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The Anderson Network is a program of Volunteer Services at M. D. Anderson Cancer Center
Insurance confidential: Insider says knowledge is power by Mary Brolley
It’s complicated. Ricki Hasou is the first to admit that. People profiles: Benjamin Chang
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Honesty is the best policy: children and cancer
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Doctor, Doctor Tired of being tired?
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Resilience
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Hasou has seen the health insurance game from both sides. After a long career with a major insurance company, she joined M. D. Anderson in 2007 as a senior managed care analyst in the Department of Managed Care. Since then, she’s helped M. D. Anderson patients figure out how to deal with their managed care plans. For cancer patients who have insurance coverage, keeping up with the paperwork from their insurance carriers and health care providers is daunting. But Hasou offers a few simple strategies to make it easier.
Organization, record keeping essential While Hasou admits she doesn’t have all the answers, she specializes in helping people learn when and how to ask the right questions. “There are general guidelines that will help you navigate your insurance coverage,” she says. “Know your policy, ask questions when you don’t understand and learn how to appeal a denial. And write it all down.” As many patients have discovered when they’re dealing with an onslaught of mailings and e-mails from providers — especially during a long or protracted illness — it’s nearly impossible to remember whom you called, what you discussed and exactly when. continued on page 2
Sharing hope, support and understanding with anyone diagnosed with cancer, regardless of where treatment is or was received.
Insurance confidential continued from page 1
whether a certain treatment will be covered by your health plan before any costs are incurred.
Your insurance card yields insights In her teaching role, Hasou goes step by step through an enlarged picture of a typical health insurance identification card. Though this may seem simple, it provides a good deal of information and is essential to getting anywhere. The card contains identifying information about the cardholder and the policy, including copayment amounts. Perhaps the most important information of all, however, is on the back of the card — the address of the provider’s Internet site and its customer service phone number. Yet, because these details may help build or support a case, it’s crucial to track them in a notebook or maintain notes in a file. Knowing your policy means reading the materials sent or provided when you enrolled. Take your time, read through it, figure out what type of coverage you have.
First, define the terms Hasou spends a good bit of time explaining the terms for the most important elements of your coverage. Is your provider an HMO (health maintenance organization) or a PPO (preferred provider organization)? Does your plan offer in- and out-of-network coverage? If you receive care outside your network, what are the financial implications? And if your child is the one seeking care, which parent is considered the primary insurance holder? Beyond that, there are questions about the necessity of referrals from a primary care physician and/or a need for authorization for specific treatments. Many patients consider traveling to Houston to be treated at M. D. Anderson, so in- and out-ofnetwork benefits are one of the largest areas of concern. Every day, Hasou’s colleagues in Managed Care and in the Department of Patient Access Services go to bat for those who want to be treated at M. D. Anderson. Physicians and their staffs are also accustomed to stepping in to help assure coverage. One of the most helpful resources is the health plan’s case management department, Hasou says. It works with patients and providers to confirm
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Customer service personnel: your allies Hasou insists that the staff of the insurance company’s customer service department is or should be the patient’s or caregiver’s friend. “The person who answers the phone is your advocate,” she says. “He or she is there to help you.” Hasou’s advice? Take a deep breath. You’ll likely have plenty of time to do so while you’re on hold. Then, she advises, be polite but persistent. “Ask away. It’s OK to question a charge or a denial of coverage. If you’ve been refused, stay polite and businesslike. Ask how you can appeal the denial. There’s a process for all of this,” she says. When you appeal an insurance carrier’s denial of coverage, it’s important to follow the guidelines to the letter. Find out who should receive the appeal. Attach all requested documentation. And make copies of everything for your files, just in case. The nonprofit, nonpartisan Kaiser Family Foundation has an Internet site that includes helpful and practical information about health insurance policies, including a printable checklist on which to record the basics of your plan. The link may be found at www.kff.org/consumerguide/05-checklist.cfm. Knowledge about your insurance coverage really is power. Wade in.
Check out a video of Ricki Hasou sharing what patients should know about their managed care plans at www.mdanderson.org/ publications/network.
