids. It’s OK to be tearful, it’s OK to be emotive, because they’re going to have that, too, and they need to know that’s OK,” Hazelett recommends.
Even before they ask, reassure young children that they didn’t cause your illness. Kids can draw this conclusion. Also, if the disease is not contagious, emphasize that no one else in the family is going to catch it.
What records should I keep?
• If you are keeping a folder or notebook that you take to appointments, it’s useful to have records that can answer questions a doctor might have for you. For example, the pathology report that led to your diagnosis can be useful to a doctor you are consulting for a second opinion. If you have had surgery, copies of the operative report are worth keeping. Scans, x-rays, hospitalization reports, and a summary of your treatment plan can also come in handy. Many doctors suggest you make a list of medications you are taking: the names, purposes, and frequency with which you take them. Doctors often hear stories about patients who aren’t taking their medications properly. It’s easier to stick with the plan if you write it down. Also, patients often forget names or dosages. Take either your list or the pill bottles with you to the doctor’s office.
What should I know about my insurance coverage and how should I find out?
• “First of all,” says Cindy Parker, the director of managed care at Northwestern Memorial Hospital, “[patients] should understand what their benefits include.” And that means understanding the manual explaining your benefits, “which nobody ever looks at,” she says. If you don’t know where this document is, call the toll-free number on your insurance card or ask your employer’s human resources department. Many benefit manuals are available online as well.
When you are puzzling through your coverage, remember that doctors and hospitals are considered separately. That is, the hospital where you are being treated may be in the network, but your doctor may not be. Ask about each. If you are likely to be hospitalized for treatment, ask how to preauthorize that stay. Ask about MRIs, CT scans, and other tests. You can plan ahead if you understand your coverage. “The worst thing that happens with patients is they think they’re covered when they’re not,” Parker says.
Exclusions don’t always seem logical to the casual observer, so be specific. “It’s weird stuff,” Parker says, “like a hip replacement with a steel joint as opposed to a ceramic joint was covered.” Even if the treatment your doctor recommended isn’t covered, it could turn out that an equally promising treatment may be.
“It’s really important to have a doctor that’s going to be in your corner,” says Susan Loeb, a benefits advocate and claims assistance professional. The doctor and his or her office can support an appeal of a decision the insurance company makes that doesn’t accord with the treatment you’ve settled on.
illustrations: Harry Campbell
How can I find out how much treatment will cost and what I personally will need to pay?
• Some insurance carriers have Internet-based tools that allow you to enter your benefit parameters—PPO or HMO, annual deductible, copayments, and so forth—then get a ballpark estimate of your total out-of-pocket cost. The actual cost can vary greatly from the estimate, of course, depending on any of a slew of factors. The figure from the online tool shouldn’t be considered anything more than a very rough approximation.
You can get a closer estimate from a representative at your insurance company. Unforeseeable, complicating circumstances may increase your final costs.
What resources are there for financial support?
• A major source for financial support is your future self. That is, if you set up an installment plan for payment with the hospital or physicians’ group, you can take some of the sting out of the bottom-line figure on the bills. “Paying for health care is very different from paying for your credit card,” says Kathleen Boss, the director of special initiatives at Gilda’s Club Chicago. “Most hospitals will set up some type of a payment plan with you, no matter if it’s five dollars a month or 500 dollars a month.” Call the hospital’s billing department to arrange a plan if you can’t pay all at once—before the bills are sent to a collections agency: This could damage your credit.
If you don’t and won’t have enough money to pay your hospital bills, ask the hospital about a financial assistance policy. Most hospitals provide some amount of charity care. You will need to fill out extra paperwork revealing certain financial details and attesting to your inability to pay.
Scores of charities offer assistance to chronically ill patients. Many of these charities are disease-specific, such as the Wilmette-based Leukemia Research Foundation or No Wooden Nickels, which helps cancer patients in Illinois. Others provide a specific kind of assistance, such as the HealthWell Foundation, which helps patients afford prescription medications. Hospital social workers can be a great help in locating the right organizations. Most can also be found through some light Internet research.
My problem isn’t really with paying the bills. It’s with the flood of logistical problems that accompany illness. What should I do about them?
• The burdens that come with a medical crisis can be staggering. Getting to and from doctor’s appointments grows into an obstacle when your driving ability is impaired by injury, fatigue, or medication. Errands like grocery shopping, cooking dinner, and ferrying children around require more planning and mental effort. Arranging for appointments or treatment can disrupt your schedule. Individually, these problems are small, but together they are monstrous.
A number of charitable organizations and houses of worship have programs to provide rides to patients in need. Also, many hospitals have shuttles with regular routes. Social workers at the hospital will know what’s offered and what might work for you.
If you are going to be hospitalized, social workers know places where your family members can stay to be nearby, sometimes at a discount or free through charities. If you are going to lose your hair, they even have leads on how to find a wig.
Keep a calendar. Even if you didn’t keep one before, the irregularity of appointments and the complexity of medication schedules can be a lot to keep in your head. If you have a companion who attends appointments with you, he or she might also keep the calendar for you.
What’s more, think back to all those people who, when you told them about your diagnosis, said, “Let me know if there’s anything I can do to help.” A lasagna waiting for you in your oven feels like a miracle when you get home from chemotherapy.
What’s going to happen with my job? And what legal protections do I have as an employee?
• You should talk through with your doctor what you will be capable of in the future, whether because of treatment side effects or because of disease symptoms. People react so differently that you may be able to work more than someone who has the same profile and diagnosis.
Short- and long-term disability programs are built into many benefits packages. Call human resources to discuss what your plan offers if you think there’s a chance you will need it.
Also, talk to your boss. Regardless of your disability insurance, you may be able to negotiate a mutual arrangement. “If you make everybody part of the team, everybody vested in it,” says Jeffrey Rabin, a lawyer whose practice focuses on Social Security disability bene-fits, “you have a better ability to get that time and consideration while you treat the illness.”
The federal Family and Medical Leave Act requires employers with more than 50 employees to grant 12 weeks of unpaid leave to an eligible employee who is unable to work because of a health condition. (This is the same law that provides maternity and paternity leave.) To be eligible, an employee must have worked for the employer for at least a year, logging at least 1,250 hours of work. The employer doesn’t have to keep your exact job open, but you are entitled to an equivalent job when you return.
The Americans with Disabilities Act guarantees that you can keep your job if you are able to continue doing it with reasonable accommodation on the part of your employer. “Reasonable” is defined through negotiation between you and your employer. As examples of reasonable accommodation, Rabin cites a new chair that reduces back pain or a change in work hours to avoid the anxiety of rush-hour traffic.
Several nonprofit organizations offer legal aid for patients. Equip for Equality represents Illinoisans with disabilities in need of lawyers. The Chicago-based Health & Disability Advocates matches attorneys with the financially needy and people with disabilities to help them secure health care and income assistance. A lawyer, a social worker, or Internet research can easily link you up with these or others.
“[Patients] should know not to be afraid to assert [the force of the laws],” Rabin says. “Sometimes they’re afraid they’re going to be fired if they go to the boss and assert any of their rights, and they’re not,” Rabin says.
illustrations: Harry Campbell
What do I do if I have to leave my job?
• Immediately after leaving, you can extend your health insurance for 18 months under COBRA, the federal law that includes a temporary-insurance program. When you are employed, both you and your employer usually pay a portion of the cost of your health insurance; with COBRA, patients usually pay both portions, so month-to-month costs will likely go up if you enroll.
If your medical problems prevent you from returning to work—any type of work, not just the job you leave—you can apply for disability pay through Social Security. If you and your doctor decide together that you will be out of work for more than a year, you should consider applying for Social Security disability. Rabin suggests you hire a lawyer with expertise at the beginning of the process. (Lawyers working on Social Security disability cases are paid a portion of the eventual payments, so you are not on the hook for fees if you ultimately get denied.)
Disability should be a last resort. “It’s always better to work than be on disability,” Rabin says.
How should I tackle the insurance bills that arrive?
• “Open ’em,” says Erin Schneider, an American Cancer Society patient navigator at Rush. Letting the envelopes stack up in a deal-with-later pile is tempting, but that approach can quickly lead to collections notices. “It’s like anything else: Put something aside and then it grows into something really big,” says Susan Loeb, the benefits advocate. “Procrastination gets to be costly.” It doesn’t help that many of the papers that arrive are covered in abstruse abbreviations and frighteningly large dollar amounts but no instructions for you. Here is the quick-and-dirty summary of what it all is:
The hospital tracks what it has provided and sends a statement showing base charges. The insurer reduces these charges according to contracts with the medical providers. Of the remaining amount, the insurer pays the provider a portion, according to your personal insurance plan. The insurer should then send you an “explanation of benefits,” indicating how much is still owed. Soon afterward, the provider should send you a bill for this unpaid balance. It’s a lot of mail.
Loeb suggests organizing it by date of service, which is the date you actually received the care mentioned on all the statements. The computer-savvy might track it all with a spreadsheet, to see more information at a glance. If you are looking to simplify this mountain of paper, Schneider suggests looking only for bills with the tear-off portion and instructions on sending payment: “If it doesn’t say you have to pay, just ignore it.”
For people who feel buried by the paper, there are services for hire that can review the claims for you. They tell you what to pay when you have been billed accurately, and they call the insurance company to resolve errors or appeal denials. Locate one near you through the Alliance of Claims Assistance Professionals’ Web site at Claims.org. In some cases, the money a professional saves a patient in errors spotted or denials reversed can pay their fee. Most claims assistance professionals charge between $60 and $100 an hour.
What should I expect during follow-up care?
• Follow-up care presents its own problems. Many patients don’t foresee the continued anxiety they feel after they have been pronounced disease-free. “Some people have significant emotional scars. Some people may be physically changed,” says Richard Schilsky, an oncologist at the University of Chicago. “All those things can affect people’s relationships.” He says some studies have shown that cancer survivors can experience a condition similar to posttraumatic stress disorder.
“There may be that anxiety at scans and at follow-ups,” says Gauthier, the Rush psychologist. “Even after [patients] are finished with treatment, they’re always going to deal with some of this uncertainty.” Treatment offers regularity and a sense of progress toward beating the illness. Reaching the end of treatment and staring at the unknown that lies beyond it can be unsettling.
Know how to reach your doctors in case you are worried about symptoms after treatment. Keep going to a support group, if you have joined one; if you haven’t, there’s nothing stopping you from doing it now.
Most important, follow your doctors’ advice about when to schedule return appointments. Continue to see specialists periodically.
And figure out what is normal for you now. It may not be the same as before you were diagnosed, but different isn’t always worse. It can even be better. “It’s very easy to focus on the difficulty—which one can’t deny,” says Tobin, the psychiatrist at the U. of C. “It can also be an incredible time of personal growth, a time of bringing families together.” Sickness insists that we recognize human frailty, but more quietly, it reveals human beauty through generosity, charity, and warmth. It’s often the paradox of illness that when you look back at a period that was dominated by pain, what you see first is love.
illustrations: Harry Campbell