People profiles Focused on the positive by Laura Prus
Benjamin Chang believes anything is possible. Even after losing most of his vision to a brain tumor, he strives to inspire and encourage others. Chang graduated from Stanford University in 2005 and was beginning a successful career in California as a mechanical engineer. Then, after a visit to his doctor in Houston two years later, he was diagnosed with a brain tumor. Chang underwent surgery, then came to M. D. Anderson for a second opinion and radiation treatments. Though rarely able to leave his room, he was often encouraged by those around him. “The staff and volunteers tried to make M. D. Anderson a home rather than a hospital. They were all optimistic and tried to help in any way,” he says. The tumor affected his optic nerves, causing Chang to lose most of his vision. Realizing he might lose the ability to bike or run — two of his favorite activities — Chang was frustrated and sad. But despite his grief, Chang soon found perspective. “I’ve lost my good vision, but not my spirit,” he says. He stayed positive as he continued speech therapy and physical therapy. He also had rehabilitation to help him learn new techniques to live his daily life and continue his career.
Providing hope Chang later became involved in the Adolescent and Young Adult (AYA) Advisory Council through the Children’s Cancer Hospital at M. D. Anderson. “I wanted to provide hope to other people and to cancer survivors,” Chang says. Composed of former patients and employees, the council meets monthly to enhance the experiences of adolescent and young adult cancer patients. Since the group began in September 2009, Chang has enjoyed learning about other AYA patients’ experiences.
Through the council, Chang heard about LiveStrong Week, a week of fellowship presented by the Lance Armstrong Foundation and Canyon Ranch Institute that focuses on improving health for cancer prevention and survivorship. Chang applied to and was accepted into the program. “They liked my application because it was about providing hope and inspiration to others,” he says. The youngest participant at LiveStrong Week, Chang enjoyed sharing his experience with people of all ages. He learned about survivorship through the program’s wellness and nutrition classes, but the former athlete was most enthused when he found the gym was open all day. He continues to be upbeat and positive. “I’ve learned to appreciate the small things in life and realize their beauty,” Chang says. “I try not to rush, and I appreciate what I’m doing. I used to just breathe and live. Now I experience my life.”
For more information about the AYA Advisory Council, call 713-792-6767 or 713-792-6194 or log on to www.mdanderson.org/aya. 3
Honesty is the best policy by Laura Prus
“We cannot hide information from our children. If we attempt to, we’re telling our kids that they can’t trust us, and that it’s OK to lie,” Aschenbrenner says. To communicate most effectively, she suggests using real words, not euphemisms. The word “cancer” will help children distinguish and comprehend your illness. The word “sick,” however, may cause confusion and panic for children when they, too, become sick with a fever or common cold. Images and analogies also help children comprehend complex information. For example, Aschenbrenner compares a tumor to a bunch of grapes. Like a cluster of grapes, cells clump together to form a tumor. Also, grapes may fall off the bunch and roll away, much as cancer cells may leave the original site. The same technique may be used to describe your treatment. Chemotherapy is similar to a video game on a search-and-destroy mission, and radiation is like an invisible beam of light. Surgery, simply put, takes out the affected cells.
Start with ‘the three C’s’ Cancer is not a subject easily discussed with children. Yet, one in four people with cancer has a child. Although talking to your children about cancer may seem difficult, it is imperative that you provide them with honest information about your illness. Martha Aschenbrenner, program manager in the Children’s Cancer Hospital at M. D. Anderson, says that children of parents with cancer may have higher rates of anxiety, especially if they are not well informed. Children who sense something amiss within their family will invent explanations and assume it’s their fault. “Children know their parents very well,” she says. “They know when something in their family has changed, and because of their egocentric perspective, they often assume that they’re the cause of the change.”
Her advice?
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To avoid this misconception, always share honest information about your cancer. Speak to your children about your diagnosis and treatment to let them know what the side effects will be, how long they might last and how it might affect the family.
Aschenbrenner also emphasizes the importance of providing as much information as your children can comprehend. “I encourage parents to start with the three C’s,” she says. “It’s called cancer; it’s not catching; and it’s not caused by anything they did or didn’t do.” Depending on their ages, children will respond differently to the news. Children under 5 years old, for instance, may only repeat what was said, whereas children 6 to 11 years old may ask for specific details. “Children 6 to 11 will almost always ask if the parent is going to die. It’s a natural response to their dawning understanding that illness can lead to death,” Aschenbrenner says. On the other hand, teenagers are not likely to share their feelings and may confide in someone outside the family. It’s probable that they’ll think about the implications cancer might have on them and on the family. Although speaking with your children may be challenging, remember that there’s a learning curve for everyone. “Give yourself a break, and keep communication open,” she says.
The CLIMB program is a free six-week support program to help children whose parents or grandparents have cancer. If you are in the Houston area and are interested, call Marisa Minor in the Department of Social Work at 713-792-6826.
Doctor, Doctor Tired of being tired? We asked Carmen Escalante, M.D., professor and chair of the Department of General Ambulatory Treatment and Emergency Care at M. D. Anderson, about cancer-related fatigue — one of the most troublesome side effects of cancer and cancer treatment.
What characterizes the fatigue experienced by many cancer patients? Often, the fatigue experienced by cancer patients is not proportional to activities and is unrelieved by rest. Frequently, the patient feels “unrefreshed” upon awakening in the morning. Cancer-related fatigue is persistent and often distressing to the patient and may encompass physical, emotional and/or cognitive (mental) tiredness.
What do you say to patients who wonder, will I ever not be tired? In the majority of patients, fatigue does improve as the patient gets further from the end of cancer treatment. Often, the rapidity of improvement depends on the type and intensity of cancer treatment. Patients receiving multiple modalities (chemotherapy, radiation, surgery) tend to have more fatigue than those who receive a single modality. For a smaller number of patients, fatigue may not disappear following cancer treatment.
Other things that may help improve fatigue include conserving energy (such as sitting to do things that don’t require standing or using devices such as a shower chair), prioritizing daily activities, and delegating chores that can be done by others. For some patients, certain medications such as stimulants (methylphenidate, modafinil) may be helpful. Control of other symptoms that may increase fatigue — such as pain, depression, sleep dysfunction and anxiety — is also important.
Should patients suffering fatigue speak to their loved ones and physicians about how they feel? Yes. It’s important that patients discuss this symptom with their health care providers, families and friends. Health care providers can offer treatment and reassurance that fatigue is not a sign of worsening disease or recurrence of the malignancy, which is often a significant relief to the patient. Also, although many patients are hesitant to ask for assistance from families and friends, most are very willing to help. This may include taking on certain chores, bringing meals so that he or she doesn’t have to cook, or, most important, just listening to and supporting the patient.
What are a few things patients can do to address this debilitating condition? Exercise has the best evidence for improvement of fatigue. It also may help with other conditions such as weight control, anxiety and stress, cardiovascular disease, diabetes and lipid control. Patients who are not conditioned and have not recently exercised should start slowly and increase the length of time and intensity as their conditioning and stamina improve.
To see a video on this subject, go to the M. D. Anderson home page and choose the “Care Centers and Clinics” tab. Click on “Clinics,” then “Fatigue Clinic.” You’ll see the video under the “Resources” tab on the right side of the page. 5
Resilience: Reframing experience, redefining goals by Mary Brolley
We all know someone who has responded to seemingly unbearable hardship or loss with grace, restraint and even humor. What is the aspect of character that allows some people to endure illness or misfortune that might send another person into a spiral of depression, bitterness or anger? Is it resilience? Can it be taught or learned?
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Lois Ramondetta, M.D., associate professor in the Department of Gynecologic Oncology at M. D. Anderson, has given a lot of thought to what makes some of her patients face difficulties so admirably. But she thinks “resilience” may be too simplistic a term for this characteristic. “I worry that ‘resilience’ limits you. It’s a pretty big goal. It implies a bouncing back, a willingness to fight on, no matter what,” she says. “Sometimes what we hope is that our patients can achieve peace of mind. That may mean realizing that they’re doing or they’ve done all they can do.” Gynecologic oncologists, she says, have an unusually close relationship with their patients. “There’s an automatic intimacy with these types of cancers. We do both their surgery and their chemotherapy.” She believes that part of her role — beyond treating their cancer — is to help her patients achieve peace, sometimes by helping them stay in the present moment and not be consumed by worry or grief. “Sadly, a number of my patients will die of their cancers. So, instead of praying for a miracle, I might work with them to reframe their life goals.”
“It’s not my job to take away their hope,” she insists. “But it’s my job to prepare them for what is likely to happen. Sometimes I’ll say, ‘If there’s anything you’ve wanted to do or to say, now’s the time to do it.’ ”
In the ICU: faith, support systems help families cope As a senior social work counselor assigned to the intensive care unit, Karen Newman works with families more often than with patients. To get to know them, she often asks family members, “’What keeps you going? In the past, when you’ve dealt with difficult times, how did you get through them?’ “They nearly always credit their faith and their support system.” Sometimes, she says, families bond with others in the waiting rooms. Newman is impressed with the coping skills of most of these families, especially since many have traveled far from their primary support network. “I can’t imagine coming here — miles from their support — and heading straight into the unknown,” she says. “While patients are in ICU, it’s like a roller coaster,” Newman says. “One day the news inspires hope, while other days are full of despair. “Families who are coping, or are resilient, can address the situation. Their coping strategies help them come back the next day and start over, hoping it will be a better day.”
Looking out for caregivers Lakshmi Naik, assistant director of the Department of Social Work, sees the tightrope walk faced by caregivers who nurture and protect patients every day. She is concerned that they may begin to experience “compassion fatigue” or “compassion burnout.” “It’s a double-edged sword,” she says. “If they’re feeling burned out, it’s hard for them to help anyone else.”
Naik distinguishes between emotional endurance and resilience. “Yes, you can endure tough situations for a long time, but then you may burn out. Resilience means having the ability to come back.” What distinguishes truly resilient patients, caregivers and professionals is that they are “resourceful in recognizing the best ways to get back on track. They can develop realistic goals and keep moving toward those goals,” she says. Newman acknowledges the difficulty of dealing with cancer patients and families at such stressful, critical times for them. “Family members sometimes ask me how I can work with seriously ill patients and their families day after day. I tell them, ‘Because I get to meet people like you,’ ” she says.
Tips for caregivers • Know yourself. Recognize when you’re feeling worn down. •
Form good habits. Have a “burnout plan” you can implement when you see that you’re under extreme stress. For example, you might call a friend and ask him or her to take over one of your duties so you can get away.
• During your time away, do what you find relaxing and enjoyable. • Remind yourself of times when you’ve been able to soothe yourself out of anxious behaviors. • Seek professional help if you need it.
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The University of Texas M. D. Anderson Cancer Center Division of Public Affairs 156300/18050661 – Unit 700 P.O. Box 301439 Houston, TX 77230-1439
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network The Anderson Network is a program of Volunteer Services at M. D. Anderson Cancer Center. Address changes should be sent to: Mary Brolley The University of Texas M. D. Anderson Cancer Center Communications Office – Unit 700 6900 Fannin St. Houston, TX 77030-3800 Phone: 713-792-0658 Fax: 713-563-9735 E-mail: mbrolley@mdanderson.org Articles and photos may be reprinted with permission. Susan French, Executive Director, Volunteer Services Debbie Schultz, Assistant Director, Volunteer Services/ Anderson Network Mary Brolley, Writer/Editor, Network Laura Prus, Contributing Writer Gini Reed, Graphic Design Pamela Lewis, Chair, Anderson Network Steering Committee © 2010 The University of Texas M. D. Anderson Cancer Center
Page 8 Briefs Would you be willing to share your cancer experience with a newly diagnosed patient? If so, call the Anderson Network at 713-792-2553 or 800-345-6324 and find out about becoming a member of our telephone support line that matches patients and caregivers dealing with similar diagnoses and treatment plans. Especially needed are those who have experienced:
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Adrenocortical carcinoma Advanced gynecologic cancer Bladder cancer (especially women who still have their bladders) Gallbladder cancer Penile cancer Sarcoma
In addition, we are looking for:
• Survivors in their 20s and 30s • Those who speak languages other than English, notably Spanish Your story and willingness to listen could make the difference in another person’s ability to cope with this lifethreatening illness. The Anderson Network motto is “Sometimes the best help comes from someone who’s been there.”
www.mdanderson.org/andersonnetwork Save the date: Anderson Network’s Cancer Survivorship Conference — Sept. 24-25, 2010 713-792-2553; 800-345-6324